PALLIATIVE CARE author KAWALYA GERMAINE NELSON PRESIDENT INDIAN INSTITUTE 0783359928

Terms used in palliative care

Palliative care (WHO, 2002a) is an approach that improves the quality of life of patients and their families
facing the problems associated with life-threatening illness, through the prevention and relief of suffering by
means of early identification and impeccable assessment, and treatment of pain and other problems –
physical, psychosocial and spiritual.

Terminal cancer refers to an advanced stage when curative treatment is no longer useful, the disease is
assessed to be incurable and the patient’s condition is progressively deteriorating.
Holistic care: this is care of whole person and is more than only drug and physical care

Hope: Hope is a dynamic inner power that enables transcendence of the present situation and fosters a
positive new awareness of being.
Dignity: Dignity is the ‘state of being worthy of honor or respect’
 Threatened when there is loss of independence, a fear of becoming a burden, not being involved in
decision-making, lack of access to care, spiritual matters and even the attitudes of staff towards the
patient.
Resilience: Resilience is about the ability to thrive in the face of adversity and stress: ‘The capacity to
withstand exceptional stress and demands without developing stress-related problems.

Hospice This is a Latina word that means hospitality.

The major aim of hospice is to put life in the remaining days of a patient. It gives the possible quality of care
for patient and their families form diagnosis of illness through critical episodes, end of life and bereavement
support.

History of palliative care

Palliative care is not a building but a philosophy of care. This form of care was introduced by
Dame Cicely Saunders, who was initially a nurse and then become a medical social worker and later a
physician. It commenced in the modern sense in 1967. In the olden days Hospice referred to a place of shelter
and rest for ill travelers on a long journey (pilgrimage).
In Uganda, many patients used to die with a lot of pain and leave their families devastated by the fact that
illnesses affecting their loved ones were incurable. The health care providers would feel that there was
nothing else to do.
Hospice services were started in Nsambya Hospital in 1993 by Dr. Anne Merriman and since then organization
as well as hospitals have come up to offer palliative care services in Uganda such as Hospice Africa Uganda and
Mild may Uganda. This service has further been extended to other parts of the Country by training specialist
nurses and clinical officers who then deliver this care.

Realities about palliative care in Uganda are that;

 Patients report late for treatment
 Patients get lost to follow up

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  There is increasing cancers with the increasing HIV epidemic and
 There are too many patients in hospitals and in the communities making it impossible to reach every
one.
 Reaching everyone is not yet possible due to poor infrastructure, limited funds, knowledge gaps among
health workers and patients.
These challenges can be overcome when we work together with the village health care teams including the
traditional healers to enable us reach many.

Palliative care in children

The WHO say that "Palliative care for children is the active total care of the child's body, mind and spirit, and
also involves giving support to the (amily. It begins when illness is diagnosed, and continues regardless of
whether or not a child received treatment directed at the disease. Health providers must evaluate and
alleviate a child's physical, psychological and social distress. Effective palliative care requires a broad
multidisciplinary approach that includes the family and makes use of available community resources; it can be
successfully implemented even if resources are limited. It can be provided in tertiary core facilities and in
community health."
Children languages (listed in the order in which they learn them): '
 Body language
 Play language
 Spoken language

Aims of palliative care

 Providing relief from pain and other distressing symptoms;

 Affirming life and regarding dying as a normal process;
 Intending neither to hasten nor to postpone death;
 Integrating the psychological and spiritual aspects of patient care;
 Offering a support system to help patients live as actively as possible until death;
 Offering a support system to help the family cope during a patient’s illness and in their own
bereavement;
 Using a team approach to address the needs of patients and their families, including bereavement
counselling if indicated;
 Enhancing quality of life, and sometimes also positively influencing the course of an illness;
 Being applicable early in the course of illness, in conjunction with other therapies that are intended to
prolong life, such as chemotherapy, radiation or antiretroviral therapy (ART), and being inclusive of
those investigations needed to better understand and manage distressing clinical complications;
 Responding to people’s beliefs and practices as well as their social and cultural values.
 A balanced approach to care is needed, balancing the benefits of investigation and treatment against
the burdens of possible harm – and thus ensuring quality of life. The following questions should be
considered:
 Is there a reasonable chance of benefit to the patient?
 Will the intervention be likely cause harm to the patient?
 Is the intervention a proper use of available resources?
 What are the patient’s wishes?
 Respect for patient autonomy and choice is vital.
 There is a need for open and sensitive communication for all concerned.
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Focuses of palliative care:

 Palliative care focuses on the following: pain, shortness of breath, fatigue, constipation, nausea, loss of
appetite, difficulty sleeping and depression.

 It also helps the patient to gain strength to carry on with daily life.

 It improves the patient’s ability to tolerate the medication.

 It helps the patient t have control over h/her care by improving h/her understanding of h/her choices for
treatment

Principles of palliative care

1. Holistic care approach. This involve use of modern methods relieve pain e.g. oral morphine, also physical,
psychological, social, spiritual and cultural supports are involved..

2. Patient centered. Sustain hope with realistic goals in order to help patient and families cope in appropriate
way through the different phase of the illness.

3. Teamwork and partnership. It is not easy to address all patients’ needs alone. An interdisciplinary team
should be established to deal with all the problems. i.e. no single profession can address all issues that
cause total pain. Team members share challenges facing the patient and plan effective management of the
patient using their skill mix.

A palliative care team includes:

 Nurses
 Doctor
 Social workers
 Religious leaders
 Teachers
 Community health providers > Others as appropriate.

4. Appropriate ethical consideration. There are many ethical issues that arise in care of all patients. Sick to do
well or do harm patients’ rights must be considered to decide fairly i.e. The caring team should always
observe appropriate ethical issues under the four pillars of medical ethics.

5. Continuum of treatment. This involves management of pain and other symptoms i.e. Palliative care can be
started right from the time of diagnosis and should continue even after death (bereavement care).

Holistic care

Holistic care: this is care of whole person and is more than only drug and physical care

Components of holistic care

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  Physical care: assessment and management of pain and other symptoms. It s important because if
physical symptoms are with them if they controlled other aspects will be different to carry.

 Psychological care: effective communication skills are utilized in care of these patients. Tey require
much support.

 Spiritual care: this is important to terminally ill and it includes allowing patients to express their
spirituality, praying with them if they request for arranging for an appropriate leader to visit them.

 Family support: terminal phase of illness is often very difficult for patients’ family. Support therefore
needs to be offered to the family. It includes spending time, listening and giving support to them.

 Social care: this incorporates discussion of social and family issue e.g. young children who will be
orphans and financial issues

The WHO enhanced Public Health model for palliative care

Policy
 Adoption and implementation of appropriate health policies is key to the provision of palliative care.
 Policies may include a national health policy, an essential medicines policy and a palliative care policy.
 Policies need to include providers’ roles and responsibilities regarding palliative care, including who
can prescribe.
Drug Availability
 Access to palliative care medicines is crucial for ensuring effective pain and symptom management.
 Across Africa, many medicines required for palliative care remain unavailable – e.g. opioids such as
morphine, which are critical to the effective relief of moderate to severe pain.
 Barriers to access to medicines include supply, legislation, education and practical issues such as
distribution.

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  Increasing access involves increasing prescribers, and there is a growing trend towards task shifting
across the region.
 An essential medicines list for palliative care is a useful tool for enabling access to
Education
 Palliative care education should target diverse audiences (e.g. policy makers, healthcare workers,
nonprofessional health workers and the general public) to increase their awareness, skills and
knowledge of, and to change their attitudes to, the discipline.
 Palliative care training needs to be ongoing. It should be provided during initial pre-registration training
as well as during in-service and postgraduate training programmes, and tailored to the roles and
responsibilities of different cadres of staff.
 As palliative care is relatively new across the African region, education and training is vital.
Implementation
 Without effective implementation, the other components of the enhanced WHO public health model
are redundant.
 It is therefore important that African governments and donors ensure that there are sufficient funding
and appropriate service-delivery models in place to support the expansion of palliative care in their
respective countries.
Role of palliative care
The following are the roles of palliative care.
 It affirms life and regards dying as a normal process
 Provides relief from pain and other distressing symptoms
 Integrate the psychological and spiritual aspects of patient care
 Offer a support system to help patients live as actively as possible until death
 Offer a support system to help the family cope during the patient’s illness and in their own
bereavement

Modals of palliative care

Health facilities based: Palliative care is provided either in hospital at the outpatient department or in other
clinics as designated by the in-charge. Health Centers IV and Ill with palliative care trained health workers
provide palliative care services using a facility palliative care team.

Health facility Outreach programs: specialist palliative care health workers travel to other center to provide
palliative care. Palliative care in this modal is provided by palliative care trained health workers. The team
moves to the community to provide palliative care services closer to die community. Facility outreach
programmes are important in that they bring the services nearer to the people. Hence patients do not have to
walk long distances and a mass of people can be seen within their villages.

Roadside clinics/stopovers: This is a model of care that enables patients who live far away from health
facilities to access palliative care. Health care providers plan with patients and their caregivers to meet- in art
identified place along the route or on their way to an outreach. They make a stopover in an agreed place. The
place location can be a trading centre, under a tree, at a particular signpost or at a school.

Facility day care: This is when a day is set aside for the patient and their caretaker to spend time with other
patients in at the facility. This facility could be a hospital, health centre a hospice. This activity enables
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recreation as well as socialization. Patients get to share their challenges encounter during the disease
trajectory arid even counsel themselves. They interact as they enjoy lunch or tea, they also get an opportunity
to see their nurses or doctors at the site and have they needs attended to.

Home based palliative care model: This means a delivery of a comprehensive package of care to the patient
and the family at home. The package includes spiritual, psychological, pain and symptom management as well
as support in activities of daily living. This model of care is best provided by a specialist palliative care team
working in partnership with trained community health volunteers.

Community day care: It is similar to facility day care except it is done within the community. Health care
workers move to the community and spend the day with patients at a designated area in the community, it
could be at the church, health centre community hall or someone’s home.

Challenges for implementing palliative care

 Perception and recognition: many people still fear palliative care because they link it to death and
many do not want to admit that they are dying. It is also common with health worker, policy makers
and others.

 Policy development; sustainable, affordable and effective palliative care must be an integral of a
country’s health system. To achieve this there must be coordination with all health sectors. Some
policies prohibit use of oral opioids, so advocacy for change is important

 Education: health providers and community members need to be educated on diagnosis, classification
and application of holistic approach. Training should be in medical/nursing schools

 Drug availability: here are limited recourses including limited drug budget a palliative drugs are given
priority because they are for symptoms relief. It is important for these drugs to be included in the
essential drug list.

Note: the objective of hospice Africa and Uganda in 1993 are now

1. To provide palliative care services to patients and families with a 20km radius of Kampala. And to
promote this care throughout Uganda.

2. To carryout education programs in palliative medicine to health professionals at underground and

post graduate levels throughout Uganda so that this form of care be available to all patients in
need.

3. To serve as a model of palliative care for initial of hospice/palliative care in other African countries.

How do people know about organization?

Patients admitted in Hospitals are referred to the organization on a special referred form, others hear about it
from friends, relatives, and mass media or community volunteers. Hospice care for patients in their homes if

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they live within 20km from the Hospice facility. Patients are visited 3 times while in Hospital and when stable
on the Hospice drugs, they are discharged with supply of drugs to last for a month.

On discharge the patients and the family are explained fully the reason for the drug an importance of taking
them as prescribed, undesirable effects of the drug, how and to overcome them.

What does the patient family do when the drugs are finished?

The patient and family are instructed to send a close relative a few days before the patient runs out of the
supply.

The person should be someone who is able to understand and is able to explain fully how the patient is fairing
on or if the patient is strong enough can be brought to the center for review.

Special considerations related to HIV and AIDS

 Palliative care should be an integral part of the comprehensive care for people living with HIV and AIDS
from the time of diagnosis.
 HIV and AIDS is complex clinical because of the course of the illness is unpredictable and the
presentation is variable.
 Prevention and treatment of opportunistic infections (OIs) are key components of palliative care.
 Many patients with HIV and AIDS also have cancer.
 Antiretroviral (ARVs) do not cure HIV but delay its natural progression. However, numerous pills, food
restrictions, side effects, toxicities, drug-to-drug interactions and complex regimens affect quality of
life.
 Many people in the African region do not have access to ARVs, and some of those who do will not
respond well or will not adhere to the strict regimens required.
 The emotional, social and economic impact of the illness is substantial, with the challenges of fear,
stigma, rejection, repeated bereavement and conflicting messages all of possible significance for an
individual.
 Often, many people in the family will be infected and parents may be being cared for by young
children, and in child-headed households, the children will be caring for other children. Both of these
situations pose a challenge to the provision of care.
 As in other areas of palliative care, promoting quality of life is the focus, with excellent symptom
control, effective communication and appropriate support for the patient and their family. However,
fear and stigma can make this a challenge.

COMMUNICATION IN PALLIATIVE CARE

 Communication (as a generic process) is a two-way process between two or more persons in which
ideas, feelings and information are shared, with the ultimate aim of reducing uncertainties and
clarifying issues.
 Communication only becomes complete when there is feedback.

Types of communication
 Verbal communication is the exchange of ideas through spoken expression in words. It is a medium for
communication that can entail using the spoken word, such as talking face-to-face, on a telephone, or
through a formal speech; similar communication can occur through writing.

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  Non-verbal communication involves the expression of ideas, thoughts or feelings without the spoken
or written word. This is generally expressed in the form of body language that includes gestures and
facial expressions and, where appropriate, touches.
NB: Both verbal and non-verbal communication is important in palliative care.

Little communication actually takes place verbally, racial expressions gestures and posture form most of our
communication and are a graphic part of our culture and language. Studies show that during interpersonal
communication 7% of the message is verbally communicated, while 93% is non-verbally transmitted. Of the
93% non-verbal communication:
 38% is through vocal tones
 55% is through facial expressions
There are four major skills in communication:
 Listening
 Checking Understanding
 Asking Questions
 Answering Questions
(a)Listening
The first and perhaps the most important skill is to be a good listener. We have to be able to listen in order to
understand the patient and family needs.
How well do we listen?
Show that you are listening by using the following techniques:
 Pay attention to the person you are communicating to.
 Use body language to show that you are paying attention.
The following acronym can help to remember the key points about suitable body language that indicates
paying attention: (ROLES)
R - Relaxed
O - Open
L - Lean forward
E - Keep eye contact
S - Sit near the person
Tips for effective listening:

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  Encourage the person to talk and (aep on nodding your head or use an appropriate facial cxpress ion.
 Do not yawn, fidget, look around or out of the window or do any other things that indicate boredom or
impatience.
 Observe the persons non-verbal communication and reactions, this can help interpret the person’s
feelings
 Use silence constructively. Sometimes a person may stop talking. He/she may be thinking about the
situation, do not hurry them to talk
 It is very important not to interrupt the person when heJshe is talking =-. Listen and try to
understand what the person is saying verbally.
 Remember accurately what the person has said.
 Listen with empathy (put yourself in their shoes and not judge them)
Barriers to effective listening:
 Distractions: phones ringing, people coming into the room etc.
 Judgmental fixations: judging patient by imposing one’s own values/morality (often religious).
 Filtered listening: interpreting what you are bearing through your own experiences, culture and
background.
 Prejudice and preconceived bias: judging someone by the way they dress, their tribe, gender,
profession.

(b) Checking understanding

It is important to check that we have understood them correctly as it:
 Let them know we have been listening carefully. Lets them know we are trying to understand.
 Gives an opportunity to them to think again about the problem.
 Helps them to think about how to cope with the problem.
How do we check understanding?
 Paraphrasing what the parson has said as key points during the conversation, by using words hke; You
have told me that
 Clarifying what the person has said, by checking you have understood correctly. using words like, ‘So,
you mentioned you are worried about three things but school fees is the biggest problem, is that
right?”
 Reflecting by identifying the feelings of the person, using words like, It seems you are very worried
about this
 Summarizing. This happens during and at the end of the conversation. Expressing in brief and
highlighting the key points of the story the person has told you.
c) Asking Questions
We ask questions in order to help the person:
 Explore his/her problems more fully.
 Think more about his/her situation and perhaps find a way of coping with their problems.
 Explain what she already knows or understands about a situation i.e. facts about HIV/ cancer
 See that we are trying to understand them and the problem they are facing.
 Prioritize problems and thus help to focus the session.
 Move at their pace and enable dialogue between the counselor and the person seeking help.
How do we ask questions?
There are two kinds of questions:
 Closed questions: These questions usually receive no more than a ‘Yes’ or “No” answer and are
generally very specific e.g. Are you married? ’No’: ‘Do you have pain” “Yes’.
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  Open ended questions: These are questions which invite a person to talk and explain. They usually
begin with; What, Where, When, Row? e.g. How did you feel when you were told your diagnosis?
Open ended questions permit the person to choose how to respond, and examine the situation more
clearly.
Points to remember when asking questions;
 It is helpful to use a mixture of open and dosed ended questions. Closed questions help to structure
the session and identify facts, and open questions help the patient to express feelings, opinions and
experiences.
 Ask one question at a time, it is confusing to ask so many questions at a go.
 Use key words from the person’s explanation to phrase another question.
 Be tactful when asking personal or sensitive questions as it can take time to develop trust, and some
questions can be asked later once trust has built up.
 Use simple and clear language when asking questions.

d) Answering Questions
Points to remember when answering questions
 Behind every question, there is usually a problem, worry or concert’.
 Avoid answering “Yes” or ‘No’. It does not help the health professional to effectively understand the
client’s situation or what the patient and family know about their illness.
 When answering the clients’ questions or discussing the clients’ concerns, give information rather than
advice or false reassurance.
 Avoid suggesting to the patient and family what to do, but put forward a suggestion for discussion,
 Always give accurate information. Be honest, it is alright to say. ‘‘I don’t know”.
 Answer questions using simple and clear language. Complicated medical jargon can confuse the patient
and their family.
 After giving information, check whether the person has understood the information and ask the person
what he intends to do about the situation?
 Remember people ask questions when seeking for help.
 Sometimes there is no obvious answer’ to give a question, such as ‘Why has God done this to rue?” but
listening to the patient and helping then, explore the feelings behind this statement can be very helpful
to him/her.

Qualities attitudes needed in communication

The qualities needed in communication with patients and their families include the following:
 A desire to help - In order to communicate well with our clients we should have an inner urge to help
the patient and his/her family members.
 Patience - when patients and families come to us, they may be unsure of what to say to us. Allow them
to take their time while expressing themselves, This calls for a high degree of patience although you
may be busy.
 Honesty
 Genuineness - This involves being sincere and free from pretence with patients. Try to be honest to
patients and their family members if you are to win their trust.
 Openness
 Dependability - Information giving and communication must be accurate and clear. This will enhance
trust and future communication with the patient.
 The ability to put others at ease - this involves creating rapport with the patient.
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  Respect for others and their decisions - handle each patient as an individual with respect for their
beliefs. values and attitudes. Refrain from judgment.
It is also to have a positive attitude that is:
 Non-judgmental
 Accepting
 Caring
 Empathy
 Respecting
Summary of key points
 Effective use of communication skills and a positive attitude are part of the therapeutic process, and
often play a great part in patient well-being.
 Listening holistically, caring compassionately, and being present when needed, may be the most
meaningful gifts a professional career can give particularly towards end of life.
Key aspects that should be targeted by communication in palliative care
 All aspects which make an individual complete, i.e. psychological, spiritual, social, cultural and physical
aspects;
 Prognosis and goals of care, as these are essential for quality care;
 Disclosure, diagnosis, prognosis, transition to palliative care and the holistic care plan;
 A patient’s fears and concerns;
 Disease progression and end-of-life care issues, such as the use of aggressive treatments in the end-of-
life stage,
 decisions on readmission, review of medications, family rituals and the family’s role;
 Patient and family styles and practices for coping with grief, loss and bereavement, and the support
required
 from care providers;
 Discussions about the future, as this is vital if patients are to be permitted the dignity of deciding how
to spend
their remaining time.
In children
 The beliefs and values of a child patient and their family regarding death and dying, and assistance to
prepare and plan for death by discussing expectations in order to reduce fear and encourage
involvement;
 End-of-life issues and the anticipation of the death of a child patient, each being honestly discussed
with the child and their family.
 Give the child the opportunity to say goodbye and express last feelings and wishes.
 Bereavement counselling and support for children.
Principles to help care providers communicate effectively
 Communicate with sensitivity, empathy, compassion and support to the patient and family.
 Listen attentively and allow tears and emotions to be expressed without rushing the patient.
 Check for understanding, because miscommunication is common as a result of language, culture, the
environment and stress.
 Take into account the family and its ethnic, cultural and religious roots.
 Family meetings are useful for identifying and meeting the patient’s and the family’s informational and
care needs, as well as for understanding the family’s dynamics.
 Debriefing is available for caregivers who need support following the death of a patient whom they
have been caring for.
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  Pay attention to the patient, family members and fellow care providers.
 Be aware of the importance of non-verbal communication such as facial expressions.
 Use clear and suitable language (i.e. that which is understood by the patient), and use an interpreter
where necessary.
 Ask appropriate questions and allow the patient and family to ask questions each time you see them.
 Ensure that the patient and family have understood what you are saying, and that you have
understood what they are saying, by asking questions, paraphrasing, summarising etc.
 It is easy to unintentionally miscommunicate and not understand others, due to common physical,
psychological and socio-cultural barriers such as language, culture, stress, environment etc. Care
providers must identify and address any such barriers for effective communication to happen.

Benefits of Effective communication:

 Identifies and aims to address all the needs of the patient, family and care provider (i.e. psychological,
spiritual, social, cultural and physical issues);
 Provides information according to the patient’s preferences (whether good or bad news);
 Invites the patient to share their agenda in a conversation;
 Aims to communicate the truth by means of accurate essential information;
 Facilitates appropriate referrals, inter-disciplinary assessment, continuity of care, discharge planning,
end-of-life care and bereavement support, as well as conflict resolution and stress management;
 Advises on the resources available to address holistic needs and concerns;
 Provides patients with a sense of security, consistency and comfort;
 Educates family members and care providers on how to manage pain, distress and other symptoms in
the patient and how to communicate effectively;
 Aims to improve relationships at all levels, including those involving family members, care providers
and the community;
 Documents as appropriate the main discussions with the patient, family and other care providers;
 Ensures a good flow of information within and between organisations involved in service delivery;
 Family members often recall in detail the sensitivity (or lack of it) of the doctor and staff as their
relative was dying. These memories affect the grieving process: how the family was told about what
was being done, how they were informed of the changes in the medical situation, and especially how
attentive the doctor and staff were in controlling the patient’s distress and physical symptoms.
 Effective communication fosters a very strong relationship between the caregiver and the patient as
well as family members.
 Truthful communication about the future is also vital if patients are to be permitted the dignity of
deciding how to spend their remaining time.
 Good communication maintains effective professional relationships, which fosters a high standard of
care
 Communication is seen as a therapy, which is used to help the patient to either cope with or solve the
problem.

Possible consequences of ineffective communication in palliative care

 Not communicating accurate essential information to patients may provoke greater problems.
 Protecting patients from the reality of their situation often creates further problems and can lead to
inconsistent messages being given by other members of the inter-disciplinary team.
 Hiding the truth often leads to conspiracies of silence that usually build up to a heightened state of
fear, anxiety and confusion, rather than provide one of calmness.
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  Poor communication is a threat to patient care and can lead both to mistrust and to a source of staff
stress.
 Communicating effectively is essential for engaging the patient and their family in their care.
 Not communicating about the nature and seriousness of an illness can lead to a lack of planning for the
future – e.g. not writing a will, not planning who will take care of the children.

H. Special considerations in HIV and AIDS

 A diagnosis of HIV presents the affected individual with the prospect of a life-threatening illness along
with the stigma associated with the disease.
 There are strong emotions associated with HIV and AIDS which increase anxiety and therefore impact
on effective communication – e.g. the fear of rejection by others, the fear of infecting others, anger
and a sense of betrayal, a sense of shame for having contracted the disease, worry about how to cope,
worry about the family.
 Disclosure of their status is an important topic to explore with patients – they may be trying to
maintain a position of respect with their children, or be afraid of being abandoned if the family finds
out their status.
 Adherence to the specified drug regimen is key to the success of ART, and good provider–patient
communication is key to adherence.
 Communication issues that are key to successful adherence include:
 Proper education and counselling before initiation of ART
 Information on HIV and its manifestations, benefits and side effects
 Involvement of peer support in the patient’s treatment
 Psychosocial support to minimize stigma
 Culturally appropriate adherence programmes.
 Support groups across the African region have proved to be successful in providing emotional
and peer support, and in helping individuals to cope with HIV and AIDS.
Barriers to communication
 Impairments e.g. some illnesses may affect the hearing or vocal capacity of patients.
 Limited knowledge especially by the service provider.
 Extreme pain on the side of the patient may affect communication.
 Conspiracy of silence - some careers may choose not to disclose information to the patient or vice
versa.

Communication in children palliative care

 The life of the very young child is centred in the family and in the people who care for him or her.
His/her development depends on the attention and care they are given.
 Through talking and playing with, and watching others, and taking part in household life he/she
develops physically and emotionally. As he or she grows, so does their understanding of language and
capacity to express thoughts and feelings.
 In most societies children soon have a network of relationships with people of different ages, both
adults and children. Besides the immediate family they learn to communicate with the extended
family, friends, and neighbors.
 They need these rich social opportunities as well as the care and guidance of intimate adults to
develop emotionally and intellectually. Often adults make the mistake of thinking that children under
the age of seven or eight arc too young to notice what are going on.

13
  Disclosure is a particular challenge with children and adolescents, with their carers often not wanting
them to know their diagnosis.
 Adherence in children, particularly if they are not aware of their illness, can be a challenge.
Good communication skills while dealing with children
 Good listening skills,
 Showing interest in the child,
 Age related communication,
 A non-judgmental attitude,
 Empathy,
 Maintaining confidentiality,
 Being open and honest with the child,
 Respect the child and families culture and beliefs,
 Being patient with the child and allowing them time to express themselves.

Principles of answering difficult questions in children

 Where possible, communication with children needs to be with people they trust, people who love
them and give them a sense of security. Therefore it is important that you build a relationship with the
child so that they trust you.
 Treat each child as an individual. Start by assessing what they already know and understand. Use
games, stories, writing etc as appropriate.
 Always answer a question with a question until you know what exactly is being asked.
 You can use the "WPC Chunk" technique (Warn, Pause, Check, Chunk):
 Worn the child that you want to say something that he might find difficult
 Pause: wait until he gives you a sign that it is OK to continue. If you get the
 OK, break a small "chunk" of the news to him
 Check: after you have broken the chunk of news, check back that he has understood and
whether he wants to continue
 Repeat the process, one chunk at a time, until he signals he has had enough or until all the bad
news has been broken
 Although it can be hard to answer some of the difficult questions that children ask, children can
tell when you are avoiding answering them, and it is also important never to lie to a child.
BREAKING OF BAD/SAD NEWS
Introduction:
Breaking bad news to patients and their families is one of the most difficult responsibilities in health care.
However for many health professionals their medical and nursing training has not prepared them for this
daunting task. Without proper training, the discomfort and uncertainty associated with breaking bad news
may lead health professionals to either emotionally disengage from patients, or avoid giving them the news at
all. Breaking bad news about a terminal illness demands skills in listening, observation and empathy, as much
as the ability to find the right words. The way in which bad news is broken to the patient is extremely
important to their well-being.

Definitions
Bad news is any news that drastically and negatively alters the patient’s view of his or her future”
“The impact of bad news depends on the size of the gap between the patient’s expectations, including his or
her ambitions rind plans, and the (medical) rectify of the situation” (Buckman 1984)
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Importance of breaking bad news
 In order to maintain trust.
 In order to reduce uncertainty (the hardest of emotions to bear).
 To prevent instilling false hope.
 To allow for appropriate adjustment (practical and emotional) so that the patient can make informed
decisions.
 To prevent a conspiracy of silence which destroys family communication and prevents mutual support?
“Breaking bad news is like major surgery. Whether we like it or not we are inflicting a psychological injury
which is every bit as damaging as the amputation of a limb. Like on amputation it requires time, planning and
do proper place to carry out the operation.”
Skills for breaking bad news
 Listening
 Observation
 Empathy
 Ability to find right words to use
Barriers to breaking bad news
There are many different barriers to breaking bad news include:
Patient barriers:
 Denial
 Lack of understanding.
Family barriers:
 Collusion.
Health professional barriers:
 Feel incompetent.
 Fear of causing pain.
 Avoid getting blamed.
 Fear of the medical hierarchy.
 Feel they’ve failed the patient by not curing them.
 Wanting to shield the patient from distress by saying I’m sure everything is well1’.
 Fear of showing emotions. Not having enough time.
 Fear of saying: “I don’t know”. Have fears of own iflness and death.

Considerations for the process of breaking bad news:

Location:
 Ensure that there is privacy where possible i.e. a separate room is ideal, but may not be practical, and
talk quietly sitting close to the patient.
 Ensure that you have time to talk to the patient without rushing, interruptions or distractions.
b) Establish existing knowledge about their condition:
 Ascertain what the patient knows about their condition.
 Special attention should be paid to specific terms the patient uses, e.g. growth, tumour, Cancer.
c) Communication skills:
 Use open-ended questions.
 A gentle tone of voice is important as is the pace of information given.
 Use suitable non-verbal communication; this should include a solemn expression and not being afraid
of silence.
 Be consistent and use simple language, especially avoiding the use of jargon.

15
  Try and enable the person to come to their own conclusions, if possible.
d) Tell the truth:
 Never he to a patient, but be very gentle with the actual breaking of bad news.
 After informing the patient of bad news try and give hope in the form of what car’ he undertaken to
control symptoms and improve the quality of life left.
 Do not give false hope of a cure to a patient.
 Check whether the patient has understood what has been said, by having them repeat what you have
told them.
 Give reassurance about continued support, and arrange another appointment to see them again.
 Encourage them to ask questions.
 It the patient agrees telling the patient and family together can avoid mistrusts and gives them
opportunity to support each other. However, the patient’s permission must be obtained, especially in
cases of AIDS.

The six-step protocol for breaking bad news:

The six step protocol outlined is based on that in Robert Buckman book, “I-low to Break Bad News”, which is
an excellent text for anyone wishing to examine this area further.
Step I: Getting started
Getting the physical context right - In practical terms whenever you start an interview about bad news, spend
a few seconds getting the physical context right. It is worth investing some time and thought in practical issues
such as:
 Where on interview about bad news will take place
 Who will be present?
 How you will start off
These simple things can help both the professional career and the patient to feel more at ease, which will aid
communication later in the conversation.
Where? If possible use a separate roam where you can sit down together in privacy. If this is not possible, and
the patient is in hospital, try at least to screen off the area you will be talking in. This does not prevent others
from listening, but the patient does not have to cope with the bad news in full view of others. You will
probably be more comfortable coo, and ass likely to led that you are performing, with all the addition that
stress brings.
Who? - If there is a visitor with the patient ask her/him gently to give you some time to talk with the patient.
Some patients may wish to have a particular relative present when they are told bad news, and this option
should also be given.
How do you start? - Ensure that the patient is comfortable. Greet the patient by name, and introduce yourself
if the patient does not know you well. Begin by asking a question such as how are you feeling today?” This
shows that you are interested in his/her condition, gets the patient talking, and a flows you to assess
something of the patient’s current symptoms (if the patient is in pain, or feeling nauseated, that should be
addressed if at ali possible before launching into a sensitive conversation).
Step 2: Finding out how much the patient knows
Establish what the patient already knows about their condition, how serious they think it is, and how they
expect it to affect the future. Useful starting phrases include:
 What do you understand about your I/ness so far?’
 What have the previous doctors told you about this illness?”
 Have you been concerned that this may be something serious?’
 Listen to the patients response carefully. This will help you interpret the patient’s understanding of the
medical situation; give you information about the patient’s emotional state and educational level.
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 Encourage the patient to tell his/her story and watch out for non-verbal cues. This will help you later to
explain things at a level, which is appropriate.
Step 3: Finding out how much the patient wants to know
By establishing how much the patient wants to know. we are allowing them to exercise their preference and
for those who genuinely do not want to know, we are not robbing them of their denial mechanism. Some
suggested questions that you could use include:
 Would you like to know what is going on?
 Would you like to know the full details of your condition?

Step 4 — sharing the information

This involves two main components:
 Revealing of information by which the professional communicates information to the patient:
 It is vital to start from the patient’s point of view, and to reinforce the information the patient has given
you before progressing further.
 Commence the process of educating the patient. This is aimed at bringing the patient’s perception of
the situation closer to the medical facts.
 Information needs to be given in small chunks, and using a warning shot is very valuable, especially if
the news is unexpected
 Use simple language and avoid medical terminology as much as possible.
 Therapeutic dialogue by which the professional listens to, hears, and responds to the patients reactions to
the information
 Check patient understands frequently and clarify where necessary. Throughout the session it is
essential to provide support to the patient, especially through active listening which is particularly
important in establishing the patient’s agenda and enabling a blending of your agenda with the
patient’s.
 Encourage questions and give time
Step 5—Responding to the patient’s feelings
 Observe for emotions such as tearfulness, silence and shock.
 Help the patient to name their feelings
 Encourage and allow patient to express their emotions, let patient know you understand and acknowledge
their emotions.
 Try to understand what the patient is feeling (empathize).
Step 6: Planning and follow—through
 Demonstrate an understanding of the patient’s problem list and get the patient to prioritize problems.
 Manage the manageable - an important part of breaking bad news is to provide treatment and care
options to the patient
 Work with the patient to plan and identify coping strategies. Patients who have a clear ptan for the future
are less likely to feel anxious and uncertain.
 Identify and incorporate other sources of support.
 Allow questions and make a clear record of the conversation of the options discussed and future plans.
 It may be helpful if the patient has an option to talk to the health worker delivering the bad news at a ]ater
stage.
 Summarise for the patient.

The following actual steps to breaking bad news about an illness are helpful:
 Prepare well. Know all the facts before meeting the patient/family.
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 Introduce yourself and let others introduce themselves to you and state their relationship to the patient
 Review and determine how much the patient already knows by asking for a summary of events. You can
ask, ‘Can you bring me up to date me on your illness and how things are now?’ but don’t not make
assumptions
 Check that the patient/family wants more information and how much more. You can say, ‘We have more
results now. Would you like me to give you an update on what we know? I will go step by step and you can
stop me whenever you want.’
 Indicate that the information to be given is serious. You can say, ‘I am afraid it looks rather serious,’ and
then allow a pause for the patient to respond.
 Present the bad news in a direct and concise manner. Use lay terms such that there is no
misunderstanding
 Then sit quietly as long as it takes. Wait for the patient to respond and then you can start from there.
 If there is no response after a prolonged silence, you may gently say something like ‘tell me what you are
thinking’
 Encourage expression of feelings – this is the key aspect in terms of patient satisfaction with a session.
 Confirm and regulate those feelings. It’s okay to interject personal statements if appropriate for example I
lost my husband last year and I know how you feel’.
 Listen to concerns and ask questions. You can say, ‘what are your main concerns at the moment?’ or ‘What
does this mean to you?’
 Give more information if requested, systematically and in simple language.
 Assess thought of self harm.
 Consider involving social workers, religious leaders etc.
 Wind down the session by summarizing issues that are raised and plan with the family the next steps.
 Make yourself available to discuss the illness further, as needed.
 Provide a follow up plan. This is very important as patient or family will have further questions once the
information has been understood.

Patients’ reactions to receiving bad news

Patient’s reactions to bad news may include denial, disbelief, shock, displacement (Refer to the section on
bereavement)
When bad news is broken patients and their families will react in various ways:
 Crying Denial
 Blame Anger
 Guilt Sadness
 Bargaining Anxiety
 A sense of loss Relief
 Fear
Handling difficult questions
Some hints, (Faulker 1998)
 Check the reason for the question - “What makes you ask that question?’
 Show interest in the patient’s ideas - How does it appear to you?”
 Confirm or elaborate - You are probably right’
 Be prepared to admit you do not know
 Empathize - Yes it must seem unfair to you’
Handling your own emotions

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When breaking bad news, it is important that you are able to handle your own emotions as it is not an easy
thing to do. Some things that will help include:
 Self-awareness of your own abilities and limits
 Team support
 Clinical supervision
 Reflective practice
 Continue to develop your skills.
 Remember it snot your bad news
Summary of key points
 In order to break bad news sensitively. one needs to use effective communication skills.
 If bad news is broken in an insensitive way when the patient cannot handle at that particular time it
can be detrimental for the patient
 Patients generally prefer gentle truth, so as a health professional, try to soften the initial impact.
 Consider utilization of the six-step protocol ir breaking bad news, but maintain an individual approach.
 Respond to the patients reactions appropriately.

Breaking bad news in children in palliative care

 Keeping children and their families informed about treatment options, and results of treatment is an
important part of palliative care.
 There are six key steps to breaking bad news:
 Setting the scene;
 Finding out how much the child and family know;
 Finding out how much the child and family want to know;
 Sharing the information (use the WPC Chunk approach)
 Responding to the child's and family's feelings;
 Planning and following through.
 Every situation will be different and so there is no one formula for breaking bad news to children and
their families, however following these steps can help.
 Be prepared for the reactions of the child and their family after receiving bad news, whatever the
reaction, don't panic but stay calm and where possible validate the response e.g. 'it is ok to feel angry
at receiving this news'.
 It is important that once they have received bad news you begin to identify options for them, e.g.
sources of support and start discussing management plans, so that they know what is going to happen
next and don't feel abandoned. Also ensure that they have contact details of someone for support.
 Some issues, such as disclosing about HIV status, may be particularly challenging due to the complex
nature of the disease, and the fact that the mother is likely to be the source of the infection.
 Often parents or carers don't want the child to know about their status in order to protect the child
from social rejection, fear or depression: a parental sense of guilt or shame and parental fears of
rejection by the child.
 However studies have shown that children who know their diagnosis are more likely to adhere to
treatment and be involved in the management of their illness.

Barriers to effective communication with children.

Making assumptions
A common mistake for health care professionals is to make assumptions about what a child is experiencing or
feeling. It is easy for example to assume that a child who has advanced AIDS is worried about dying. However,
19
the child, may have other concerns such as what will happen to their parents after they have died. Remember
each child is different, they have their own family, their own life history, and we need to care for them within
this context.
Communication skills should be used to help us find out what the child is concerned about and to do this
effectively we need to keep an open mind.
Distancing
Health professionals often have personal experience of HIV. Many of us have family members who are positive
or who have died from AIDS and some of us are HIV positive ourselves. Caring for children who have similar
problems as family members or even ourselves can be distressing. Therefore in order to cope we may avoid
caring for children or avoid specific issues when we do. This avoidance can be direct e.g. asking to be
transferred to another unit or indirectly by, for example, failing to make time to talk. As health professionals
we need be self-aware, if we notice that we are experiencing such difficulties it is valuable to seek support.
Fear of doing harm and provoking strong emotions
Issues associated with HIV/AIDS are highly sensitive. They often touch on topics that are taboo in many
cultures e.g. sex, death and dying. Anger, crying, denial. Depression, hatred, and even laughter arc some of the
emotions and reactions that we associate with talking about HIV/AIDS. Good communication skills can help
health workers deal with strong emotions; however fear of upsetting children and their families. can prevent
the health worker from using their skills effectively. Remember, there is plenty of evidence that children know
much more than parents and health professionals think, but very little evidence that giving children too much
information does any long term harm. Therefore, if in doubt, it is better to give the information than to
withhold. If you use the "WPC Chunk" method, it is very unlikely you will go wrong.
Lack of skills
Many short courses have been made available to health professionals in counselling and HIV.
Courses tend to explore pre and post-test counselling and often focus on how to give information and advice
effectively. Often these courses are aimed at working with adults and working with children infected and
affected with HIV requires the ability to usc more advanced skills that may not be covered in these courses.
Also a short course may not provide sufficient opportunity to practice skills. Health professionals can feel
frustrated if they have attended a short counselling course yet still find it hard to communicate effectively
with children of different ages.
Lack of time
Health professionals who have been given communication! counselling training are often expected to fulfill a
counselling role in addition to their existing duties. Given that most health professionals have very demanding
roles, opportunities to apply and practice skills are limited. The associated pressure can lead to stress and lack
of motivation. However it is important that every health professional working with children develops their
skills in communicating with children.
Fear of having 'no solutions'
As health professionals we like to have all the answers and solutions for the child's problems and there is a
sense of failure if we do not. Thus we can feel useless and a failure, however we cannot stop children from
getting sick and dytng. There arc however, may ways of helping to children to feel better physically,
emotionally and spiritually.

ETHICAL ISSUES IN PALLIATIVE CARE

 Ethical issues in palliative care are decisions that ensure that our care will be guided by moral values
that will enable us to satisfy the criteria for a peaceful and dignified death.
 Ethical issues have gained greater prominence in the era of HIV/AIDS, exacerbating the challenges
health workers face.
 However, there are four basic pillars principles on which our concepts of medic& ethics rest today.
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  Recognition of the importance of medical ethics goes far back to Ancient Greece, to Hippocrates (from
which the Hippocratic Oath is derived).

The four pillars of medical ethics

Beneficence (Do good)
 This is doing whatever is in the best interest of the patient.
 It entails that whatever treatment we use does not harm the patient.
 It demands that any intervention must be done with the purpose of preventing, removing or mitigating
any harm that may have been caused.
Non-Maleficence (Do no harm)
 a way which does not cause harm to the patient.
Autonomy
 Respecting the rights of the individual to make their own choices.
 It emphasizes respect for the person and his/her dignity.
 Helping the patient decide what is best for them
 Protecting privacy.
 The days of ‘medical paternalism’ (the health worker knows best) are gone.
Justice or fairness
 Society expects health workers actions to be based on social justice and responsibility.
 People should be treated equally unless there are reasons for unequal treatment. e.g. If there is not
enough to go round, which patients should get ARVs?

Other ethical principles

Confidentiality
 Confidentiality is one of the most important rules in the profession which should be maintained even
when the patient dies.
 By ensuring confidentiality a trusting therapeutic relationship is established.
 Ensure that his/her private and personal details are not accessible to anyone else without first giving
their consent
Information communication
There are however, certain exceptions in which the health professional may share information or break
confidentiality.
 Information concerning the patient’s/ client’s history that is necessary for his/ her treatment, and has
to be shared with the other members of the health team (Always keep in mind what is in the patients
best interest).
 Notifiable diseases must be reported by law.
 If keeping a piece of information confidential puts another person(s) life/lives at risk (This is only in
exceptional cases, and where possible the health professional should seek to gain the patients
permission).
Patient records
 Patient records must be kept in a safe place that is accessible only to those who are concerned with
the care of the patient or storing of the notes.
 It is the responsibility of the medical team to ensure that all people who have access to medical
records or confidential reports keep confidentiality.
Environment:
 It is important to consider the environment in which we discuss confidential information.
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  In situations such as ward rounds, it is essential that confidential material is not discussed loudly in the
middle of the ward.
 When discussing personal’s confidential issues with a patient, try and find a private place in which to
talk. If this is not possible, put screens around the bed if available (but remember these are not sound
proof and sit near the patient and talk quietly.
Using patient’s data
 Using patient’s data in research trials is also an area where confidentiality can be broken f caution is
not used.
 These days almost all research studios have to be approved by an ethics committee who examine the
methods used and ascertain whether there is a risk of breach of confidentiality.
 The patient’s permission also needs to be obtained before using their photos in slide presentations,
displays or exhibitions. They should also be requested to sign a consent form.
Confidentiality and HIV
 It may be necessary to allow each party to confide in the health professional without revealing to the
other, what one knows.
 This may be a situation where someone else’s life is at risk, which puts us in an ethical dilemma. It is
therefore, our responsibility to help the patient recognize the consequences of non-disclosure and
guide them in disclosure techniques and give support so they can disclose their status to their sexual
partners.
Truthfulness
Truth telling’ is an ethical issue as we have a duty to give the patient information about their condition,
diagnosis and prognosis.
 How one tells the truth is very important
 The health worker needs to have enough information about the particular patients condition
Autonomy
 Informed consent -this is achieved by giving the patient the necessary information. involving them in
decision making and gaining consent for any examination or procedure to be undertaken
 Refusal of treatment — the patient has a right to refuse treatment
 Decision-making - the relatives of a patient have no right to make decisions on the patient’s behalf unless
the patient is incompetent.
 Advance care planning - These are specific instructions, prepared in advance of serious illness, that are
intended to direct the medical care for specific individuals if they become unable to express their health
care choices at a future date
Being the patient’s advocate
Most of the patients receiving palliative care are vulnerable members of society, and as health workers we can
often act in the best interests of our patients by being their advocates.
An Advocate speaks on behalf of some other person/people
Euthanasia
 Euthanasia is derived from the Greek word for easy death” or “dying well’
 It is generally viewed as meaning ‘mercy killing’ or ‘voluntary euthanasia. This is when at the request of
the patient; a health professional intentionally kills a patient or helps hirn/ her to die. The commonest
reasons for requesting euthanasia are the fear of dependence, loss of dignity, humiliation and pain.
 As a health worker, you can empathize with their suffering and want to help relieve it, but you know
that taking a life is illegal. A request for euthanasia puts you in an ethical dilemma!
 However, rather than seeing the request for euthanasia as an ethical problem, it is better to see it as
an opportunity for palliative care to provide the solution. Palliative care helps to restore hope and sees
22
 death as being a positive and meaningful experience. Thus quality of life is restored and requests for
euthanasia may00 longer be made.
Summary of key points
 Ethics is the ability to look at the humanity in the person, to see and feel their suffering and try to find
out how best it can be alleviated.
 Maintaining the medical code of ethics is of utmost importance when caring for our patients.
 By ensuring confidentiality, a trusting therapeutic relationship can be established and this should be
maintained even when the patient dies.
 There is no one right or wrong choice in ethical dilemmas.

ASSESSMENT AND MANAGEMENT OF COMMON SYMPTOMS AND CLINICAL IN PALLIATIVE CARE

Introduction
These sessions will address the management of common symptoms experienced in palliative care. It will
explore some of the multiple symptoms patients present with and discuss in detail the need to ascertain the
cause of the symptom and implement an appropriate treatment plan. It will then go on to look at the
management of palliative Care emergencies.
Managing symptoms is a crucial part of palliative care.

Principles of symptom assessment

 Accept the patient’s description: the patient’s description of type and severity of symptom must be
accepted as true.
 Assess each symptom separately as most patients have more than one symptom.
 Diagnose the possible cause of the symptom/problem.
 Take a detailed history and examination including;
 The onset of symptom [when did it start], severity, character, periodicity, precipitating and
relieving factors., how disabling it is, effect on sleep, mobility, quality of life, and what it means
to the pt and its site in case of pain. [COLDERA].
 Medication history: [what has been used in the past, drugs that have worked and those that
failed], what the patient is currently taking for the symptoms [including herbs, alternative
treatments].
 Evaluate associated symptoms e.g. constipation and abdominal distension with vomiting in intestinal
obstruction.
 Physical examination is mandatory. It should be focused, thorough and detailed and directed towards
the system of the presenting symptom.
 Do not wait for the patient to complain, ask and observe.
 Use appropriate investigations to guide clinical decision making, but do not do investigations just for
the sake of doing them.
 Do not delay starting treatment pending investigation results, practical mgt is necessary.
 Explain the possible causes of symptoms to the pt and family. Open and regular communication is
essential to the pt and family.
 Review! Review! Review!
The principles of symptom management
 A general principle of symptom management is to assess, plan, implement, evaluate and include the
patient and family throughout the process.

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  Listen to what the patient and family are saying; both verbal and non-verbal communication is
necessary.
 Holistic assessment underpins good symptom control, so excellent history and careful examination are
both very important.
 Evaluate the symptom by thinking through the likely aetiology and underlying pathophysiology.
 Avoid unnecessary interventions
 Formulate a management and treatment plan
 Treat the treatable
 Consider radiotherapy and chemotherapy if available.
 Consider antibiotics for reversible infections.
 Clean and dress painful wounds.
 Prescribe essential medications:
 Keep numbers of medications to a minimum.
 Balance benefits of medications with possible side effects.
 Remember affordability and accessibility.
 Make sure you explain the reasons for prescribing the medications and how they should be taken.
 Remember to offer support and explanation to the family and empower their input.
 Review, re-evaluate, re-formulate plans; review,
Principals of symptom management (wood worth 2004)
Symptoms differ but there are general principles for management which health professional should follow.
These include;
1. Evaluation: diagnose each symptom before treatment.
2. Explanation: explain to the pt before treatment and set realistic goals.
3. Management: give individualized treatment.
4. Monitoring: review continuously the impact of treatment.
5. Attention to details: avoid assumptions.
6. Use both drug and non -drug measures to control symptoms.
7. Allow time for interventions to work before declaring them a failure.
8. Use multidisciplinary team approach.
9. Consultation with a senior or a more experienced clinician may be necessary.
10. Referral may be necessary especially where more specialized mgt is needed
11. Inaccurate assessment of the pts symptoms may have a number of implications on the mgt plan.
12. Always treat the cause if possible.
Common symptoms and clinical problems
Most patients with advanced disease will have potentially devastating symptoms or clinical problems.
Some common symptoms or clinical problems, described further below, include:
 Pain
 Anorexia and cachexia
 Breathlessness
 Confusion
 Constipation
 Dehydration
 Diarrhoea
 Distress
 Fatigue
 Insomnia
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  Malnutrition
 Nausea and vomiting
 Sore mouth and difficulty swallowing
 Wounds
 Hiccups
 Gastro -oesophageal reflux
 Urinary retention
 Bladder spasms

Gastro intestinal tract symptoms

Nausea and vomiting
Causes of nausea and vomiting
 Pharmaceutical: opioids, digoxin, anticonvulsants, antibiotics
 Toxic: infection, radiotherapy, chemotherapy
 Metabolic: hypercalcaemia, ketoacidosis, renal failure
 Intracranial: cerebral tumours, cerebral infections, meningeal mestastases, raised ICP, meningitis,
cerebral malaria, ear infections
 Gastrointestinal: gastric stasis, intestinal obstruction, constipation, candidiasis, abdominal and pelvic
tumours, Partial complete bowel obstruction
Assessment
 Take history (e.g. amount, content, and odour)
 Distinguish between vomiting, expectoration or regurgitation.
 Duration of the problem (include length of time, how often, precipitating factors, type & consistency).
 Medication History (e.g. antibiotics, ARVS, NSAID).
 Raised intra-cranial pressure.
 Examine the abdomen to rule out; pancreatitis, gastritis and peptic ulcers.
Pharmacological management
 The choice of the anti-emetic should be based on the understanding of the different classes of
medications available and their respective mechanisms of actions.
 Treat the cause where possible e.g. constipation — bisacodyl -5mg nocte, if medication - review and
possibly change.
 The anti-emetics you use will depend on the cause .e.
 Depress vomiting centre e.g. hyoscine 0mg b.d. cyclizine 50mg 6hly
 Depress chemoreceptors e.g. prochloperazine (Stemetil) 5-10mg tds, haloperidol 0.5- I mg bd.
 Normalize upper bowel function e.g. metoclopramide 5-10mg tds
 Delayed gastric emptying — metoclopramide 5 – I0mg tds (contraindicated in obstruction)
 Vestibular disturbances — prochlorperazine 5-10mg tds, cyclizine 50mg 6hly Uraema -haloperidol
0.5-1mg
Non-pharmacological management:
 Psychological support especially if anxiety related or anticipatory. Relaxation techniques can be
beneficial.
 Dietary modifications e.g. increase fluid intake if appropriate and if possible, advise small regular meals
 Calm environment away from site and smell of food which can both be nauseating.

Diarrhoea
Diarrhoea is defined as the passage of more than three unformed stools within a 24-hour period.
25
Causes
 Imbalance of laxative therapy
 Drugs such as antibiotics, NSAIDs, ARVs
 Faecal impaction – fluid stool leaks past a faecal plug or tumour mass
 Radiotherapy involving the abdomen or the pelvis
 Malabsorption
 Colonic or rectal tumours
 Concurrent disease
 Odd dietary habits
 HIV
 Stress
Assessment:
 Establish the cause.
 Distinguish between Diarrhoea and overflow.
 History to determine the following
 Acute or chronic (Acute lasting more < 7-14 days then chronic lasting> 2-3 weeks).
 = Characteristics of diarrhea volume, frequency, presence of blood.
 Associated symptoms e.g. abdominal pain or fever. practices.
 Medications should be carefully reviewed.
 Investigations — stool test for culture and sensitivity.
Pharmacological assessment
 Advise increased fluid intake (oral rehydration solution) at least a cupful (preferably more) should be
taken after each episode of Diarrhoea.
 If not improving in 24 hours, anti-diarrhoea medication may be administered e.g. loperamide 2- 4 caps
stat then 2 caps after every motion, codeine 30mg tds or liquid morphine 5mgfSmI 5ml 4 hourly, 10mI
at night,
 In case of infection, administer antibiotics e.g. septrin 480mg 2bd.
 IV fluids may be considered in severe dehydration.
 Review medication and modify if need be.
 Barrier cream to protect skin e.g. aqueous cream — apply when necessary.
Non pharmacological assessment
 Nutrition advice.
 Plenty of oral fluids.
 Skin care to prevent breakdown
 Appropriate advice if incontinent -use of mackintosh/plastic under-sheet, regular changing/cleaning to
prevent bedsores etc.
Constipation
Constipation is defined as ‘unduly infrequent and difficult evacuation of the bowels’.
This is very common in palliative care and often can be predicted and prevented.
Causes of constipation
.Direct effects of disease:
 Intestinal obstruction from tumours in the bowel wall or external compression from abdominal masses
 Damage to lumbosacral spinal cord
Secondary effects of disease:
 Decreased food intake and low-fibre diet
 Dehydration
26
  General body weakness
 Metabolic abnormalities – hypokalaemia, hypercalcaemia
Medications:
 Opioids such as codeine or morphine
 Anticholinergic drugs such as tricyclic antidepressants
 Diuretics
Concurrent disease:
 Diabetes mellitus, hypothyroidism
 Haemorrhoids, anal fissures.
NB: The two most common causes are related to the side effects of opioids and the effects of progressive
disease.
Assessment
 Take history to ascertain cause.
 Establish previous and present bowel pattern (aim for usual pattern)
 Examination — abdominal, PR
Pharmacological management
 Appropriate laxatives - Bisacodyl 5-15mg nocte.
 Pawpaw seeds chewed or crushed in fruit drink, can be used.
 Stop or reduce the dose of constipating drug.
Non-pharmacological management
 Rectal intervention if required e.g. enema
 Advise on increase in high fibre diet and increase in fluid intake.
 Privacy and adequate toilet facilities
Management in children
For children an osmotically active laxative (eg Lactulose) is preferable to a stimulant laxative (Bisacodyl) as the
stimulants may cause severe abdominal pain in children.
For children, try to prevent constipation when starting opioids by adding laxatives, e.g. Bisacodyl: 6–12 years
5–10mg once daily po
Step 1: try lactulose, building the dose up over one week:
.„ <1year 2,5ml BD
.„ 1–5 years: 5mls BD
.„ 6–12 years 10mls BD
Step 2: if no improvement, add Senna
.„ 2–6years –1 tablet BD po
.„ 6–12 years 1–2 tablets BD po
Step 3: If already on opioids, use step-2 drugs straight away.
 If on rectal examination the stool is found to be hard, try a glycerine suppository. If soft but not
moving, try a bisacodyl or senna suppository. If the rectum is empty, try a bisacodyl suppository to
bring the stool down or a high-phosphate enema.
 For severe constipation, try a phosphate enema or a bowel prep product (e.g. Movicol) if available.

Mouth sores and difficulty swallowing

As you may know infection and ulceration of the mouth are common and very distressing symptoms for
patients with advanced cancer or HIV.
The sores can be due to oral and Oesophageal candidiasis. But take note that many problems with the mouth
may be prevented by good mouth care, keeping the mouth moist and treating infections quickly.

27
Causes
 Infection such as candidiasis or herpes
 Mucositis due to radiotherapy or chemotherapy
 Ulceration
 General debility
 Poor dental hygiene
 Dry mouth due to medications, damage to salivary gland due to radiotherapy or tumour, or mouth
breathing
 Erosion of buccal mucosa by tumours, with possible fistula formation
 Iron deficiency
 Vitamin C deficiency.

Non pharmacological management

 Most problems can be prevented by keeping the mouth clean and moist and treating any infections
promptly.
 Check the mouth, teeth, tongue, palate and gums regularly for dryness, inflammation, ulcers, infection
or inflammation.
 Ensure the patient and family know how to care for the patient’s mouth using what is available.
 Avoid harsh brushing; use a soft brush or a soft cotton cloth instead.
 A simple mouthwash with sodium bicarbonate or saline (a pinch in a glass of water is sufficient) can be
very effective.
 Sucking ice or pieces of fruit such can help a dry mouth.
 Use petroleum jelly on the lips after cleaning.
Assessment and Pharmacological management
 Treat pain in accordance with the WHO analgesic ladder (see Chapter 4).
 Remember that Mucositis can cause severe pain and require oral morphine.
 Treat oral candidiasis and remember you may not see white patches but only inflammation:
 Nystatin oral drops 1–2mls 6hrly after food and at night; hold dose in mouth to allow it to act
topically.
 Fluconazole 50mg daily for five days; use higher doses (200mg daily for two weeks) if patient has
difficulty swallowing and you suspect oesophageal candidiasis. Ketoconazole 200mg daily is an
alternative, but watch for drug interactions.
 Treat other infections:
 Apply Gentian Violet three times daily; useful for many sores. Metronidazole mouthwash, made by
mixing crushed oral tablets or liquid for injection with fruit juice, helps with smelly sore mouths,
especially with oral cancer. Consider acyclovir 200mg po for five days for herpes infection. Oral or
parenteral medications may be needed to treat severe infections.
 Treat inflammation:
 Consider the use of steroids, such as oral dexamethasone 4–8mg or prednisolone powder or
solution, for ulceration and inflammation – but ensure that any infection is well treated as steroids
may exacerbate them.
Hiccup
 As you may have seen that majority of the dying patients experience hiccups.
 These can be distressing and exhausting for the patient if they are frequent and they do not resolve
quickly.

28
  Hiccups are as a result of irritation of the phrenic nerve on the neck of the mediastinum or irritation of
the diaphragm from above.
 Tumours that lead to distension of the stomach, tumours of the lungs, cancer of the oesophagus, renal
failure and hepatomegaly are commonly associated with hiccups. But at the same time it can be
central that is, from the brain.
Management of hiccups
To stop hiccups get the patient to
Immediate:
 Pharyngeal stimulation e.g. by swallowing dry bread or two spoons of sugar.
 Correct uremia if possible
 Simple re-breathing from a paper bag to elevate Pco2 level
 Try nursing the patient while in sitting up position
 Medication such as Metoclopramide 10-20 mg 8 hourly, haloperidol 3mg at night or chlorpromazine
25-50mg at night may be prescribed.

Gastro -oesophageal reflux

As you may know, this is common when there is pressure on the diaphragm from an abdominal tumour or
ascites and in a neurological disorder.
Management
 It is helpful to nurse the patient in a sitting up position
 Give drugs after food
 Try giving milk
 In case the patient is receiving NSAID, they may need to be stopped
 Simple antacids such as Magnesium trisilicate 10ml 8 hourly may be prescribed but in case it’s
persistent then cimetidine 200mg 12 hourly or ranitidine 300mg 12 hourly or omeprazole 20-40mg
once daily.

Dehydration
 Dehydration is a common symptom.
 There is a need and desire for relatives and the medical or nursing team to want to keep patients well
hydrated.
Diagnosis and prognosis
 Dehydration may occur when a patient has an intercurrent illness from which you expect them to
recover, e.g. an episode of diarrhoea in a patient with lung cancer who has a prognosis of several
months, or severe diarrhoea in an HIV and AIDS patient.
 Presence of other symptoms:
 Dehydration may significantly impair drug excretion and so increase side effects. This is particularly
true for morphine.
 Try to stop unnecessary medication or reduce the dose while maintaining symptom control.
 Supplementary fluids may be given for a short period of time to reduce distressing symptoms such as
hallucinations or myoclonic jerks.
 Presence of a dry mouth rather than thirst:
 See also the section below on mouth care.
 The patient may report feeling thirsty but they appear well hydrated and their symptom may actually
be a dry mouth.

29
  If the patient is very thirsty and measures to keep their mouth moist are ineffective and they are
unable to swallow, supplementary fluids should be considered.
 Are they close to death?
 A patient who is nearing death will often struggle to manage oral fluids. They may even cough when
they swallow.
Assessment and management
 A dilemma occurs when the patient is very ill and entering the terminal phase. In most patients nearing
death, a reduction in fluid intake is natural and appropriate. They no longer have a requirement for
fluid and full explanation is likely to reassure the family and reduce the request for supplementary
fluids.
 Remember to keep the mouth and lips clean and moist, because dry oral mucosa may be a worse
symptom than thirst.
 There are, however, some situations in which it may be appropriate to consider artificial hydration. If
so, aim to hydrate via the oral route but consider IV or SC infusions if needed. SC may be the least
invasive and can even be given in a home situation.
 Excessive hydration may result in fluid overload and necessitate venous cannulation, which can
become painful and difficult. In deciding to give supplementary fluids, several factors should be
considered:
 Giving more than sips of oral fluids in this situation risks the complication of aspiration and pneumonia.
 Often, families worry that the patient will be uncomfortable and will need hydration.

Anorexia and cachexia

 Weakness, profound weight loss and poor appetite are common problems in advanced cancer, HIV and
AIDS, and end-stage organ failure.
 Cachexia is not associated with hunger or thirst, nor will it improve by forced feeding or hydration.
 Cachexia is often debilitating and frustrating, particularly for families who may try to pressurise
patients to eat so they can stay strong.
Cause
 The underlying mechanisms are not fully understood and differ with different diseases.
 There is release of inflammatory mediators including cytokines. These, along with alterations in
metabolism, cause a catabolic state to be induced, with resultant profound weight-loss that involves
both fat and skeletal muscle.
General measures
It is important to ensure that there is not anorexia or malnutrition due to a reversible cause such as;
 Lack of available or digestible food
 Dysphagia
 Sore mouth or altered taste
 Dyspepsia, or nausea and vomiting, or constipation
 Pain
Management in children
 Corticosteroids should not be used in children if anorexia/ cachexia is the only symptom that might
benefit.
 There may be benefit from a short trial of corticosteroids in children with associated nausea, pain,
asthenia or depressed mood. Dexamethasone dose is most appropriate in children:
 As an alternative, use Prednisone 0.05-2mg/kg divided 1–4 times a day.

30
Metabolic disturbance – e.g. hypercalcaemia or uraemia
One that is secondary to treatment such as chemotherapy, radiotherapy or drugs.
 Support should be given to the family and patient to understand the underlying process and to see
food as something to enjoy rather than endure.
 Presentation can be helpful with small, appetizing meals and an emphasis on fluid intake.
 Remember that as the terminal phase is reached, a reduction in food and fluid intake is very normal.
Assessment and management
 Added nutritional supplements are expensive and seldom make a significant difference in advanced
disease.
 Enteral nutritional support is occasionally useful in specific situations:
 Where tumours of the head, neck and oesophagus exist and where swallowing is difficult despite good
appetite and the disease is not far advanced.
 Surgical placement of a feeding gastrostomy tube can be straightforward and helpful (refer to core
texts for details). May be associated with complications such as aspiration pneumonia and diarrhoea.
 Parenteral nutrition is seldom indicated and in any case is costly and burdensome.
 Corticosteroids (e.g. dexamethasone 2–4mg 5days po) may be of short-term benefit.

Faecal incontinence:
This is obviously a distressing symptom for the pt and a difficult problem for his/her relatives to cope with at
home.
Causes:
 Faecal impaction
 Medications like laxatives when taken excessively
 Excessive and frequent diarrhoea in the debilitated pts.
 Paraplegic patients
 relaxed anal sphincters especially in the elderly
 Ano-rectal tumors.
Management:
• Perform thorough rectal examination to define the cause.
• Patient with a relaxed sphincter may benefit from a constipating agent e.g. Loperamide, Codeine
phosphate.
• The paraplegic and /or constipated patient will benefit from appropriate rectal evacuation and regular
faecal softeners.
The patient with ano-rectal carcinoma may be helped by;
 Radiotherapy [RT].
 Rectal steroids [prednisolone suppositories b.d, Betamethasone foam b.d or a prednisolone retention
enema daily.
 Metronidazole rectally if there is an offensive discharge.
 Use plastic under sheets, pumpers,change and wash/dry pt after each episode.
 Use barrier cream
 Turn pt regularly to prevent pressure sores if immobile.

Neurological Symptoms
Fatigue
Chronic fatigue is very common in people with advanced disease.
Causes

31
  Multiple causes, often obscured by coexisting disease processes
 Anaemia
 Pain
 Emotional distress
 Sleep disturbances
 Poor nutrition.
General care
 Try to manage lifestyle around the periods of greater energy or fatigue.
Assessment and management
 Treat the underlying cause of the fatigue where possible — e.g. if anaemia, give a blood transfusion as
appropriate.
 Can give low doses of psycho-stimulants. e.g. methylphenidate (Ritalin) or antidepressants.
 Non pharmacological interventions include energy conservation and physical exercise, and stress
reduction by relaxation and meditation.
Insomnia
 Insomnia is a subjective complaint of inadequate nocturnal sleep manifested as difficulty initiating or
maintaining sleep, early-morning awakening, non-restful sleep or a combination of all of those.
 It is common in those with advanced disease.
Causes
It may be transient or chronic:
 Transient: Secondary to life crisis, bereavement, illness etc.
 Chronic: Associated with medical or psychiatric disorders, drug intake or maladaptive behavioral
patterns.
 In advanced disease it emerges as a psychological or physiological side effect of diagnosis and/or
treatment.
General care
• Try to reduce the intake of nicotine, caffeine and other stimulants and avoid alcohol near bedtime,
• Exercise regularly in the earlier part of the day.
Assessment and management
• Benzodiazepines are the most commonly used hypnotic medications for sleep — they offer prompt
symptom rebel by decreasing time to sleep onset, improving sleep efficiency, and imparting a sense
of restful sleep for most patients.
• Long-acting: Lorazepam 0.5—2mg; half-life 10—22 hours. ,. Diazepam 2.5—10mg; half-life 20—50
hours.
• However, these are not indicated for long-term treatment of chronic insomnia because of the ‘risk
of tolerance, dependency and other side effects.
• Note: despite being longer acting, Lorazepam has the east active metabolites of the
benzodiazepines and this can therefore be used over a longer period, especially in &der patients,
without a cumulative drowsy effect.

Confusion
This is one of the most distressing and difficult-to-manage symptoms.
Causes
 Uncontrolled pain
 Urinary retention or severe constipation
 Changes in environment, leaving home, transfer from one ward to another
32
  Metabolic disturbance: uraemia, hypercalcaemia, hyponatraemia
 Infection: urinary tract infection, cryptococcal meningitis, other opportunistic infections
 Hypoxia
 Raised intracranial pressure, strokes
 Medication-induced through opioids, antimuscarinics, corticosteroids
 Withdrawal state such as alcohol, benzodiazepines, opioids
 Dementia, delirium, HIV encephalopathy
 Sudden sensory deprivation (blindness, deafness).
General care
 Keep surroundings calm, reassuring and as familiar as possible.
 Seek to remind the patient where they are and orientate them in time.
 Remember that the patient may be very deaf and so only seem confused.
 Avoid physical restraint unless for reasons of patients safety.
 Support the family to be able to stay with the patient and express their worries and fears.
Assessment and management: Consider the following questions;
 Have new medications been started? – consider stopping these.
 Are there any signs of infection? – treat appropriately.
 Is the patient dehydrated? – give oral fluids and consider parenteral infusion.
 Is there urinary retention or constipation? – relieve with urinary catheter or laxatives.
 Is there any reversible organ failure? – assess and manage appropriately.
 Use medications to relieve symptoms but take care not to sedate more than is necessary.
For mild agitation, give:
 Diazepam 5–10mg daily
 Or Lorazepam 1–2mg po/SL (give oral tablets via this route if available).
For severe delirium, give:
 Haloperidol 1.5–5mg up to 8hrly until settled
 Or Chlorpromazine 25–50mg po/pr if available
 Add diazepam as above but do not use alone for severe delirium because it might worsen the
confusion.
Assessment and management in children
 For children, start an antipsychotic – e.g. haloperidol 0.05–0.15mg/kg per 24hrs as a continuous
infusion, or in divided doses twice or three times a day po/sc/IV.
 Give midazolam 500mcg/kg SL as a single dose, or 100mcg/kg sc as a single dose or 300–700mcg/kg
over 24 hours by SC infusion
 Or Lorazepam 25–50mcg/kg (max 1mg) as a single dose or 4–8hrly po/SL.
 Don’t use benzodiazepines alone, because they carry the risk of paradoxical agitation; however, they
can be used in conjunction with antipsychotics to sedate children.

Depression
Depression is often misunderstood, under-diagnosed and under-treated.
Assessment and management:
The key factors which distinguish depression that may require anti-depressant medication and psychiatric
referral include:
 Low mood more than 50% of each day
 Loss of any enjoyment or interest
 Excessive or inappropriate guilt
33
  Thoughts of suicide.
 Ongoing support and counselling may be needed.
 Antidepressants take several weeks to be effective, so should be tried for at least 2–4 weeks.
 If depression does not respond to counselling, give anti-depressants:
 Amitriptyline – start with 25mg at night and increase gradually to 75–150mg. (The anti-depressant
effect is unlikely to be seen at less than 75mg.) The main side effects are drowsiness, dry mouth and
constipation.
 Imipramine, if available, is an alternative that might be less sedating.
Anxiety
This may be a symptom of depression.
Assessment and management:
 Symptoms included feelings of panic, irritability, tremor, sweating, lack of sleep and a lack of
concentration.
 Ensure the patient is given an opportunity to talk about their fears and anxieties. Non-pharmacological
interventions may help, such as massage and relaxation. If persistent symptoms are hindering quality
of life, consider medication with benzodiazepams, e.g. diazepam 5–10mg at night.

Respiratory symptoms
Breathlessness
 Difficulty in breathing is a frightening experience.
 Think of the words that patients use to describe their experience, such as ‘suffocating’, ‘choking’,
‘could not get enough air’, ‘it felt like I was about to die’.
Causes
Respiratory: primary or secondary lung cancers, pleural effusion, pulmonary embolus, tracheal tumours,
airway collapse, infection, lymphangitis carcinomatosa, chronic obstructive pulmonary disease (COPD), weak
respiratory muscles;
Cardiac: superior vena cava obstruction, anaemia, cardiac failure, cardiomyopathy, pericardial effusion;
Other: ascites, secondary to treatment such as radiotherapy, chemotherapy or pneumonectomy.
General care
 Adjust position – usually best to be sitting up, although in patients with a pleural effusion it is best that
they lie on the affected side with the good lung upwards so as to maximise ventilation.
 Ensure good ventilation by opening windows, using a fan or even fanning with a newspaper.
 Adjust activity and help with slow, deep breathing.
 Gently suction any excessive secretions
Assessment and management
 Take a careful history, asking about severity, duration, and associated features such as breathing being
worse when lying down or on exertion, pleuritic chest pain or haemoptysis.
 Treat reversible conditions if possible, such as anaemia, heart failure, infection, pulmonary embolus or
pleural effusion.
 Address any underlying anxiety and panic.
 Use medications to relieve symptoms:
 Morphine 2.5–5mg orally every four hours (but if already taking oral morphine for pain, titrate
dose and advise on taking extra doses as required);
 Diazepam 2–5mg at night, especially for anxiety and panic;
 Dexamethasone 8–12mg daily for specific causes, e.g. superior vena caval obstruction,
lymphangitis carcinomatosa;

34
  Consider other medications, such as broncodilators, diuretics or oxygen, depending on their
availability and the cause of the breathlessness.
The death rattle;
It is the noisy breathing due to the accumulation of secretions in the large airways, in the pt whose conscious
level is falling prior to death. It is often more distressing to those around than to the pt. This should be
explained particularly to relatives.
MGT; position should be changed regularly to prevent pooling of secretions.
• The head should be LOW ensuring that secretion can drain from the mouth.
• Hyoscine butyl bromide [Buscopan] 10-20mgs subcutaneously helps reduce the production of
secretions. But must be given early and regularly to be effective as it does not clear secretions already
there.
• Morphine subcutaneously may be given along with the Hyoscine, if the pt is too ill to swallow. The
dose will depend on the dosage of morphine the pt has been having previously.
• It is very important if pt is still semi-conscious to relieve breathlessness.
• Suction should be reserved for the unconscious patient.
Cough
• The incidence of cough in all cancer patients-30% and cancer of lungs/bronchus -80%
• In Pts living with HIV/AIDS , cough of any duration should be highly suspected for TB and refer pt for
investigations such as Gene X-pert.
Causes
Bronchial obstruction from a primary tumor or medial sternal mass most commonly enlarged medial sternal
glands.
• TB or pneumonia in ISS pt.
• Left ventricular failure with characteristic dyspnoea and cough wakening the pt.
• Vocal cord paralysis due to hilar tumor or lymphadenopathy.
• Unrelated to cancer e.g. Cigarettes, colds, asthma , CCF.
Assessment
Take history on;
• Type of cough, is the patient able to cough and is it productive or dry?
• What precipitates, worsens or relieves the cough?
Carry out physical examination of mouth, throat, lungs, and heart.
Management:
Productive, do gentle postural drainage to aid expectoration and drainage if the condition of the pt can allow.
1. Steam inhalations if thick sputum.
2. Antibiotics are often useful in clearing infection and facilitating easier expectoration.
3. If broncho-spasms is present, a broncho- dilators in or out of cough mixture is helpful e.g Salbutamol or
cough linctuses.
Non-productive cough , sedation at night with codeine linctus 1mg/ml 10mls 4hrly , or morphine 2.5mg or
increase usual dose by 2.5mg 4hrly.
Nursing management
• Prop up the patient in bed with only 2 or 3 pillows in the most comfortable position.
• If there is a pleural effusion, pt should lie on the side of the effusion in a semi-recumbent position.

Urinary symptoms
Urinary Retention

35
  Urinary retention in terminally ill patients can be due to; faecal impaction as a result of constipation,
urinary tract infections, drug induced for example with amitriptyline and opiates, but this usually
temporary or spinal cord compression. for example
Causes:
 Drug induced particularly the anti-cholinergic, Tricyclic antidepressants, Opioids [temporary and
initially only]. Manage by withdrawing the offending drugs keeping in mind the temporary effects of
Morphine.
 Neurological causes particularly spinal cord compression.
 Faecal impaction of the rectum- evacuate the rectum in the usual way.
 Prostatic carcinoma obstructing the bladder neck- manage the cause.
NB in all the causes above catheterize the patient as the cause is being managed.
Dysuria and strangury
Causes:
 UTI
 Bladder or prostatic carcinoma, particularly affecting the bladder neck.
 Calculi or retained blood clot.
 Infiltration into the bladder by a tumor from adjacent organs e.g rectum, vagina or cervix.
Management
In all except UTI, catheterization is very important in order to perform bladder wash outs and deal with
incontinence or partial retention.
• Generalized bladder pain from a bladder carcinoma may be relieved by prostaglandin inhibitors like
Ibuprofen 400mg qid but strong analgesics such as the opioids are almost always needed too and
should not be withheld.
 Strangury is rare but distressing pain- try to use anti-cholinergic drugs if available like Imipramine 10-
20mg mane, Amitriptyline 25mg nocte.
 If all the above fail, permanent catheterization may be the option.
 Urinary catheterization: this is very useful for ill pts to prevent dribbling incontinence or recurring
retention. The pros and cons of catheterization has to be explained to the patient and family.
 Useful tips for catheter care:
 Use Foley catheters
 Do not keep inflating/deflating the bulb or re-inserting different sizes of catheters.
 Bladder washouts are the best. Use Chlorhexidine 0.05% daily for infection and weekly for
maintenance, saline for debris, deposit and clot removal. Boiled, cooled h2o can be used to was out
debris at home, therefore it is very important to train the carers to do bladder washouts.
 The discomfort of catheterization in the anxious pt may be avoided by prior admin of oral or rectal
diazepam 2-5mg or morphine 5mg all given 30mins before the procedure is done.
 Haematuria occurs towards the end of life in about 10% of pts. Hence a bladder washout using silver
nitrate solution can reduce bleeding in severe cases.
 Reassurance and explanation to the family members is very important.
Management
 The cause should be treated
 Catheterization will relieve the retention.
 Sometimes the problem may resolve once the urine has been drained. Although in other circumstances
the catheter may be needed for the long term management

Causes:
36
1. Drug induced particularly the anti-cholinergic, Tricyclic antidepressants, Opioids [temporary and initially
only].
-Manage by withdrawing the offending drugs keeping in mind the temporary effects of Morphine.
2.Neurological causes particularly spinal cord compression.

Bladder spasms
These are sudden and severe pain which may be felt in the bladder and urethra especially in patients with
bladder or prostate cancer but it can also follow catheterization or bladder infection.
Management
 Encouraging the patient to take a lot of fluids will help
 Drugs such as amitriptyline 25-50mg at night, Hyoscine butylbromide 10-20mg 6 hourly may be
prescribed by the doctor

Skin related conditions

• Skin disorders can be very troubling to pts and cause a lot of discomfort.
• Lack of activity as well as excessive weight loss as end of life approaches, can lead to the development
of skin breakdown.
• Recognition of potential causes of skin and mucous membrane disorders is very important because
dying pts do not have the luxury of waiting for diagnostic test results before therapy is started.
• Treatment planning is based on clinical identification of the most likely diagnosis and therapy is
instituted as soon as possible to effect palliation of discomfort.
Pruritus
Near the end of life the cause may be related to the pt’s primary illness, co-morbid conditions, allergies and
infections.
Causes:
 HIV/AIDS
 Pre-existing skin disease[ Eczema. Psoriasis, infestation].
 Dry skin particularly senile pruritus
 Obstructive jaundice
 Anxiety state
 Allergic reactions.
Management:
 HIV/AIDS, apply 1% hydrocortisone cream if it is due to drug eruptions.
 If due to multiple opportunistic skin infections, rinse the skin after bathing with 0.05% Chlorhexidine
solution.
 This gives results in about 10 days.
In obstructive jaundice, where Biliary Stenting is unavailable,
 Give steroids like Dexamethasone 2mg b.d reducing to 1mg/day
 Prednisolone 15mg reducing to 10mg daily in the morning.
 Antihistamine e.g. Chlorpheniramine 4mg tds.
Other measures include;
 Patient should be advised to keep their nails short and to rub itching skin gently to prevent skin
damage.
 Cold fan on the exposed skin.
Hyperhidrosis [Excessive sweating]
This distresses patients because of the inevitable discomfort and it frightens them in case of suspicions to PTB.
Causes;
37
  Intercurrent infection including TB
 Toxemia associated commonly with liver metastases.
 Lymphomas
 Morphine in high dose.
Management:
Identify and treat the cause.
 If fever is present, give antipyretics like Paracetamol, Ibuprofen or Diclofenac which may increase
sweating initially but later brings down the temperature and cools the body. Give steroids like
Dexamethasone 2-4mg/day
 Frequent sponging and appropriate advice about clothing and beddings, is very useful.
Oedema and swelling:
-Kaposi’s Sarcoma is probably the commonest reason for swelling of legs and other parts of the body
particularly the face. The woody hard infiltration of the skin by the tumor gives areas of distension with
blockage of small vessels and lymphatics resulting in fluid retention as well as thickening of the skin.
Management:
 Consider starting ART which improves the condition.
 Chemotherapy is very useful if available.
 Steroids like Dexamethasone 8mg for one week.
 Pain relief with analgesics
 Manage the cause if identified.
Unilateral upper limb lymph edema;
Management
 Massage the arm starting with the hand and working towards the axilla is very helpful.
 Elevation of the arm on pillows.
 Good skin care is very essential keeping it moist with moisturizing creams as dry skin will breakdown
with subsequent infection.
 Give Dexamethasone 4mg tds for 3days reducing to 2mg to relieve pressure.
 Morphine in high dose if titrated accurately for pain.
Bilateral upper limb oedema
Mainly caused by Superior Vena Cava obstruction, with venous distension in the area drained by the Superior
Vena Cava.
Management
 Prompt RT
 Chemotherapy
 High dose Dexamethasone
Unilateral lower limb oedema
The three principle causes in terminal care are;
 Venous and or Lymphatic obstruction caused by a pelvic tumor. RT and CT should be considered to
shrink the tumor.
 Deep venous obstruction: avoid anticoagulants in the terminal disease because of the bleeding
tendency.
 Infection which can be cellulitis, lymphangitis or deep tissue infection from nearby tumor.
Management ,
 Use appropriate abcs specifically broad spectrum or after culture and sensitivity results.
 Bed rest
 Analgesics to control pain.
Bilateral lower limb oedema:
38
The three principle causes in terminal care are;
 Lymphatic and venous obstruction by a pelvic tumor.
Management
 -High dose Dexamethasone
 -Diuretics preferably Spironolactone 75-400mg daily together with Frusemide 40-200mg daily.
 Cardiac failure: treat it in the routine way.
 Hypoalbuminaemia which is either from dietary deficiency or loss in ascitic fluids.
Frequently lower limb oedema is due to prolonged periods of sitting with the feet dependent. This is not an
indication for diuretics.
Management
 Elevation of the feet
 Leg movement in walking or passive movements
 Treat the contributing factor.
 Reassure the patient and his family members.
Fungating tumors and odours
It is very distressing to the patient because of the embarrassment and its ability to isolate him/her further
from relatives and friends.
Management
 Regular cleaning of the fungating tumor with saline.
 RT may a good option.
 Metronidazole tabs crushed and placed on the fungating area, removes the smell and dries up the
discharge.
 Provides Haemostasis and clears the infection caused by the anaerobic organisms.
 Metronidazole tabs can be inserted into the sinus or orifice leading to a smelly growth o.d. it can be
useful in rectal or cervical cancers.
Wound care
Causes of wounds
 Fungating skin cancers (primary or secondary) such as breast, sarcoma, squamous turnours or
melanoma.
 Poor wound healing due to debility, poor nutrition and illness.
 Pressure sores due to debility and immobility.
General care
Cleaning wounds:
 Use a simple saline solution made by boiling water and adding salt (a pinch for a glass or one teaspoon
for 500mls).
 Use salt-water baths for perinea wounds.
 Avoid caustic cleaning agents such as hydrogen peroxide.
 Consider leaving a wound exposed to air (though watch for maggots).
 If needed, apply clean dressings daily, or more often if there is discharge.
 Consider making simple dressings from local materials such as old cotton cloths washed and cut to size.
 Help the patient’s family to learn the skills to do the dressings daily. = Prevent pressure sores by
changing the patient’s position regularly.
 Keep skin dry and clean.
 Consider a water-filled surgical glove for pressure relief of critical areas.
Assessment and management
Is there pain?
 Use non-adherent dressings, and soak them off prior to changing.
39
  Give analgesia 30 minutes before changing dressing
Is there an unpleasant smelt?
 Sprinkle crushed metronidazole tablets directly onto the wound (avoid enteric coated tablets) or use
metronidazole gel if affordable.
 Consider using locally available remedies such as natural yoghurt, paw-paw and tried-and-tested local
herbs.
 Honey or sugar can be used temporarily on a dressing, for de-sloughing necrotic wounds. Dressings
should be changed twice a day (as they become moist), but within a few days you can revert to dry
dressings or metronidazole.
Is there discharge?
 Use absorbent dressings and change them frequently. Is there bleeding?
 If the bleeding is severe, consider radiotherapy or surgery and use dark cloths to soak up the blood
 Clean the wound carefully to avoid trauma during dressing changes
 Consider crushed topical tranexamic add 500mg

ASSESSMENT AND MANAGEMENT OF PALLIATIVE CARE EMERGENCIES

 A palliative care emergency is any change in a patient’s condition that requires urgent and immediate
intervention.
 Assessment must be prompt and complete if good results are to be achieved.
Points considered during the management of a palliative care emergency:
 The nature of the emergency
 The general condition of the patient
 The stage of the disease and prognosis
 The availability of possible treatments
 The affordability of possible treatments
 The likely effectiveness and toxicity of available treatments
 The patient’s wishes
 The carer’s wishes.
Assessment of the emergency
 What is the problem? It is important to make a proper diagnosis.
 Can the problem be reversed?
 What effect will the reversal of the problem have on the patient’s overall condition?
 Can active intervention maintain or improve the patient quality of life?
 Is the treatment option in mind available and affordable?
 What is the patient’s wish?
 What is the carer’s wish?

Types of palliative care emergencies

 Major emergencies occurring in palliative care, described further in section D below, include:
 Bone fractures
 Choking
 Haemorrhage
 Hypercalcaemia
 Seizures
 Severe uncontrolled pain
 Spinal cord compression (SCC)
40
  Stridor
 Superior vena cava obstruction (SVCO).

Severe uncontrolled pain

Patients may present with acute, severe, uncontrolled pain from a variety of causes. It is important to
establish rapidly the possible cause of the pain to ensure that they are given the most appropriate analgesia.
General management includes:
 Prescribe analgesia as per the WHO analgesic ladder
 Give a stat dose of oral morphine 5-10mg, or, if already on morphine, give a breakthrough/rescue dose
(equivalent of the 4 hourly dose) immediately
 Assess the response to the dose after 30 minutes
 Repeat the same dose if the pain is not relieved
 Consider giving via a different route (subcutaneous or intravenous) if no improvement in the pain
especially if the oral route is not available
 Titrate the regular morphine dose based on the response; and be ready to increase by 100% or more if
necessary
 Ensure review and if the intervention is not effective then consider a change in management
 Possible causes of acute pain are:
 Acute vertebral collapse – usually associated with bony metastases. Spinal cord compression
should be considered (see later section) Give analgesia including NSAID’s if no contraindications.
Palliative radiotherapy should be considered depending on availability and the patient’s general
condition. Often a single fraction of radiotherapy can be effective. Pathological fracture – is
frequently seen in patients with advanced bony metastases. They may occur spontaneously or after
minimal trauma. Classically, the pain is very severe, acute in onset and worse on the slightest
movement. There may be associated skeletal deformity. Analgesia should be given and the area
immobilised and splinted if necessary. Surgical treatment should be considered depending on the
patient’s overall condition
 Biliary and ureteric colic – treatment is with an NSAID, ideally given by injection such as diclofenac
75mg by IM injection; or given rectally. Other analgesia including oral morphine can also be
considered.

Seizures
 Seizures can be frightening and their occurrence is often unpredictable.
 People may attach significance to these events, such as being bewitched.
 Seizures can be generalized, with jerking of the whole body, or limited to a specific area such as an
upper limb or face. The period of jerking is often followed by a period of unconsciousness.
 Most seizures are self-limiting and efforts can be made to prevent or limit future seizures.
 A prolonged seizure lasting more than 10 minutes or one that does not terminate needs more urgent
treatment.
 A seizure is a symptom of irritation of the central nervous system resulting in excess and abnormal
neuronal discharge.
 A seizure occurs when large numbers of neurons discharge in an unusual manner.
 An acute seizure refers to 5 minutes or more either continuous seizures or two or more seizures
between which there is incomplete return to consciousness.
Cause
 Pre-existing epilepsy
41
  Stroke
 Trauma, including subdural haematoma
 Primary or secondary brain tumour
 Intracranial bleed
 Biochemical disturbance, e.g. hyponatraemia, hypoglycaemia, uraemia or hypercalcaemia
 Infections such as cerebral toxoplasmosis, meningitis, malaria or encephalitis
 Alcohol withdrawal.
General care
 Keep the patient safe and free of hazards until the seizure is complete.
 Protect the airway of the patient so they can breathe – but do not place anything in their mouth (eg
spoons, spatulas).
 Loosen any tight clothing if possible.
 After the seizure is over, place the patient in the recovery position and ensure someone stays with
them.
 Observe and record the length and frequency of the seizures.
 Support the family and patient, and address their fears and concerns.
Assessment and management
 No treatment is needed for self-limiting seizures that last less than five minutes.
 To stop more prolonged seizures:
 Diazepam 10mg given per rectum or IM; repeat after 10 minutes
 Midazolam 5mg SC is available; may also be given buccally
 Paraldehyde 5–10mls diluted in saline as a rectal enema
 Phenobarbitol 200mg IM if patient not responding to diazepam.
 To prevent seizures or reduce their intensity and frequency:
 Phenytoin 150–300mg daily and titrate gradually, watching for toxicity and drug interactions
 Sodium valproate 600mg daily in divided doses and titrate to maximum 1500mg; this is the
medication of choice when there is concern about drug interactions, including those in patients on
ARVs.
Management in children
In children, a suitable rectal valium dose would be:
 If weight is unknown: <3years 5mg; >3years up to 10mg
 If weight known: 0.5–1mg/kg up to a maximum of 10kg.
 Clonazepam (Rivotril) 0.02mg/kg per dose slow IV (max = adult dose of 1mg).
 Phenobarbital 20mg/kg IV or PO in neonates and 10mg/kg in infants and older children, then 4–
6mg/kg/day IV, SC or PO.
 Midazolam 100mcg/kg SC over one minute, then if necessary 200–700mcg/kg over 24 hours by sc
infusion.
If available, paraldehyde 0.1–0,5ml/kg mixed with an equal amount of mineral oil in a glass syringe and
administered rectally is an effective and safe drug for managing seizures in children who have not responded
to the above measures, especially where are concerns around respiratory suppression.

Spinal cord compression (SCC)

 In SCC, the spinal cord is compressed causing neurological symptoms.
 Cord compression occurs when there is extrinsic or intrinsic obstruction to the spinal cord.
 If it is not managed quickly, it progressively turns into irreversible neurological damage (paralysis).

42
  Be alert for patients with new thoracic back pain.
Causes
 Vertebral metastases, leading to collapse, is the most common cause
 Epidural infiltration
 TB should be considered
 Less often, there is a vascular interruption.
Signs and symptoms
 Backache – which may radiate circumferentially and where the patient may complain of a tight band
around the waist
 Weakness in the lower limbs
 Abnormal sensation in the lower limbs – pins and needles, tingling sensations, crawling insects, etc.
 Bladder symptoms
 Constipation.
Assessment
 A quick yet proper assessment can help to arrive at an accurate diagnosis, which can help to maintain
or restore motor functions in patients who would otherwise face disability for the rest of their life.
 SCC is common in patients with advanced cancer of the breast, lungs or prostate gland.
 A careful history and neurological examination should be made, including looking for what sensory
level applies.
 Ask about bladder and bowel sphincter function.
Management
 Most important is to think of the diagnosis and to start treatment before irreversible neurological loss
occurs.
 Start high-dose steroid dexamethasone 16mg in divided doses.
 Arrange appropriate investigations such as x-ray, bone scan, CT myelogram or MRI scan, depending on
availability.
 Refer for urgent (within 1 day) radiotherapy if available.
 Surgery may also be considered, depending on the patient’s condition and the availability of facilities
and surgeons.
 Once neurological loss has occurred it is often irreversible, but good rehabilitation will maintain
function and prevent complications.

Choking
 Choking is the inability to breathe as a result of acute obstruction of the pharynx, larynx or trachea.
 This can be due to local tumour or neurological swallowing difficulties, as well as a more general
obstruction.
Assessment and management of choking from local tumours
 Acknowledge the patient’s and family’s fears.
 Discuss interventions truthfully with the patient and family.
 High-dose steroids may be useful to reduce the swelling around the obstructing tumour.
 Palliative radiation, if available, may also help.
 Midazolam 5mg sc can help to sedate the patient and reduce anxiety.
 Rectal diazepam can be used, especially in the community.
 In children, especially with a sudden onset of choking, think about foreign bodies!

Stridor

43
  A stridor is a high-pitched sound of breathing in partial laryngeal or major-way obstruction.
 It is common in head and neck tumours or mediastinum.
 It causes exhaustion from labored breathing and anoxia.
Causes
 Pressure on the upper airways by extrinsic compression caused by such things as enlarged lymph
nodes or primary tumour in the lungs, head or neck.
Management
 If impending obstruction is diagnosed, consider whether pre-emptive treatment with radiotherapy or
tracheostomy is indicated.
 Discuss the possible events with the patient and their family.
 Offer sedation with morphine and benzodiazepines; 5–10mg morphine and 5–10mg diazepam given
PO/ SC/IV/PR depending on the patient’s condition.
 In hospital, and if facilities are available and the condition of the patient allows, consider:
 Bronchoscopy
 Chemotherapy
Management in children
 In children, consider dexamethasone high dose 0.5mg/kg 1V over 2 minutes
 Nebulise children with adrenaline: 1ml of 1: 1000 added to 4mls of saline, with a minimum of 30
minutes between sessions.
 Give parenteral morphine and/or benzodiazepine if the breathlessness is severe (Note: oral/rectal
diazepam works as fast as parenteral and so you can use injectable diazepam rectally.)

Superior vena cava obstruction (SVCO)

 SVCO is the partial or complete obstruction of blood flow through the superior vena cava into the right
atrium.
 SVCO usually results in impairment of the venous return.
Causes
 External compression by tumour or lymph nodes, or thrombosis as a result of compression.
Signs and symptoms
 Dyspnoea
 Facial/upper body including arms swell
 Headaches
 Visual changes
 Unclear mind (muzziness)
 Cough
 Dysphagia.
Some patients may complain of a sensation of drowning. This condition is common in patients with tumours
within the mediastinum, i.e. bronchial carcinoma, cancer of the breast and lymphoma.
Assessment
 Examination may reveal engorged conjunctivae, peri-orbital oedema, dilated neck veins and the
collateral veins on the arms and chest wall.
 Late signs include; pleural effusions, pericardial effusion and stridor.
Management
 In advanced disease the patient needs relief of their acute symptoms.
 Give high-dose corticosteroids (e.g. dexamethasone 16mg PO/IV) and, if available, urgent
radiotherapy.

44
  At the same time, treat dyspnoea symptomatically with morphine (5mgs 4hrly) and/or a
benzodiazepine.
 Practical management of dyspnoea is also important – e.g., teach the patient how to breathe slowly,
and encourage a calm environment.
 Without treatment, SVCO carries a very poor prognosis.
SPINAL CORD COMPRESSION
 In SCC, the spinal cord is compressed causing neurological symptoms.
 Cord compression occurs when there is extrinsic or intrinsic obstruction to the spinal cord.
 If it is not managed quickly, it progressively turns into irreversible neurological damage (paralysis).
 Be alert for patients with new thoracic back pain.
Causes
 Vertebral metastases, leading to collapse, is the most common cause
 Epidural infiltration
 TB should be considered
 Less often, there is a vascular interruption.
Signs and symptoms
 Backache – which may radiate circumferentially and where the patient may complain of a tight band
around the waist
 Weakness in the lower limbs
 Abnormal sensation in the lower limbs – pins and needles, tingling sensations, crawling insects, etc.
 Bladder symptoms
 Constipation.
Assessment
 A quick yet proper assessment can help to arrive at an accurate diagnosis, which can help to maintain
or restore motor functions in patients who would otherwise face disability for the rest of their life.
 SCC is common in patients with advanced cancer of the breast, lungs or prostate gland.
 A careful history and neurological examination should be made, including looking for what sensory
level applies.
 Ask about bladder and bowel sphincter function.
Management
 Management is designed for symptom control as well as treatment of the underlying cause.
 If the patient has adequate collateral circulation and symptoms are minimal, treatment may not be
required.
 Patient with SVCS should be maintained when the bed is elevated. Oxygen should be administered in
cases of dyspnoea
 Spinal cord compression is an emergency as the patient may become permanently paraplegic if the
compression is not relieved as soon as possible.
 Most cases of spinal cord compression (85-90%) are due to vertebral metastases invading the epidural
space posteriorly and causing compression of the spinal cord, 10% are due to paravertebral masses,
such as lymph nodes in lymphoma, compressing the cord.
 Blood flow is greatest to the thoracic spine so this is the site of most blood borne metastases in
contrast to degenerative disease which predominantly affects the lumbar spine so beware the patient
with cancer who has new thoracic back pain
 The patient may present with back pain which may be worse on coughing or sneezing. This is
commonly described as a band-like pain, like tightening a belt, radiating from the spine.
 The pain may be associated with weakness of the arms or legs, urinary retention and constipation.
45
  In lesions above L1, the patient will present with upper motor neurone signs and often a sensory level
 Lesions below L1 will produce lower motor neurone signs and peri-anal numbness (caudal equina
syndrome).
 Investigations should be considered if available and affordable such as: X-ray of spine, bone scan, CT
myelogram, MRI (magnetic resonance imaging although not widely available or affordable in the
African setting, this is the investigation of choice to confirm SCC).
Treatment:
 Rule out an infectious cause (for example TB). However, this could delay treatment, and treatment
with steroids should commence before investigations: dexamethasone 16-24mg oral or IV. This will
reduce the inflammation around the tumour and spinal cord and may improve leg weakness and buy
time before other treatments are undertaken.
 Analgesia may need to be commenced or titrated, depending on the patient’s previous medications.
 Definitive treatment: Radiotherapy when available, patients should be referred for radiotherapy as
soon as possible within 24 hours of symptoms developing. Or: Neurosurgical decompression of the
cord may be appropriate in a minority of cases.

Haemorrhage
 Haemorrhage is profuse bleeding from one of the major blood vessels, e.g. the carotid artery.
 While uncommon, haemorrhage can be a frightening event for patient and carers.
 Haemorrhage is, however, often predictable and needs to be proactively managed – e.g., make
medicines available in the home care setting in case the possible emergency occurs.
Causes
 Catastrophic bleeding from a large blood vessel due to tumour erosion from areas such as the head
and neck, stomach, pelvis, bladder or lungs.
 Patients with cirrhosis may also have torrential bleeding from oesophageal varices.
 Many patients also have disorders of their blood-clotting systems.
 Low platelets associated with malignancies (bone marrow infiltration) and HIV.
Assessment and management
 The first rule of management is that the patient should not be left alone until the bleeding is
controlled.
 If there is a risk of bleeding, anticoagulants such as warfarin should be stopped or kept at the lowest
possible doses.
 Other medications which may be contributing to the bleeding should be reviewed and discontinued if
not essential to symptom control.
 Consider radiotherapy referral in the following cases;
 Haemoptysis from lung tumours
 Ks and fungating tumours
 Bleeding from head and neck tumours
 Haematuria due to bladder cancer
 Rapidly growing erosive tumour.
 If there is a history of smaller bleeds, consider tranexamic acid 0.5mg to 1g bd /tds if available.
 For surface bleeding from tumour areas, consider gauze soaked in adrenaline (1ml) or crushed
tranexamic acid applied topically.
 Isolated bleeding vessels may be amenable to surgical ligation
 A severe haemorrhage leading to a terminal event may be anticipated in some patients. In such cases,
a number of measures can be implemented including:
46
  Dark towels can be kept nearby for family (as blood appears to be of much larger volume on
white/pale surface)
 Sedation with benzodiazepines such as diazepam 10 mg PO/PR maybe given in order to lessen anxiety
and fear in the event of catastrophic bleeding although events may be too rapid to benefit from
sedation
Management in children
Epistaxis (severe nose bleed) is particularly prevalent in children with hematological malignancies.
 In children, aim for rapid and complete sedation with benzodiazepines, and/or opioids if available; use
parenteral routes.
 If able to swallow, give children double the usual dose of morphine with or without diazepam.
 If unable to swallow, give large doses of morphine and diazepam rectally. Rectal valium dose:
 If weight is not known: <3years 5mg; >3years up to 10mg
 If weight known: 0.5–1mg/kg up to a maximum of 10kg.

Hypercalcaemia
 Hypercalcaemia is a threatening metabolic disorder associated with cancer.
 It is common in patients with breast cancer, multiple myeloma, and head, neck and renal tumours.
 This is when the serum level of calcium is > 10.5 mg/dl.
 Hypercalcemia associated with malignancy is referred to as Hypercalcaemia of Malignancy (HCM) and
is commonly associated with primary cancers of the breast, lungs, and neck, kidney oesophagus
gastrointestinal tract, cervix, leukemia, multiple myeloma and melanomas. HCM most often results
from bone metastasis. There is release of calcium from the bones and this causes hypercalcaemia. In
addition, Cancer treatment modalities such as estrogen, anti-oestrogen agents are associated with the
HCM development.
 Non cancer related factors associated with the development of hypercalcaemia include; immobility,
dehydration, excessive intake of calcium and Vitamin D, decreased parathyroid hormone levels,
vitamin A intoxication.

Causes
 Specific cancers
 Treatment modalities
 Non-malignant causes
 Lytic bone lesions, thus causing calcium to be released from the bone, along with a decrease in the
excretion of urinary calcium.
Signs and symptoms
 General malaise
 Nausea and vomiting
 Anorexia
 Constipation
 Bone pain
 Thirst and polyuria
 Polydipsia
 Severe dehydration
 Drowsiness
 Confusion and coma
 Cardiac arrhythmias.
47
  Mental state changes
 Hallucinations
 Jumbled speech
 Depression and fatigue
 Patients may report visual changes
Assessment and management
 Treatment of hypercalcaemia can markedly improve symptoms even in patients with advanced
disease.
 Proper management of hypercalcaemia makes end-of-life care and management less traumatic for the
patient and the carer.
 The patient may be admitted for hydration and bisphosphonate therapy (e.g. disodium pamidronate
60–90mg in sodium chloride 0.9%, 500ml over 2–4hr). However, this treatment might not be available
due to cost.
Management and Care
 The management of HCM may require treatment of causal malignancy. This may require
chemotherapy, radiation therapy and/or surgery.
 Dehydration; patient should drink 1 to 2 litres of fluids per day if able to tolerable oral fluids
 Patients with moderate to severe HCM (more than 13mg/dl) may need 5 to 10 litres of fluid to restore
extra cellular fluid balance.
 Administration of saline may also be required until the volume is restored
 Patients with HCM due to steroid responsive tumours may benefit from corticosteroids therapy.
 Management of HCM may also require symptom management and increasing mobility.
 The patient should be assessed for constipation and treated. Bone pain can be treated with non-
steroidal anti-inflammatory drugs (NSAIDS).

PAIN ASSESSMENT AND MANAGEMENT

Definition of Pain
 Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue
damage, or described in terms of such damage”.
 Pain is whatever the experiencing person says it is, existing whenever he says it does.”

Physiology of pain
 Pain is caused by the stimulation of free nerve endings (nociceptors) causing impulses to be carried
along the peripheral nerves to the dorsal horn of the spinal cord.
 There they synapse with cells of the spinothalamic tract which carry the impulses up the spinal cord,
through the brain stem to the thalamus.
 From the thalamus impulses are delivered to various areas of the cerebral cortex that allow the
perception of and reaction to pain.
 Free nerve endings in the skin and connective tissues (Somatic nociceptors) and viscera
 (Visceral nociceptors) may be stimulated physically but are more commonly activated by chemical
stimuli due to tissue injury or inflammation.
 Tissue injury results in the production and accumulation of a variety of analgesic substances, including
prostaglandins, bradykinin, serotonin, histamine, potassium and hydrogen ions
Total pain
Pain is influenced by many different factors and therefore total pain encompasses four dimensions: Physical,
Social, Psychological and Spiritual. Pain can affect the patient in the following ways:
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Types of Pain
 This is unpleasant and emotional experience associated with actual or potential tissue damage.
 It is what the patient says hurts or unpleasant sensory and emotional experience.
Classification of pain

Classification of pain according to damage of nerves

Pain can be divided into two i.e. normal or nerve pain.
Nociceptive pain (normal): this indicates that nerve pathways are intact and the feeling of pain is a normal
response to stimulus.
Somatic pain: There is tissue injury to the skin, muscle, bone, or organ. This pain is experienced as nagging,
throbbing, and aching. An example of it is a toothache, burns etc respond well to standard pain medication
according to the WHO ladder.
Visceral or organ pain explained as crampy bowel pain or nagging it benefit from additional medication.
Neuropathic pain (nerve pain)
 There is damage to the nerve pathways causing abnormal response to stimulus. It may be resistant to
opioids.
 It is explained as burning, shooting, prinking, electric shock, numb. Examples are neuropathy due to
ARV mediation, which is described as burning pain.
 It can also be HZ pain referred to as shooting, pricking, and cold, numb, electric shock.
 Physical findings show hypersensitivity or numbness. Sometimes non-painful stimulus e.g. touch feels
pain usually needs additional medication
 Neuropathic pain is common in cancer and AIDS patients especially on ARVS, onset and timing helps to
determine if it is Disease or Drug related. it may be due to virus or opportunistic infections e.g. HZ.
Other causes include DM, vitamin deficiency and syphilis .In cancer this pain may be due to Tumor
compression or infiltration e.g. burning and shooting pain from buttock to leg due nerve root
compression by sacral tumor radiation injury surgical trauma e.g. burning pain on skin post
mastectomy.
 Chemotherapy Induced damage to nerves e.g. cisplantin causes tingling pain in feet.
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Classification of pain according to duration of pain
Acute Pain
 Description: It is characterised by help-seeking behaviour such as crying and moving about in a very
obvious manner
 Causes: Definite injury or illness
 Signs and symptoms: Definite onset, duration is limited, and predictable, clinical signs o sympathetic
over activity; tachycardia, pallor, hypertension, sweating, grimacing, crying, anxious, papillary
dilatation
Chronic pain
 Description: It does not have some of the obvious physiological effects that characterize acute pain.
Unless chronic pain is overwhelming, patients rarely show the typical picture of distress associated
with acute pain such a fractured bone or acute abdominal emergency.
 Causes: It results from a chronic pathological process.
 Signs and symptoms: It is of gradual or ill-defined onset continues unabated and may become
progressively more severe. The patient may appear depressed and withdrawn, and there are usually no
signs of sympathetic over activity.
Classification of pain according to situation
 Breakthrough – a transitory exacerbation of pain that occurs on a background of otherwise controlled
pain;
 Incident pain – occurs only in certain circumstances e.g. after a particular movement;
 Procedural pain – related to procedures or interventions;

Factors influencing pain

 Pain is influenced by psychological factors as well as spiritual issues and social circumstances. These
factors can increase or decrease pain sensation.
 The concept of total pain reminds us that we need to holistically assess and manage chronic pain.
 The definition of pain by the International Association for the Study of Pain (IASP) draws attention to
the emotional component of the pain experience.
 Pain is often expressed in emotional terms such as agonizing, cruel, terrible etc.
 Integrated multi-disciplinary teams need to be involved in the management of chronic pain.
 Holistic support for a patient with chronic pain can have a profound effect on a patient’s quality of life
and may focus on addressing feelings of helplessness and on building resilience.
 Women experience pain differently from men as a result of biological, psychological and social factors.
Men and women also respond differently to pharmacological and non-pharmacological pain
management.
 For more information on the management of psychological, spiritual, cultural and social pain, refer to
APCA’s Beating Pain pocketbook, or the core texts listed in the references.
Assessing and managing pain principles
 All areas of total pain (psychological, spiritual, social, cultural and physical) must be addressed.
 Pain can be caused by a disease (e.g. HIV), its consequences (e.g. opportunistic infections), treatment
(e.g. chemotherapy) or concurrent disorders (e.g. arthritis).
 Palliative care aims to free patients from pain so that it doesn’t affect their life.
 Pain is subjective – it is what the patient says it is.
 Pain should be managed according to the WHO guidelines and analgesic ladder.
 Particularly important in children are incident and procedural pain

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Clinical presentation of pain
Pains do present differently depending on the type as well as cause of paint
 Visceral pain – this type of pain is not well localized. It presents as aching and it is constant
 Bone pain – this kind of well localized with local tenderness. Nagging like toothache, worse on
movement and weight bearing; caused by release of prostaglandins.
 Colic- this is gripping pain. It’s associated with spasms in the middle or upper abdominal (bowel),
related to micturition (bladder).
 Raised intracranial pressure- presents as generalized headache worse in the mornings and on lying
down and coughing. This kind of pain may be associated with nausea, projectile vomiting blurred
vision.
 Neuropathic pain-constant or worse on movement, burning, sharp, stabbing, shooting or nagging ache,
associated with altered sensation, and may be dermatomal.
 Other kinds of pain Spiritual pain – this kind of pain is emotional. The patient experiences dreams or
nightmares.
 There may be refusal to take medication or an active form of self arm.
Pain assessment
 Carry out a thorough physical examination - this should be recorded both in writing and on a body
chart
 Further investigations should be limited to those likely to have a significant bearing on treatment
decisions.
 Evaluate the extent of the patient’s disease.
 Assess other factors that may influence the pain i.e. psychological, social, cultural, and spiritual
Clinical assessment
 The first step in effective pain management is a thorough holistic assessment
 The following are key points to remember when carrying out pain assessment:
Physical assessment
Ask specific questions to identify
 The onset of the pain
 The exact nature of the pain
 The site and radiation of the pain.
 The type of pain
 The duration of the pain and whether it has changed.
 Precipitating/aggravating or relieving factors. =-> The impact on functional ability, mood and sleep.
 The effect of previous medications.
 What the pain means to the patient (i.e. that they are deteriorating/dying).
The PQRST tool offers valuable guidelines for questions to help assess and measure pain:
 Precipitating and relieving factors: What makes your pain better/worse?
 Quality of pain (e.g. burning, stabbing, throbbing, aching, and stinging): How would you describe your
pain? What does it feel like? Ask (where possible) the patient to describe their pain for you. The choice
of words in this description is important — for example, words such as shooting’. burning’, dull’ or
aching could refer to neuropathic pain, which will require a specific type of drug intervention.
 Radiation of pain: Is the pain in one place or does it moves around your body?
 Site and severity of pain: Where is your pain? (use a body chart) How bad is it? (Use a Visual Analogue
Scale or other rating scale).

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  Timing and previous treatment for pain: How often do you get the pain? Are you pain free at night or
on movement? Are you on any pain treatment or have you been in the past? Does it beep?

 Carry out a thorough physical examination - this should be recorded both in.writing and on a body
chart.
 Further investigations should be limited to those likely to have a significant bearing on treatment
decisions.
 Evaluate the extent of the patient’s disease.
 Assess other factors that may influence the pain i.e. psychological, social, cultural, and spiritual.
Psychological assessment
Ask specific questions to identify:
 The history of the illness and the understanding that the individual has of what is happening, including
their emotional and psychological response.
 How the illness is affecting the individuals ability to carry out his/her role, e.g. as a parent, mother,
lover, bread-winner etc.
 Napes and fears.
 Plans for the future.
 Losses and disappointments that have already been Iced by the individual
 Any unfinished business.
 Things that the individual wants to accomplish.
Social assessment
Ask specify questions to identify:
 How the illness is affecting the person’s ability to carry out his/her rote, e.g. as a parent, mother, lover,
bread-winner etc.
 Family history: who is around, where are they, how important are they, how supportive are they?
 Life stresses: what is happening with regard to money, jobs, housing, children. sources of support etc
 The use of a family tree (Genogram) Encourages people to open up areas of concern.
 Helps the professional to see patterns and perceive family conflicts.
 It acts as a therapeutic tool to help people talk about their present and previous experiences, death
and their vulnerabilities.
Spiritual assessment
Assess in terms of
 Past: regrets, guilt. shame.
 Present: anger. grief for future loss of own life, lost sense of purpose.
 Future: hopes/fears of dying and death,
Cultural assessment
Assess in terms of
 How symptoms are described.
 Language.
 The role of the family, individual family members and rho family.
 Issues of autonomy and confidentiality.
 Attitudes towards IF-health.
 Attitudes towards food and diet.
 Western medicine and other therapies.
 Attitudes towards death,
 Rituals surrounding death.
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Pain assessment tools
 Pain assessment tools are tools to help us quantify and qualify the patients’ pain.
 A baseline is established on the initial consultation and from which progress is plotted usually on a
graph. Pain rating scales are useful in:
 Establishing the severity of pain the patient is experiencing.
 Following the course of patients pain. -
 Assessing the effect of treatment interventions.
 Simple techniques should be used.
 Initially it is important to ascertain the site of an individual’s pain, and whether they have pain in more
than one part of their body.
 Pain measurements must be done at regular intervals: either 6 or 4 hourly — or in severe cases 2
hourly.
 Remember that most measurement instruments do not acknowledge the presence of anxiety and can
therefore produce false high or false low scores. The behavioral indicators of anxiety are more or less
the same as for pain and it is possible to measure anxiety instead of pain.
 There are a number of different measurement tools available both for adults and children and a
sample of tools are recommended below.
 A body chart is a useful tool for doing this, and individuals are asked to mark the sites of their pain on
the body chart.

Types of pain assessment tools

The Numerical Rating Scale

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  The health worker asks the patient to race their pain intensity on a numerical scale that usually ranges
from 0 (indicating No pain’) to I0 (indicating the Worst pain imaginable’). (It is easier from 0-5)
 A variation of this scale is a verbal-descriptor scale, which includes descriptors of pain such as ‘Mild
pain’, ‘Mild-to-Moderate pain’. Moderate pain’ etc.

The Hand Scale

 The hand scale ranges from a clenched hand (which represents No hurt) to live extended digits (which
represents Hurts worst’), with each extended digit indicating increasing levels of pain.
 Note: it is important to explain this to the patient as a closed fist could be interpreted as worst possible
pain in some cultures. An example explanation would be: 1 would like to find out the level of pain that
you have (for each pain described); can you tell ink on a scale of 0-5. if 0 is no pain at all, I is a little
pain, 2 a brt more, 3 is quite some pain, 4 is quite a lot of pain and 5 is overwhelming pain- the worst
pain imaginable. Where would you put your pain on that scale?’ You must find an explanation that
works for you and is tailored to the patient.

The Faces Scale

 This scale comprises six cartoon faces, with expressions ranging from a broad smile representing no
hurt’ to a very sad face representing hurts worst. –
 Ensure that the patient is adequately trained in how to use the tool. In particular make sure they are
rating their pain and not their emotion.
 Experiences have ranged with regards to the use of the faces scale in Africa, with many people
preferring the hand scale.

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PAIN ASSESSMENT IN CHILDREN

The management of pain in children is a complex issue. Whilst there is much in terms of overlap between the
management of pain in children and in adults, there are specific issues in children that need to be addressed
and will be discussed in this session.

Myths conception about pain in children and infants

The goals of pain measurement are to

 Determine the intensity/severity of pain.
 Determine the location of pain.
 Determine the efficacy of treatment.
Barriers to pain assessment and measurement in children include:
 Lack of age appropriate and validated pain assessment tools.
 Lack of knowledge of which tools to use for the different age groups among children.
 Lack of training on the use and implementation of pain assessment tools.
 Lack of knowledge on how to interpret a pain score.
 Lack of knowledge on how to differentiate between anxiety about their pain and psychological pain.
 Lack of understanding of children’s experience of pain.
 Children may not report their pain as they maybe.
 Frightened of talking to doctors or nurses
 Frightened of finding out that they are sick

55
  Unwilling to trouble their carer’s.
 Unwilling to get an injection
 Unwilling to go back or keen to leave the hospital
 Nervous of side effects from pain medication.
The assessment process
 Pain is subjective however a standard assessment tool or guideline is helpful so that can see changes in
pain over time.
 The QUESTT tool is useful for pain assessment in children.
 Q - Question the child if able to respond or the parent/caregiver if the child is not able to,
 U - Use pain rating scales if appropriate
 E - Evaluate the behaviour and physiological changes
 S - Secure the parents involvement
 T - Take the cause of pain into account
 T - Take action and evaluate results.
Question the child:
1. Do you have any hurt/pain?
2. Can you show me where it hurts?
3. Does it hurt anywhere else?
4. When did the pain/hurt start?
5. Do you know what night have stared the hurt/pain?
6. How much does it hurt(you can use a pain rating scale at this point)
7. What helps to take away the pain or make it better?
It is also important to find out some of the child’s history e.g.:
Use of pain rating scales

56
57
Eland Body scale
This tool helps to assess multiple sites and differing intensities. Get the child to assign colors to the different
categories e.g. no pain - green. Little pain - yellow, moderate pain - orange and severe pain - red.
Ask them to colour in the bodies where their pain is, using the different colors to depict different levels of pain
in different areas.

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The Faces Scale
 This scale comprises six cartoon faces, with expressions ranging from a broad smile representing no
hurt’ to a very sad face representing hurts worst. –
 Ensure that the patient is adequately trained in how to use the tool. In particular make sure they are
rating their pain and not their emotion.
 Experiences have ranged with regards to the use of the faces scale in Africa, with many people
preferring the hand scale.

The Hand Scale

 The hand scale ranges from a clenched hand (which represents No hurt) to live extended digits (which
represents Hurts worst’), with each extended digit indicating increasing levels of pain.
 Note: it is important to explain this to the patient as a closed fist could be interpreted as worst possible
pain in some cultures. An example explanation would be: 1 would like to find out the level of pain that
you have (for each pain described); can you tell ink on a scale of 0-5. if 0 is no pain at all, I is a little
pain, 2 a brt more, 3 is quite some pain, 4 is quite a lot of pain and 5 is overwhelming pain- the worst
pain imaginable. Where would you put your pain on that scale?’ You must find an explanation that
works for you and is tailored to the patient.

Evaluating behavior and physiological changes

Children of different ages and development have different behavioral responses to pain (see table below).
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Physiological responses to pain include increased pulse, raised BP, sweating, pallor or flushing, decreased
oxygen saturation, dilated pupils, increased tone, rapid shallow respiration and hyperglycemia, Adaptation
however occurs with ongoing pain and physiological manifestations may be absent in chronic pain.

Secure the caregivers involvement:

 Listen to mothers, fathers and caregivers; they know the child best.
 Include them in decision-making.
 They are more tuned to subtle changes in behaviour.
 They know what works best to comfort the child.
Take the cause of pain into account:
 Consider the pathophysiology of the underlying problem, i.e. the cause of the pain.
 Descriptions of the type of pain help to determine its underlying cause which helps to make decisions
on its management.
Take action arid evaluate results:
 Assess pain 4 develop a treatment plan 4 reassess (use pain rating scales) 4 reverse treatment plan
 Pain diaries are also help full for constant re-evaluation in children with chronic pain.

PAIN MANAGEMENT
 Relieve pain as fast as possible and prevent its return.
 Use pharmacologic and/or non-pharmacologic methods.
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  Control pain while treating the underlying cause (e.g. infection).
 Reassess pain regularly using assessment tools.
 For you to manage pain in terminally ill patients you need to understand the general principles of pain
management and these include:
 Total assessment
 Total diagnosis
 Total Management.

 This therefore entails:

 Use of appropriate interventions: pharmacological and non-pharmacological
 Education or patient, family and all the care givers about the pain management plan
 Ongoing assessment of treatment outcomes (continued pain assessment)
 Regular review of the pain management plan of care
 Use of other members of the multi-disciplinary team
 Flexibility is essential-successful plans are tailored to the individual patient and family
 Willingness to ask for help from colleagues with expertise when the plan is not effective at
controlling the patient’s pain

 You also need to understand that;

 Pain is often temporary so you need to know how to discontinue treatment

 Pain usually responds to the management of infection causing the pain
 Pain often recurs with the same or another infection
 Management has to be innovative if pain relief is to be achieved most of the time
 Investigations or disease treatment should not be delayed
 The underlying cause of pain needs to be treated for example giving radiotherapy for cancer and
anti-fungal for opportunistic fungal infections).

Principal of effective pain management

 The WHO set out some basic principles for pain management:
 By the mouth - always give treatment orally when possible.
 By the clock - persistent pain requires regular round the clock dosages (i.e. 4 hourly oral
morphine).
 By the ladder - use the WHO analgesic ladder as a guide to management, you Can move
stepwise up or down the ladder.
 By the patient - dosage is determined on an individual basis as no two patients are the same.
 The choice of drug for managing pain should be appropriate for the type and severity of pain and a
combination of medication should be used as appropriate.
 In administering analgesia It is important to:
 Avoid unnecessary delay in treating the pain especially if it is severe.
 Give medication in adequate dosages. -
 Schedule administration according to drug pharmacology.
 Titrate the dose for each individual patient.
 Give written instructions for patients.
 Prescribe a break through dose of analgesia.
 Explain and give treatment to prevent side effects.

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  Treat other symptoms such as constipation and muscle spasms aggressively as these may
exacerbate the pain

Non-pharmacological pain management

This can be:
 Physical: e.g. massage, exercise, physiotherapy, surgery
 Psychological: strengthen the patient’s coping mechanisms through counselling, relaxation therapies
etc.
 Social: help the patient resolve social or cultural problems through community resources, financial and
legal support, etc.
 Spiritual: e.g. religious counselling and prayer.
Pharmacological pain management
 Use WHO guidelines. Pain management should be by the:
 Mouth: use the oral route where possible.
 Clock: analgesia should be given at fixed time intervals. Give the next dose before pain recurs.
 Individual: involve adults and children fully in their care. Link doses to their daily routine.
 Ladder: choose analgesics according to the WHO analgesic ladder (see below), covering mild,
moderate and severe pain.
 The choice of analgesic depends on the severity, site and type of pain. Start patients on Step 1
analgesics for mild pain; if ineffective, change to a Step 2 analgesic, then to Step 3 as required.
 If Step 1 or 2 analgesics don’t work, don’t switch to another analgesic at the same level: move up a
step.
 A combination of a non-opioid and an opioid drug is effective (they have different modes of action).
Don’t combine weak with strong opioids.
 Other medications for managing pain (adjuvants) can be combined with Step 1, 2 or 3 drugs.
 If the oral route isn’t possible, use alternative methods. These can include rectal, intravenous,
nasogastric tube, transdermal and subcutaneous routes.
 The majority of patients can have their pain controlled in the home care/outpatient settings using the
WHO analgesic ladder as a guide. Only in very severe cases may they need to be an inpatient.

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Mild pain – Step 1
Paracetamol
 Adult dose: 500mg–1g po 6hrly; max daily dose 4g.
 Note: hepatotoxicity can occur if more than maximum dose is given per day. Can be combined with a
non-steroidal anti-inflammatory drug (NSAID).
Ibuprofen (NSAID)
 Adult dose: 400mg po 6–8hrly. Maximum dose 1.2g per day.
 Give with food and avoid in asthmatic patients.
 Pain due to bone metastases has been said to be particularly responsive to NSAIDS.
 NSAIDs have an additional anti-inflammatory action. They are therefore effective for bone and soft
tissue pains. They should be taken after food, if possible because of gastric irritation.
 Paracetamol acts centrally (opposed to a peripheral action of NSAIDs) and therefore both Ca be given
together.
 Caution: can cause serious side effects, e.g. gastro-intestinal (GI) bleeding or renal toxicity. If GI
symptoms occur, stop and give H2 reception antagonist (e.g. Ranitidine).
Diclofenac (NSAID)
 Adult dose: 50mg po 8hrly. Maximum dose 150mg per day.
Moderate pain – Step 2 (weak opioids)
Codeine
·· Codeine is the commonest weak opioid:
.„ Adult dose: 30–60mg po 4 hrly (max dose 180–240mg per day)
·· Codeine is often combined with Step 1 analgesics. Give laxatives to avoid constipation unless patient has
diarrhoea.
·· If pain relief is not achieved on the ceiling dose (max dose 240mg per day), move to a strong opioid (see Step
3 below).
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Tramadol
 Adult dose: 50–100mg po 4–6hrly.
 Note: Start with a regular small dose and increase if no response observed. Dose limit is 400mg/day.
 Use with caution in epileptic cases, especially if the patient is on other drugs that lower the seizure
threshold. Tramadol may be costly and is only recently available in Uganda.
Step 3 - Strong Analgesics for Severe Pain
Morphine
 Morphine is the ‘gold standard’ against which other opioid analgesics are measured.
 When used correctly, patients don’t become dependent, tolerance is uncommon and respiratory
depression doesn’t usually occur.
 The correct morphine dose is the one that gives pain relief: there is no ‘ceiling’ or maximum dose —
the right dose is the one that controls the patient’s pain without side effects, however you need to
increase the dose gradually.
 Starting dose: 25—20mg po 4hrly depending on age, previous use of opiates, etc.
 Patients changing from regular administration of a Step 2 opioid (e.g. codeine phosphate 3Omg q4h)
should start on morphine 10 mg po 4hrly.
 Little patient is cachexic or has not progressed onto Step 2 analgesics, start morphine at 5mg po 4hrly.
 Start frail/elderly patients on morphine at 2.5mg po 6—8hrly, due to the likelihood of impaired renal
function.
Action of morphine
 Morphine acts on the opioid receptors in the brain and spinal cord to produce analgesia.
 The perception of pain is altered both by a direct effect on the spinal cord, modulating peripheral
nociceptive input, arid by activating the descending inhibitory systems from the brain stem and basal
ganglia.
 Morphine also acts on the limbic system and on higher centres to modify the emotional response to
pain.
 The system effects, including those affecting the gastrointestinal and respiratory tracts, arc partly
centrally mediated via the autonomic nervous system and may partly be due to a direct effect on
opioid receptors in the peripheral tissues.
Indications
 Morphine is the drug of choice for moderate and severe pain. It is also used for the treatment of
diarrhoea, cough and dyspnoea.
Common Side effects
The common side effects of morphine include:
 Constipation — therefore you should always give a laxative alongside morphine (unless the individual
has diarrhoea) e.g. Bisacodyl 5mg at night increasing the dose to l5mg if needed.
 Nausea and vomiting — if this occurs, give anti-emetics e.g. plasil 10mg 8 hourly or Haloperidol .5mg
once a day
 Drowsiness — may occur in the first few days of taking morphine. If it does not improve after three
days reduce the dose of morphine.
 Itching — not very common but if it occurs reduce the dose of morphine
Contraindication
 Morphine should be given with caution to patients with renal impairment, severe hepatic dysfunction,
significant pulmonary disease (including acute or severe bronchial asthma), and CNS depression from
any cause.

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  Elderly patients and those who are debilitated or cachectic should initially be treated with reduced
doses.
Dose
 Morphine has no ceiling effect to the analgesia.
 There is no standard dose of morphine for the treatment of chronic pain in patients with cancer and
HIV/AIDS.
 It must be individually titrated for each patient and the correct dose is that which controls the pain
whilst causing tolerable side effects.
 The dose required depends on many factors including the severity of pain, the type of pain, individual
pharmacokinetic variations, the development of tolerance., and the psychosocial issues that affect the
perception of pain.
 Oral morphine solution is mainly available in two strengths in Uganda;
Titrating oral Morphine into other formulations
 Titrate the regular dose of morphine over several days until the patient is pain free. Either add the total
daily dose and the total breakthrough dose given in 24 hours and divide by six to get the new 4hrly
dose, or give 30—50% increments, e.g. 5—10—15mg etc., given as 4hrly doses. Increments of less than
30% are ineffective.
 If the patient cannot swallow, use other routes, e.g. Rectal, subcutaneous, buccal, intravenous, or
administer via an alternative enteral route such as a gastrostomy tube.
 The ratio of morphine PO:SC is 2:1, e.g. I Omg oral morphine is 5mg SC morphine.
 The ratio of morphine PO:IV is 2—3:1, e.g. 30mg oral morphine is 10mg IV morphine
 Morphine is available in immediate and slow-release oral formulations. Use slow- release morphine
once pain is controlled, dividing the total 24-hour dose into two to get the twice-daily dosage.
Pethidine
 It is useful for short term control of severe pain such as after an operation
 It is not recommended in palliative care because of its short duration of action (3 hours) and its side
effects in an effective analgesic dose.
 The side effects are due to accumulation of the metabolite norpethidine, which can cause CNS
excitation and convulsions. It often has to be given by injection to be effective which means the patient
has to be near medical assistance and it means infringing more pain to the patient. It can cause
addiction.
 There are other step 3 opioids that can be used for pain management. however these are ot currently
available in Uganda.
 5mgs per 5mls - a typical starting dose given 4 hourly –
 50mgs per 5mI and IO0mg per S ml - for patients on higher doses of morphine
Useful tips when using morphine
 Oral morphine can be absorbed through the mucosa of the buccal cavity (mouth) or of rectum, so small
amounts can be given even for unconscious patients.
 Even though a patient is on regular oral morphine they may have breakthrough pain, an additional
dose of oral morphine may be given to control this pain. This may be a one off incidence of pain but if
more frequent breakthrough doses are required this may mean the 4 hourly dose needs increasing.
 Pain has to be controlled before other problems can be addressed and treated, as it is not possible to
have meaningful discussions about psychosocial concerns if a patient has uncontrolled pain
 Pain can be caused or aggravated by psychosocial concerns, which must be addressed before good
pain control can be achieved. Where psychosocial or spiritual problems are causing or aggravating

65
 pain, no amount of well-prescribed analgesia will relieve the pain until the responsible psychosocial
issues are identified and addressed
 Oral morphine is effective for chronic severe pain and can be given for many years and the dose can
keep increasing, some patients can even take up to several hundred mgs 4 hourly.
 If the pain stimulus is removed, then the dose of morphine should be decreased gradually to minimize
the effects of physical dependence.
 Opiates can also be used as a short term analgesia: in AIDS opportunistic infections such as
cryptococcal meningitis; sickle cell crisis; burns and other painful conditions and does not cause
addiction

Myths and misconceptions about morphine use

MANAGEMENT OF NEUROPATHIC PAIN:

 Determine the cause and type of pain, this needs thoroughly history taking and examination,
determine location timing, pattern, duration and severity.
 Treat cause or source of pain if possible. tumor pressure (Radiotherapy or Dexamethasone to reduce
size),Peripheral neuropathy due to ARVS(Refer to the center to change the combination),Infection or
nerves by HIV(Consider referral for ARVS),Abscesses (Abx, incision and drainage),Herpes
zoster(consider acyclovir)
 symptom treatment (Use analgesic ladder in combination with adjuvant medications e.g. amitriptyline
or phenytoin,)
 Spiritual, social and emotional components.
 This can worsen existing pain explore and counsel then support, massage and music can also help.
 Pharmacological treatment of pain: This pain is partially sensitive to opiods so there must be a
combination of NSAIDS+ Morphine+ an Adjuvant.
 Morphine works best for nociceptive pain and whilst it can help with up to 50% of neuropathic pain,
neuropathic pain responds to adjuvant therapy typically anti-depressants. Anti-convulsants and or
steroids (specifically Dexamethasone).
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  Adjuvant drugs are a diverse group of drugs that have a primary indication other than pain but are
used to enhance analgesia in specific circumstances. In palliative care these compliment the analgesic
ladder and examples may include:

Anti-depressants
 Used to treat neuropathic pain of a burning, electric sensation.
 Most commonly used is Amitriptyline. Stat with 2.5 mgs nocte and increase to twelve hourly as
needed.
 The analgesic effect of anti-depressants is usually seen with- doses lower than required for the
treatment of depression. This occurs more quickly; response should be evident within five days. If
there is no effect in one week, the drug should be stopped.
 Use with caution in the elderly and those with cardiac disease. --> Side effects include sedation, anti-
cholinergic effects and postural hypotension.
Anti-convulsants

 Use for neuropathic pain. E.g.:

 Carbamazepine. Adult dose should start at 100mg twice a day, and can be increased to 800mg twice a
day.
 Sodium valporate 200mg – 1.2g per day.
 Gabapentin 100mg three times a day; increase up to 3.6g daily.

Note: Use Phenytoin in the absence of these drugs, at the rate of 100mg 2–3 times/day. Use Phenytoin and
Carbamazepine with caution because of the rapid metabolism of other drugs metabolized in the liver.

Antispasmodics
 Use for muscle spasm, e.g. colicky abdominal pain or renal colic. Eg:
 Hyoscine Butylbromide (Buscopan) Dose: Adult: start at 10mg three times /day; Can be increased to
40mg three times/day
NB. Can cause nausea, dry mouth and constipation

Muscle relaxants / Anxiolytics

 Use for skeletal muscle spasm and anxiety-related pain. Eg:
 Diazepam. Adult dose 5mg orally 2–3 times/day.
Corticosteriods
 Use for bone pain, neuropathic pain, headache due to raised intracranial pressure, or pain associated
with oedema and inflammation. E.g.: Dexamethasone. Adult dose 2–4mg per day for most situations,
apart from raised intracranial pressure, nerve compression and spinal cord compression. For raised
Intracranial pressure start at 24mg per day and reduce by 2mg daily to the lowest effective
maintenance dose. For nerve-compression types of pain 8mg is often used, and for spinal cord
compression 16mg is usually the starting dose.
 If dexamethasone is not available, then adults can also be given prednisolone where a conversion rate
of 4mg dexamethasone to 30mg prednisolone can be used.
Note: In advanced disease, corticosteroids may improve appetite, decrease nausea and malaise, and improve
quality of life. Adverse effects include neuropsychiatric syndromes, gastrointestinal disturbances and
immunosuppression.

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Bisphosphonates
 Use these drugs for intractable metastatic bone pain. For instance, for adults Pamidronate 90mg can
be used intravenously every four weeks.
 Side effects are fever and flu-like weakness.

Non-pharmacological methods of pain control

 Pain is influenced by psychological, cultural, social and spiritual factors.
 Determining the type of pain helps to determine its treatment.
 Psychological factors are as important in dealing with pain as the physical cause of the pain.
 Non-pharmacological pain management is the management of pain without medications, It utilizes
ways to alter thoughts and focus concentration, so as to better manage and reduce pain.\
 Complementary or alternative therapies are increasingly being used to alleviate pain. These are
therapies used together with conventional or orthodox medicine but do not replace this medicine such
as biochemical therapies like herbs, dietary supplements, flower essences, aromatherapy oils;
biochemical therapies like massage; lifestyle therapies like environment, diet, exercise and mind-body
techniques such as meditation, relaxation and imagery; bio-energetic therapies like acupuncture,
therapeutic touch etc
 Complementary therapies work to affect pain perception, assist relaxation, improve sleep or reduce
symptoms by: Direct analgesic effect, e.g. acupuncture.
 Anti-inflammatory action, e.g. herbs.
 Distraction, e.g. music therapy.
 These should be complementary to, rather than instead of, pharmacological methods and may include:
 Radiotherapy.
 Surgery,
 Communication,
 Massage.
 Heat or cold applications,
 Meditation,
 Music therapy

Pain management in children and infants

Principles of pain management in children
 The principles of pain management in children are similar to those in adults i.e.:
 Reverse the reversible- treat the underlying cause where possible.
 Determine the pathophysiology of pain where possible to determine the most suitable treatment
(nociceptive vs. neuropathic)
 Use both pharmacological and non-pharmacological methods of treatment.
 Address any associated psychological distress e.g. separation anxiety.
 Continually re-evaluate the pain and its response to treatment.
Non- pharmacological methods of pain control
 They help by giving control to the child and their family and they can reduce fear.
 Essentially they are coping strategies and do not necessarily reduce the intensity of pain and should
where possible be used in conjunction with pharmacological methods of pain control.
 Some measures that have been found to help significantly include; Warmth swaddling, feeding and
reassurance
 Gentle handling and supportive positioning
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  Distraction
 Relaxation and hypnosis
 Massage or music therapy
Non-pharmacological interventions can be divided into those that are counter- irritation and those that are
psychological methods.
 Counter-irritation e.g. heat, cold, touch/massage, acupuncture, aromatherapy, vibration etc.
 Psychological methods e.g. distraction, imagery, music therapy, hypnosis cognitive behavioural therapy
etc.
Pharmacological methods of pain control
The broad principles of analgesics used for palliative care in children are similar to those for adults and
include;
 By mouth where possible, other routes may be used on occasion.
 By the clock - analgesics should be given by a regular dosing schedule rather than a PRN basis
 By the child - pain management needs to be individualized as pain experiences will vary from child to
child
 By the WHO ladder

Adjuvant analgesics used in children

Corticosteroids
Dexamethasone, Prednisolone used for nerve root and spinal cord compression
Prednisolone dose - 1-2mg/kg/day
Useful for neuropathic pain, bone pain and IRIS (Immune Reconstitution Inflammatory Syndrome)
Anti-depressants
Amitriptyline
Used for pain due to nerve injury
Dose of Amitriptyline
2- 2 years-O.2-0.5 mg/kg (Max 25mg at night)
12-18 years lO-25mg at night increasing to a max of 75mg.
Anti-convulsants
Carbamazepine. Sodium valproate
69
Used for pain due to nerve injury nerve
Carbamazepine dose- 5-20mgJkglday in 2 to 3 divided doses
NB - drug interactions with antiretroviral therapy and can cause pancytopenia. Anti-spasmodic e.g. Hyoscine
butylbromide (Buscopan)
Used for pain due to visceral distention and colic
Dose of Buscopan
I month — 2years: 0.5mg/kg orally 8 hourly
2-5 years: 5 mg/kgp hourly
6-12 years: l’3mg 8 hourly
Can cause nausea, dry mouth and constipation,
Muscle relaxants
Diazepam
Used for pain due to dystonia spasm Dose of Diazepam
1-6 years: mg/day in 2 to 3 divided doses
6-14 years 2-I 0mg/day in 2 to 3 divided doses

Morphine use in children

 There is no maximum (ceiling dose) for morphine in chronic pain, even in- children.
 Morphine can be used at any stage of the disease to control pain and can be withdrawn if the child no
longer needs it.
 There are several myths to the use of morphine in children and these are similar to those for its use in
adults as described previously.
Prescribing oral morphine in children
 Start with a starting dose of oral morphine according to age and weight.
 Oral morphine has a half-life of 2-3 hours and so should be prescribed and given 4 hourly in children
with delayed clearance such as those with hepatic and renal dysfunction and newborns it should be
prescribed 6-8 hourly.
 Morphine should be given regularly - regular doses control pain better and ultimately results in lower
doses than if given as required (PRN).
 If the child experiences pain before the next dose of morphine is due a breakthrough dose of morphine
can be given
 The breakthrough dose is 50-100% of the 4 hourly doses.
 Morphine takes up to 30 minutes to have effect so a breakthrough dose should not be given for at
least 30 minutes from the previous dose.
 After pain has been controlled with 4-hourly short acting morphine, it can be converted to sustained
release long acting morphine that is given 2 hourly for greater convenience. To get the dose of MST
add up all the doses given in 24 hours and divide by 2.
 The dose of morphine can be increased in 2 ways.
 Increase the regular dose by 50% of the previous dose if pain is not controlled e.g. a child receiving
5mg of morphine 4 hourly could have their morphine increased to 7.5mg (+50%) 4 hourly
 Add up all of the breakthrough analgesia given in 24hours and divide this by Sand add to the
following days 4 hourly regular doses.
 It is not a problem to wean children off morphine should they improve, however when stopping
morphine particularly in children who have been taking it for more than 7 days it is important to taper
it off to prevent withdrawal symptoms. Decrease the dose by 1/3 every 3 days.

70
  The side-effects experienced by children taking morphine arc similar to those experienced by adults
and include:
 Sedation-resolves within 2-3 days
 Nausea and vomiting
 Constipation-prevented by prophylactic use of laxatives Pruritus

Summary of key points

 Children understand and experience pain.
 Good assessment of pain in children is key to good management.
 There are many barriers to pain management in children and myths with regards to pain in children.
 There arc a number of different pain scales available for use in children and which one you use
depends on the age and cognitive functioning of the child.
 The principles of pain management are similar to that in adults, however the WHO advocates for a
2~step ladder in children.
 Morphine can be used safely and effectively in children.
 Non-pharmacological methods of pain control have a key role in pain management in children.
Needs of a terminally ill patient
 Pain control
 Symptom control
 Empathetic and honest adviser
Pain is the problem and fear of patient and careers. If it is not relieved it is impossible to offer empathy and
support because the patient is frustrated and the hole mind is focused on the pain and other symptoms.
Counselling on morphine use
Patients and relatives fear use of morphine leading to failure of controlling pain. These are common questions
and answers to them
Qn; does the introduction of morphine mean the end is near?
No; it’s used when other analgesics have failed and a patient can continue carrying on his daily activity
Qn; can a patient become addicted?
No, this cannot occur I there is pain. Pain act as antagonist
Qn; do all cancer patients respond to morphine/
Some pain e.g. nerve pain may not respond, other drugs are used along morphine
Qn; will morphine make me sleep al the time?
This can occur in the first day. If it goes on for more than one day we will reduce the dose
Qn; can I stop the drug if there is nausea and constipation?
No, these are expected side effects. Nausea will last for a few doses, for constipation we shall give you some
drugs to treat it

Areas of contravancy regarding morphine

Tolerance
 Need for increased dose of drug)
 This occurs even with other drugs e.g. antihypertensive. It is less likely with morphine and intervals of
increasing dose are long. If a dose controlling pain is reached patient is maintained on that. Further
increase in dose may be due to progression.
Respiratory depression
 This is a wide spread fear among medical personal. It is rarely seen if oral morphine is used properly.
Dose is titrated according to pain.
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  Small doses of morphine can be used to relieve severe dyspnoea.
 Pain is physiological antagonist to respiratory depression
Dependence
 This is when the patient feels that he cannot live without the drug. It rarely occur with oral morphine
since it does not give a sudden high.
 Psychological dependence (addiction). There is craving and compulsive seeking behavior
 Physiological dependence. If drug is removed patient develop withdrawal symptoms. This is less
because doses used are low and life span of cancer patients is short
 Therapeutic dependence. This may occur if cause of pain is not removed. Morphine may be needed for
life. If cause is removed dose has to be titrated.
Myths surrounding the use of opioids
 Morphine is offered to patients only when death is imminent
 It is not the stage of a life-threatening illness, but the degree of pain, that dictates which medicine
to use.
 Patients are usually started on morphine when it is appropriate; some people never need morphine
while others will require it for quite a while.
 Patients can live for a long time while using morphine to control pain, which allows them a more
active life.
 Healthcare providers do an adequate job of providing adequate pain control
 There are healthcare provider barriers to good pain control.
 Doctors may neglect to ask whether a person suffers pain and might well assume that disease-
oriented treatment will control pain, such as antiretroviral treatment for the HIV-positive
patient (whereas anti-retrovirals are not analgesics).
 In some cases, zoo, if physicians prescribe a dose range for analgesia, nurses may give lower
doses,
 This results in the under-treatment of acute pain (oligoanalgesia), which eventually causes
chronic pain because of subsequent alterations within the central nervous
 When a patient states he has pain, the patient must always be behaved and be treated through
prompt implementation of adequate pain modalities.
 Pain medications always lead to addiction
 The fact is that there is no sufficient evidence that opioids lead to addiction, when prescribed
appropriately in a dose sufficient to relieve pain especially for those patients using opioids for
short-term acute pain management.
 \/hen clinicians believe that appropriate use of narcotics leads to addiction, they become reluctant
to prescribe these medications, hence depriving the patients of their right of freedom from pain.
 People on morphine die sooner because of respiratory depression
 Respiratory depression is very uncommon except in opioid-naive patients commenced on
intravenous morphine.
 Respiratory depression will not occur if morphine is given orally in a row starting dose and titrated
carefully against a patient’s response. Indeed, low doses of morphine can be safety used in patients
with end-stage COPD or lung cancer to relieve dyspnoea; it makes breathing more comfortable.
 Pain medications always cause heavy sedation
 Chronic pain can cause sleep deprivation, so most opioids will cause initial sedation.
 However, once the patient catches up on lost sleep, continuing treatment with adequate opioid
doses will allow them to resume normal mental alertness and orientation.
 People should not take morphine before their pain is severe, lest it lose its effect

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  There is no upper dose limit to the use of morphine or other strong opioids. It pain increases, the
dose can be increased — a unique feature of strong opioids such as morphine.
 Using opioids when they are needed early in the course of a terminal illness does not mean that
they will fail to work later in the disease. Tolerance to the analgesic effect of morphine is unusual.
 Some kinds of pain cannot be relieved
 All pain is not the same and therefore all pain medications do not have the same effect,
 Some pain may require a different approach, such as combining opioids with NSAIDS and/or
adjuvants.
 A thorough pain assessment can help a healthcare worker prescribe a medication regimen that will
allow the patient to keep pain at a manageable level.
 A difficult-to control need for pain relief requires more in-depth assessment and regular review of
the patient’s response to pharmacological and non-pharmacological interventions.
 Effective pain management can be achieved on an ‘as needed’ basis
 Effective pain management requires medications that are provided around the clock (and according
to the medicine half-life) in a prophylactic manner in order to prevent pain.
 Opioids that are given by the clock tend to have fewer side effects because lower effective doses
are given.
 Prescribing medication for chronic pain only as needed (pm) condemns the patient to episodes of
pain when the analgesic effect wears off.
 Opioid analgesics should be avoided in older patients
 Chronic moderate-to-severe pain frequently requires strong opioids and this should be no
exception for the elderly.
 However, due to pharmacokinetic and physiological changes in older patients, the titration of
opioids in such cases should be undertaken with greater caution.
 The best approach is to begin with a low dose (5—10mg 4-hourly) of an immediate-release opioid
and then to slowly titrate according to analgesia and side effects.
 For all opioids except buprenorphine, the half-life of the active drug and its metabolites is
increased in the elderly and in patients with renal dysfunction. It is therefore recommended that —
except for buprenorphine — doses be reduced, a longer time interval be used between doses, and
creatinine clearance be monitored.
Other myths about managing pain
 Other myths that may be believed by health professionals, but that are not true include:
 Morphine hastens death in a terminally ill patient.
 Injectable morphine works better than morphine by other routes.
 Strong analgesics such as morphine should be withheld until death is imminent.
 A patient who is sleeping cannot be in pain.
 A patient who is watching television or laughing with visitors is not in pain.
 Infants and children don’t experience pain as adults experience pain.
 Once you start pain medications, you always have to increase the dose.
 Alterations in vital signs are reliable indicators of pain in a patient.

Laws governing narcotics

International regulation
 Opiods are regulated under 1961 convention amended by 1972 protocol
 Uganda is a party to this convention. The main purpose of this treatment is to ensure availability of
opiods for medical and research use while preventing abuse.
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  Anacated laws consider the following
 Production (cultivation)
 Manufacturers
 Distribution
 Registration of all handlers
 The international board ensures that countries comply with the convention.
 Government needs to estimate the quantity of opiods the country will use each year (NDA MOH)
International board confirms the estimates before government is permitted to manufacture or import
opiods. Quantity imported should not exceed estimates. ¼ ly reports concerning opiods imported,
manufactured and distributed in the country are needed so accurate records must be kept.
 International board communicates through MOH and NDA. NDA regulates handling of drugs
Restricted or class A drugs
These include opiods e.g. morphine and pethidine. Specific procedures, storage requirements and records are
put in place and adhered to. This is to prevent diversion. Records must be kept for two years for inspection
Loss of class A drugs
This must be reported to the chief inspector of drugs (NDA) within 7 days
Expired, rejected or returned class A drugs
 Unused drugs must be returned to the prescriber or dispenser.
 If expired or rejected for any other reason return to pharmacy in charge who contact the drug
inspector
 Expired drugs should be destroyed by the pharmacy in charge WITNESSED BY THE DRUG INSPECTOR
 Destruction follows the WHO guidelines
 Details of quantity destroyed and reason must be written in the class A register
Importation of class A drugs
 Manufacture and wholesale of class A drug require an annual import license. Currently NDA allows only
national medical care (government) and joint medical store (NGO) to import narcotics.
 Private retail pharmacies and hospital access through the above license
Storage
 Powdered morphine and finished morphine should be store din
 Immovable separate cupboard
 Double locked cupboard and restricted to the public
 The key kept by pharmacist, dispenser.
Disposal
 Destruction follows WI—TO guidelines (NDA)
 Details of the quantity destroyed and the reason for destruction must be written in the class A register
Transport
 All enterprises and individual involved in the distribution system should be licensed and authorized
 This prevents drug landing into hand of drug traffickers. An anti narcotic drug squad ensures this does
not happen
Prescription
Only the following are allowed to prescribe class A drugs
 Registered medical Doctor
 Registered dentist
 Registered veterinary Doctors
 Specialized palliative care nurse or clinical officer
 Midwifes
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Prescription form must have all the details because it is a legal document. Prescription is valid for 14 days.
Supply must not exceed one month. It must be in duplicate
Prescription requirements
The following must be included;
 Name, age, sex and address
 Total doze of drugs prescribed in words and figures
 Stipulated form of drug e.g. Tablets, injections, and oral solution
 Specific strength where possible e.g.; 5mg/5ml or 50mg/5ml of oral morphine.
Importation of class A drugs
 The manufacture! wholesale of class A drugs requires an annual license, Currundy the NDA allows only:
 The National Medical Stores — NMS (government)
 The Joint Medical Stores- JNTS (NGO) to import narcotics.
 Private retail pharmacies and hospitals can access narcotics through the above agencies.
Penalties
 Any person in the possession of classified groups unlawfully is liable to;
 A fine not exceeding Uganda shillings of 2m
 Imprisonment of a term not exceeding 2yrs
 Both maybe applied
HIV/ AIDS CONCERNS IN PALLIATIVE CARE

HIV/AIDS is a "multisystem disease" which requires a multidisciplinary approach. The

Multidisciplinary approach is at the core of a comprehensive palliative care and needs to be emphasized in the
successful management of HIV/AIDS. Despite the advent of anti-retroviral therapy (ART) there is still a need
for palliative care. Over 52% of

Ugandans infected with HIV are in need of ART but cannot access it and studies have shawn the palliative care
needs of those on ART to be substantial (Harding 2011).

However, palliative care in HIV/AIDS is a challenge because of the unpredictable prognosis of the disease.

HIV related cancers

People with HIV have a higher risk of developing some cancers than' the general population. for example,
Kaposi Sarcoma, Non-Hodgkins Lymphoma, and cervical cancer. With the introduction of ART the spectrum of
some of these cancers has changed, however in Uganda these cancers may still be a problem because of poor
screening, late presentation for medical care and the lack of universal access to ART.

The major symptoms found in patients with cancer are;

 Pain
 Swelling of body parts
 Sweating
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  Fever
 Loss of weight
 Loss of appetite
 Bleeding
 Difficulty in breathing
 Psychosocial and spiritual issues
 Central nervous system symptoms, such as convulsions, paralysats etc.

The management of HIV related cancers is similar to the management of those cancers in HIV negative
patients. Routine cancer screening in all HIV infected patients is important to detect their occurrence early for
possible cure.

Role of palliative care in ART

Palliative care pre ART:

Patient preparation:
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  Deals with the anxiety of taking drugs for the rest of the patient’s life:
 Drugs taken daily at a particular time
 Fear of complications
 Observing food time
 Avoiding recreation drugs- alcohol, tobacco
 Discordance - a positive and negative couple
 exual issues- protection of negative and re-infection
 Dealing with stigma
 Identify a treatment supporter
 Encourage family support
 Establish where the patient lives
 Interface with health care worker that has knowledge of HIV
 Spiritual support
Palliative care during ongoing ART:

 Continued patient and family support

 Maintain pre-ART stage
 Home visiting and support adherence
 Support daily medication
 Identify side effects of drugs
 Identify pain and other symptoms not ART related
 Spiritual and psychological support
 Maintain appointments to pick medication and support missed appointments
 Linkage with health facilities
Palliative care during ART when it is not going well:

 Address treatment fatigue

 Support adherence
 Identify and refer patients with side effects
 Early side effects
 Late side effects
 Drug interactions
 Integrate HIV specific treatment with PC services to deal with side effects
 Support patients who have failed
 Support patients and their families on new formulated regimen

DEATH AND DYING

 Death is the end of life of a person or an organism.
 Death is the termination of all biological functions that sustain an organism.
Fears and concerns of the dying patient
 Fear of dying in pain and agony
 Fear of not being able to cope up with the death event
 Fear of how the others will survive when the loved one is gone
 Fear of what will happen after death
 Fear of the unfinished business or tasks the patient was undertaking
 Fear of staying in the house when the loved one is gone
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Are there any other fears that you could be thinking about?

Family concerns:

 Unfinished business or tasks which the patient was undertaking.

 Wanting everything possible to be done to sustain the patient's life (Resuscitation of the patient).
 Transportation of the body after death.
 Burial sites/costs.
Death and dying management principles

 Death is a part of life, and people need to be allowed to die in peace and with dignity.
 During the dying phase, patients should continue to receive adequate pain and symptom control.
 Palliative care neither hastens nor postpones death and views dying as a normal process.
 It is important that palliative care is delivered in a culturally sensitive manner.
 Palliative care patients have had a diagnosis of a life-threatening illnesses such as HIV/AIDS and cancer;
therefore there is usually a preparatory period for death.

Identifying signs of approaching death

 Certain signs are especially common at the end of life.
 And the caregiver should be able to identify them and prepare the family accordingly.
Decreasing Social Interaction:
 Many dying patients remain aware of their surroundings until the time of death.
 They may be confused about time, mumbling, staring into space, plucking at bedclothes, odd
movements of hands, hallucinations and agitation.
 It is thought that some of these behaviors are due to; failing blood circulation, electrolyte imbalance.
Multi-organ dysfunction.
Clinical management
Explain to the family what is happening, and encourage them to allow the patient to rest.
Encourage the family to be present and be observant.
Keep surroundings familiar.
Encourage good nursing care, with explanation to the family.
Encourage the family to continue talking to the patient, encourage the family to usc therapeutic touch (i.e.
holding hands etc.) with the patient.
Pain
The patient's pre-existing pains may worsen and new ones may develop.
Clinical management:
 Monitor pain relief carefully. Do not stop analgesics even if the patient is comatose, administer them
regularly using the most appropriate route preferably by mouth or rectal.
 Drug dosages may need to be reviewed as side effects may be more prominent <It this stage.
 When there is reduced or no urine output:
 Reduce morphine routine dosing by 1,12
 Breakthrough dosing as needed.
Stop most drugs as side effects accumulate.

Decreasing fluid and food intake:

Often the family is worried that the patient will get dehydrated and starves to death.
Facts that the family should know:
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  Food may be nauseating.
 Eating and drinking become difficult as one must have adequate strength to chew and maintain an
upright position.
 As the energy requirements diminish. forcing fluids may cause more problems than withholding i.e..
Risk of aspiration.
 Excess secretions may localize in the pharynx causing a gurgling sound or "death rattle".
Clinical management:

 Remind families, caregivers that dehydration does not cause distress but rather it is protective.
 Parenteral fluids may be harmful hence causing fluid overload and breathlessness.
 Explain to the family if questions arise about admission or dehydration.
 Do not feed patient when in supine position for fear of aspiration - patient must be supported in an
upright position.
 Keep the patient's mouth clean and moist.
 It is important to respect the patient's wishes.
Changes in elimination:

 Passing urine and stool may decrease or even stop, but incontinence of the two is possible.
Clinical management:

 Reassure that this may not be uncomfortable for the patient.

 Assist and educate the family on care of skin and pressure areas
 Use urinals/bedpan or catheterize the patient if necessary.
Respiratory changes:

There may be changes in the breathing pattern e.g. Cheyne-Stokes respiration.

Death rattle – i.e. noisy, rattling breathing when a patient is deeply unconscious and close to death – can be a
distressing problem for relatives. But it is rarely a problem for the patient.

Death rattle: Excess secretions may localize in the hypopharynx associated with expiratory and inspiratory
phases of respiration, causing a gurgling sound.

Clinical Management

 Death rattle is usually due to pooling of saliva, though there may also be respiratory tract infection,
pulmonary oedema or gastric reflux.
 Explanation and reassurance for the family and staff are essential.
 Positioning to maximise postural drainage may help, depending on the cause.
 Suction is seldom needed and may be traumatic unless the patient is deeply unconscious.
 Anti-muscarinic medications are effective when given early for salivary pooling.
 Hyoscine hydrobromide 20mg SC is usually the most available.
 Hyoscine hydrobromide SC 400mcg and glycopyrronium 200mcg SC are alternatives.
 Cheyne–Stokes breathing may alarm family members in the periods of apnoea. They need to be
reassured that this can persist for some time before death.
Circulatory changes:
The extremities are cold and sometimes appear greyish/bluish.

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Clinical management:
 Keep patient covered and warm.
 Gently ensure that the family is explained and understands the cause of this.
Roads to dying:

 It is not possible to accurately estimate the time of death; you can only say that death is getting closer.
 The dying person may remain aware of their surrounding until the moment of death. However, this
awareness may be limited (e.g. confused about time, mumbling, staring into space, odd movements of
the hands, seeming to see things).
 Hearing often remains intact so take care in conversation and include the patient if talking at the
bedside even if they appear asleep or unconscious.
 Encourage the family to continue talking to the patient even when he/she is too weak to respond.
 Reduce unnecessary medications but continue with pain and symptom control.
 As the patient is dying, the body organs begin to decline.
 Near death, hepatic and renal function are reduced, so medications may linger in the body. Therefore
the patient who had their pain controlled by regular doses of morphine may now manifest some of the
side effects as the active ingredients accumulate in the bloodstream.
 Action: stop the morphine for a day (with instructions for breakthrough pain) and then commence
again at a lower dose or with longer hours between (e.g. extend intervals from 4-hourly to 6–hourly).

Signs that death has occurred

 Breathing ceases entirely.

 Heartbeat and pulse stop.
 Patient is totally unresponsive to shaking. shouting.
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  Eyes may be fixed in one direction; eyelids may be open or dosed.
 Eyeballs become soft.
 The skin tone changes.
 Generalized stiffness of the body (rigor mortis) after several hours.
Death and dying principles

 Death is a part of life, and people need to be allowed to die in peace and with dignity.
 During the dying phase, patients should continue to receive adequate pain and symptom control.
 Palliative care neither hastens nor postpones death and views dying as a normal process.
 It is important that palliative care is delivered in a culturally sensitive manner.
 Palliative care patients have had a diagnosis of life-threatening illnesses such as HIV/AIDS and cancer;
therefore there is usually a preparatory period for death.
Preparing to care for the dying

Prepare yourself

 Contemplate your own death and preferences for dying – this can help you empathize with a patient
who is losing everything known to them and the family who are losing a precious loved one. However,
it is important not to apply your own preferences to the patient.
 Some principles for preparing yourself to care for the dying are as follows:
 Where possible, get to know the patient and family for some time before death. If referred late,
spend time with patient and family to gain their confidence.
 Ensure the patient and families are aware that you will care for them.
 Prepare the patient and family well in advance for death.
 Be knowledgeable about the medical management of all possible events.
 Be aware of spiritual aspects and needs, and provide for them.
 Encourage the family to talk to the patient, reassure them and pray with them (as appropriate).
 Find out whether the patient has any special requests for the family after death.
 Be familiar with, and respect, religious and cultural rituals surrounding death and dying,
 Facilitate bereavement support for the family.
 Be aware of your own affection for the patient. You too have bereavement needs. Know how to
address them with a trusted team member.
 Remember that autonomy will be a priority for adults with the cognitive capacity to understand
decisions.
Prepare the patient and their family

 Gently ensure that the patient and their family understand that death is near and explain some of the
signs of dying – e.g.:
 Gradual increase in drowsiness and/or weakness
 Changes in breathing pattern
 Death rattle
 Cheyne–Stokes respiration
 Skin colour changing as circulation changes
 Possible terminal restlessness.
 The presence of a loved one, holding hands, touching, praying etc. can bring comfort to the patient.
 The importance of having friends and family needs to be recognized and respected.

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  Reassure the patient and the family that dying is not usually uncomfortable – e.g. grunting is not a sign
of pain.
 Be prepared to discuss cultural issues and support cultural needs as long as they do not cause suffering
to the patient.
 Explore and discuss the issue of a patient writing a will and/or other inheritance issues to protect the
bereaved.
 Facilitate the resolution of unfinished business.
Key issues to consider while caring for dying patients
 Explain to the family what is happening and encourage the family to allow the patient to rest
 Continue with care and keep surrounding familiar to the patient
 Encourage family to use therapeutic touch
 Encourage family to be observant
 In case the patient is experiencing pain, do not stop the analgesics and monitor pain relief carefully.
The drug dosage may need to be reduced because the side-effects of this treatment may be more
prominent at this stage.
 It is important that you respect the patient’s wishes
 Keep the patient’s mouth clean and moist
 Be able to support and address the patient’s family concerns
Management of a dying patient in palliative care
 The holistic approach continues to the end of life and beyond.
 Help from other team members or organizations should be sought when indicated.
 There are different ‘roads to dying’ – see diagram above. The majority of patients take the ‘usual’ road;
however, when the ‘difficult’ road is being trodden by the patient, it is important to be there to
support them and their family.
 Travelling the ‘difficult’ road
 Restlessness, confusion, hallucinations and delirium can be treated with haloperidol 1.5–2.5mg.
First, though, exclude remediable causes such as a full bladder or rectum.
 Seizures should be treated with diazepam 5–10mgs IV (or, if not possible, IM). If available,
midazolam 2.5–5mgs SC (which lasts up to three hours).
 Manage patient and family calmly, touching and holding the patient and family member as
appropriate.
 As the disease advances towards the end of life there may be an escalation in pain and other
symptoms, requiring ongoing increases and adjustments to be made in drug therapies.
 If the patient has received good palliative care, their pain should be controlled before they enter the
terminal stage of the illness. However, this will often not be the case.
 The pain and symptom assessment and management measures addressed in earlier chapters of this
handbook are still appropriate for the terminal phase of illness, although several alternative methods
of administering analgesics may be required as a result of decreased oral intake and consciousness.
 Such alternative methods of providing analgesia include:
 Rectally
 Sublingually or bucally
 Transdermally via pain patches such as fentanyl
 Subcutaneously – can be done at home
 Via a nasogastric tube
 Intravenously (in hospital).

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Rectal analgesia

 Morphine suppositories are sometimes available.

 Long-acting morphine, such as MST 12-hourly, can be used by the rectal route.
Sublingual or buccal analgesia

Morphine solution is absorbed from the buccal mucosa – however, because absorption is variable, a larger
dose may be needed.

Morphine solution can therefore be given in this way to moribund patients.

Subcutaneous analgesia

The subcutaneous route is useful if the patient is unable to ingest medication.

Intermittent dosing via a subcutaneous needle (butterfly) can be given, such as 4-hourly morphine.

In some places across the African region, the subcutaneous route has not been an acceptable method of pain
control, while for others it has been. So the culture and environment needs to be considered when
considering using this route.

After death

 Immediately after death there will be rituals to be carried out according to custom or religion. Allow
the family to take this over.
 Remember that burials in Africa will often take place within 48 hours; this is particularly important for
Muslims, who have to be buried before sunset on the day they died.
 The body may need to be preserved and transported – this may be done in a mortuary or traditionally
in the village. Such action can preserve the body so that the funeral can take place up to 10 days later.
 There are many different customs and rituals that will be upheld in different parts of Africa – e.g.:
Many cultures believe that the spirit is around for several days after death.
 Friends and relatives may accompany the body for the first 24 hours. The body is never left alone but
prayers, hymns and comfort are there for the body and the family.
 In some cultures, food and precious belongings are put into the coffin.
 The body may be buried in the ancestral home, in the garden.
 In some countries in Africa, cremation is rare i.e. the extent and the depth of bereavement differs in
every culture.
Special considerations in HIV and AIDS

 Similar approach is needed for patients who are dying, regardless of their disease.
 The medication regimen needs to be simplified to only those medicines needed for good symptom
control. This may therefore include stopping ARVs or anti-TB treatment.
 The provision of care through home-based care services and HIV support services is important.
 It is important that everyone caring for the patient is aware of universal precautions, particularly if
handling bodily fluids.
 It can be hard to know when the end is really the end, because patients may be seriously ill with an OI,
which is treated and then they recover.

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  Signs and symptoms associated with decreased survival include:
 Poor performance status, with more than half the daytime spent in bed
 End-stage organ failure and anorexia
 Decreased response to ART, or the development of resistance
 Wasting and loss of >30% lean body mass
 Very low CD4 count.
 However, actual survival time may vary from days to weeks, months or even years.

ETHICS AT THE END OF LIFE

HASTENED DEATH
• A "hastened death" always means shortening the process of dying. A "timely death" would sometimes
mean continuing to live until some significant event has been fulfilled. Seeking a timely death could easily
mean trying to live longer.
• Assisted death is a form of euthanasia in which an individual expressing a wish to die prematurely is
helped to accomplish that goal by another person, either by counseling and/or by providing a poison or
other lethal instrument.
• The assisted death may be regarded as a homicide or suicide by local authorities, and the person giving
assistance may be held responsible for the death.
• Help that enables a person who wants to die to do so. The help may be counseling or providing the
physical means or instruments that allow the person to commit suicide.
• The legal and ethical questions concerning such acts, especially if the assisting person is a health care
professional, are topics of active debate.
• Assisted suicide is suicide undertaken with the aid of another person. The term refers to physician-
assisted suicide (PAS), which is suicide that is assisted by a physician or other healthcare provider.
• Once it is determined that the person's situation qualifies under the assisted suicide laws for that place,
the physician's assistance is usually limited to writing a prescription for a lethal dose of drugs.
• It is common for patients with advanced incurable disease to express a desire to hasten their death.
Because of the intimacy that characterizes the nurse-patient relationship, nurses who care for terminally ill
patients encounter ethically challenging issues, including requests for assistance in prematurely ending
life.
• Studies show that nurses in a variety of settings receive requests for aid in dying. Nurses have an obligation
to assess and respond to these requests to relieve suffering while respecting dignity and choices.
• A request from a terminally ill patient to hasten death represents a clinical, ethical, and legal dilemma for
nurses.
• Patients can select several legal options to hasten death and avoid suffering. They may discontinue life
prolonging treatment before or during its administration or voluntarily stop eating and drinking.
Causes/reasons for hastened death

• A number of studies have looked at the relationship between depression and the desire for hastened
death. These studies have found that patients who request hastened death have a much higher rate of
depression as compared with terminally ill patients who do not request hastened death.
• Existential suffering is often the most difficult, yet the most common cause of the pervasive desire for
hastened death.
• In general, issues of psychosocial distress such as:
 Being a burden to others
 Loss of control over the circumstances of death
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  Lacking social support
 Perceived loss of dignity
 Having a poor quality of life
 Lack of meaning to life seem to be the major factors.
Addressing a request for hastened death in practice

 When dealing with a request for hastened death, as a health worker, you need to:
 Be sure about what the patient is asking;
 Acknowledge the patient’s suffering;
 Listen actively to what the patient is communicating both verbally and non-verbally; assess the
patient for physical, psychosocial and spiritual suffering;
 Make a care plan with the patient.
 Any approach to assessing the patient will require time. If you do not have that time when the patient
makes the request, you need to:
 Acknowledge the patient’s suffering;
 Validate the importance of discussing the request at length; and
 Plan a time to have this discussion as soon as possible or refer the patient to other supports if
available (e.g., spiritual care or psychosocial support).
Responding to suffering: A particular challenge

You can acknowledge the suffering of the individual in a way that invites further explanation. For example, you
could say: “Usually when people ask me this, they are suffering a lot. Tell me more about what is making you
feel this way.” Inviting patients to elaborate on their situation is often enough to help them reveal their
concerns.

 Patient’s suffering may be caused by multiple issues. Some patients may not mention symptoms because
they assume the symptoms cannot be controlled and thus are not worth reporting. It is useful to have an
assessment checklist or tool that guides your assessment of symptoms that contribute to physical
discomfort, and addresses anxiety, depression, and existential suffering.
 Ask the patient about common physical symptoms of pain, dyspnea, nausea, fatigue, constipation,
insomnia, itching, and other symptoms specific to his or her condition. Constant pain, dyspnea, or other
uncontrolled symptoms can certainly result in a request for hastened death if the patient believes that this
is the only way to escape the suffering.
 In all discussions include questions about anxiety and depression, as both symptoms are common in
advanced illness.
 Asking about their previous experience with a death can be very helpful in determining their fears about
their own future.
 Identifying depression in terminal illness can be difficult as the physical symptoms and signs of depression
(poor appetite, weight loss, poor sleep) will often overlap with the symptoms of advanced illness.
However, the psychological symptoms such as anhedonia (inability to experience pleasure), hopelessness
and low mood will still be present.
 Existential suffering is often the most difficult, yet the most common cause of the pervasive desire for
hastened death. Being a burden to others, loss of control over the circumstances of death, perceived loss
of dignity, and lack of meaning to life are the major concerns.
 Exploring these concerns will often take further discussions with family members and ongoing listening to
and support of the patient.

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Risk of suicide

 Not all situations resolve so beautifully in day-to-day practice. The request for hastened death is often
more complex and not as easily resolved.
 When admitting patients to hospital, it is important to assess their mood, determine whether they
have suicidal thoughts or a plan, and ensure a suicide-prevention plan is in place.
 Screening questions for the prevention of suicide in patients admitted with advanced disease can be
worthwhile. Ask patients whether they:
 Have had suicidal thoughts in the last weeks before admission;
 Are currently thinking about suicide;
 Have a previous history of a suicide attempt; and/or
 Are planning a suicide attempt.

A practical approach to the care of patients who request hastened death

 Appropriately investigate and aggressively treat symptoms. Refer to palliative care specialists,
anesthetists, interventional radiologists, psychiatrists, psychosocial and spiritual care providers in order
to pursue the best possible medical, psychological and spiritual treatment of the patient’s pain and
other symptoms.
 Determine the team member who best connects or communicates with the patient and allow that
person time to develop insight into who the patient is in each domain of his or her personhood (e.g.,
past, future, roles with others, family and self, cultural background etc.). This team member can
facilitate connection with other team members, and either lead or assist in the counselling of the
patient, depending on his or her skills in this area.
• Understand the nature of the patient’s suffering in all its dimensions. “Suffering occurs when there is a
perceived threat to the integrity or continued existence of the person. -Consider all aspects of a
patient’s personal history including previous experience with illness and death, other significant losses
and hopes and dreams fulfilled and unfulfilled, to ensure you are not overlooking a source of his or her
suffering.
• Foster healing. Healing is “a relational process that aims to enhance integrity and wholeness in the
midst of suffering, irrespective of patient’s physical wellbeing and prognosis.” Facilitate healing by
helping the patient recognize and accept his or her needs, such as depending on others for personal
needs, reconciling with self and others, transcending self-preoccupation in order to relate to others,
and opening up to the possibility of growth in emotional and spiritual dimensions.
• Understand what maintains a patient’s dignity and quality of life. Dependency on others can be
particularly difficult for some people and can seem like a loss of dignity. By asking, “Is there anything
that you feel is currently undermining your sense of dignity?” you bring the issue out into the open.
Identifying how a patient’s dignity may be suffering, can help the team adjust the way care is provided
to preserve self-esteem.
• Give patients a sense of control. Patients often feel powerless and will refuse what seems to be in their
best interest purely to be in control of something. Ask them directly: “How in control do you feel?” This
exchange may reveal ways the team can alter how it provides care or makes decisions. Look for ways
to give people a greater sense of control so they have multiple choices to make each day.
• Support the patient’s ability to find meaning in what is happening to him or her. We find meaning in
what we have accomplished or created and in what we believe is important. We also find meaning in
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 loving and being loved. Encourage patients to find meaning in their current life situation, by reviewing
their lives and developing a life legacy for loved ones.
 Ask patients: “What aspects of your life and your accomplishments are you most proud of?” “What
things did you do before you were sick that were most important to you?” “What are your hopes
and dreams for your loved ones?” “What final words would you want to say to your loved ones?”
• Focusing on the positive aspects of the present moment may help reframe a patient’s situation from
one of successive losses to one that is more meaningful and encompasses both growth and loss. Other
questions you might ask include:
 “What part of you is strongest right now?”
 “Are there things you enjoy doing on a regular basis?”
 “Are there things that take your mind away from illness and offer you comfort?”
 Facilitating activities, visits and talks with family, friends and volunteers can improve a patient’s quality
of life and give it meaning.
 Set realistic goals with the aim of improving a patient’s quality of life. Develop a care plan that
encompasses realistic goals and communicate the plan clearly to the patient, even if it states that a
return to good health is not possible. If the patient understands the plan, he or she will be less
uncertain and better able to cope.
 Often, family members are unsure how to help and care for their loved one, especially when roles are
dramatically reversed.
 While death and dying may be familiar territory for health care professionals, it is often a foreign
and frightening experience for the people most intimately involved.
 Asking about relationships and specifically encouraging patient to reconnect with his/her family to
ask forgiveness or say some final words are important ways to maintain dignity, foster hope and
promote healing.
Ethics and legal issues surrounding hastened and assisted death

• Terminally ill patients should be allowed to die with dignity. ... On the other side of the issue, however,
people who are against assisted suicide do not believe that the terminally ill have the right to end their
suffering. They hold that it is against the Hippocratic Oath for doctors to participate in active
euthanasia.
Is physician assisted death ethical?

• Patients have the ultimate authority over their lives, but whether physicians should assist them in
carrying out suicide is another matter. Despite changes in the legal and political landscape, the ethical
arguments against legalization of physician-assisted suicide remain the most compelling.
Should a person have the right to choose when they die?

• Terminally ill patients should be allowed to die with dignity. Choosing the right to assisted suicide
would be a final exercise of autonomy for the dying. They will not be seen as people who are waiting
to die but as human beings making one final active choice in their lives.
Law versus Professional Ethics
A state can legalize physician-assisted suicide, as highlights indicate the difference between what is legal and
what is ethical; what the state allows residents to do and what members of a given profession, in this case
medicine, believe they ought to do.

• Though a state may legalize physician-assisted suicide or abortion, or capital punishment, for that
matter it cannot force doctors who oppose the practice on grounds of professional ethics or personal
beliefs to participate.
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 • There is a difference between what voters want and what constitutes sound medical practice,
according to Gregory Hamilton, MD, co-founder and past president of Physicians for Compassionate
Care, a group that opposes P-AS. "It's up to the medical profession not Judge or the voters to decide
what a legitimate medical practice is," Hamilton said.
What Ethical Choices Does a Physician Have?
If a state does legalize physician-assisted suicide, what choices do physicians in that state face? Must they opt
either to

1. Refuse aid to patients determined upon killing themselves, thus driving those patients to seek help
from other, possibly unknown, physicians or inexperienced caregivers or
2. Violate their profession's principal code of ethics?
There are many services physicians can provide a patient who asks for assistance in dying without violating
professional ethics or personal beliefs. First, they must confront the task of presenting the most accurate
prognosis. This is a difficult but critical task that only the physician can perform. It demands skill, experience,
and courage.

 In Death Foretold, physician Nicholas Christakis emphasizes that the lack of a prognosis, or an
inaccurate one, can lead patients to make bad choices near the end of life.
 Next, physicians must carefully describe all possible treatment and palliative care options to the
patient and discuss what he or she can expect as consequences of each of those care options, as well
as the consequences of accepting no treatment or care.
 Physicians can also play a role in referring terminally ill patients to others--psychiatrists, hospice
workers, clergy--who can evaluate their mental status and help them consider end-of-life decisions.
 Meanwhile, however, physicians should maintain their relationship with the patient, no matter what
course the patient finally chooses, short of participating in suicide, if that is the patient's ultimate
choice.
 Withdrawing and withholding treatment, including ventilator treatment, CPR, and even nutrition and
hydration, at the express request of the patient or patient's surrogate are all within the bounds of
professional practice, according the Code of Medical Ethics.

ADVANCED DIRECTIVES IN PALLIATVE CARE

 Definition: An advanced/Advance directive is a legal document based on the principle of autonomy

that expresses the desire of the patient in relation to different medical treatments when the patient is
unable to make those decisions.
 The advanced directives are represented in three formats:
 Living Will
 Appointment of a Healthcare Proxy
 Legal Status of Preferences.
 The uses of advanced directives have an impact not only on the patients and their families, but also on
the healthcare team.
 Advanced directives propose a model of healthcare based on patient preferences. Although there is
sufficient evidence related to their usefulness, various factors are known to affect the use of advanced
directives.
 Advance directives are an important tool for documenting the wishes of end-of-life patients who are
no longer in a position to take decisions relating to their medical care.
Common types of advanced directive in palliative care.
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Types of advance directives vary based on state law and individual preferences within the states’ legal
requirements.

The 2 most common types of advance directives are:

 Living will
 Durable power of attorney for health care, which is sometimes called the health care power of attorney
or health care proxy.

Advance directives can also include extra instructions about patient’s health care decisions. For instance, they
allow patient to specify when they do not want to be resuscitated or if they want to make organ or tissue
donations.

If patient does not have written advance directives, some states recognize spoken (oral) advance directives as
legal. A person may generally make a properly witnessed verbal statement that must then be written by
someone else.

If a client expects problems with mental illness, he/she can also outline his/her health care choices in the
event that he/she becomes seriously mentally ill and are unable to make health care decisions. This is called a
mental health care directive or psychiatric care directive.
1. The living will
 A living will is a document designed to control certain future health care decisions only when a person
becomes unable to make decisions and choices on their own. The person must also have a terminal
illness (the patient cannot be cured) or permanent unconsciousness (often called a “persistent
vegetative state”).
 The living will describes the type of medical treatment the person would want or would not want in
these situations. It can describe under what conditions an attempt to prolong life should be started or
stopped. This applies to treatments such as dialysis, tube feedings, or artificial life support (such as the
use of breathing machines).
 The living will is a formal legal document that must be written and signed by the patient. Most laws
say that the document must be witnessed.
 Usually, the witnesses cannot be spouses, potential heirs, doctors caring for the patient, or employees
of the patient’s health care facility.
 There are many things to think about when writing a living will. These include:
 The use of equipment such as dialysis (kidney) machines or ventilators (breathing machines)
 “Do not resuscitate” orders (instructions not to use CPR if breathing or heartbeat stops)
 Whether s/he would want fluid (usually by IV) and/or nutrition (tube feeding into the stomach) if
he/she couldn’t eat or drink.
 Whether he/she would want food and fluids even if he/she weren’t able to make other decisions.
 Whether he/she want treatment for pain, nausea, or other symptoms, even if he/she is not able to
make other decisions (this may be called “comfort care” or “palliative care”.)
 Whether she/he want to donate his/her organs or other body tissues after death
 It’s also important to know that choosing not to have aggressive medical treatment is different from
refusing all medical care.

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  A person can still get antibiotics, nutrition, pain medicines, and other treatments. It’s just that the goal
of treatment becomes comfort rather than cure. Patient will want to make it clear exactly what he/she
wants and doesn’t want.
NB: Client may revoke (end or take back) a living will at any time.
2. Durable power of attorney for health care / health care power of attorney
 A durable power of attorney for health care is also called a health care power of attorney. It’s a legal
document in which client names a person to be his/her proxy (agent) to make all his/her health care
decisions if she/he become unable to do so.
 Client proxy or agent can speak with doctors and other caregivers on his/her behalf and make
decisions according to directions he/she gave earlier.
 The person chosen decides which treatments or procedures he/she wants or do not want. If client’s
wishes in a certain situation are not known, the agent will decide based on what he or she thinks client
would want.
 The person named as proxy or agent should be someone client trusts to carry out his/her wishes. If
needed, this person must be able to do this in a time of great stress, uncertainty, and sadness.
 Client can talk to his/her proxy and be sure that he or she is comfortable in this role, and be sure to
discuss his wishes in detail with that person.
 It’s also a good idea to name a back-up person in case the first choice becomes unable or unwilling to
act on client’s behalf. The law does not allow the agent to be a doctor, nurse, or other person
providing health care to the client at the time of choosing them, unless that person is a close relative.
3. Do not resuscitate orders
• Resuscitation means an attempt by medical staff to re-start the heart and breathing, such as CPR. In
some cases they may also use life-sustaining devices such as breathing machines.
• In the hospital: A “Do Not Resuscitate” or DNR order means that if patient stops breathing or the heart
stops, nothing will be done to try to keep him/her alive. A DNR order allows natural death and is
sometimes called an “Allow Natural Death” order.
• If he/she is in the hospital, can ask the doctor to add a DNR order to his/her medical record. Some
hospitals require a new DNR order each time patients are admitted. But remember that this DNR order
is only good while patients are in the hospital. Outside the hospital, it’s a little more difficult.
• Outside the hospital: Some states have an advance directive that’s called a Do Not Attempt
Resuscitation (DNAR) or special Do Not Resuscitate (DNR) order for use outside the hospital. The non-
hospital DNR or DNAR is intended for Emergency Medical Service (EMS) teams and are usually required
to try to revive and prolong life in every way they can. The non-hospital DNR or DNAR order offers a
way for patients to refuse the full resuscitation effort in advance, even if EMS is called. It must be
signed by both the patient and the doctor.
4. Physician Orders for Life-Sustaining Treatment
• Physician Orders for Life-Sustaining Treatment (POLST) is not an advance directive, but a set of specific
medical orders that a seriously ill person can fill in and ask their doctor to sign.
• The POLST is kept with him/her and can be used in different health care settings. Emergency personnel
like paramedics, and emergency room doctors must follow these orders.
• Without a POLST form, emergency care staff are generally required to provide every possible
treatment to keep patient alive.
5. Pregnancy
• If a lady could become pregnant, she should also very clearly state her decisions in case something
happens during pregnancy.
• Whether the health care provider will honor her decisions at this time depends on the following:

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  The risks to both mother and the fetus
 How far along is the mother with the pregnancy
 The policies of the doctors and health care facilities involved in most cases, if the mother is in the
second or third trimester of pregnancy, doctors will give all the medical care they think is necessary to
keep her and the fetus alive.
6. Organ and tissue donation
Organ and tissue donation instructions can be included in the advance directive. Many states also provide
organ donor cards.
• NB: Most patients who have an advance directive are older adults, but it’s never too soon to take
preventive measures in the event of an emergency.

Client’s Health Care Agent

the person client chooses as his/her agent:
 Must be 18 years or older
 Cannot be his/her treating health care provider
 Cannot be an employee of his/her health care provider, unless related to him/her.
 Cannot be his/her residential care provider, unless related to him/her.
 Has the authority to make health care decisions on his/her behalf only when his/her attending doctor
certifies him/her as incapable of deciding for him/herself.
 Must make health care decisions on his/her behalf if he/she does not have documented health care
directives, even in the result of end of life.
 Cannot make a decision for him/her if he/she object, regardless of capacity.
 Cannot make a decision for him/her if a medical power of attorney is in effect.

Advantages of advance directives

1. A simple, straightforward document called an advance directive allows clients to express their
wishes if they become incapacitated and unable to communicate.
2. The form allows the client to appoint someone else, such as a family member or close friend, to
speak for him/her if he can’t speak for himself, or to speak for her at a time or in a circumstance
he/she designates.
3. The creation of an advance directive helps ease the stress of family and doctors before client is
faced with a serious injury or illness.
4. Using an advance directive, can help guide the course of medical treatment throughout patient’s
hospice care.
5. Through an advance directive, patient is able to tell doctors what he/she wants or doesn’t want,
while he/she is able to do so.
6. Having an advance directive usually means that he/she will avoid:
7. Unnecessary pain
8. Unhelpful procedures
9. Unwanted hospitalization
What an advance directive does
Trying to make important decisions for someone else during a time of crisis is distressing. Do you know what
Mom wanted? Did Dad say if he wanted to be kept on life support? Did he say which interventions he wants,
and which ones he might not want?
 This is why an advance directive is a gift to your loved ones if you become incapacitated.
 An advance directive:
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  Gives your loved ones peace of mind
 Minimizes stress
 Reduces potential conflicts among family members
How to Prepare Your Own Advance Directives
because it is impossible to predict the medical conditions and other circumstance one might face in the future,
experts believe that the durable power of attorney is likely to be more flexible and helpful. But only if the
person you name knows your values and feelings about potential medical treatments and quality of life.
 The following simple steps can help in the process of completing an advance directive 1:
 You do not need a lawyer to prepare advance directives.
 Complete a state-specific advance directive (see below for some options).
 Make sure that your physician and loved ones are aware of your specific requests.
 Ask someone else to look over the documents so that you can be sure you have filled them out
correctly.
 Read all of the instructions carefully to be sure that you have included all of the necessary information
and that your documents are witnessed properly.
 Make several photocopies of the completed documents.
 Keep the original documents in a safe but easily accessible place, and tell others where you put them;
you can note on the photocopies the location where the originals are kept.
 DO NOT KEEP YOUR ADVANCE DIRECTIVES IN A SAFE DEPOSIT BOX. Other people may need access to
them.
 Give photocopies to your healthcare proxy (agent), doctors and anyone else who might be involved
with your healthcare.
How to fill out an advance directive
when it comes to filling out your advance directive, you can be as general or explicit as you want.
 With an advance directive, you can:
 Appoint a healthcare agent to make decisions for you. This is usually a person who knows your
values and is important to you.
 Specify where you want to stay during your end-of-life care, such as hospice or at home.
 Ask for spiritual care
 Allow any visitors, or limit them
 All an advance directive needs to be official is the signatures of two people who are not named in
the document. You do not need an attorney or a notary. It should be given to your physician for
inclusion in your medical record.
 If client ever changes his/her mind about his/her advance directive, he/she can revise it at any
time.

BEREAVEMENT, MOURNING AND GRIEF

Introduction
The experience of loss is difficult and pain. Grief and loss is an experience that everyone is likely to have at
some stage in life. Although many bereaved people receive help in the community from families, friends or
both, this is not automatically so.
However, even when bereaved people are supported by friends and families, there remains certain situations
in which counseling has added benefits and this is especially true when several members of the family have
suffered the same loss.

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Children who have lost a parent(s) are especially vulnerable and often needs support which counseling can
give. Counseling people with loss and grief helps them to deal with the deep feelings of loss which may be
experienced soon a death or indeed at any stage thereafter. One reason that bereavement is so difficult is that
we rarely have the opportunity to talk openly and honestly about death itself and even more rarely our own
death
Definitions
 Bereavement: it is the state of having lost something or someone.
 Grief : is a process of emotional, cognitive, functional behavioral responses to loss or death
 OR: grief is the body reaction to a given loss
 Mourning is the period of time it takes to grieve
 Anticipatory grief is the grieving that occurs before the actual loss
NB: grief is a process not a state as in bereavement
There are three main areas relating to bereavement needs in palliative care:
 Living with a life-threatening illness means facing loss of life and loss of a future.
 Patients may have lost children, spouses and other relatives in the course of their lives from many
causes. Emotional, social and spiritual care during the illness will explore bereavement for patient and
family members so as to provide peace and resolution during the dying process.
 Emotional, spiritual and practical support is provided to all family members who require help after the
death of the patient for as long as is necessary.
Periods of bereavement vary according to:
 The manner of death (long illness, sudden death or traumatic death such as car accident, murder,
medical mistake)
 The age of the person who dies (a child’s death often feels out of place; an older person has often had
longer relationships)
 The age of the bereaved (child development affects reaction; life stage is relevant)
 Gender (women are often allowed more emotional expression than men)
 Previous experiences of loss and their impact
 Support systems
 Personal coping styles
 Family and cultural rules.
Grief reactions
People will respond to grief in different ways. These include; feelings, physical sensations, thoughts and
behavioral. Common grief reactions are; shock, denial, loneliness, guilt, meaninglessness, anger, bargaining,
depression, sleeplessness, lack of appetite, stomach upset, crying, isolation, withdrawing and inability to make
decisions. It is important for the councilor to be aware of these reactions so that s/he can help the bereaved
persons to go through the grieving process
Types of grief
1. Normal/uncomplicated grief: It is the ability of a person to progress satisfactorily through the stages
of grieving to achieve resolution
2. Anticipatory grief: is the type of grief before an expected loss.
3. Maladaptive grief: it is the inability to progress satisfactorily through the stages of grieving to achieve
resolution i.e. the following types of maladaptive include:
 Delayed: is the type of grief not experienced immediately after a loss possibly post-poned.
 Inhibited grief: the type of grief experienced by people who have great difficulty in expressing their
emotions i.e. children

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  Chronic grief/prolonged grief: It's a situation where the grieved person continues to feel the effects
of loss which extends for a long time and behaves in an abnormal way which may manifest as:
 Frequent visits to the grave
 Low self esteem
 Crying whenever he/she learns of other deaths
 Speaking and over focusing on the dead person
 Loss of libido
 Vague aches
 Disenfranchised grief: the type of grief that occurs when a loved person or item losses some of its
adorable characteristics through still present i.e. one experiences loss when a loved there is decline
in physical abilities in a dementia person through still present/alive
 Cumulative grief: the type of grief that occurs when multiple loses are experienced often in a short
period of time i.e. it can be stressful because one does not properly grieve one loss before the
other
 Masked grief: it is the type of grief converted into physical symptoms or other negative behaviours
that are out of character i.e. someone experiencing masked grief is unable to recognize that these
symptoms or behaviors are connected to loss.
 Distorted grief: it presents with extreme feeling of guilt or anger, noticeable changes in behavior,
hostility towards a particular person plus other self-destructive behaviors
 Exaggerated grief: it is the intensification of the normal stages of grief as the time moves on
Stages of the grieving process
 These stages can occur in either the present sequence or any variety of sequence.
 One stage can last for a longer time while uninterrupted.
 The loss process can last anywhere from 3months to 3yrs.
 These stages of grief are normal and are to be expected.
 Working out each stage of the loss response ensures a return to emotional health and adaptive
functioning.
 Getting outside support and help during the grieving process will assist in obtaining the objectivity and
understanding.
Stage one; Denial
 We deny that the trauma or loss has occurred
 We ignore the signs of trauma or loss
 We begin to use;
 Magical thinking, believing that by magic, this memory will go away.
 Regression: Believing that if we act child-like, others will reassure us that nothing is wrong.
 Withdraw. Believing that we can avoid facing the losses and the truth
 Rejection Believing we can reject the truth and avoid facing the loss

Stage two; Bargaining

 We bargain or strike a deal with God or others to make the pain go away.
 We promise to do anything to make this pain go away.
 We agree to take extreme measures in order to ask this pain disappears.
 We lack confidence in our attempts to deal with the pain looking elsewhere for answers.
 We begin to;
 Shop around believing we look for a cure for our pain.
 Take risks believing we can put ourselves in a jeopardy way to get an answer for our pain

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  Take more care for others believing we can ignore out our needs.
Stage three; Anger
 We become angry with God, it ourselves, or with others over our pain
 We pick out a scapegoat on which to vent our anger e.g. the doctor, nurse, hospital e.g.,
 We begin to use;
 Self blaming believing we should blame ourselves for the blame of our trauma
 Switching blame believing we should blame others
 Aggressive anger believing we have a right to vent out the blame rage aggressively
 Anger is a normal stage; it must be expressed to be resolved. If it is suppressed and help in, it will
become locked away or replaced leading to depression that further drains away our emotional energy
Stage four; Despair
 We become over whelmed by the anger, pain and hurt of our loss. We are thrown into the depth of
our emotional response.
 We can begin to have uncontrollable spells of crying, sobbing and weeping.
 We can begin to into spells of deep silence, Morose, thinking and deep melancholy.
 We begin to experience;
 Guilt believing we are responsible for our loss
 Loss of hope believing we have no hopes or being able to return back to order in life and calm.
 Loss of faith believing that because of this loss, we can no longer trust.
Stage five; Acceptance
 We begin to reach a level of awareness and understanding of the nature of our loss
 We can now;
 Describe the terms and conditions in our loss
 Cope with our loss
 Handle the information surrounding this loss in a more appropriate way.
 We begin to use;
 Adaptive behavior, believing we can begin to adjust our lives to the necessary changes
 Appropriate emotion, believing we begin to express our emotional responses freely and are better able
to verbalize the pain, hurt, and suffering we have experienced
 Patience and self-understanding , believing we set a realistic time frame in which to learn to cope with
our changed lives

Factors that make grief harder and last longer

These factors include;
 The type of relationship that the survivor had with the deceased. A good relationship make it harder to
let go than a difficult one
 The circumstances of death for example if death was by natural cause, accidental, suicide, or homicide
and whether death was near or far away from home
 Personal history such as part losses and separations for example early parental loss.
 Individual personality and beliefs
 Social factors such as when the loss is socially unspeakable for example AIDS or suicide; when the loss
is socially negated e.g. abortion, and stillbirth or when social support is absent for whatever reason
 Unacknowledged grief. Gay men and lesbians have unacknowledged partners and so it is more difficult
to acknowledge grief. Children’s grief is often unacknowledged.

Common reactions in bereavement

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There are physical, emotional, social and spiritual reactions to loss. These are experienced in a complex mix
and change over time. Some examples follow.
Physical reactions:
 Aches and pains
 Nausea and/or vomiting
 Headaches
 Confusion, weakness and numbness
 Change in sexual needs (loss/increase of libido)
 Vulnerability to infections, cold, illness (low immunity)
 Changes in eating and sleeping patterns
 Shortness of breath
 Dry mouth
 Sweating
 Frequent urination.
Emotional reactions:
 Disbelief
 Numbness
 Sadness
 Crying, even sobbing
 Unexpected thoughts and feelings, often painful
 Guilt
 Panic and fear
 Appearing distracted
 Feelings of helplessness
 Anger (at self and others)
 Blame
 Regret.
Social reactions:
 Needing to say goodbye (stay with the body, view the body)
 Interaction with people at public gathering, funeral
 Selecting and undertaking rituals
 Self-absorption and anti-social behaviour
 Needing to talk of the deceased
 A sense of isolation from the world (‘in a bubble’)
 Attempting to carry on as usual (social face)
 Needing to be alone or need to be with others.
Spiritual reactions:
 Questioning why this has happened
 Challenging the belief system (strengthening, decrease or change in beliefs)
 Bargaining with a higher power
 Talking to the deceased
 Dreams that may have significance about the deceased
 Review of the meaning of life
 Consideration of ending own life.
How to help a client to get through a grieving process
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  Acknowledge grief and provide time to grief.
 Provide continuing support
 Talk openly and explicitly about the death
 Help the client identify and express feelings
 Help the client actualize the loss (some cultural practices such as funeral rituals may help I this)
 Discuss practical issues arising from death
 Acknowledge individual differences especially among same family members
 Help the client understand their coping strategies
 Identify other sources of support and refer appropriately.
Types of grief
The following are given by holistic home nurse visits
 Social worker visits
 Spiritual advisors
 End of life education for the patient and family
 Bereavement support
 Medication related to terminal diagnosis
 Pain and symptom management
 Possibly incontinent supply, wound care, nurse visit, physical visit, nutritional support, and other
benefits
Management/counselling of grief/bereavement
Principles of Effective Grief Counseling
 Embody hope
 Convey support/compassion
 Acknowledge the loss
 Accept the inability to control
 Validate the range of feelings, thoughts and behaviors
 Plan efforts to channel energy into adapting to reestablish an equilibrium
 Encourage continued movement forward by accessing helpful people when required
Bereavement counseling to AIDs/ cancer patient
 The ultimate goal for counseling is to help the patient and family to accept that death is final
 Never lock a patient and family to talk about their fears and how they can be eased
 Help the patient to think, talk about achievement and time spent in the past]help the patient and
family members to identify people or organizations who can provide support, e.g. friends, relatives
 Provide information on how to deal with distressing symptoms.
 Explore the patient’s religious and cultural belief and help contact appropriate source of spiritual
support especially a church leaders, and traditional leaders
 Encourage the patient to talk about what would happen to family after h/her death
 Found out whether the patient has discussed h/her family what will happen
 Acknowledge the importance of losses
 Help to encourage and ensure that the patents are allowed to remain in control of the discussion even
when patient has lost consciousness, family members should hold discussion in patient’s presence
 Explore alternative source of income
 Bring family members together to discuss about the future plans.

Bereavement counseling after death

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At the time of death (immediately after death)
 Encourage family members to stay with the deceased for as long as they need
 Encourage the family members to hold the patients hands or to say goodbye in whichever way they
want
 Don’t refer to the deceased as ‘the body’ but by his/her name.
 If the family was not present at the time of death, give as much detail as possible
 Encourage repetition of the story of the illness and death
 Make sure a religious person is present if requested.
 Take time. Go slowly
 Involve children and explain to them what is happening.
 Be comfortable with the expression of feelings, for example crying, shouting, wailing, at the time of
death and later
Continuous counselling after death
 Encourage the person to think about the dead by using photographs for memories
 Involve extended family members, friend, and volunteers to keep on visiting the bereaved person
 Encourage family members to talk to each other and to share feelings such as guilt, relief, pain or anger
 Listen rather than talk
 Discourage a bereaved person from making big decisions whenever possible for example change of
job, home, town. Their emotional state makes it hard for practical decisions to be taken.
 Encourage the use of rituals that help channel the grieving process
 Be aware of your own losses and feelings
 Encourage family members to tell you about the person who has died.
 Make a point of remembering special dates for example birthdays and death anniversaries.
 Keep a daily feeling and memories of a level
 Discourage family members in illegal issue
 Encourage family members to have enough time
 Educate the bereaved family about good nutrition and other drugs
 Encourage the bereaved family to be patient, tolerant, and gentle about oneself during the grief
 Encourage them to relax
 Encourage them to socialize with others

Complications of grief
When life issues are not expressed/ unacknowledged, he child’s ability to grief is inhibited. There is no forward
movement until the issues are resolved or the feelings are relieved.
Signs of complicated grief
 Chronic depression
 Substance abuse
 Suicidal behavior
 Prolonged grief
 Chronic physical symptoms without medical reasons
 Severe disease
 Risk taking
 Persistent sleep disorder
 Persistent denial
 May develop symptoms of deceased

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  If above symptoms persist seek help and provide ongoing counseling
MOURNING
 As cultures varies in the way of dealing with bereavement, the victuals involved in mourning also vary
according to individuals, families and communities
 Some differences in customs are:
 Expression of the grief directly an openly in contrast with no mess no loss attitudes
 While some families prefer to die at home others in the hospital
 Men should not cry as opposed it is sorry for men
 Some family members have to contact the rituals in contrast with men or category of clan members or
relatives may conduct rituals
Cultural approach of mourning
 It is characterized by a lot of punishments oneself or sacrifices maternally, funereally, spiritually and
morally, it varies from tribes to tribes or awning
 Unfortunately sometimes the period set for mourning and some of the bereaved family members
become stuck in becomes cold and resort to mourning.
 Below are some of the indications of someone who is mourning
 Idealizing and by standing the dead family members i.e. remembering the dead person to be much
better or worse than h/she actually was
 Some issues in the family cannot be resolved
 The fact concerning the dead is often confused and sudden or unreal.
 Members never stick or focus on the dead person as h/she was still alive.
 Frequent visits to the grave
GIEF AND BREAVEMENT IN CHILDREN
 School going children require special attention following the death of their parents than pre-schooling
ones.
 The grief one comes and goes, it is heavily dependent on age, past experience and personality.
 They grief at pain of loss by crying and wanting to be alone
 Sometimes the bereaved child experiences deep sadness e.g. something remains her or the patient
who dialed.
 They may not react visibly but pain remains consistent
 Many children are not encouraged to grieve but as they grow older, sense of loss may be felt and
expresses in different ways which may even extend into adulthood.
Concept of grief and loss in children
 Children’s ability to cope with death depends on their age and cope development.
 Most children see dead birds/animals at the road or in the field
 They often see death on TV and hear about it over radios, home, school, and community.
 A child living with HIV will also think about their own death/she may have experienced a lot of losses.
 After death children need information, reassurance a safe place to express their feelings to get
involved in what is vital to them during counseling.
Common reactions of bereavement in children
 Children’s reactions will depend on age, personal development and environment. An understanding of
the meaning of death changes as a child gets older:
Children 0–2 years of age (infants and toddlers):
 Miss the physical contact, security and comfort if a main caregiver dies.
 Show upset by changes in sleeping or eating patterns, crying or irritability, and becoming
withdrawn.
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  When toddlers, may be angry and have tantrums or go back to baby behaviour.
Children 3–6 years of age:
 Are unable to understand that death is forever and may ask when the dead person is coming
back.
 Confuse fact and fantasy and may think the death was caused by magic.
 Grieve in bits and pieces – at times appearing to have forgotten about the death and able to
play happily, then becoming upset again.
Children 6–9 years of age:
 Are able to understand that death is for ever (permanent) and it happens to everyone
(universal) but still imagine that death is avoidable.
 Are interested in practical matters, for example what happens to the dead person’s body.

Children 9–12 years of age:
 Have approximately the same understanding of death as adults: death will happen to everyone
sooner or later (universal); no-one escapes it, including them (unavoidable); and death is for
ever (permanent).
 Understand that death can be sudden and can happen at any time (not just for the elderly and
sick); may fear their own death.
 Begin to think about the meaning of life and what happens after death.
Adolescents
 Have as much understanding of death as adults.
 May take risks to ‘test’ life.

Practical ways of supporting a grieving child

 Story telling is a use full tool that helps children deal with loss, grief and translation
 One need a lot of support and counseling if she or he has to go through the bereavement period back
to normal life without developing complications of grief
 Encourage the family to communicate with the child in their care to allow them expose their emotions
through dressing, writing, telling stories, and games
 Prepare a child and tell the truth. For unprepared child can develop over whelmed by sudden loss and
may react with shock and confusion.
 Prepare the child to cope better because they are not aware of what is happening.
 Listen and speak to the children in a way which is appropriate to the child’s age
 Maintain consistence grieving children experience multiple loss e.g. schooling, separation from new
home
 Allow a child to grief at his own pace as each individual is unique and should be relaxed and handled as
an individual
 There is need to be assured that you are listening and caring about how s/he is feeling at that time.
 Death is a natural pattern of life. Relate death to flowers, birds, animals which may help the child to
hide away from death and may help the kid to accept reality.
 Children react differently hence the need to be patient and understanding.
 The understanding children are given choices going to hospital viewing the body and attending the
funeral.
 Encourage sense of continuity of school which can make the child feel life is getting back to reality.

Things to say to children

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  Death is universal and inevitable (use examples from nature—flowers, leaves)
 Death can be unpredictable
 It is okay to wish the person had not died
 It is okay to be angry and sad
 Rely on religion and beliefs to accept and understand
 Don’t be afraid to use the words ‘dead’ or ‘death’
 Assure the child that they had nothing to do with the death
 Admit we do not have all of the answers
 Assure the child about the things in their life that will not change ‘same room, same school, same toys,
same friends…)
 Emphasize that life continues after pain. There will be happy times again

Things not to say to children

 The deceased is ‘sleeping’ or has been ‘lost’
 This is confusing and frightening to children
 The deceased ‘wanted’ to go to heaven
 This suggests the deceased had a choice in the matter- and wanted to leave the child
 Don’t try to stop the grieving process
 ‘Big boys don’t cry’
 Be very careful what you say- especially the language you use. Young children are very concrete. Saying
God took the person can be a very scary statement and could even cause the child to be angry with
God, rather than finding comfort from God.
Assessment of difficulties in bereavement
 Occasionally, people have complications that prevent a healthy resolution of the bereavement process
and that require referral to a specialist. A few indicators include:
 After a couple of years the bereaved cannot speak of the deceased without experiencing
intense and fresh grief each time.
 Material possessions belonging to the deceased remain totally untouched as a shrine.
 A history of depression may make bereavement difficult to resolve.
 Suicidal thoughts continue after a couple of years.
 Phobias about illness or death intrude upon the daily life of the bereaved.
 A comprehensive psychosocial assessment and genogram of the family will highlight possible areas of
concern.
 Complicated bereavements should be referred, with the consent of the bereaved, to a health
practitioner and, where possible, someone trained in bereavement counselling.
 Risk factors for complicated grief include multiple losses and dysfunctional relationships.

Roles of a nurse/midwife in bereavement/grief

 Listen actively without judgment
 Encourage the gentle exploration of what the future may look without the deceased
 Assess and encourage the development of social support systems
 Encourage time with the body of the deceased at the time of death
 Respect survivors feeling without judgment
 Assist in identifying manifestations of grief and normalize them
 Assist the survivor in further identifying the meaning of loss in practical terms

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ANGER ISSUES IN PALLIATIVE CARE
 Anger in patients and families is a common problem in the care of persons with advanced disease.
Whereas it is widely accepted that anger may be a justifiable reaction to significant illness and loss, it
frequently creates difficulties for the doctors involved in care. In particular, there is often a personal
impact on the doctor at whom anger is directed.
 Anger is a commonly encountered emotion in the cancer setting. Understanding its origin is vital but
the practitioner needs to facilitate more than the ventilation of feelings; some change in attitude, the
provision of social support and the promotion of adaptive coping need to be generated.
 The perceived unfairness of illness and death commonly underpins anger in the patient with cancer.
Definition
 Anger is the strong emotion that one feels when he/she thinks that someone has behaved in an unfair,
cruel or unacceptable way.
 Anger is a strong feeling of annoyance, displeasure, or hostility.

Common sources of anger

Fear is probably the most common source of anger, especially in the dying and their families.
 Fear of the unknown,
 Being in pain or suffering,
 The future well-being of family members,
 Abandonment,
 Leaving unfinished business,
 Losing control of bodily functions or cognition,
 Being a burden to the family, and dying alone.

Other sources of anger include:

 A genuine insult – so called “rational anger” (e.g. Waiting six hours to see the doctor);
 Organic pathology: frontal lobe mass, dementia or delirium; and
 Personality style/disorder – the person whose approach to much of life is via anger or mistrust.

Use the "BATHE" approach to create an empathic milieu (A person’s social environment). As with any
difficult patient situation, communication techniques are especially important so that both the patient and
physician do not become further embittered and frustrated.
 Background: Use active listening to understand the story, the context, the patient's situation.
 Affect: Name the emotion; for instance, You seem very angry…. It is crucial to validate feelings so the
angry person feels that you are listening. Attempting to defuse it, counter it with your own anger or
ignore it, will be counter-productive.
 Acknowledging their right to be angry will help start the healing process and solidify the therapeutic
relationship.
 Troubles: Explore what scares or troubles them the most about their present and future. Just asking
the question Tell me what frightens you? will help them to focus on circumstances they may not have
considered.
 Handling: Knowledge and positive action can help mitigate fears and reduce anger. How are they
handling the dying – are they making concrete plans about their finances, their things, their
family? Have they thought about formal counseling to help deal with the depression, the anger?
 Empathy: By displaying empathy and concern you can help the person feel understood, less
abandoned and alone. Avoid trite statements such as I know what you're going through. Paraphrasing
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 the patient’s comments is an effective way to convey that you heard and are seeking to understand:
You feel like it's so unfair that the cancer appeared out of nowhere after all these years.
Effective’s ways of managing anger.
1. Understand that it’s not easy being a patient or a family: no person would ever want to be stuck
in the hospital for days, and to be taken care of by different strangers every eight to ten hours. Try
to understand that it’s really not easy being a patient nor to be a relative whose loved one is in
critical condition. If nurses tend to get cranky under stress, so are they.
2. Show empathy: As a nurse, your role is to let the patients feel that you understand and care about
them. You can show empathy by focusing your attention on their feelings, expressions, and actions.
Show them that you are interested and that they are important.
3. Allow the patient to blow off some steam or ‘calm down: The situation may worsen if you just let
the patient stay angry. One of the best things you could do is to let them calm down first before
you give them your explanation. Remind yourself that they are not happy about being ill, so it’s
best to just try your best to keep yourself cool while waiting for them to calm down.
4. Do not invade the patient’s personal space: Try not to get either too close or too far from them.
Let them feel that they still have their own personal space that you wouldn’t be invading and that
they are safe there.
5. Do not touch them: In line with letting them have their personal space, try not to touch them. This
might only make things worse and make them feel that you are invading their own happy bubble.
Let them speak their mind from a comfortable distance, but not too far that you’d have to shout at
each other, or too near that you’d be uncomfortable to speak.
6. Be sensitive: If a patient gets mad at you for something, don’t think that he is a bad patient or
person. Think about how you would feel if you were in their shoes. Being sensitive to people’s
feelings means accepting them and respecting them no matter what happens.
7. Be gentle: Gentleness is a quality that comes from the heart and soul. People who are gentle
establish peace and are strong enough to remain calm and show restraint even when faced with
difficult situations. Think before you respond to anything the patient says. Sometimes, people react
too quickly without taking time to think about how their responses might affect others. If you are
to respond, do it in a calm and kind manner. If you want to make the situation better, try to avoid
negativity. Instead, focus on something that you can do to help the person.
8. Do not argue: Trying not to argue doesn’t mean you cannot voice out your opinion. It only means
you have to state your point in a decent and respectful manner. Be truthful of everything you say,
and try not to think that you are always right. Communicating better and having a positive behavior
towards any issue will solve anything.
9. Apologize for the inconvenience: Something must have gone wrong that may have caused the
patient to be angry. It’s okay to accept it and apologize. Remember that our main goal is to restore
the patient’s health. Apologizing will not make you less of a person; it will only show that you are
strong and brave enough to accept your mistakes. It could also lessen any tension that may occur
between you and your patients (or their family members).
10. Settle the issues immediately: Of course, it is best to work on the complaint as soon as you can.
The patient or family member is angry for a reason. Make sure to take note of the details of their
complaint and find time to fix it.
11. Keep your promises: When dealing with patients, you tend to say things you do not mean, and
more often than not, give promises that you cannot keep. Remember that the patients expect so
much from nurses that they will believe whatever nurses will tell them. Never compromise.
12. Set boundaries: It may come to a point when you have to set a boundary. Keep yourself safe but
let them know that you are listening to them. Defuse situations before they even escalate. A
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 patient has the right to be involved in their medical decision-making, but they cannot use that right
for any unreasonable demands.
13. Communicate: Communication is one of the most important aspects of the nursing profession. Be
honest with everything you say to the patient. Be available and responsive to your patients. Never
let them feel that you are ignoring them. It will be much easier to fix things if effective
communication is used.
14. Acknowledge the emotion that the patient is projecting: Validating the person’s feelings will help
them feel understood. Let them feel that their feelings make sense, that you hear them and you
understand them. People, especially those who are angry, often need to know that you don’t think
they are bad or crazy for feeling that way. Validating a person’s feelings requires a temporary
suppression of the impulse to explain your side. Focus your attention on what your patient or their
family member feels and try to acknowledge their feelings.
15. Listen: This means that you have to let your patient speak their mind without interrupting.
Listening does not only expand your capacity for empathy, but it also sharpens your
communication skills. Active listening also means you should look at the problems from the other
person’s point of view. Focus on what the person is saying to you before offering any help.
Remember to take note of what they are saying, and try to retain the information.
16. Ask open-ended questions: Ask gentle, probing questions to learn more about what the other
person think and feel. Ask clarifications if you don’t get what the patient is trying to say. Remember
that close-ended questions might make the situation worse because it will only let them feel that
you are not interested in what they have to say. Open-ended questions, on the other hand, will
show them that you care. Ask them questions like “Why do you feel this way?” or “How do you feel
about it?”.
17. Don’t make defensive responses: Think first before responding. Learn how to pause and breathe.
This will calm you down and control your response. It will also prevent an unnecessary outburst.
Understand that many factors have led to a verbal attack from your patient or their family
member. Consider that you may not be the sole reason for their anger and that there is no point in
getting defensive.
18. Make use of appropriate language: Never forget your professionalism even when you are under
stress. Make sure that the language you use is appropriate for the situation you are in. Angry
people tend to say things they don’t really mean, and it’s possible that you could say things that
you will regret when things cool down later on. Choose your words wisely.
19. Watch your body language: Never cross your arms when facing them and don’t turn your back
from them while they are speaking. Maintain eye contact if necessary, just so you can let them feel
that you are open to what they have to say. Openness means that you are willing and ready to
listen to them without judgment.
20. Shake it off: Learn how to breathe properly so you can let all the anxiety and anger leave your
system whilst exhaling. This will not only help you relax, but it will also give you time to think about
your actions and words. Don’t let one difficult situation ruin your whole day. Remember that the
nursing profession is not an easy job and that there are far more difficult things you have to face
every day. Learn how to accept these things that you cannot change, and you will be able to
handle things more gracefully and calmly like never before. It will all get better soon.

WILL MAKING AND LEGAL ISSUES

The Law of inheritance in Uganda is found in the SUCCESSION ACT, Chapter 139 of the Laws of Uganda as
amended by Decree No. 22of 1972. This Law has a section on how to make a WILLS and what happens after a

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maker of a WILL has died. The same Law also provides for the circumstances under which the property of a
person who dies without making a WILL is distributed.
In most cases, the Law relating to inheritance and succession has not been followed by members of the family
and clan leaders when distributing property. They usually distribute property according to customary Laws and
practices, which, do not always take into account welfare of the widow or widower and the children.
It is therefore important that where possible, individuals make a will before they die to ensure that their
property etc. is distributed as they would wish.

Definitions
• This is a document which expresses the wish of the person how his or her is to be after death.
• The will can contain other things that the person would like to be buried with.
• Administrator/ Administratrix: This is a person who obtains permission from a court of Law to manage
the property which was owned by the deceased.
 Child: Is a person under 18years of age, and includes children born within marriage and outside
marriage.
 Customary heir: A person appointed by the deceased or the family clan members to succeed the
deceased according to customs of the tribe of the deceased.
 Deceased is a dead person
 Dependent relatives: A wife or husband , a son or a daughter under 18yrs of age, or a son or daughter
above 18yrs of age who is wholly or substantially dependent on the deceased.
 A parent or a brother or a sister, a grandparent or a grand child who was wholly or substantially
dependent on the deceased to look after their basic needs.
 Estate: Means all the fixed and movable property of the deceased person and includes houses,
agricultural products, land, animals, chicken, food stuff, personal belongings, motor vehicles,
shareholdings, cash in the bank and money owing to the deceased.
 Executor: A male person appointed in the Will of a deceased to carry out the terms of the Will.
 Executrix: A female person appointed in the Will of a deceased to carry out the terms of the Will.
 Husband: A man who is married according to the Laws of Uganda or other foreign Laws where the
marriage was celebrated.
 Wife: Means a woman who is legally married according to the Laws of Uganda or any foreign Law
where such marriage was celebrated. It does not include people who merely had children with the
deceased.
 Personal representatives: Means a person appointed by the curt to look after the estate of a deceased
person and whom probate or letter of Administration have been granted.
 Probate: This is the permission granted by court of Law to manage the estate of the Will maker.
 Letters of Administration: This is the permission granted by Court of Law to a person who dies without
making a Will.
 Residential Holding: The home normally occupied by the deceased person.
 Testator: A person who makes a Will.

THE LAW OF UGANDA RECOGNIZES THREE (3) DIFFERENT TYPES OF MARRIAGES:

1. Marriage Registration: Marriage celebrated either in a Registered Church, or the Office of the Chief
Administrative Officer, or the Registrar General’s Office.
2. 2. Customary Marriage: A marriage celebrated according to the customs of a given tribal community in
Uganda. These marriages are known as a customary marriage and must be registered.

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 3. 3.Sharia Marriage: A marriage celebrated in accordance with the Moslem religion, a Marriage
celebrated in accordance with the Hindu religion.

Why should Palliative care (PC) be considered a human right?

• PC is borne out of human value and dignity. It’s about human rights. Understanding the human rights
of patients is central to providing PC. Both PC and human rights are based on principles of human
respect, dignity, non-discrimination and universality.

• PC is a holistic approach that improves the quality of life for pts and their families by not only
addressing physical issues but also the psychosocial, legal and spiritual problems associated with life-
threatening illness.
• PC, when seen through the lens of fulfilling the rights of the patient, will adhere to the ethical
principles of care and professionalism; it will also take into consideration the legal needs of the pt that
render them or their close family insecure –such as property issues, succession and estate planning,
custody of children. [MOH 2012].

What are some of the legal issues that might arise within the context of PC?
• Health care workers recognize the distress that legal issues may create for their pts and patients’
families. As a result, health practitioners and clinical personnel can play a crucial role working at the
intersection of law and health, combining legal knowledge with an understanding of health issues and
the challenges facing a person with a life-threatening illness.

• Health care workers are encouraged to assess the legal needs of their pts and offer the necessary
support. The main legal issues in PC include succession planning [particularly WILL writing and
property inheritance], appointing others to act for someone who is incapacitated through illness,
following up on social security benefits due, and the custody of children. Hence the focus in this
section is on the issue of WILL writing.

Definition of a ‘WILL’
This is a document which expresses the wishes of the person and how his/her property is to be shared
among the people /persons named in the document after the owner of the property has died.
 OR: a WILL is a document made during a person’s lifetime in which he/she directs or states how
his/her property and other affairs should be dealt with after his/her death.
 OR: A Will is a written document made during the maker’s life in which that person clearly leaves
instructions as to how the property should be managed or divided after that person’s death.
The WILL can also contain any other wishes that the person making it would like e.g burial place, arrangement
of last funeral rights, and the installation of the heir/heiress., as well as a guardian for the children of the
deceased.
What is inheritance?
It is the process by which property and responsibilities left by the dead person is shared out among specified
persons according to the wishes of the dead person or according to the manner laid down in the law. There
are two ways of inheriting;
 Where there is a WILL left by the dead person
 Where there is no WILL.

How can one make a will?

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  A will can be made by only one male or female married or single but the person should be; 21 years
and above, of sounding mind, aware that he or she is making it.
 A will should be in writing. It can be had written by one self. If the person making the will cannot write
h/she can ask another person who she/ he trust what to write.
 A lawyer can also writ it on payment.
 Check patient understands frequently.
 Clearly where necessary.
 Through the session provide support especially through active listening which is important in
establishing a patient’s gender.
Who can make a will
• A WILL can be made by anyone, male or female, married or single but the person should be;
 Anyone who has attained the age of 21years and above.
 Of sound mind [the Testator must understand what he/she is doing at that material time, he/she must
not be mentally unbalanced or senile].
 Acting voluntarily on his/her own free will.
 Not too sick or drunk at the time of making it (Aware that he/she is making it).
NB: In the cases of a soldier who is at war or a marine who is at sea, the minimum age for him/her to be able
to make a Will is 18yrs.
A person who is ordinarily insane, can make a Will during those moments when he or she is not insane.
NB: a person who makes a WILL is called a Testator.
A WILL is not recognized in law if it is made by a person who is;
 Below 21 years of age.
 Was mentally unsound at the time of making it
 Was too sick to know that he/she had left no WILL.
 The property will be distributed as if he/she had left no WILL.

In what form can one make a WILL?

A WILL should be in writing, it can be hand written by one making it or if the person making it cannot write ,
he/she can ask another who he/she trusts to write and he/she tells the writer what to write. A Lawyer can also
write it on payment of his/her fees.

WHAT IS THE IMPORTANCE OF MAKING A WILL?

Quiet often death robs us of our dear ones, leaving us behind with broken hearts. More so for the children and
their mothers [orphans and widows] who are so much emotionally torn apart that they tend not to be sure
about their survival of future, after the death of the breadwinner. It is usually advisable for the family to
prepare the process of inheritance, of whatever property the deceased could have had in his/her life.

1. A WILL spells out clearly the wishes of the testator and provides for orderly succession that can be
followed.
2. A WILL spells out how the property is to be dealt with, thus creating protection.
3. The WILL may provide the guardianship of minors.
4. The beneficiary gets what they are entitled to under the WILL, and avoids questions and quarrels
among relatives.
5. The paternity [the state of being a father] of the children will not be disputed.
6. The executor is able to collect the debts due to the deceased.
7. It gives one chance to give away all hi/her property, even to those not known to relatives.

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 8. You can also state who owes you a debt, and your relatives will make sure that it is paid.
9. It provides guidance for proper administration of estates and property worked for, by the deceased.
10. It apportions responsibilities like raising of children by different relatives
11. It ensures social and financial security of dependants [orphans and widows].
12. It gives chance to say whether you owe anybody a debt and how the debt is to be paid.

What are the essential contents of a will?

1. The maker’s full names, place of birth, tribe, place of origin and the names of his or her parents,
clan/religion and address of the Testator (Postal address and Physical address i.e. the name of the
village and Sub-county where the maker ordinarily resides).
2. Date when the WILL is made [the day, month and year when you are making it].
3. If the maker is changing a Will, he/she should clearly state that he/she is cancelling any Will which
he/she may have made earlier.
4. Names of the executor(s) or Executrix of one’s will, who will carry out the maker’s wishes as stated in
the WILL.
5. Appointment of the heir/heiress [a woman who inherits or has a right of inheritance] i.e the full names
of the customary heir/heiress.
6. Names of the guardians appointed to look after the young.
7. The (Marital status) and name(s) of the maker’s wife/wives or Husband, if any, and the place and date
of the marriage. If one is separated or divorced, then the date of divorce/separation should be stated.
8. The names and number of all children born within and outside marriage.
9. The names of any dependant relatives whom the maker MAY WISH to provide for in his/her Will.
10. A full list and description of the property of the deceased (the property that should be for the MAKER
and not that of another person).
11. The names and address of the people, including the husband/wife’s children and relatives, if any, to
whom the maker is leaving the property and how such property is to be distributed after death.
12. Other wishes like burial grounds are specified.
13. Creditors and whatever is owed should be mentioned and how to pay him/her back.
14. Debtors and the amounts due should be mentioned.
15. The signature or thumb mark of the Will maker.
16. The names, address and signature of at least two witnesses.

NOTE:
 The Testator should sign the WILL. It is advisable to sign all the pages of the WILL, to prevent forgeries
and number the pages accordingly. If the Testator cannot write, he/she should thumb print.
 Two people [witnesses] should see you signing or thumb print the WILL. They are not supposed to read
it.
 The two witnesses should write their full names, addresses, occupations on the WILL and then sign it.
It is also useful to include the following additional information in the Will.
1. If one is employed, then indicate the name and address of your employer, the date you began working,
your rank, full salary and any other benefits you are entitled to.
2. If you are self-employed, state so in the Will giving details of your work.
3. The name and address of all commercial business in which you have a shareholding or an economic
interest and the extent of such interest.
4. The names of your partners or business associates and the nature of business transaction you are
involved in with them.

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 5. 5. Any insurance policies maintained by you or by your employers for your own benefit or for the
benefit of the members of your family.
6. 6.The names and address of the Bank or Banks where you maintain Accounts, indicating the Account
numbers.
7. 7.Your burial wishes that is the place where you wish to be buried and what you would desire to be
done or not to be done at your burial.
8. 8. The names and addresses of the people or the places where you have kept the other copies of the
Will.
9. NB: The witnesses to your Will who should not be less than two must not insist on reading the Will, as
they are not required under the Law to know its contents. They are required to sign the Will as proof
that it was voluntarily made by the Will maker while in his/her right mind.

Who can be a witness?

• Anybody with a sound mind and is 21years and above.
• Any person given something in the WILL should not witness that WILL because under the Law, he/she
will not be allowed to get what is left for him/her in the WILL.
• The WILL can be written in any language one prefers but it should be a language well known to
him/her very well, but it should be in simple language.
Can I change my WILL?
Yes. It can be changed at any time one wishes, when you get or lose property, or when you have children
whom you want to leave something to or when you re-marry another wife.
• When you write a brand new WILL, state the date of your old WILL and that it is cancelled.
• When you marry, the Law says that previous WILLs do not apply. Therefore, make a new WILL when
you marry or whenever you marry another wife.
How do I change a WILL?
You follow the steps as for making a new will
 You either make a new document or write the changes on the old WILL stating it is a new WILL.
 The document should be dated.
 The document should say that it is making changes to the first or second e.t.c WILL dated……./put date
of 1st or 2nd WILL.
 List the changes.
 Sign your name on every page and the last page, numbering them accordingly. Your signature or
thumb print should be witnessed by two people.
 Your WILL can only be changed by the Testator. Nobody else, neither the family nor the clan can
change the WILL for you.

If a wife or a child is left out of a WILL, what should I do?

 It is a general rule that the Testator should provide for the dependants, the wife and children. If for
example, you are a wife or child and the WILL does not give you anything, you should apply to court.
The court will ensure that you are provided for, during the distribution or the court will redistribute the
property, so that you get a share.
 It is important to note that the matrimonial home cannot be given out in a WILL. It is automatically
taken over by the surviving spouse or spouses as the case may be. The minor children of below the age
of 21years are also entitled to live there.
Where should a will be kept?
A WILL can be kept with any of the following persons, as long as the maker trusts them.
 Bank Manager
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  Reverend/ Church Priest/Imam
 Executives of Local Council
 Headmaster or Headmistress
 A friend
 A spouse
 The Administrator General
 Your Lawyer
 Legal NGOs like FIDA (U), Legal Aid Project of the Uganda Law Society (LAP), Legal Aid Clinic (of the Law
Development Centre).
 A relative
 With the Registrar general.
What invalidates a will?
A WILL is not legal [invalid] if the court, upon being presented grounds or evidence, declares the WILL invalid
for the following reasons;
1. If the Testator was of unsound mind or senile.
2. If it was made under force or threats [duress].
3. If the Testator was under age.
4. If the Testator married after making the WILL.
5. If the WILL is ambiguous [not clear].
6. If the estate or subject matter of the WILL perishes before death.
7. If the WILL was not signed by the Testator or witnessed.
8. That some or all the property which formed the subject matter of the Will was sold, given away or
destroyed before death of the WILL maker or before the Execution of the WILL.
9. That the WILL make did not adequately provide for the wife or wives or any one of them, or husband,
minor children below the age of 21yrs and those dependent relatives who totally or substantially
depends on the deceased for providing their necessities of life.
NB: It should be noted that if the WILL is declared invalid by the court, the property of the WILL maker will be
disposed of in accordance with the provisions of the Law relating to persons who have not made a WILL.

How will the property of the deceased be shared if he/she has not made a WILL?
 The law has provided the following ways of sharing property. All the property is put together and taken
as one whole, making 100 parts of 100%. These parts are then divided among depending on whether
the deceased has left behind a wife or wives, husband or husbands or other dependant relatives.
 Where a person dies leaving behind a wife or husband, children, a customary heir and other dependant
relatives, these people are entitled to the following shares out of the estate.
 The children; all the children of the dead person legitimate or illegitimate, share equally 75% of the
property left.
 The widow (s)/widower get 15% of the property plus the house where the family has been living.
 Dependants share 9% of the property. These dependants could be your relatives or adopted
children.
 The customary heir gets 1%.
 NB a widow is not a property and cannot be shared or taken by another male relative of the dead
husband, although she can decide freely to remarry even within her former husband’s clan.
 A widow has the right to live in her former husband’s home until her death or until she remarries.
Anybody who tries to send her away breaks the law.

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  A widow’s personal property, be it treated as belonging to house hold goods, should not be treated
as a belonging to the dead husband nor is it to be shared out among others.

Where a person dies leaving behind a wife, or husband , heir and dependant relatives but NO CHILDREN, the
property should be distributed as follows;
• The wife (Wives or Husband) 50%
• Other dependant relatives 49%
• The Customary Heir 1%
Where a person dies leaving behind a wife only or dependant relatives, only and the Heir but NO CHILDREN,
the property should be distributed as follows;
• The Wife/wives or Husband the dependant relatives (as the case may be) 99%
• The Customary Heir 1%
What is the work of the Guardians? The duties of the guardians are as follows;
 To look after and guide the children.
 To look after the property of the children, making sure it is used by the children only and not misused
by other relatives.
 When the child grows up, he/she is to hand over the balance of the property left, to the owner and to
show what it was used for, and how it was used. The law says that a guardian who misuses property of
a child must pay it back.
What are the duties of the Executors/ Executrix named in the WILL?
 To report the death to the office of the Administrator General or the Chief Administrative Officer in the
District.
 To apply to a Court of Law within two months from the death of the WILL maker and get the necessary
powers to carry out the wishes of the WILL maker as stated in the WILL.
 To collect the property of the deceased and any debts due to him or her at the time of his/her death or
those that he/she owed others at the time of death.
 To make an account of the estate to the Court of Law that granted him/her powers within six months
of the grant, showing the manner in which the property has been distributed.
 To maintain out of the funds of the deceased (if available) the Widow/Widower, children and
dependant relatives including payment of school fees for the children.
 To distribute the property of the deceased in accordance with the wishes of the deceased as stated in
the WILL after complying with all the above requirements.
NB: what happens if no Executors/ Executrix are named in the WILL?
Where the WILL does not name the above, those close to the deceased person such as the Widow/Widower,
Heir or adult children, may individually or jointly apply to the court of Law for letters of Administration in
order to attend to the affairs of the deceased.
This application is made after the Administrator General has given them a LETTER OF NO OBJECTION.
What is the work of local council in the inheritance matters?
1. The role of the L.C relates to the following;
 Protection of widows and children from relatives who want to take away their property.
 Presenting a proving/confirming the death of a person, to the office of the Administrator General
and the court.
2. Letters of Administration: are authority granted by the court to a person to administer the estate of a
person who has died without leaving a WILL.

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Who can apply for letters of administration?
The wife/wives or husband of the deceased.
 Children of the deceased who are of age.
 A close relative of the deceased.

What is the essential for getting letters of administration?

 Report the death of the deceased with all the relevant documents.
 Apply to the administrator general for a Certificate of No Objection’
 The certificate of no objection is clearance which enables the person to apply to court for the letters of
administration.
NOTE: The children must have been accepted by the dead person during his/her life time.

These three situations have been highlighted as they are the most common in everyday life. The following
points, however, need to be noted when any of these schemes of distribution is being applied;
1. The residential holding is NOT included in the property to be distributed according to the scheme
outlined above. The residential holding should be held by the person to whom Letters Administration
have been granted upon trust for the legal heir. It is held subject to the widow and children below
18yrs if they are boys and 21 years if they are unmarried girls, to stay in the home until any of the
following things happen.
 In case of a widow if she dies or remarries or ceases to occupy the house for a continuous period
of six months, or if she consents to leave the house and voluntarily surrenders it.
 In the case of a female child, if she dies, or reaches the age of 21 years or marries before attaining
21yrs of age, or if she ceases to reside in the house for a period of continuous period of six months.
 In the case of a male child, if she dies or becomes 18yrs or more or ceases to reside in the house
continually for six months or more.
2. Where the LEGAL WIVES are more than one, they share equally the property given to them.
3. Where a wife has been separated from her husband as a member of the household and he dies
without having made a WILL, she will not be entitled to automatically share in the property of the
deceased. She makes an application to Court either before his death or within six months from the
death of the husband to be able to share on the property. She has to show that she was separated
from the deceased with reasonable cause.
4. The scheme of distribution equally apply to a husband whose legal wife has died without making a
WILL. He is also entitled to 15% of the property or to a bigger share in case there are no children or
dependent relatives to share in her estate.
5. All children both born within and outside wedlock shall share equally in the children’s share of the
deceased’s estate. It should be noted that it is an offense for any person to chase the widow or
children out of the residential home, or for a person to handle the estate without the authority of a
court of Law.
NB: the list of troubles the widow and the children are likely to go through where no WILL has been made
cannot be exhausted here. The only way to safeguard against this is by MAKING A WILL.

STRESS IN CARE GIVERS

Is the response of the body to any agent threatening of physical, psychological, social, cultural, physiological
wellbeing of an individual such as agent are called stressors.
Manifestation of stress.
 Tiredness and weakness
 Constipation
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 Headache
 Pain or discomfort
 Palpitation
 Irritability
 Restlessness
 Loss of memory
 Lack of concentration
 Depression
 Tension and worries
 Low libido
 Loss of interest in and commitment to work
 Loss of punctuality and neglect of duties
 Feelings of inadequacy, helplessness and guilt
 Loss of confidence and self-esteem
 A tendency to withdraw – both from clients and from colleagues
 Loss of sensitivity in dealing with clients
 Loss of quality in performance of work
 Irritability
 Difficulty getting on with people
 Tearfulness
 Loss of concentration
 Sleeplessness
 Excessive fatigue
 Depression; and
 Bowel disturbance
People who die prone to stress;
 All people in life at whatever level e.g. patient, drivers, adolescent, employers, candidates, pregnant
mothers.
Stress of careers
 Caring for terminally ill patient is not easy one can also be stressful.
 There is danger of caregivers to become overwhelming, ignore signs of ill health and tail to seek help
Stressors in palliative care
1. Complaint, patients and their families may complain of very many drugs including the care given
2. Anger, bereaved relative may blame the palliative care providers for the inadequate pain system pain
control to their patient
Management: These two can be managed by giving relative chances to talk about complaints and be there to
listen to the concerns. Also acknowledge any mistake made by the team and apologies, the relatives are
interested in only an explanation, apology, counseling and support where necessary.
3. Handling uncertainty;
 Much of the palliative care is uncertainty e.g. the prognosis is difficult to predict. Endless
interruptive, unpleasant explained home visit palliative care emergencies and break down of
communication.
 Discussions are made with inadequate information in an environment where advice from the
colleagues may be conflicting.

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Management: This can be addressed y the team making an effort and acknowledge uncertainty. Patients and
family members should be involved in decision making as equal to pertness. Team members should share
uncertainty with colleagues, patients and their relatives and work with flexibility.
4. Ethical problems:
 There is an increase in ethical problems
 This is addressed through organizing family meeting.
5. Time management
 The work load may be over whelmed in compared with time available. Some team to members lack
training in time management
 This issue can be solved through use of support; efficient secretarial and administration staff to
recognize works effectively. Improvement on the staff issues and learns to save time not on certain
events.
6. Emotional cost of caring
 Palliative caregivers are involved in different emotional conversation with the dying and sharing his
or her distress
7. Keeping up to date
 It is stressful if a professional feels inadequate to operate palliative care service due to lack for up
to date knowledge
 This is managed by involvement of clinical supervision and monitoring through discussions such as
weekly acre center journal clubs and attending special use palliative care course
8. Team work
 The rate of nurses and DR can overlap in palliative care. It creates a potential for conflicts and
misunderstandings
 A nurse may question Dr’s decision for better patient care. A DR may fail it critics hence conflict and
handling of attitude
 This can be addressed through team member’s role and goals for cares should be clear enough for
all understanding. Effective leadership encourage ac culture where every team member knows
their value and responsibility
9. Homework interaction
 Team members who always who a lot need as much as support attention than those who are
frequently absent.
 Always find final way of blaming work with the family life
 This can be addressed by lifestyle, if incorporates management overlie to enable periods of
relaxation, exercise companionship and other activities which can help distance oversells from the
work situation. Also it include having balanced in our life between home family
Ways of coping up with stress
 Recognize that you are stressed and recounting one can begin to deal with it
 Develop your own stratagems
 Being supported in one of the most collegial support groups to deal with feelings and anxieties
generators in working settings
 Seek counseling if indicated to help, classify cancer
 Plan a daily relaxation program with meaningful quiet time to reduce tension e.g. read, listen radios
 Establish a regular exercise program
 Get enough sleep
 Massages
 Learn to accept family or your own
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  Recognize the most people to o the best they can
 Learn to ask for help and show your feelings
 Study assertiveness technique to overcome feeling of powerfulness in relation with what other says
 Accept what cannot be changed because there are certain limitations in every situation
Complications of stress
 Hypertension
 Mental illness
 Peptic ulcer
 Insomnia
Factors that lead to stress in caregivers
The most commonly reported causes of stress among carers working with terminally ill patients include:
 Secrecy and fear of disclosure among people with terminal illnesses
 Over-involvement with people with HIV or AIDS and their families
 Personal identification with the suffering of persons
 Lack of an effective voice in decisions that affect them and their work
 Inadequate support, supervision and recognition of their work
 Inadequate training skills and preparation for their work
 Lack of clarity about what the caregiver is expected to do
 Lack of referral mechanisms; and
 Lack of medication and health care materials

SPIRITUALITY IN PALLIATIVE CARE

 Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and
purpose and the way they experience their connectedness to the moment, to self, to others, to nature,
and to the significant or sacred.
 Spirituality means different things to different people. Religion and faith might be part of someone’s
spirituality, but spirituality isn’t always religious.
 Everyone has spiritual needs throughout their lives whether they follow a religion or not.
 Spiritual needs are needs for meaning and purpose in our lives
 The need to love and feel loved
 The need to feel a sense of belonging
 The need to feel hope, peace and gratitude.
 People do different things to meet these spiritual needs, depending on what’s important to them.
 Some people do things within their religion such as prayer or going to a religious meeting.

No. Spiritual concerns Description

1. Need for meaning in  The patient is having difficulty coming to terms with changes in things
the face of suffering that gave meaning to life (e.g., grief related to key relationships, illness,
frailty, dependency.
 (The focus here is on coming to terms with illness, loss, and
diminishment. If the issue is about the meaning of their life then score
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 under Legacy.)
2. Need for Integrity, a  The patient questions the meaning of their life; whether the life they
have lived has meaning.
legacy, Generativity  Patient has painful regret about some or all of life they have lived (If the
regret is about a relationship where reconciliation is possible it is OK to
score this concern here as well as under Concerns about Family and/or
Significant Others.)
 The patient questions whether they have made a positive contribution
to loved ones, others, or society.
 The patient has tasks they must complete before they are ready to die
(If tasks are interpersonal score under Concerns about Family and/or
Significant Others.)
 Reminiscing about their life is painful for the patient.
 Patient is distressed about having lived an imperfect life. (If the regret,
conflict or discomfort focuses on current illness, code under Need for
Meaning in the Face of Suffering.)
3. Concerns  The patient has unfinished business with significant others (e.g., need to
overcome estrangement, need to express forgiveness, need for
about family reconciliation; unfulfilled expectations of others). (Regrets about
relationships where reconciliation is unlikely should only be scored
and/or under Legacy).
 The patient has concerns about their family's ability to cope without
significant
them.
others  The patient has concern that they are a burden to their family.
 The patient expresses unwanted isolation, loneliness.
4. Concern or  The patient has concerns about dying: unready for death, impatient for
death.
Fear about  The patient is concerned to participate in important events before
death; the patient is concerned illness or death will prevent
Dying or Death
participation in important events.
 The patient is torn between letting go and fighting on.
 The patient has uncertainty or fear about life after death (afraid of
damnation; concerned about reunion with loved ones.)
 The patient has fear of pain or of pain in dying.
5. Issues Related to  The patient needs assistance with values-based advance care planning.
Making Decisions  The patient is confused or distressed about end-of-life treatment.
About Treatment  The patient has not expressed wishes about end-of-life treatment.

6. Religious/ Spiritual  The patient wonders whether they are being abandoned or punished by
God.
Struggle  The patient is concerned about God's judgment, forgiveness, and/or
love.
 The patient questions God's love for them.
 The patient feel God is not answering their prayers (e.g. asking to die
soon.)
 The patient expresses anger with God.
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  The patient is alienated from formerly meaningful connections with
religious institutions or leaders.
7. Other Dimensions  The patient identifies a need for assistance to perform important rituals,
religious or otherwise.
 Other spiritual concerns.
 For other people, it could be being with friends and family, spending time in nature or doing work or
hobbies. What’s most important to someone can change over their life time.
Spiritual needs in terminal illness

Being diagnosed with a terminal illness often causes people to think about death, loss and grief, in ways that
haven’t had to before.

Some people with a terminal illness may want to reflect on the meaning of their life, perhaps more so than at
any other time in their life.

What is spiritual distress?

 Spiritual wellbeing is often described as feeling at peace.

 Spiritual distress – also called spiritual pain or suffering – can occur when people are unable to find
sources of meaning, hope, love, peace, comfort, strength and connection in their life.
 This distress can also affect their physical and mental health. Terminal illness can often cause spiritual
distress in patients as well as their family and friends.
 How can I assess someone's spiritual needs?
 Encourage patients to talk about how they’re feeling. Someone might have unmet spiritual needs if
they are: searching for meaning, for example asking questions such as ‘Why is this happening?’, ‘Why
me?’, ‘Who am I?’ and ‘How will I be remembered?’ becoming more withdrawn and isolated afraid of
being alone refusing care saying they feel scared or worried.
 Many health and social care professionals find it hard to discuss spirituality with their patients. Some of
the reasons for this include: lack of training not knowing what to say being concerned about saying
something inappropriate.
Assessment of spiritual needs

There are a few basic principles that are prioritized as follows as key messages for hospice and palliative care
clinicians.

1. The first principle is the need for spiritual screening performed early in the course of care, in order to
identify the patient’s needs. Initial screening can also identify those patients who have urgent needs
that are critical to the patient’s well-being. These spiritual needs may include a
 Desire for forgiveness, a spiritual longing, or a feeling of separation from the divine, those with
fears about an afterlife, or in need of religious rituals such as confession or baptism. i.e. Two
simple tools include the single question “Are you at peace?” developed by Steinhauser et al.
and the FICA tool developed by Pulchalski et al. The FICA tool asks open-ended questions about
the patient’s faith community, the importance of spirituality, and how the patient would like to
have spirituality addressed as part of their care.

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 2. The second principle concerns spiritual history-taking: Patients facing life-threatening illness often
come to this experience with lifelong beliefs and values that influence decisions about their treatments
and preferences at the end of life. Spiritual history-taking goes beyond the initial screening or
assessment of urgent needs in order to better understand the patient’s life and story. Patients
frequently share a history of having had strong religious affiliation in childhood, but having moved
away from religion as adults. As they now face serious illness, there is often a strong desire to re-
connect with the faith affiliation of their early lives.
3. The third principle identified in the literature is the need in some cases for a more comprehensive
spiritual assessment, in a similar way that all patients need initial screening for physical symptoms.
Some patients will be identified to have complex pain, difficult to manage dyspnea, or constipation
resistant to the usual treatments and require more detailed evaluation, thus pain or palliative care
specialist clinicians are consulted. In a similar way, if a patient voices spiritual distress and a feeling of
being abandoned by God or punished by a terminal diagnosis, the clinicians would arrange for
chaplaincy involvement as soon as possible, in order to conduct a more thorough spiritual assessment
and to provide spiritual care .
Using of the HOPE tool which is based on the questions below:

H - Hope

What are your sources of hope, strength, comfort and peace?

O - Organized religion

Do you have a religion or faith?

How important is your faith religion or faith to you?

P - Personal spirituality and practices

What do you do that gives you a sense of meaning and purpose in life

In what ways does this add to your sense of identity?

E - Effects on medical care and of life issues

Has being unwell stopped you doing things that give your life meaning and purpose?

Are there any specific practices we should know about in providing for your care?

If you feel unsure about what spirituality means, or you find it difficult to talk about it, you might find it helpful
to do the assessment on yourself. It can help you to identify and explore your own thoughts on spirituality.

FICA assessment tool

F – Faith

I – importance

C – Community

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A - Address

Spiritual intervention

Spiritual interventions can only be provided based on patient assessment in order to know what practices,
such as prayer or religious rituals, are needed, and are culturally acceptable to the patients and their families
i.e. the nurse/health care provider encourages the patient to

 Respecting your own dignity and worth

 Developing/using your own spiritual resources
 Praying and meditating
 Joining a prayer group
 Participating in religious services
 Actively forgiving ‘those who have trespassed against you’
 Forgiving your own frailty and mistakes
 Creating and nurturing inner peace
 Seeking help from your religious/spiritual adviser
 Spending time appreciating nature
 Listening to sacred music
 Surrounding yourself with people who have sound ethical principles
 Using gentle humour with oneself and others
 Actively striving for wholeness.

Personal awareness
Personal awareness: Personal awareness is the ability for one to know, recognize, understand and appreciate
the following:
 Who they are with their own value and belief systems.
 The way they are ate to others, their character, attitudes, emotions and feelings as well as physical
appearance.
Self-awareness includes recognition of our personality, our strengths and weaknesses, our likes and dislikes.
Spiritual and personal growth is the first step to knowing yourself.

Importance of self-awareness in the provision of palliative care

Being self-aware can help as,
 We are more in charge of our lives, which is necessary in service provision.
 We develop greater sensitivity to our own feelings and to those of others.
 Reflecting on our own experiences in life, can help us to help others.
 We are better able to resolve our own problems or life issues, if we know ourselves well.
The Johari window: model of self-awareness
The johari window is a model that is useful for understanding oneself and others. It was developed by Joseph
Luft and Harry lngham in the 1950’s. They devised four windows that represent the areas of the mind and it’s
functioning within us and others.

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(i) Fred open area:

 This is the area of an individual that is known to self and others.

 Information about the person — behaviour, attitude, feelings, emotion. Knowledge, experience, skills,
views etc.
 The aim should be to develop this area for every person as it leads to effectiveness and productiveness
in the way we handle patients and families receiving palliative care
 Here good communication and cooperation occur, free from distractions, mistrust confusion and
misunderstanding
(ii) Blind area
 This is the area of an individual that is unknown to self but is known to others.
 By soliciting feedback from others. the aim should be to reduce this area and thus increase the open
area (increase self-awareness)
 This area also includes issues that others are deliberately withholding from the person.
(iii) Hidden area
 This is the area of an individual that is known to self but unknown to others and we usually prefer it to
remain unknown to others.
 Represents information, feelings, sensitiveness, fears, hidden agendas, manipulative intentions, secrets
that one knows but does not reveal
 Reducing the hidden areas reduces the potential for confusion, misunderstanding, poor
communication, etc. which can all distract from and undermine effectiveness
 The extent to which an individual discloses personal feelings and information, and the issues that are
disclosed, and to whom, must always be at the individual’s own discretion.
 Should disclose at a pace and depth that is comfortable for the individual
(iv) Dark area) unknown self
 This is the area of an individual that is unknown to self and unknown to others. This is normally an area
of potential for personal growth and development.
 Contains information, feelings, latent abilities, aptitudes, experiences that are unknown to the person
him/herself and unknown to others in the group These unknown issues take a variety of forms:
feelings, behaviour, attitudes, capabilities, aptitude] which can be quite close to the surface, can be
positive and useful, or they can be deeper aspects of a person’s personality, influencing his or her
behaviour to various degrees.
 Large unknown areas would typically be expected in younger people, arid those who lack experience or
self-belief.
 Counselling can uncover unknown issues, but this would then be known to the person and by one
other rather than by a group.

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  Providing people with the opportunity to try out new things, with no great pressure to succeed, is
often a useful way to discover unknown abilities, and thereby reduce the unknown area.
 Creating a culture, climate and expectation for self-discovery helps people to fulfill their potential and
achieve fore.
 Discovery through sensitive communications, active listening and experience will reduce the unknown
area.
A guide to developing self-awareness

The following questions are a good guide for better understanding of self.

1. Where am I in my life journey?

2. What social and cultural factors influence me?
 My country
 My tribe
 My social norms
 My belief e.g. cultural, religious etc.
 My judgments and principles
3. From birth, what influences me?
 Those from my family
 From the family I marry into
 From education
 Opportunities
 Work
 Friends
4. What do I think about my physical appearance?
 How do I see myself
 Am I satisfied with my appearance?
5. What is my image of God?
 Distant or near?
 Loving Father or a Judge?
 Existing or not?
6. What are my weaknesses?
 What frightens me?
 What makes me angry?
7. How do I deal with difficult situations? At work
 At work
 At home
 Consider using a model of reflection to help explore this e.g.
 Identify a situation/incident that dealt with
 What went well in my approach
 What did not go well/
 What did not go well?
 What did I learn from this incident?
 What could I do differently nest time
8. What unique gifts, talents and skills do I bring to this world?
9. What gives me meaning and purpose in life?
END
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