Palliative care and End- of-

life
Patient care iii
By J.O
 Palliative care- developing as an area of special clinic importance
through out the world

 The modern hospice movement- was founded by Dame Cecily

Saunders, the first set up was St Christopher's hospice in 1967

 Palliative care def; it is an approach that improves the quality of life

of patient and their families facing the problem associated with life
threatening illnesses, through prevention and relief of suffering by
means of early identification and impeccable assessment and
treatment of pain and other problems, physically, psychosocial and
spiritual
• Hospice movement began in the 1840s with Calvaires in Lyon, France.
It progressed through 1900 and led to establishment of the St
Joseph’s Hospice in London.

• It finally culminating with the progenitor of all modern hospices, St

Christopher’s Hospice, established in 1967 by Cicely Saunders.

• The first hospice in the United States was established in 1974 in

Connecticut.

• By 1975, a large number of independent hospices had been

developed in Australia, Canada and the United Kingdom.

• Modern palliative care evolved from hospice movement into a mixture

of academic and non-academic clinical care delivery systems that
have components of home care and hospital-based services.
• The term palliation is derived from the Latin root word palliare, which
means ‘to cloak’ or ‘to conceal’.
• Pallium also refers to the cloth that covers or cloaks burial caskets.
These root words suggest that the dying patient, not amenable to cure,
can be ‘cloaked’ or ‘embraced’ in the comforting arms of the caregiver.

• In 1990, the World Health Organization (WHO) defined palliative care as

the active total care of patients whose disease is not responsive to
curative treatment.
• The goal of palliative care according to WHO-
• Achievement of the best quality of life for patients and their families
• Many aspects of palliative care are applicable earlier in the course of the
illness in conjunction with anti-cancer treatment.
• Provide comfort and supportive care during the process
• Help to ensure dignity of death
• This definition was the first to suggest applicability even at stages of
disease that precede the end of life
• The most recent and comprehensive definition of palliative care as
outlined by the World Health Organization provides a framework for
palliative care in all settings.

• According to the WHO (2009), palliative care:

 – provides relief from pain and other distressing symptoms.
 – affirms life and regards dying as a normal process.
 – intends neither to hasten nor to postpone death.
 – integrates psychological and spiritual aspects of patients care.
 – offers a support system to help patients live as actively as possible until
death.
 – offers a support system to help families cope during the patient’s illness
and in their own bereavement
Autonomy
 The state of being self governed
 Thinking and acting independently without outside influence and
direction

Bereavement
 The state of having suffered the death of someone significant

Caregiver
 Anyone who provides care
 They are people who are willing to listen to ill persons and respond to
their individual needs
 Formal care givers are members of an organization and accountable
to define norm of conduct and practice
 They may be professionals, support workers of volunteers
 Informal caregivers are not members of an organization
 They usually don’t have formal training and are not accountable to norms of conduct or
practice
 They may be family members or friends

Dignity
 To treat individual with respect, esteem and regard

Family –
 Whoever the patient says is his or her family
 The family may include the relatives, partners, friends and pets

Grief
 Reactions- (physical, emotional, behavioral, spiritual) experienced in anticipation
of during and after a loss
Needs
 Issues that patients and caregivers mutually agree require attention in the plan of
care
Philosophy of Palliative Care

 To give people with life limiting illnesses a reason to hope and a

feeling of greater self-confidence and dignity
 Embrace a holistic approach to caregiving, which respects the dignity
and worth of each person
 Believe in creating an environment that natures the physical,
intellectual, social and spiritual wellbeing of those in our care

 Palliative or comfort care recognizes that death is a normal part of life

and strives to prepare patients and their families – so we can all die
on our own terms
 From the start of a serious or terminal illness, practitioners reduce the
burden on family caregivers by identifying and providing for the
needs of patients and patients family
 The needs may be;
 Physical
 Emotonal
Scope
 Provide relief from pain, shortness of breath, nausea and other
distressing symptoms
 Affirming life and regarding dying as a normal process
 Intends neither to hasten nor to postpone death
 Integrates the psychological and spiritual aspects of patient care
 Offers a support system to help patient live as actively as possible
 Offers a support system to help the family cope
 Uses a team approach to address the needs of patients and their
families
 Will enhance quality of life
 Is applicable early in the course of illness
 In conjunction with other therapies that are intended to prolong life, such
as chemotherapy or radiation therapy
Principles of Palliative Care
 Respect the likes and dislikes, goals choices of a dying person
 Integrate the psychological and spiritual aspect of patient care
 Offer a support system to help patients live as actively as possible
until death
 Patient centered rather than disease focused
 Concerned with healing rather than caring
 Affirms life and regard dying as normal process i.e as a part of a life
cycle
 Builds ways to provide excellent care at the end of the life
 Through education of care providers, appropriate health policies and
adequate funding from insurers and the government
 Provides relief from pain and other distressing symptoms
 Death accepting but also life enhancing
 Intends not to hasten nor post pone death
Principles……

 Adds life to days but not days to life

 Partnership between the patient and the care providers
 Supports the need of the family members
 Help them in gaining access to needed healthcare providers and appropriate
care settings
 Involving various kinds of trained providers in different setting tailored to the
needs of the patient and his or her family
 Offers support system to help the family to cope during the patients illness and
in their own bereavement, including the needs of the children
 Uses a team approach to address the needs of patients and their families
including bereavement, counseling, if indicated
 Enhance the quality of life, may also positively influence the course of a
patients illness.
What’s the goal of palliative care

 The goal is to improve the quality of life for individuals who are
suffering from severe diseases
 Offering a diverse array of assistance and care to the patient
 Achievement of the best possible quality of life for the patients and
their families regardless of the stage of the disease or the need for
the therapies
Three essential components of palliative care:

Symptom Psychological
relief Hope support

Honesty
Openness

Team work and partnership

WHOSE RESPONSIBILITY

 It is the right of every person with a life-threatening illness to receive

appropriate palliative care wherever they are

[NICE, 1998]
 Palliative care is the responsibility of all health and social care
professionals delivering care

[NICE, 2004]
Who provides palliative care

 Usually a team of individuals

 Interdisciplinary group of professionals

 Team includes experts in multiple fields

 Doctors
 radiotherapists
 Nurses
 Social workers
 Massage therapists
 Pharmacists
 nutritionists
EVOLVING MODEL OF PALLIATIVE
CARE
D
“Active E
Palliative
Treatment” A
Care
T
H

Cure/Life-prolonging D BE
intent E RE
AV
A E ME
Palliative/ T NT
Comfort intent H
 Potential palliative care
interventions
Generally
Palliative
not Palliative
suppor Variable CPR
t
 Emotional Ventilation
 Spiritual Transfusions
 psychosocial
Infections Highly
Control of burdensom
Hypercalcemi e
 Pain
a
Tube Intervention
 Dyspnea
 feeding s
Nausea
 Vomiting Dialysis
A Palliative Approach
Aims

 To improve the quality of life for individuals with a life-limiting illness

and their families, by reducing their suffering through early
identification, assessment and treatment of pain, physical, cultural
psychological, social and spiritual needs.
Myths about palliative care

 Residents will become addicted to pan relief drugs

 The palliative approach is only provided in hospital type settings
 You need to be an expert to be able to provide the care
 You need to be a nurse to be able to provide the care
 Applying the palliative approach will increase the care worker’s work
load
 The palliative approach is only provided to residents with cancer
 The palliative approach costs more
 PC Team
 Potential members of the interdisciplinary team for a palliative approach may include
but not be limited to:
 Care assistants
 General practitioners
 Generalist nurses
 Specialist nurses
 Aboriginal health workers
 Trained volunteers and their coordinators
 Pharmacists
 chaplains/pastoral care workers
 Recreation activity officers
 Pain specialists
 Allied health practitioners
 Specialist physicians
 community/ palliative services
 Psychologists/psychiatrists
 Specialist palliative service providers
 Managers
 Home attendants
 Physical, occupational, art, play, music therapist
SERVICES PROVIDED BY PALLIATIVE
CARE
 Interdisciplinary team care-nursing services, medical, social,
counseling, home health aide
 Bereavement counseling
 Dietary counseling
 Physical therapy
 Occupational therapy
 Speech therapy
 Investigations and drugs
 Durable medical equipment and supplies
Palliative Care Patient Support
Service
Three categories of
support
1. Pain management vital for comfort and to reduce patients’
distress. Health care professionals and families can collaborate
to identify the sources of pain and relieve them with
drugs and other forms of therapy
2. Symptom management treating symptoms other than pain such as
nausea, weakness, bowel and bladder problems,
mental confusion, fatigue and difficulty breathing
3. Emotional and spiritual support important for both the patient and
the family in dealing with the emotional demands of
critical illness
 FEW INTERVENTIONS
 Pain
 Limit unnecessary painful procedures
 Sedation and giving pre-emptive analgesia prior to a procedure { e.g.
including sucrose for procedures in neonates}
 Address coincident depression, anxiety, sense of fear or lack of control
 Considering guided imagery, relaxation, hypnosis, art/pet/play therapy,
acupuncture/acupressure, biofeedback, massage, heat/cold, yoga,
transcutaneous electric nerve stimulation, distraction.

Dyspnea or air hunger

• suction secretions if present
• Positioning, comfortable loose clothing, fan to provide cool blowing air.
• Limit volume of IV fluids considering diuretics if fluid overload/ pulmonary
oedema present
• Behavioural strategies including breathing exercises, guided imagery,
 MANAGEMENT OF DYSPNEA

Intervention Dose Comments

Weak opioids For patients with mild dyspnea

For opioid-naïve patents

Strong opioids For opioid naïve patients with moderate
dyspnea

For patients already taking opioids for

pain or other symptoms
Anxiolytics
• Fatigue
 Sleep hygiene
 Gentle exercise
 Address potential contributing factors { e.g. anaemia, depression, side effects of
medication

Nausea/ vomiting
 Consider dietary modifications {bland, soft, adjust timing/volume of foods or feeds}
 Aromatherapy: peppermint, lavender; acupuncture
 Constipation- increase fibres in diet, encourage fluids

Oral lesions/ dysphagia

 Oral hygiene
 Appropriate liquid,solid and oral medication formulation( texture, taste, fluidity)
 Treat infections, complications( mucositis, pharyngitis, dental abscess, oesophagitis)
 Orophayngeal motility study and speech (feeding team) consultation

Anorexia
 Manage treatable lesions causing oral pain, dysphagia and anorexia
 Support caloric intake during phase of illness when anorexia is reversible
 Prevent/treat coexisting constipation
Pruritus
 Moisturize skin
 Try specialized ant-itch lotions
 Apply cold packs
 Counter stimulation, distraction and relaxation
Diarrhoea
 Evaluate/ treat if obstipation
 Assess and treat infection
 Dietary modification
Depression
 Psychotherapy
 Behavioral techniques
Anxiety
 Psychotherapy (individual and family)
 Behavioral techniques
Agitation/ terminal restlessness
 Evaluation for organic or drug causes
 Educate family
 Orient and reassure child
 Elements of palliative care
1. PRIMARY GOAL: To prevent and relieve sufferings imposed by disease and their
treatment, achievement of best possible quality of life for patients and their
families regardless of the stage of disease or need for other therapies.
2. PATIENT POPULATION: Patients of all ages experience a debilitating chronic or
life-threatening illness, condition or injury
3. PATIENT AND FAMILY CENTERED CARE: The uniqueness of each patient and
family is respected. The patients family constitutes the care unit
4. TIMING OF PALLIATIVE CARE: It ideally begins at the time of diagnosis of a life-
threatening or debilitating condition and continues through cure, or death and
into the family’s bereavement period
5. COMPREHENSIVE CARE: Palliative care employs multidimensional assessment
to identify and relieve sufferings through the prevention or alleviation of
physical, psychological, social and spiritual distress.
6. INTERDISCIPLINARY TEAM: Teamwork is an integral part of the philosophy of
palliative care. Requires the expertise of various providers in order to
adequately assess and treat the complex needs of seriously ill patients and
their families.
7. Communication skills; effective communication skills are requisite in
palliative care
It include appropriate and effective sharing of information, active
listening, determination of goals and preferences, assistance with
medical decision making and effective communication with all
individuals involved in the care of patients and their relatives
8. SKILLLS IN THE CARE OF THE DYING AND BEREAVED. Team must be
knowledgeable and skilled in providing care for the dying and bereaved
9. CONTINUITY OF CARE ACROSS SETTINGS; palliative cares integral to
all health care delivery system settings (hospital, emergency dept,
nursing homes, home care, assisted living facilities, outpatient and non
traditional environments such as schools)
The palliative care team collaborates with professional and information
care givers in each of these settings
10. EQUITABLE ACCESS; palliative care teams should work towards
equitable access to palliative care across all ages and patient
populations, all diagnostic categories, all health care setting including
rural communities, and regardless of race , ethnicity, sexual preferences
or ability to pay
 11. QUALITY IMPROVEMENT; Palliative care services are committed to
the persuade of excellence and high quality of care which enhance
the quality of life
Benefits of PC
 These benefits are to the residents, their families and health care
team
 They include;
 Reducing potential distress to the residence and their families caused by a
transfer to an acute care setting
 Reducing the admission and/or transfer of residents to acute care facilities
a care staff develop the skills to manage the palliative care residents
 Increasing the involvement of the resident and their family in the decision
making about their care
 Encourage open and early discussion on death and dying
 Allowing for advance care planning
 Provide opportunities, especially for improved control of pain symptoms, in
a setting that is familiar to the resident
 Offer the resident and the family consistent and continuous care
What does palliative care provide?
 Helps patients gain the strength and peace of mind to carry on with
daily life
 Aid the ability to tolerate medical treatments
 Helps the patients to better understand their choices for care

Palliative care plan

 The plan includes
 Care goals
 Symptom management
 Advance care planning
 Financial planning
 Family support
 Spiritual care
 Functional status support and rehabilitation
 Co morbid disease management
 Relief of Tumor Pressure Symptoms
1. Pain Management: Use analgesics (e.g., opioids, NSAIDs) to relieve pain.
Consider adjuvant therapies like corticosteroids for inflammation and
swelling.
2. Radiation Therapy: Palliative radiation can help shrink tumors, relieving
pressure on surrounding structures.
3. Surgical Interventions: If feasible, debulking surgery may reduce tumor
size and alleviate symptoms.
4. Drainage Procedures: In cases of fluid accumulation (e.g., pleural
effusion), procedures like thoracentesis or paracentesis may be
performed.
 Control of Bleeding
1. Medications: Tranexamic acid or aminocaproic acid can help reduce
bleeding.
2. Radiation Therapy: Focused radiation can control bleeding from tumors.
3. Surgical Options: In some cases, surgical intervention may be necessary
to control the source of bleeding.
4. Topical Treatments: For superficial bleeding, topical agents may be
applied to promote hemostasis.
 Airway Obstruction
1. Bronchodilators and Steroids: These can help alleviate
obstruction due to bronchial compression.
2. Suctioning: For secretions causing blockage, suctioning can provide
immediate relief.
3. Stenting or Surgery: In some cases, inserting a stent or performing
surgery to relieve obstruction may be warranted.
4. Positioning: Keeping the patient in an upright position can help
improve breathing.
 General Palliative Care Approaches
• Holistic Care: Address physical, emotional, social, and spiritual
needs.
• Symptom Assessment: Regularly assess symptoms to adjust the
management plan as needed.
• Supportive Care: Provide psychological support, counseling, and
resources for patients and families.
• Advance Care Planning: Discuss goals of care and preferences
early to ensure alignment with patient values.
 Physical Support
 Symptom Management:
 Pain Control: Use of medications (analgesics, opioids) and therapies
(physical, occupational).
 Symptom Relief: Addressing nausea, fatigue, and other treatment side
effects.
 Nutritional Support:
 Dietary Management: Tailoring nutrition to manage symptoms and
maintain strength.
 Hydration: Ensuring adequate fluid intake to support overall health.
 Mobility and Functionality:
 Physical Therapy: Enhancing mobility and reducing physical limitations.
 Assistive Devices: Use of wheelchairs, walkers, etc., to promote
independence.
 III. Psychological Support
 Emotional Needs:
 Mental Health: Addressing anxiety, depression, and emotional distress
through counseling, therapy, and support groups.
 Coping Strategies: Teaching techniques for managing stress
(mindfulness, relaxation techniques).
 Social Needs:
 Support Networks: Importance of social interactions and connections to
combat isolation.
 Community Resources: Utilizing local resources like support groups,
hotlines, and online forums.
 IV. Role of Family and Caregivers
 Family Support:
 Emotional Backing: Providing love, understanding, and emotional
stability.
 Decision Making: Involvement in treatment choices and care planning.
 Caregiver Responsibilities:
 Daily Care: Assisting with daily activities (medication management,
transportation, personal care).
 Advocacy: Serving as an advocate for the patient’s needs and
preferences in healthcare settings.
 Education and Training:
 Informing Caregivers: Educating family members about the disease,
treatment options, and care techniques.
 Crisis Management: Training on handling emergencies and recognizing
signs of distress.
 Challenges Faced by Family and Caregivers
 Emotional Burden: Caregiver stress, anxiety, and burnout.
 Physical Strain: The toll of providing physical care and managing
logistics.
 Social Isolation: Caregivers may experience reduced social interactions
due to their responsibilities.
 VI. Support Strategies for Families and Caregivers
 Respite Care: Providing temporary relief to caregivers to prevent
burnout.
 Support Groups: Connecting with others in similar situations for sharing
experiences and advice.
 Mental Health Resources: Encouraging caregivers to seek counseling
or therapy.
 VII. Conclusion
 Holistic Approach: Emphasizing the integration of physical, emotional,
and social support in cancer care.
 Collaboration: Importance of teamwork among healthcare providers,
patients, families, and caregivers to achieve the best outcomes.
 Grief
 Definition: A natural response to loss, encompassing emotional,
physical, cognitive, and social reactions.
 Types of Grief:
 Normal Grief: Typical responses that fluctuate in intensity.
 Complicated Grief: Persistent and debilitating grief that interferes with
daily functioning.
 Anticipatory Grief: Grieving that occurs before an impending loss,
common in palliative care settings.
 Stages of Grief (Kubler-Ross Model)
 Denial:
 Initial reaction; refusal to accept reality.
 May include shock or numbness.
 Anger:
 Frustration and helplessness; may be directed at self, others, or the deceased.
 Can manifest as resentment or blame.
 Bargaining:
 Attempting to negotiate or make deals to reverse or lessen the loss.
 Often involves guilt or regret.
 Depression:
 Deep sense of sadness; withdrawal from activities and social interaction.
 May involve feelings of hopelessness.
 Acceptance:
 Coming to terms with the loss; recognizing and integrating the reality of the
situation.
 Not necessarily a feeling of happiness, but rather a sense of peace.