The Role of the Nurse and Advance Practice

Nurse in Hospice and Palliative Care

Marlene McHugh, DNP,

FNP-BC, AG/ACNP-BC, ACHPN, FPCN, FAAN, RN
Associate Professor, Columbia University School of Nursing
CUIMC Palliative Care Service, Attending Nurse Practitioner

May 9, 2024
Financial Disclosures
Marlene McHugh, DNP, FNP-BC, AG/ACNP-BC, ACHPN,
FPCN, FAAN, RN, has no financial arrangements or
affiliations with any commercial entities whose products,
research, or services may be discussed in these materials.
Any discussion of investigational or unlabeled uses of a
product will be identified.

No Planning Committee Member has any disclosures.

What Is Palliative Care?

• Beneficial at any stage of a serious illness,

palliative care is an interdisciplinary care delivery
system designed to anticipate, prevent, and
manage physical, psychological, social, and
spiritual suffering to optimize quality of life for
patients, their families, and caregivers. Palliative
care can be delivered in any care setting through
the collaboration of many types of care providers.

National Consensus Project, 2018

Palliative Care Is Appropriate at Any Point
in a Serious Illness
Life Prolonging Medicare
Diagnosis Treatment Hospice
of Serious
Benefit
Illness
Palliative Care

Chronic Disease Seriously Ill Hospice

2-20 years 18-24 months 6 months <

CAPC, 2013
 Palliative Care is Not Hospice

Palliative care is specialized medical care for people living with a serious illness. This type of care is
focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of
life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses, and other specialists,
who work together with a patient’s other doctors to provide an extra layer of support. Palliative
care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any
age and at any stage in a serious illness, and it can be provided along with curative treatment.
-- ELNEC
Continuum of Care

Death
Disease-Modifying
Treatment
Hospice
Care
Palliative Care Bereavement
Support
Terminal Phase
of Illness
 COMPARISON BETWEEN PALLIATIVE CARE AND HOSPICE
Condition Palliative Care Hospice
Uncontrolled signs and symptoms due to cancer or treatment
Any patient with metastatic or inoperable
Cancer Introduced at time of diagnosis if disease terminal
cancer
Introduced when disease progresses despite therapy
Heart failure symptoms at rest
Stage III or IV heart failure despite optimal medical management
Ejection fraction less than 20%
Angina refractory to medical or interventional management
New dysrhythmia
Heart disease Frequent emergency department visits or hospital admissions
Cardiac arrest or syncope
Frequent discharges from implanted defibrillators despite optimal device and
Frequent emergency department visits for
antiarrhythmic management
symptoms
Dyspnea at rest
Oxygen-dependent, O2 saturation less than 88% on room air
Signs or symptoms of right heart failure
Pulmonary Unintentional weight loss
O2 saturation less than 88%
disease Dyspnea with minimal-to-moderate exertion
PCO2 greater than 50
Other pulmonary diagnoses (e.g., pulmonary fibrosis, pulmonary hypertension)
Unintentional weight loss
Behavioral problems Unable to walk, bathe, or dress self without
Feeding problems, weight loss assistance
Dementia Caregiver stress Incontinence
Frequency of emergency department visits Less than six intelligible words
Increased safety concerns Frequent emergency department visits
International normalized ratio greater than 5
Albumin level less than 2.5 g/dL
Increased need for paracentesis for removal of ascitic fluid
Refractory ascities
Liver disease Increased confusion (hepatic encephalopathy)
Spontaneous bacterial peritonitis
Symptomatic disease
Jaundice
Malnutrition and muscle wasting
Not a candidate for dialysis
Dialysis Creatinine clearance of less than 15
Renal disease
Stage IV or stage V chronic kidney disease mL/minute
Serum creatinine level greater than 6 mg/dL
Frequent emergency department visits
Stroke
Albumin level less than 2.5 g/dL
Parkinson disease
Neurologic Unintentional weight loss
Amyotrophic lateral sclerosis
Decubitus ulcers
Multiple sclerosis
Homebound/bed confined
Institute for Clinical Systems Improvement. Health Care Guideline: Palliative Care. 5th ed., 2013
The Facts About Dying in America Today
• 60% of American adults live with at least one chronic
condition with 40% of these Americans having two or more
chronic conditions
• Over 3.3 million people died in the US in 2020
• Top leading causes of death in 2020 were:
➢ Heart disease (690,882)
➢ Cancer (598,932)
➢ COVID-19 (345,323)
➢ Unintentional injuries (192,176)
➢ Cerebrovascular diseases (159,050)
➢ Chronic lower respiratory disease (151,637)

Ahmad & Anderson, 2021; NCCDPHP, 2021

Snapshot of Palliative Care in the US Today

• 72% of US hospitals with 50 or more beds have palliative

care programs

• 94% of hospitals with 300 beds or more have palliative care

teams

• 86% of 56 freestanding children hospitals with 50 or more

beds report having a pediatric palliative care team

CAPC & NPCRC, 2019

Characteristics of Palliative Care Philosophy
and Delivery
Interdisciplinary care

Collaboration and communication between patients, families, health care

providers

Services provided concurrently with or independent of curative/life‐prolonging

care

Patient and family hopes for peace and dignity are supported throughout the
course of illness, during the dying process, and after death.

Services provided in acute care settings, clinics, and throughout the community

NCP, 2018
Where Can Care Be Provided
Palliative Care Reduces Avoidable
Spending and Utilization in All Settings

Source Centers to Advance Palliative Care

48% 50% 43% 36%
Readmissions Admissions Hospital/ Total Costs
28% 35% ED Transfers
Cost/Day ED Visits

INPATIENT OUTPATIENT SKILLED NURSING HOME-BASED

Chronic and Advanced Disease

• Patients with chronic disease can benefit from palliative

care
• It is vital that primary care clinicians and all those who
manage chronic illnesses have the skills to incorporate
palliative care into their practice

• Understand Trajectory of Illness and Technology

• Get to know your patients. Discuss their preferences and
values early and often

• Role for RNs in ACO, Complex Care Models

Why Integrate Palliative Care
Into Primary Care?
! There are barriers to getting patients to see specialty
providers for palliative care.
! Stigma – patients and providers
! Logistics – appointment burden
! Provider shortage
! One palliative care physician for every 1,200 people living
with a serious or life-threatening illness.
! One geriatrician for every 1,600 people over age 65

(2012 Workforce Estimates,Health reports)

Why Integrate Palliative Care
Into Primary Care? (Cont’d)
! Palliative care should be part of providing good,
comprehensive care to patients with chronic illnesses.
! It is often best to make decisions when patients are stable
and are able to think clearly about their values and goals.
! Primary care is at the front line of the healthcare system.
! Strong existing relationship between PCP and patient.
! PCP in a good position to recognize need for it.
! Can see a change in health status over time
 DOMAINS
OF PALLIATIVE CARE

Intro to Pa lliative Care v5 8.28.2020 18

 Clinical Practice Guidelines for Quality Palliative
Care, 4th Edition (NCP Guidelines)
• Clinical Practice Guidelines for Quality Palliative Care, 4th
edition, (NCP Guidelines-2018) creates a blueprint for excellence
by establishing a comprehensive foundation for gold-standard
palliative care for all people living with serious illness, regardless
of their diagnosis, prognosis, age or setting.

• The NCP Guidelines were developed by 17 national

organizations who provided representatives to serve on the
steering committee and writing workgroup.

• NCP Guidelines include 8 domains

https://www.nationalcoalitionhpc.org/wp-content/uploads/2020/07/NCHPC-
NCPGuidelines_4thED_web_FINAL.pdf
NCP Guideline: 8 Domains of Palliative Care
Structure and processes of care

Physical aspects of care

Psychological and psychiatric aspects

Social aspects of care

Spiritual, religious, and existential aspects of care

Cultural aspects of care

Care of the patient nearing the end of life

Ethical and legal aspects of care

NCP, 2018
Structure and Process of Care

• Begin with a comprehensive assessment and a care

plan that is consistent with a patient’s values and
goals…
Advance Care Planning

• The primary non-medical needs expressed most

frequently include: a need to express emotional pain, a
need to explore spiritual pain, and a need for practical
financial and legal help
Physical Aspects of Care

• Assessment should focus on relieving symptoms,

improving/maintaining quality of life and functional
status.

• Symptoms may include pain, shortness of breath, fatigue,

nausea, constipation, etc.

• Care is delivered in a manner that is patient centered as

defined by the patient's wishes.
Psychological and Psychiatric
Aspects of Care

• Psychological status needs to be assessed and

managed.
Watch for signs of family members struggling with
psychological issues.

• Programs and resources should be available to patients

and families based on assessed need for services.
IDT
Social Aspects of Care

• Social assessment should address environmental and

social factors, including, but not limited to:
– Social support network
– Financial barriers
– Access to care (e.g., transportation, medications)

• Family Meeting: Powerful clinical tool for completing the

comprehensive assessment and planning process.

• Communication and referrals to local/community service

providers
Spiritual, Religious, and Existential
Aspects of Care
• Spirituality is a multifaceted,
Cognitive
multidimensional human experience
that includes religious and nonreligious
factors. Experientia
l

• Offer support of spiritual counselor:

Priest, Pastor, Chaplain, Rabbi, Imam, or Behavioral
other religious leader.

https://clinmedjournals.org/articles/jfmdp/journal-of-family-medicine-
and-disease-prevention-jfmdp-3-056.php?jid=jfmdp
Care of Imminently Dying
• If possible, early access to Hospice care should be
facilitated
– Management of pain and other symptoms
– Address psychosocial, spiritual and cultural needs

• Anticipatory guidance of symptoms of impending death

are recognized and communicated to patients and
families
• Provide support and education to the family
– Assist in making critical decisions
– Develop post-death care and bereavement follow up plan
 Two Roads to Death
THE DIFFICULT
Tremulous ROAD
Confused Hallucinations
Restless
Mumbling Delirium
NORMAL
Myoclonic Jerks
Sleepy
Lethargic Seizures
Obtunded

THE USUAL Semicomatose

ROAD
Comatose
Emmanuel et al., 1999
DEAD
Silver Hour
• The metaphorical 30 minutes before and after
death

Marilyn Smith-Stoner, RN, PhD, CHPN

Cultural Aspects of Care

• Many of our patients experience persistent health care

disparities--identify--work with IDT.

• Cultural origins influence the way patients and health care

providers think about palliative and end of life care.

• Respect values, beliefs, and traditions related to health,

illness, family caregiver roles and decision-making

• Incorporate culturally sensitive resources and strategies into

the plan of care.
Ethical and Legal Aspects of Care

• Honor patient preferences or those made by legal

proxies or surrogate decision-makers.

• Communicate prognosis essential for informed decision

making throughout the illness.
 Nurses

• Trained in a holistic and person centered model of care

that aligns with the philosophy of palliative care.
Dame Cicely Saunders
Medical Social Worker, Trained as Nurse during
WWII, later became MD

Three Principles of EOL Care:

1. Alleviating physical suffering
through symptom
management
2. Addressing patients’ mental
and spiritual needs
3. Providing a safe and secure
environment
Florence Wald
• In 1963, Saunders was invited to Yale School of
Medicine to deliver a guest lecture on application of
her pain management research in cancer patients.

• Dean of the Yale School of Nursing, Florence Wald,

was inspired to see a doctor discussing the topic,
noting “until then I had thought nurses were the only
people troubled by how a terminal illness was
treated.”

• In 1965, Wald invited Saunders to serve as a

visiting faculty member.

• The following year, she convened the first American

conference on end-of-life care and stepped down as
Dean to commit full time to research and advocacy
in the field.
• Her efforts culminated in the founding of The
Connecticut Hospice in 1974.
Nessa Coyle, RN, ANP, PhD

• Dr. Nessa Coyle was one of the founders of palliative

care in the United States, developing one of the first
supportive care programs in 1981 at MSKCC.

• Throughout her career she championed interdisciplinary

palliative care practice and research.
Nurses

• Palliative Nursing focuses on: Care delivery to individual

patients and families; patients within specific disease
populations; and palliative care issues within healthcare
and society as a whole entity.

• Palliative Nursing embraces and reflects a holistic

philosophy of care provided to patients with serious or
life-threatening illness in diverse health settings, across
the life span.

Palliative Nursing: Scope &Standards ANA and HPNA, 2014

Primary vs. Secondary Palliative Care
! Primary palliative care refers to basic skills
and competencies required of all health
care workers. …ELNEC

! Secondary palliative care refers to specialist

clinicians and organizations that provide consultation
and specialty care

! May work together to provide best care

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hematology-oncology/palliative-medicine/
Primary Versus Specialty Palliative Care

• Primary palliative care

➢Delivered by HCPs who are not PC specialists

➢HCPs have a responsibility to acquire core skills and
knowledge in PC for basic needs; and refer to specialist
when indicated

• Specialty palliative care

➢Delivered by IDT who are specialists in PC

IOM, 2015; NCP, 2018

Palliative Nursing: Scope and Standards of
Practice, 6th edition, 2021
• Palliative nursing reflects a holistic philosophy of care
and services for patients and families who face serious
illness in a wide variety of settings and conditions. The
new Palliative Nursing: Scope and Standards of Practice
delineates the who, what, when, where, why, and how of
palliative nursing practice.

Author: Constance Dahlin, MSN, ANP-BC, ACHPN, FPCN,

FAAN

Purchase online or by calling HPNA at 412 741-1892

Competencies for the Palliative and Hospice
Advanced Practice Registered Nurse, 3rd
edition, 2021
• These competencies delineate the essential professional
expectations in advanced practice palliative nursing. The third
edition of the Competencies for the Palliative and Hospice
Advanced Practice Registered Nurse explicates the comprehensive
knowledge, skills, and expertise that are outcome-specific and
measurable…
Knowledge expectations for APRNs build from the 2020 Core
Curriculum for the Hospice and Palliative APRN and the 2018
National Consensus Project for Quality Palliative Care Clinical
Practice Guidelines.

Author: Constance Dahlin, MSN, ANP-BC, ACHPN, FPCN, FAAN

Purchase online or by calling HPNA at 412 741-1892
Education
• Integration of palliative care curriculum into US Schools
of Nursing at the Undergraduate and Graduate Levels

• Goal--Every Nurse graduate with GENERALIST

PALLIATIVE CARE SKILLS

Barriers:
• Lack of Faculty with Clinical Expertise
• Lack of Funding for Program Development
Education (Cont’d)

American Association of Colleges of Nursing

https://www.aacnnursing.org/elnec

Graduate and Doctoral Programs

NYU, University of Maryland, Medical University of South
Carolina
Education (Cont’d)

Certificate Programs

National Academies of Sciences, Engineering and Medicine in 2020

proposed the development of university-based palliative care programs
to provide in-depth, specialized preparation for competency-based
certification for mid-career nurses.

Columbia University School of Nursing for APRNs

https://www.nursing.columbia.edu/academics/academic-
programs/palliative-care-throughout-lifespan-advanced-practice-
registered-nurses-aprns

Adelphi University College of Nursing

https://www.adelphi.edu/ce-course/certificate/healthcare-palliative-care/

USF Health College of Nursing

https://health.usf.edu/nursing/graduate/programs/certificates/hospice-
and-palliative-care-certificate
Role of APRNs in Health Care

• In the changing landscape of healthcare, nursing,

particularly APRNs, have been identified as an
essential element of improving care and access under
health care reform.

• APRNs are uniquely qualified and positioned to

provide palliative services, particularly in the rural and
community settings.

Institute of Medicine, 201046

Patient Protection and Affordable Care Act, 2010
Recommendations 2019 NP Students
Primary Palliative Care Competencies for All Master’s and DNP Nursing
Students Who Will be Providing Direct Patient Care:
1. Perform a focused assessment of the physical, psychological, social, and spiritual
needs of patients and families, addressing all dimensions of quality of life in
collaboration with other interprofessional providers.
2. Manage common pain and symptoms associated with serious illness, recognizing
when to access specialty palliative care services, if available, for complex issues.
3. Demonstrate communication expertise in primary palliative care skills, in particular
sharing difficult news, discussing advance care planning and completing advance
directives, in facilitating/leading family and interprofessional team meetings, and
transitioning to hospice care when appropriate.
4. Apply evidence-based and ethical/legal principles in prescribing and de-
prescribing medications, ordering diagnostic tests and recommending treatments,
reflective of patient and family goals of care.
5. Collaborate with the seriously ill patient, family, and interprofessional healthcare
team from the time of diagnosis, to develop, manage, and coordinate a culturally-
sensitive, patient-centered, family-focused, and evidence-based plan of care across
care transitions, through bereavement, and through the appropriate use of
technology.
Nursing Organizations

• American Association of Nursing (AACN)

• American Nurses Association (ANA)
• American Association of Critical Care Nurses
(AACN)
• Hospice & Palliative Nurses Association (HPNA)
• Oncology Nursing Society (ONS)
• American Nephrology Nurse’s Association
(ANNA)
Nurses Are Leading the Way in This Care

https://www.youtube.com/watch?v=YjnJV60upvY
Juli Boit, RN, APRN

• https://tubitv.com/movies/693855/the-space-between

• https://www.amazon.com/Space-Between-Juli-
McGowan-Boit/dp/B0B8TMV273
Extending Palliative Care Across Settings
Nurses as the constant-communication with colleagues
across settings
• Acute Care
• Primary and Specialty Clinics
• Home Care
• Nursing Homes
• Homeless
• Prisons
• Hospice

Education
Primary
Specialist Level of Care
Models to Increase Access

• Telehealth

• Care Management

• Triage Model--Home Care, ER

• Nurse Generated consults in Hospitals

• ACP and GOC by RN’s

Advance Care Planning (ACP)
ACP is important for all people at risk for a significant change in
health status.The goal is to inform and prepare patients for what to
expect, discuss their treatment options, and plan for future care
needs.

Advance care planning is a process, not a single conversation.

• Small, ongoing discussions with patient and family
• More formal goals of care discussions/family meetings
RN and SW lead

Start the conversation…

• Early in the patient-provider relationship
-- Identify and document a Health Care Proxy
Family Meetings/
Goals of Care Discussions
! When?
! When there is a need to clarify goals or plan of care
! Change in health status – new diagnosis, an acute
change/exacerbation, or gradual decline, hospital admission,
transition of care
! Who is present?
! Who does the patient want there? Ask them.
! From medical team: PCP, RN, social worker, care coordinator,
specialists, hospice liaison interpreter if needed.
! Where?
! In the clinic
! At home
! In the hospital
! Allow enough time, 45-60 minutes
Family Meetings/
Goals of Care Discussions (Cont’d)
! Prepare and plan
! Understand the whole medical picture--
• Understand Trajectory of Illness
• Understand Technology
• What can be done home, inpatient
• HFNC, BIPAP
! Touch base with specialists if needed
• Further treatment,procedures--ASPIRE catheter
! What is the goal of this discussion?
Always identify your specific goals before the conversation.
! Clarify code status
! Clarify prognosis
! Decide to pursue a treatment or not
! Decide to withdraw care
! Choose best site of care
" At home vs.nursing facility
" Is it time for patient to move in with family member (or vice versa)?
" Can they live at home with increased supports?
" Home care
" Family member
" Home-based primary care vs.clinic
Ahia,C.L.,& Blais,C.M.(2014).Primary Palliative Care for the
" Hospice
General Internist:Integrating Goals of Care Discussions into
the Outpatient Setting.The Ochsner Journal,14(4),704–711.
Family Meetings/
Goals of Care Discussions (Cont’d)
! How?
! Assess patient and family’s knowledge
! “Tell me what you understand about your illness.”

! Clarify their goals and concerns

! What do they want to know?
! What are their priorities?

! Medical review – share knowledge

! Discuss benefits and burdens of treatment options
! Provide small amounts of info, leave frequent pauses
! Address prognosis if appropriate
" Fire a warning shot
" “How much time have I got?” “What will happen to me?”
" Acknowledge uncertainty
" Provide best/worst case scenarios instead of time estimates
" “I wish” statements can convey the limits of medical inter vention in an empathic manner

Ahia, C. L., & Blais, C. M. (2014). Primary Palliative Care for the General Internist: Integrating Goals of Care Discussions into the Outpatient Setting.
The Ochsner Journal, 14(4), 704–711.
Family Meetings/
Goals of Care Discussions (Cont’d)
! Respond to emotion,don’t ignore it
! Listen more than talk
! Do not be afraid of silence
! Reflect back
! Summarize and paraphrase

! Identify and resolve conflicts

! Information gaps,different treatment goals?
! Emotions,family dynamics?
! Reflect back to patient causes of conflict as you perceive them
to help find solutions
Ahia,C.L.,& Blais,C.M.(2014).Primary Palliative Care for the General Internist:Integrating Goals of Care Discussions into the
Outpatient Setting.The Ochsner Journal,14(4),704–711.
Challenges and Opportunities

Challenges Opportunities

Shortage of palliative care specialists Increase access to primary palliative care

Develop communication strategies to help

Lack of knowledge of palliative care still
patients through the decision making
exists with some providers
process

Regional, socioeconomic, racial and ethnic Leverage EHR and HIE technology to
groups influence access to palliative care facilitate appropriate referrals

Care team members may be reluctant to discuss Educate all providers and staff about
palliative care; fear patients will lose hope palliative care

Many patients are unaware of palliative Increase patient satisfaction, while

care services reducing provider burnout

International association for hospice and palliative care

Scope of Practice

• All Health Professionals should practice to the extent of their

scope of practice

• Health Systems should encourage models to allow providers

to practice to their scope of practice

• Goal--Increasing Access to Care for Patients and Families

Certification
HPNA Certification

• One way for hospice and palliative care professionals to

recognize our expertise is through certification. This
involves a process that validates and evaluates one’s
expertise in a specialty area. While licensure assures
minimal competency to practice in a field, certification
indicates mastery of a defined body of knowledge.

https://www.advancingexpertcare.org/
Certified Hospice and Palliative Care Nurse

• The Certified Hospice and Palliative Nurse (CHPN®)

examination is designed for experienced registered
nurses
Advanced Certified Hospice and Palliative
Care Nurse

• The Advanced Certified Hospice and Palliative Nurse

(ACHPN®) examination is designed for experienced
hospice and palliative advanced practice registered
nurses.
Metro NY HPNA Chapter
Leading the way to promote excellence in the provision of
hospice and palliative nursing care in New York through
leadership development, education, and the support of
research in the field

https://metronyhpna.nursingnetwork.com/
Resources

• Hospice and Palliative Care Nurses Association

https://advancingexpertcare.org
Happy Nurses’ Week
AIDS Epidemic--History of Change
Bobbie Campbell, RN--(UW/UCSF NP student--cover of
Newsweek)
Nursing--Power to Change the World

• ''As a nurse, we have the opportunity to heal the heart, mind, soul and body of our
patients, their families and ourselves. They may forget your name, but they will never
forget how you made them feel.”--Maya Angelou
(Her mother, Vivian Baxter Johnson, was a nurse)

• "Nurses dispense comfort, compassion, and caring without even a prescription.“

--Val Saintsbury

• “Just always remember that we, nurses, are unique. We have the power to promote
comfort and relieve strife. Many times we are gifted with the privilege of seeing rapid
results of our caring actions.”--Florence Nightingale
 The Role of the Nurse and
Advance Practice Nurse
in Hospice and Palliative Care