HEALTH REFORM AND PALLIATIVE CARE: 2017 …Although palliative care has its roots as an essential part of hospice care, modern palliative care has evolved to encompass the treatment

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HEALTH REFORM AND

PALLIATIVE CARE: 2017

UPDATE

Jassin M. Jouria, MD

Dr. Jassin M. Jouria is a medical doctor, professor of academic medicine, and medical author. He graduated from Ross University School of Medicine and has completed his clinical clerkship training in various teaching hospitals throughout New York, including King’s County Hospital Center and Brookdale Medical Center, among others. Dr. Jouria has passed all USMLE medical board exams, and has served as a test

prep tutor and instructor for Kaplan. He has developed several medical courses and curricula for a variety of educational institutions. Dr. Jouria has also served on multiple levels in the academic field including faculty member and Department Chair. Dr. Jouria continues to serves as a Subject Matter Expert for several continuing education organizations covering multiple basic medical sciences. He has also developed several continuing medical education courses covering various topics in clinical medicine. Recently, Dr. Jouria has been contracted by the University of Miami/Jackson Memorial Hospital’s Department of Surgery to develop an e-module training series for trauma patient management. Dr. Jouria is currently authoring an academic textbook on Human Anatomy & Physiology.

Abstract

Palliative care and hospice services that involve a whole interdisciplinary team

approach aimed at improving patient-centered and quality of life outcomes are

based on patient prognosis as well as patient and family preferences for

treatment. Such an approach helps to avoid unnecessary health costs and

improves patient and family satisfaction in services rendered. The current

literature suggests that the shifting paradigm of palliative and hospice care away

from prior medical models for end of life care have led to improved outcomes and

even prolonged life for palliative care patients. The Affordable Care Act of 2010

had an important impact on the availability of palliative care services, creating

new processes for palliative team members to improve services to patients and

families needing services.


Policy Statement

This activity has been planned and implemented in accordance with the policies

of NurseCe4Less.com and the continuing nursing education requirements of the

American Nurses Credentialing Center's Commission on Accreditation for

registered nurses. It is the policy of NurseCe4Less.com to ensure objectivity,

transparency, and best practice in clinical education for all continuing nursing

education (CNE) activities.

Continuing Education Credit Designation

This educational activity is credited for 4.5 hours. Nurses may only claim credit

commensurate with the credit awarded for completion of this course activity.

Statement of Learning Need Some health clinicians are unaware of how palliative and hospice care services

have expanded to include new multidisciplinary team roles working together to

transform end of life care for patients. Specialized palliative care team models

enhance available services for patients in multiple health locations, including at

home. Health costs will need to be better managed as multidisciplinary teams

supporting palliative patients improve approaches to treatment for patients and

their caregivers.

Course Purpose

To provide clinicians with knowledge of palliative and hospice care structures and

processes and of the national legislation endorsing its need and benefit to

patients and families.


Target Audience

Advanced Practice Registered Nurses and Registered Nurses

(Interdisciplinary Health Team Members, including Vocational Nurses and Medical

Assistants may obtain a Certificate of Completion)

Course Author & Planning Team Conflict of Interest Disclosures

Jassin M. Jouria, MD, William A. Cook, PhD, Douglas Lawrence, MA,

Susan DePasquale, MSN, FPMHNP-BC – all have no disclosures

Acknowledgement of Commercial Support

There is no commercial support for this course.

Please take time to complete a self-assessment of knowledge, on page 4, sample questions before reading the article.

Opportunity to complete a self-assessment of knowledge learned will be provided at the end of the course


1. People in the United States now live an average of ____________ after they receive a terminal diagnosis.

a. six months b. one year c. thirty months d. 24 months

2. True or False: Modern palliative care is limited to the treatment of

terminally ill patients and is focused on extending both quality and quantity of life.

a. True b. False

3. Which of the following defines or describes the role of palliative care

in treating patients?

a. Palliative care affirms life and disregards dying. b. Palliative care is applicable during the last 6 months of an illness. c. Palliative care intends neither to hasten nor postpone death. d. All of the above

4. The role of palliative nursing is to assess needs of the patient and the

patient’s family related to their

a. physical treatment. b. psychological and spiritual health. c. social needs. d. All of the above

5. Palliative intervention is distinct from specialized palliative care

because palliative intervention distinctively concerns intervention

a. when the disease is not curable. b. for cancer patients only. c. that is vital in all clinical practice for illnesses at all stages. d. that is intended to postpone death.


Introduction

Although palliative care has its roots as an essential part of hospice care, modern

palliative care has evolved to encompass the treatment of non-terminal illness

and injury in an effort to extend both quality and longevity of life. Advancements

in treatment options, along with improved access to medical professionals and

extended benefits for Medicare beneficiaries, have made the field of palliative

care an emerging and rapidly expanding health service. The Affordable Care Act

of 2010 had an important impact on the availability of these services and, while

there is still opportunity for improvement, the field of palliative care is on track to

continue its growth in upcoming years.

Palliative Care And Quality Of Life

The Affordable Care Act did not explicitly address palliative care, but it did make

some potential improvements to hospice services. There are opportunities in

payment reforms and quality improvement initiatives that will hopefully have a

positive impact on cancer patients, both terminal and those who will become

survivors. It is imperative that palliative care be addressed and not avoided in

some of the bundling payment and Accountable Care Organization (ACO) pilot

programs, no matter how operationally challenging this may be. With a rapidly

aging population that faces more chronic diseases than any previous generations,

palliative care cannot be excluded from legislation and coverage.1

Palliative care focuses on achieving the best possible quality of life for patients

and their family caregivers based on patient and family needs and goals,

independent of prognosis. Interdisciplinary palliative care teams assess and treat

symptoms, support decision-making and help match treatments to meet patient

and family goals, mobilize practical aid for patients and their family caregivers,

identify community resources to ensure a safe and secure living environment,

and promote collaborative and seamless models of care across a range of

healthcare settings (i.e., hospital, nursing home and in-home care).


In the United States, palliative care is provided both within and outside hospice

programs. Palliative care outside hospice is offered independent of the patient's

prognosis and simultaneously with life-prolonging and curative therapies for

persons living with serious, complex, and life-threatening illness. Ideally,

palliative care should be initiated concurrently with a diagnosis of a serious illness

and at the same time as curative or disease-modifying treatments, given the

near universal occurrence of patient and family distress and their need for

information and support in establishing achievable goals for the patient's medical

care. Unlike hospice, palliative care may be primary, secondary, or tertiary.

Primary palliative care should be part of what all health clinicians provide patients

(such as pain and symptom management, discussions about advance care

planning); secondary palliative care is offered when the clinician refers to

specialist-level palliative care experts for unusually complex or difficult problems;

and, tertiary palliative care includes research and teaching in addition to

specialist-level palliative care expertise.2

Palliative care is a broad term that refers to care provided at any point in the

trajectory of an illness for the purpose of alleviating physical and psycho-social-

spiritual suffering, enhancing quality of life, effectively managing symptoms, and

offering comprehensive, interdisciplinary support to the patient and family

throughout the course of illness, regardless of stage of disease. Palliative care

also helps patients and families make difficult medical decisions that enable them

to work toward their goals, especially as outcomes become more uncertain.

Palliative care ideally begins at the point of initial diagnosis of a serious,

potentially life-limiting illness and can be delivered concurrently with other

therapies that are intended to cure a disease or prolong life. If disease directed

therapy stops working, palliative care can become the main focus of care.

Although the primary focus is enhancing quality of life, palliative care also may

positively influence the course of illness and even extend life if provided early


enough. Palliative care also encompasses care provided through the later stages

of serious illness and dying. In the later stages of serious illness, palliative care

includes end of life (EOL) care, which might involve referral to a formal hospice

program as well as support of the family through the bereavement period.

Hospice refers to an aspect of palliative care devoted to alleviating symptoms and

enhancing quality of life during the last six months of life for patients who accept

that disease-directed therapy can no longer benefit them.3,4

Palliative care is a comprehensive approach to improve the quality of life for

people who are living with serious or potentially life-limiting illnesses. Palliative

care programs are made up of a multidisciplinary team of physicians, nurses,

therapists, counselors, and social workers. The entire team works in collaboration

together as well as with the patient and their family to provide the medical,

emotional, and social support needed to cope with the burdens of a serious

illness. Since no two patients are alike, palliative care treatments are tailored to

the individual based on his or her medical needs and wishes for how they want to

be treated – physically, psychologically, and spiritually.

Palliative care is a resource available for anyone with a serious or life-limiting

illness. Some types of conditions that may be appropriate to receive palliative

care include cancer, congestive heart failure (CHF), chronic obstructive

pulmonary disease (COPD), Parkinson’s disease, Alzheimer’s disease, dementia,

liver failure or end-stage kidney disease. Palliative care provides treatments for

symptoms even if the underlying disease cannot be cured. The main goals of

palliative care are to relieve the pain and suffering and discomfort associated with

an illness and to reduce patient and family members’ stress. Palliative care can

be provided in a number of healthcare settings including a patient’s home,

outpatient palliative care clinics, nursing homes, hospitals, or other specialized

clinics.5,6


As with any new specialty of medicine, hospice and palliative care is not well

understood by either the public or the medical profession. This is generally not a

comfortable topic, and the role of physicians to treat patients with EOL care

needs is continually evolving. However, good EOL care is something that

medicine must do. After all, it is often part of the problem. By curing many of the

acute ailments, medical clinicians have created chronic disease. The dying

process has become more complex, and now takes much longer. People in the

U.S. now live an average of thirty months after they receive a terminal diagnosis.

In addition to the human impact, there is also a huge economic impact. By some

estimates, the average patient will spend 75% of the healthcare dollars over an

entire lifetime during the last thirty months of life. Therefore, medical clinicians

must treat suffering as well as disease. As suggested, sometimes in treating the

disease, with modern technology, medical clinicians become the source of

suffering itself. The wise health clinician knows when to transition from cure to

palliation.7

Palliative care of EOL patients encapsulates all facets of good family medicine. If

a medical clinician performs family practice well, he or she will do palliative care

well. However, while palliative care can be relatively straightforward, problems

can arise that are beyond the skills of family medicine. Now that palliative care

specialist teams exist there is backup advice and support for most family practice

clinicians. But having specialist teams available in most locations is not a reason

to cede all palliative care to them. Specialist teams cannot meet the demands of

the number of people who are dying in any given time. It is in everyone’s interest

for family medicine clinicians to be competent and strong collaborators in this

area of patient care.8

The World Health Organization (WHO) defines palliative care as 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.

Palliative care:

• provides relief from pain and other distressing symptoms.

• affirms life and regards dying as a normal process.

• intends neither to hasten nor postpone death.

• integrates the psychological and spiritual aspects of patient care.

• offers a support system to help patients live as actively as possible until

death.

• offers a support system to help the family cope during the patient’s illness

and in their own bereavement.

• uses a team approach to address the needs of patients and their families,

including bereavement counseling, if indicated.

• will enhance quality of life, and may also positively influence the course of

illness.

• is applicable early in the course of illness, in conjunction with other

therapies that are intended to prolong life, and includes those

investigations needed to better understand and manage distressing clinical

complications.

The WHO definition of palliative care for children states that it “represents a

special, albeit closely related field to adult palliative care,” with principles related

to pediatric chronic disorders. Palliative care for children:9

• is the active total care of the child’s body, mind, and spirit, which also

involves giving support to the family.

• begins when illness is diagnosed, and continues regardless of whether a

child receives treatment directed at the disease.

• requires a broad multidisciplinary approach that includes the family and

makes use of available community resources.

• can be provided in tertiary care facilities, in community health centers, and

even in children’s homes.


The above definition reflects the 21st century view that palliative care is

applicable whatever the life-threatening illness, and is the first time that the

definition does not overtly refer to cancer. Indeed, more hospices and specialist

palliative care units accept referrals of patients with diseases other than cancer.

The objectives of palliative care are, therefore, to 1) palliate physical symptoms,

2) alleviate disease and maintain independence for as long and as comfortably as

possible, 3) alleviate isolation, anxiety and fear associated with advancing

disease, 4) provide as dignified a death as possible, and 5) support those who

are bereaved.

The palliative care movement was born out of the hospice movement and

Professor Mount, a Canadian who worked with Cicely Saunders at St.

Christopher’s Hospice in London, first coined the term. Since 1987, palliative

medicine has been recognized as a distinct medical specialty.10 All life-

threatening illnesses – be they cancer, neurological, cardiac or respiratory

disease – have implications for physical, social, psychological and spiritual health,

for both the individual and their family. The role of palliative medicine and

nursing is therefore to assess needs in each of these areas and to collaboratively

plan, implement and evaluate appropriate interventions aimed at improving the

quality of life and to enable a dignified death.

With the current growth of palliative care as a specialty, there can be some

confusion as to the definition of specialist palliative care and how it is practiced.

The National Council for Hospice and Specialist Palliative Care Services

(NCHSPCS) advocates the palliative care approach as a vital and integral part of

all clinical practice, whatever the illness or its stage. A knowledge and practice of

palliative care principles inform such an approach. Palliative intervention, on the

other hand, involves disease intervention when the disease is not curable;

sometimes known as generic palliative care. Specialist palliative care requires a

high level of professional skills from trained staff, as well as a high staff to

patient ratio. It refers to a service provided by a multi-professional team led by


clinicians with recognized specialist palliative care training. The aim is also to

support patients and their families, wherever they may be, such as in the

hospital, home or under the care of hospice.2

End-of-life caregiving presents a number of particular challenges, including the

necessity of making life and death decisions about matters such as whether to

utilize life-sustaining treatments and hospice care, intense care demands, and

witnessing pain and suffering in loved ones. Decision making at the end-of-life

can be particularly stressful for families. Family members may be asked whether

to begin tube feeding, institute antibiotic therapy for infections, or to decline

medical procedures that might extend duration of life when the quality of life is

poor.

Presence of written advance directives or even a history of verbal discussions of

EOL issues helps families cope. Family stress associated with the decision to

withdraw treatment tends to be high immediately following the death of a

decedent and, while it decreased over time, remained high half a year later.

Research shows, however, that family stress is highest in the absence of advance

directives; and, stress is lower when verbal advance directives guide the family,

and lowest when written advance directives are in place.11

Cultural diversity issues can become particularly prominent at the end-of-life as

well, and may affect decision-making. For example, African American older adults

are less likely than others to agree to withhold life-sustaining treatment even

when quality of life is poor, and cultural values among many Asian groups

discourage direct disclosure to dying patients and instead encourage decision-

making by family members.12

Palliative care utilization is consistently related to higher caregiver satisfaction

with EOL care. Families report lower anxiety while caregiving and lower

depression during bereavement when families receive palliative care. In addition,


EOL caregivers who are taught problem solving and coping skills have improved

caregiver quality of life, and reduced perceived burden.

Models of Palliative Care

There are varied models of palliative care services and teams, as previously

noted, and these are specifically described here.13

• Inpatient palliative care unit:

Is within a general (secondary or tertiary referral) hospital

• Outpatient palliative care unit:

Is detached or even distant from a hospital; often termed either a "free-

standing unit" or a "hospice"

• Community palliative care service:

Involves caring for patients at home, in nursing homes or living with

relatives

• Hospital palliative care team:

Operates with or without dedicated beds, in a secondary or tertiary referral

hospital

• Day palliative care unit:

Involves caring for patients living at home but able to be brought in for

clinical and social care on a day basis

The key features of palliative care are identified as:13

• Recognition and relief of pain and other symptoms, whatever their causes

• Recognition and relief of psychosocial suffering, including appropriate care

and support for relatives and close friends

• Recognition and relief of spiritual/existential suffering


• Sensitive communications between professional carers, patients, relatives,

and colleagues

• Respect for truth and honesty in all dealings with patients, relatives and

fellow professionals.

• Inter-professional/multidisciplinary team caring where possible

Functions of Palliative Care

Palliative care focuses on achieving the best possible quality of life for patients

and their family caregivers, based on patient and family needs and goals and


symptoms, support decision-making and help match treatments to informed

patient and family goals, mobilize practical aid for patients and their family

caregivers, identify community resources to ensure a safe and secure living

environment, and promote collaborative and seamless models of care across a

range of care settings, as identified in previous sections (i.e., hospital, home, and

nursing home).

In the U.S., palliative care is provided both within and outside hospice programs.

Palliative care outside hospice is offered independent of the patient's prognosis

and simultaneously with life-prolonging and curative therapies for persons living

with serious, complex, and life-threatening illness. Ideally, palliative care should

be initiated concurrently with a diagnosis of a serious illness and at the same

time as curative or disease-modifying treatments given the near universal

occurrence of patient and family distress and need for information and support in

establishing achievable goals for the patient's treatment, whether primary,

secondary, or tertiary palliative care. As noted previously, primary palliative care

involves pain and symptom management and discussions about advance care

planning, secondary palliative care is offered when the primary clinician refers to

specialist-level palliative care experts for unusually complex or difficult problems,


and tertiary palliative care includes research and teaching in addition to

specialist-level palliative care expertise.14

Palliative Care vs. Hospice Care

Palliative care and hospice care are very similar when it comes to the most

important issue for dying people – their care. Most people have heard of hospice

care and have a general idea of what services hospice provides. What they don’t

know or what may become confusing is that hospice provides “palliative care”

and that palliative care is both a method of administering comfort care; and,

increasingly, an administered system of palliative care is offered most prevalently

by hospitals. As an adjunct or supplement to some of the more traditional care

options, both hospice and palliative care protocols call for patients to receive a

combined approach where medications, day-to-day care, equipment,

bereavement counseling, and symptom treatment are administered through a

single program. Where palliative care programs and hospice care programs differ

greatly is in the care location, timing, payment, and eligibility for services.15

Hospice services in the U.S. are delivered in a model established by statute in

Medicare and followed by most other insurers. The Medicare Hospice Benefit is

largely restricted to patients with a prognosis of living for six months or less, if

the disease follows its natural course, who agree to forgo therapies with curative

intent. Hospice is designed to provide comprehensive, interdisciplinary, team-

based palliative care, mostly in a place the patient calls home, for dying patients

with an identifiably short prognosis. Hospice care is appropriate when patients

and their families decide to forgo curative therapies in order to focus on

maximizing comfort and quality of life, when curative treatments are no longer

beneficial, when the burdens of these treatments outweigh their benefits, or

when patients are entering the last weeks or months of life.


Hospice services are highly standardized by the Medicare Conditions of

Participation, although the intensity and nature of those services are determined

according to patient and family need and stage of illness (i.e., hospice services

are typically most intensive in the last days of life when symptoms and family

distress often peak). Hospice supports the family caregiver(s) throughout the

care process and provides bereavement services to family members after the

patient's death.16

It is important to note that the prognosis-based distinction between palliative

care (eligibility based on need, no prognostic restriction) and hospice (eligibility

based on a prognosis of living less than six months) is unique to the United

States, whereas in other countries the terms palliative care and hospice are

largely synonymous. In fact, it was the need for palliative care for those patients

not meeting the hospice eligibility requirement for a prognosis of living six

months or less (those with serious or chronic illness who are not dying soon) that

led to the recent rapid growth in hospital palliative care teams in the United

States.

The public at large knows the term ‘hospice care’ better than ‘palliative care’.

Palliative Care is the preferred term for health professionals particularly since it

became a nursing specialty in so many countries, and palliative medicine became

a medical specialty in the United Kingdom in 1987. Unfortunately, some health

professionals continue to regard hospice as care for the dying provided either by

well-intentioned volunteers or the ultra-religious. In North America, the term

hospice is often used to describe not a building or care program but a philosophy

of care.17-19

Overview Of Palliative Care And Hospice Care Programs

While palliative and hospice care share similarities in program measures to

provide caring and comfort for the sickest of patients and their families, there are


some significant differences. This section reviews and expands upon the

discussion on palliative and hospice care approaches raised earlier on, including

locations, timing or availability of services and how each program is generally

reimbursed.

Palliative Care

Palliative care is a comprehensive approach to improving the quality of life for

people who are living with serious or potentially life-limiting illnesses. Palliative

care programs are typically made up of a multidisciplinary team of physicians,

nurses, therapists, counselors, and social workers, and, as raised earlier, the

palliative care team works in collaboration with each other and with the patient

and their family to provide medical, emotional, and social support needed to cope

with the burdens of a serious illness.

Palliative care treatments are individualized to meet medical needs and desires of

each patient in terms of the patient’s physical, psychological, and spiritual needs.

Palliative care is a resource available for anyone with a serious or life-limiting

illness. Types of conditions appropriate for receive palliative care include cancer,

CHF, COPD, Parkinson’s disease, Alzheimer’s disease, dementia, liver failure or

end-stage kidney disease. Palliative care provides treatments for symptoms even

if the underlying disease cannot be cured. The main goals of palliative care are to

relieve the pain and suffering and discomfort associated with an illness and to

reduce patient and family members’ stress. Palliative care can be provided in a

number of care settings including a patient’s home, outpatient palliative care

clinics, in nursing homes, hospitals, or other specialized clinics.20,21

Location

Palliative care teams, physicians, nurses, and other professional caregivers, are

often at the facility where a patient will first receive treatment. In these settings,

the palliative care team on staff will administer or oversee most of the ongoing


comfort care patients receive. While palliative care can be administered in the

home, it is most common to receive palliative care in an institution such as a

hospital, extended care facility, or nursing home that is associated with a

palliative care team.24

Timing

There are no time restrictions to receive palliative care. Patients can receive

palliative care at any time, at any stage of illness whether they are in the

terminal stages of illness or not.

Payment

Since this service will generally be administered through the hospital or regular

medical clinician, it is likely to be covered through regular medical insurance. It is

important to note, however, that each item will be billed separately, just as they

are with regular hospital and medical/clinical visits. If a patient receives

outpatient palliative care, prescriptions will be billed separately and are only

covered as provided by regular insurance. Inpatient care however often does

cover prescription charges.2

Treatment

Since there are no time limits on when a patient can receive palliative care, a gap

is filled for patients who want and need comfort at any stage of a disease,

whether terminal or chronic. In a palliative care program, there is no expectation

that life-prolonging therapies will be avoided. It is important to note, however,

that there will be exceptions to the general precepts outlined. There are some

hospice programs that will provide life-prolonging treatments, and there are

some palliative care programs that concentrate mostly on end-of-life care.26


Hospice Care

While palliative care is available to any patient with a serious illness, hospice care

is a specialized type of palliative approach of care for patients suffering from an

incurable illness or multiple illnesses with a life expectancy of six months or less.

Hospice care is focused on improving quality of life, maintaining dignity, and

making patients as comfortable as possible during the time they have remaining.

The hospice care team is also a multidisciplinary team made up of physicians,

nurses, social workers, trained volunteers, and spiritual advisors. Hospice care

can be provided in the home or in a facility such as a hospital, nursing home, or a

dedicated hospice care facility.

Patients entering hospice care understand that their illness or disease is not

responding to medical treatment. By entering hospice, attempts to cure the

patient’s underlying illness are stopped. Stopping curative treatment does not

mean discontinuing all treatment. For example, if a patient is being treated for

high blood pressure with medication, he or she will continue receiving those

treatments in addition to the treatments they are receiving to manage the

symptoms of their terminal illness. Patients can elect to leave hospice care at any

time if a decision is reached to resume curative treatments. Patients may also

leave hospice care if their condition improves.17,22

Location

Hospice programs far outnumber palliative care programs. Generally, once

enrolled through a referral from the primary care physician, a patient’s hospice

care program, which is overseen by a team of hospice professionals, is

administered in the home. Hospice often relies upon the family caregiver, as well

as a visiting hospice nurse. While hospice can provide round-the-clock care in a

nursing home or a specially equipped hospice facility, on occasion a hospital my

involve placement (although this is not the norm).23


Timing

A patient must generally be considered to be terminal or within six months of

death to be eligible for most hospice programs or to receive hospice benefits from

insurance.

Payment

Before considering hospice, it is important to check on policy limits for payment.

While hospice can be considered an all-inclusive treatment in terms of payment

(hospice programs cover almost all expenses) insurance coverage for hospice can

vary. Some hospice programs offer subsidized care for the economically

disadvantaged, or for patients not covered under their own insurance. Many

hospice programs are covered under Medicare.25

Treatment Most hospice programs concentrate on comfort rather than aggressive disease

abatement. By electing to forego extensive life-prolonging treatment, hospice

patients can concentrate on getting the most out of the time they have left,

without some of the negative side-effects that life prolonging treatments can

have. Most hospice patients can achieve a level of comfort that allows them to

concentrate on the emotional and practical issues of dying.16

Relationship Between Hospice and Palliative Care

The advancement of the field of hospice care and the emergence and growth of

nonhospice palliative care have at the same time unified the specialty and caused

tensions. Tensions continue to exist within the field itself regarding how to define

the specialty. The issues are complex and are based in part on historical events,

barriers to needed palliative care for nonterminal patients and their families, and

shifting priorities in healthcare. The challenge is for the field to unite to achieve

the best possible outcomes. To do so will require reflection about the past and


considerations for the future of the field in the current health reform

environment.27

As the relationship between hospice and palliative care has developed,

perceptions have influenced responses in discussions between patients, families,

and colleagues, attempts to educate referral sources and administrators

regarding earlier access to needed services, and recent policymakers' responses

to language put forth in legislative bills. The unfortunate panel response to the

portion of the legislation on death that included counseling on advanced

directives, living wills, and EOL care resulted in removal of these provisions from

the final bill. Misperceptions regarding the scope of palliative care services have

persisted and remain a barrier to accessing needed services.28

Part of the difficulty with misperceptions appears to be related to confusion of

commonly used terminology. For example, what does "comfort care" really

mean? In reality, it may mean different things to different people. If a family

agrees to comfort care, have they agreed to a do-not-resuscitate status? A

descriptive phrase may be more effective at describing what some of the

commonly used terms are meant to imply. While these efforts could become

cumbersome, it is important that communities become more aware of how it is

being perceived and seek ways to improve how medical clinicians communicate

hospice and palliative care more effectively. The challenge is to be mindful of the

language and phrases to which clinicians have become accustomed.29

The ultimate goal between both programs is to have palliative care and hospice

care fully integrated into the healthcare system. As health reform unfolds, it is

critically important that hospice and palliative care clinicians are able to articulate

the field's potential to impact key reform initiatives.

Access to hospice and palliative care services vary significantly across the United

States. Smaller, for-profit, safety net, and Southern hospitals are less likely to


offer palliative services. Hospital palliative care programs also show significant

variation in team makeup and support. Studies have also revealed disparities in

access to hospice and palliative services among minority populations. Therefore,

priorities should include adherence to national guidelines and preferred practices

in order to utilize available tools to help establish quality hospice and palliative

care programs that reflect the field's standards. Much progress has been made in

identifying the core structure and processes for high-quality hospice and

palliative care and development of standards to promote their use.30

Despite nearly a doubling in palliative care programs and increases in hospice

programs and individuals served, today there is approximately one palliative

trained physician for every 1200 patients with a serious illness. The workforce

shortage is expected to increase in the coming years to meet the needs of

anticipated shifts in demographics that estimate a doubling of the population

older than 65 years and those coping with serious illness. In order to respond to

the increasing need for care, there will also need to be an adequate number of

trained, credentialed, and certified hospice and palliative care clinicians as well as

increasing primary palliative care skills for all health clinicians.31

Funding for research in hospice and palliative care is one of the highest priorities.

The National Institutes of Health (NIH) extramural funding for palliative care-

related research is less than 0.01% despite Senate Appropriations Committee

support for emphasis on palliative care research at NIH. Refining quality

measures and transparency as well as continued contribution to the growing

evidence base for the specialty is needed. Hospice and palliative medical

clinicians and leadership organizations have outlined specific research priorities,

and tools are available to utilize metrics that assist in data collection and

analysis.32


Recipients Of Palliative Care

Adult care recipients vary greatly in their caregiving needs, according to the

National Alliance for Caregiving. Most care recipients, between the ages of 18 to

49, are people limited by a long-term physical condition (54%), an emotional or

mental health problem (46%), a short-term physical condition (35%), or a

behavioral issue (31%). Caregivers of adults age 50 and older report that the

person they help needs care because of long-term physical conditions (76%), a

short-term physical condition (36%) or emotional/mental health issues (25%).33

The amount of time spent caring increases substantially as cognitive impairment

worsens. Among people 70 years of age and older, those with no dementia

receive an average of 4.6 hours per week of care, while those with mild dementia

receive 13.1 hours of care weekly. For those with severe dementia, hours of

informal care received rises to 46.1 hours per week.

Care recipients with human immunodeficiency virus/acquired immune deficiency

syndrome (HIV/AIDS) move in and out of their need for extensive care over a

long period of time. Unfortunately, the disease itself, and those experiencing it,

are often feared and mistreated by those whose care they depend upon as well

as by certain aspects of society at large. In addition, treatment, especially

medication, can be extremely costly. In one study of informal HIV/AIDS

caregivers, the number of hours committed to caregiving was a mean of 20.68

hours/week with a median of 15 hours. A high number of instrumental activities

of daily living were performed for each care receiver, and over half of the care

recipients — 56.8 percent — received assistance with at least one activity of daily

living (ADL).34,35

The burden of care on the family has been documented, leading to conflicting

emotions and fatigue for the caregiver. Overall, patients with a diagnosis other

than cancer are more likely to be cared for by relatives with much of the time


given to care being unpaid and unsupported and, therefore, may affect the well-

being of the caregivers. Indeed, research found that caregivers are often very

vulnerable. Older people want to die at home, however, families are often

unprepared for the intensity of caregiving. Of particular note is the burden on the

family in caring for those with dementia and heart failure. This is supported by

research that identified heart failure affected all aspects of the patient’s and

caregiver’s lives, reducing social interaction and leading to isolation. In addition,

only 1% of hospice inpatients’ primary diagnosis has been found to be dementia

and it is now recommended that care of patients with dementia should be

merged with elements of palliative care to provide person-centered care. Thus,

support is provided for the patient in their EOL experience and those caring for

them. Full involvement in decision-making and knowledge of disease impact and

progression should be sought.36

Knowledge and understanding of disease and prognosis are other areas that

necessitate attention for older people requiring palliative care. Those individuals

with heart failure, and their families, report uncoordinated care and lack of open

communication between professionals that hinder care management. Indeed,

lack of professional input is highlighted in current research, coupled with

confusion regarding diagnosis. However, this is a common theme in care of the

older person with patients asking for more information and to be involved in

decision-making.18

Ageism in Palliative Care

Many older people are marginalized and do not receive information about the full

range of services or options available. The term ‘a Cinderella service’ has been

coined with older people being discriminated on the grounds of age. There are

numerous examples of ageism in health care, some of which are cited by Help

the Aged. Ageism, consequently, is highlighted in the National Service framework

for the Older Person standards on person-centered care and discrimination.37


Symptom Management

Symptom management (shortness of breath, pain, depression, confusion,

constipation, malnutrition, fatigue and generalized weakness) and common

problems in old age (risk of falls and reduced mobility, confusion, skin integrity,

continence issues, visual and hearing impairments, poly pharmacy) are important

needs to be addressed and should be an integral part of any assessment. The

single assessment process documentation for the older person addresses a range

of these issues, however, this is not widely used. Patients in old age are more

likely than patients with a non-cancer diagnosis to experience pain, nausea and

vomiting, a dry mouth, loss of appetite, difficulty swallowing, and pressure

ulcers.

Those with a non-cancer diagnosis tend to experience fewer distressing

symptoms but these are longer-lasting and poorly controlled and will require help

or support for longer periods of time. Older people with dementia, however, tend

to receive suboptimal EOL care with inadequate management of symptoms,

common themes include poor or no pain control, and poorly managed behavioral

and psychological symptoms, including hallucinations, depression, agitation and

paranoia. Dysphagia, causing aspiration pneumonia, and immobility and

incontinence causing urinary tract infections, are common reasons for hospital

admissions in EOL care for people with dementia; indeed, 67% of patients with

dementia were hospitalized in their last year of life.5,38

Medication Management and Pain Control

Older people are more prone to adverse drug reactions and have poorer pain

management. Approximately a fifth of older people find pain bad enough to limit

daily activities, however, older people generally under-report pain, therefore it

goes untreated. Furthermore, those with dementia are at risk of receiving no pain

management strategies due to underestimation by healthcare staff, and clients’

communication problems. However, this underestimation of pain by healthcare


professionals occurs across the spectrum of care of the older person. Research

suggests that pain management is an area that palliative care services could

promote for the older person, adding that expertise in pain control by palliative

care teams would help resolve unrelieved pain symptoms that the older person

experiences.39

End of Life Care

An aspect that does need consideration is the client’s preference for where care is

delivered and where death occurs. Currently, older people, mostly over 65 years,

die in acute settings (59%) or long-term care facilities (19%), and only 4% die in

a hospice care setting and 16% die at home. However, 75% of older people

generally would prefer to be cared for and die at home. Therefore, it could be

suggested that EOL care needs of older people are not adequately addressed.

Sociologically, older people are more likely to live alone, experience economic

hardship, and be lonely and isolated. The psychological impact of a chronic

disease also needs attention. Relatives in receipt of specialist palliative care

services report fewer psychological symptoms and unmet needs, however, as

already discussed, the majority of older people are not cared for in this

environment.

Older people will also have a heightened awareness that death is drawing closer,

and may fear for the future. Common concerns include safety, being able to die

with dignity, not dying alone and being prepared for death. For these reasons,

holistic care of the older person should be promoted in end of life care. Other

aspects include spiritual and psychosocial support, the use of complementary

therapies, and to have physical needs addressed including pain and symptom

control. Additionally, there are aspects relating to privacy and dignity, support of

the family and caregivers, access to specialist palliative care teams and/or non-

cancer patient teams, time to say goodbye and, finally, bereavement support.40,41


Children in Palliative Care

The provision of palliative care for children involves a partnership between the

child, family, parents' employer(s), teachers, school staff, and health

professionals, including nurses, chaplains, bereavement counselors, social

workers, primary care physicians, subspecialty physicians, and consultants.

Physical, emotional, psychosocial, and spiritual/existential domains of distress

must be addressed. The child should participate to the fullest extent possible,

given his or her illness experience, developmental capacities, and level of

consciousness. Regardless of the prognosis, respect for the child requires that he

or she be given a developmentally appropriate description of the condition along

with the expected burdens and benefits of available management options, while

soliciting and listening to the child's preferences. For example, burdens may

include time away from home and friends; and, benefits may include participation

in research studies based on an altruistic motive. The discussion should focus on

what interventions, from the child's and family's perspective, will be of the most

benefit.37,42,43

Each available diagnostic or therapeutic intervention needs to be considered

within the context of the goals and expectations of the child and family. The

decision to forgo certain treatments means that only those selected interventions

are withheld or withdrawn. As the goals of therapy change with the progression

of the child's condition or disease, the desirability of some interventions may

change. Early interdisciplinary discussion and planning facilitates the smooth

integration of these changes.

The relief of pain and anxiety is an essential aspect of palliative care, and should

be addressed throughout the course of illness. In some instances, pain relief may

free a child to participate more fully in his or her final days, weeks, or months of

life. Openness to the day-to-day experience of the child and flexibility in


considering all options that may palliate distressing symptoms and conditions are

essential when developing a treatment plan.26

Minimum standards of pediatric palliative care must include a mechanism to

ensure a seamless transition between settings, including at least one consistent

caregiver, the availability of expert pediatric palliative care assistance 24 hours a

day, 365 days a year, and the availability of an interdisciplinary care team with

sufficient expertise to address the physical, psychosocial, emotional, and spiritual

needs of the child and family. At the minimum, this team will include a physician,

nurse, social worker, spiritual advisor, and child life therapist.44

Although palliative care services may not be necessary for all families, the full

range of clinical and educational resources must be made available. In addition,

comprehensive palliative care cannot be accomplished without a designated care

coordinator who can maintain continuity and ensure the care provided is

consistent with the child's and family's goals despite the intermittent care and

high staff turnover associated with tertiary care centers. The coordinator can

ensure that the plan of care is coordinated with community care professionals to

ensure a realistically achievable plan.

Tertiary centers must provide community caregivers with explicit instruction in

the care of the child, and appropriate pediatric palliative care consultation must

be available 24 hours a day. Creative ways of coordinating care between the

tertiary center and the community may involve individualized video conferencing

or other forms of electronic communication. Respite for family caregivers and

home nursing care are essential to maintain the integrity of families and the

safety and wellbeing of the ill child. Finally, bereavement support must be

available to the family, caregivers, and others affected by the death of a child, for

as long as necessary.45,46


Elements Of A Palliative Care Program

The National Quality Forum (NQF) Guidelines include thirty-eight preferred

structure and quality practices that have been used to develop quality metrics for

hospital palliative care services in the United States. Examples of preferred

practice measures are the determination and documentation of patient and family

goals for care through advanced planning using, for example, the Medical or

Physician Orders for Life-Sustaining Treatment (also known as MOLST or POLST),

or the Respecting Choices paradigm, both of which have been shown to increase

the likelihood that the care actually received is concordant with the patient's

goals.15

The essential structural elements of palliative care are the following:

• Interdisciplinary team of clinical staff (physician, nurse, social worker,

spiritual counselor, pharmacist, aide, volunteers)

• Staffing ratios determined by the nature and size of population to be served

• Staff trained, credentialed, and/or certified in palliative care

• Access and responsiveness twenty-four hours per day, seven days per

week

Types of Palliative Care

Community Palliative Care Services

Community palliative care service is one area of healthcare where there are wide

variations between types of services and programs. Some areas have well

established primary care services staffed by family physicians supported by

community nurses and even nurses registered as specialists in pediatrics,

palliative care, cardiology, renal medicine, chest medicine, diabetes, psychiatry

and stoma care. In some instances, patients must travel to clinics many miles

from their homes for any acute illness necessitating them to be taken to a distant

hospital’s Emergency Department.


If the physicians who care for patients at home seldom make house visits, or

have no training in modern palliative care, or cannot readily access and prescribe

opioids, then terminal care is usually unsatisfactory. Similarly, if family caregivers

have not been taught how to care for someone so gravely ill, or there are no

home-visiting nurses trained in palliative care, it can be difficult to ensure that

dying is peaceful and dignified.47

There are various models of community palliative care service in common use

and many modifications of each. These are reviewed below.

Advisory Service

An advisory service assists medical clinicians and community nurses who invite

the advisory team to visit and make recommendations on the care of patients at

home. The staff of the advisory service does not accept invitations to become

involved from anyone except the family medicine clinician and community nurse.

The advisory team consists of a palliative medicine physician and a community

palliative care nurse, and can usually call on the services of a social worker,

occupational therapist and other allied health professionals in the

hospice/palliative care service). In many countries the usefulness of the

occupational therapist cannot be overemphasized. The occupational therapist visit

patients at home, assess what modifications are needed, what equipment might

help the patient and teach both the patient and home caregivers how to make

best use of the patient’s failing faculties.48

The role of the occupational therapist is entirely advisory; while medication and

other prescriptions are managed by the medical clinician and supported by the

practical nursing in the community. The benefits of such a service are that 1) the

patient (and often some relatives) remains under the care of physicians and

nurses they know well but, at the same time, they are getting specialist advice,

and 2) there is no threat to the authority or autonomy of the family clinician and


community nurses who, hopefully, will be encouraged and enabled to provide

better palliative care for future patients.32

The advisory team, usually based in a palliative care unit, facilitates admission if

there need be, and coordinates consultations and investigations in other units.

There is evidence that such services enable more patients to remain at home

longer and they may enable more to die at home (if they are called in early

enough).49 If, as is recommended, the service operates within a clearly defined

geographical area with modest distances to travel, a single nurse can usually be

involved with 16-20 patients at any one time, seeing each 2-3 times/week and

often telephoning patients frequently and regularly. The average time each

patient is under care averages 2-3 months for cancer patients but double that for

cardiac, respiratory and some patients with neurological disorders.50

The “success” or “effectiveness” of such a service largely depends on:2

• Members of the primary care team knowing when they and their patient

might benefit from specialist medical or nursing advice from a community

palliative care team. This requires that they know their own limitations.

• The ability of the clinician assisted by the team to deal appropriately with

emergencies occurring in the home.

• The availability of essential opioids.

• The availability of the necessary equipment and aids.

• The ready availability of back-up beds in either a palliative care unit or a

hospital unit with which the patient is familiar.

• The extent to which relatives are supported, their needs addressed, and

trained in basic nursing care.

This is most appropriate where there are no other nurses working with patients in

their own homes.


Nursing Service

Nurses, specially trained in palliative as well as community nursing, provide all

the practical nursing a terminally ill patient needs, and demonstrate basic nursing

care to the relatives. They may visit once or many times each day, depending on

needs, and often lending equipment from the palliative care service.32

Useful as this service can be it is expensive to operate (salaries, equipment and

transport costs), and dependent on the cooperation and understanding of

sympathetic clinicians who may not know much about palliative care and the

nursing needs of their patients. Without the cooperation of a knowledgeable

clinician this can be a lonely and stressful job for the palliative care nurse.51 This

form of community service often does not offer any form of palliative care

education for nurses, which is a major weakness.

Comprehensive Community Palliative Care Service

Operating in a more limited capacity, this service provides a team of specially

trained palliative medical and nursing clinicians who provide all care for the

terminally ill patient in his home. Confirming the diagnosis, ordering whatever

further investigations are needed, prescribing medications, involving home

nurses, organizing family support and even performing such procedures as blood

transfusion, paracenteses, some chemotherapy and physiotherapy. Any

necessary equipment is loaned from the palliative care service base (which need

not have its own in-patient beds).52

The benefits are that the patient is guaranteed high quality specialist medical and

nursing care round-the-clock at home with well-supported family nearby. Such a

service is thought to enable more individuals to die at home if they wish.53 The

main disadvantages of such a program are 1) very high cost, and 2) the

possibility that medical and community nursing clinicians will either be deskilled

or not given the opportunity to practice better palliative care, and 3) because


they have not been involved in this critical time in the patient’s care, the clinician

might be less able to give appropriate bereavement care after the death.14 Such

a service can only be expected to operate successfully and amicably when its

involvement does not financially disadvantage the clinician when he/she hands

over a patient to the service, which often may be to a nursing service.54 This is

seen in many regions where palliative care is in its infancy. The reasons seem

obvious: 1) there are more nurses available than physicians, 2) nurses are

usually more willing to work in the community, 3) nursing salaries are lower than

those of physicians, and 4) nurses are well received and better understood by

many patients than physicians might be.55 However, such examples of care

should be regarded as a short-term model to be replaced as soon as possible by

one of the other models described previously. The reasons for this include that:35

• even the best palliative care nurse will encounter problems of pain and

symptom management that are beyond nursing knowledge and experience.

• professional support (emotional, social and spiritual) is essential for all in

palliative care.

• emergencies occur even when the best care is being provided and both

medical input and hospital admission may be needed.

• palliative care is, and always has been, more than excellent nursing care;

physicians have a role to play and must be encouraged to expand that role,

which may not happen with an all-nurse service.

In some instances, the Community Palliative Care Team is expected to provide

palliative care to terminally ill patients alongside their general work with patients

not in need of palliative care. This is almost impossible to do, does not help either

group of patients, and is to be discouraged. Managers eager to save money and

who know little or nothing about palliative care usually suggest such program

directions for palliative care services. It is exceedingly stressful for the team

members, does not save money and usually results in poor quality palliative

care.56


Emergencies Encountered in Community Palliative Care

Much depends on whether or not those caring for a patient at home can deal with

emergency needs of the palliative patient. If medical and community nursing

clinicians do not know how to deal with them, they need a Community Palliative

Care Team to address the following:19

• Extreme breakthrough pain

• Hypercalcemia

• Hemorrhage

• Spinal cord compression

• Sudden dyspnea

• Pathological fracture

• Acute paranoia

• Urinary retention

• Severe vomiting

• Esophageal obstruction

• Subacute Intestinal Obstruction

• Status Epilepticus

• Equipment useful (but not always essential) for community palliative care

What might be regarded as essential in one area might not even be used or

available in another.

Auditing a Community Palliative Care Service

As with every aspect of a palliative care service it is essential to audit it regularly.

The audit should be a community team responsibility with time set aside for it,

accurate records kept of all discussion at audit meetings. These might be chaired

by a senior doctor or nurse or, preferably, by different members of the team in

turn. Regular feedback, critical appraisal from GPs and community nurses with

whom the team works is essential.18


Hospital Palliative Care Unit

The hospital palliative care unit refers to a bedded unit within a hospital –

whether general or specialist, secondary or tertiary. It differs from a Hospital

Palliative Care Team (HPCT) in having beds whereas the HPCT is entirely

advisory. In many hospitals the beds are under the clinical direction of the

specialists in the HPCT who use them for patients they have been asked to see in

other parts of the hospital, patients who have complex nursing as well as major

medical problems more easily cared for in the Palliative Care Unit beds. It can, of

course, also function when there is no HPCT.57 The benefits of a HPCU include:58

• The senior medical staff are palliative medicine specialists.

• The nurses are trained in palliative care and very experienced.

• The patient does not need to be moved to a hospital or hospice unfamiliar

to them.

• Physicians and nurses can still visit the patients from other units in the

hospital.

• The patient can usually return to their home ward when the palliation has

been successful.

• All clinical records are available in the hospital.

• All diagnostic facilities are available in the hospital.

• Ideally medical students and junior physicians can follow the patient and

his or her care regimen both in the original unit and through the HPCU,

which provides a rich educational experience.

The downside of a HPCU is that:59

• It is often difficult to persuade management that more can be achieved by

having a HPCU than by just having a HPCT advising on patients in the

wards where they have been treated in the past. As a small unit with only

4-6 beds it is expensive to operate, especially when the throughput is so

fast.


• To be effective it needs the best possible nurse:patient ratio (as in all

palliative care) but it is unrealistic and unhelpful to suggest what that

should be. Senior management will seldom agree to the establishment of a

HPCU, which costs more than other comparable units in the hospital. A

useful guide is to regard/describe the HPCU as a “High Dependency Unit”

and staff accordingly. Administrators will understand that.

• Frequent visits from ‘allied health professionals’ including social workers

and pastoral care all add to the cost of running such a small unit.

• It will sometimes be asked by sceptics if having a HPCU will not de-skill

junior medical and nursing staff that would learn palliative care better in

the original unit rather than in a small specialist unit. There is some

evidence that this can happen. It places a heavy responsibility on the staff

of the HPCU to demonstrate what they do and how they do it to all who

want to visit the unit. Ideally a HPCU should be the base for a HPCT or, at

least, the senior members of the Unit can go to advice in other wards.

Questions that must be asked before planning a HPCU include those raised

below:60

• Will the small unit accept only from the other wards and units in the

hospital or also admit from the community? This question is particularly

relevant when there is no well-staffed hospice in the community or no

Community Palliative Care Service or few medical clinicians willing or able

to provide high quality palliative care in the community. This will materially

affect the number of beds needed.

• What statistics about the benefits and disadvantages of a HPCU will be

needed to persuade managers and planners that such a unit is or is not

needed? Equally skeptical will be clinicians who have yet to be convinced

that any other physicians and nurses can provide better palliative care than

they are currently doing in their Oncology or Renal Unit.


• What will happen to a patient admitted to the HPCU, now much improved,

who cannot be transferred back to his/her original ward because there are

no available free beds? Will he/she have to remain in HPCU or go to an

unfamiliar ward?

• When a patient who has been in the HPCU is discharged home to the care

of the family physician, which specialist will be responsible for follow-

up? Ideally it should be the medical specialist in the HPCU because

palliative care will be the focus of care from then on but this will need to be

negotiated with other specialists involved. Transfer to the HPCU can easily

be perceived as a subterfuge, taking a patient out of the care of another

specialist.

• How will a positive atmosphere in the palliative care unit be

maintained? Experience of HPCUs in different parts of the world have

demonstrated that, like all good hospices and palliative care units, they

have a very positive atmosphere, much humor, are often much livelier than

general wards, and popular places to work for nurses and physicians – all

much to the surprise of other staff within the hospital.

Initially senior nursing and medical management may know so little about

intensive palliative care that they will be uneasy having responsibility for the

HPCU. This may affect staff support, appraisals, and staffing levels – almost

certainly better than elsewhere in the hospital. They will predictably want to keep

costs down.

Do not resuscitate (DNR) policy

If the hospital has a clear policy, then it must be followed in the HPCU. If not,

then one must be prepared for the HPCU and presented at senior medical and


nursing staff meetings for explanation and approval. There is likely to be vigorous

opposition to what many would see as a major issue in the HPCU.61

Auditing a HPCU

The need for clinical and management audit is as great as, if not more than, in

any other palliative care service. It should be given the highest priority, and its

records kept transparent for all to see and question.62

Professional stress in a HPCU

The stress experienced by those working in a HPCU is no greater than in any

other palliative care service except in one respect – they are working in a unit

within a hospital where there may be little if any understanding of palliative care

service. They will find that what they do is often misunderstood, seen as

sentimental and unscientific, but at the same time other nurses and junior

physicians in the hospital may envy their job satisfaction in the HPCU.18

There are compelling reasons for delivering palliative care in an acute care

setting and alongside other disciplines.63

• Doing so keeps palliative care in the ‘mainstream’ which is good for both

other specialists and disciplines who can learn better end-of-life care and

symptom management; and for palliative care staff who, under the

watchful eye of their colleagues, are encouraged to use evidence based

principles and treatments and to use the expertise of their colleagues.

• Patients’ benefit by having access to consultation from other specialties,

available imaging, radiotherapy, and other useful palliative modalities.

• A culture of trust and respect develops between palliative experts and

others, fostering early, appropriate and more numerous referrals. If


designated beds are appropriate, a center of excellence and teaching can

develop.

• Any successful palliative care service should reflect the needs of the

community it serves based on a needs assessment, and fit the

requirements and resources (including financial) of the institution. The

program must be flexible and able to adapt to changing hospital priorities

and patient needs with the goal of sustaining a long-term service.

• Seeing that high quality palliative care can be provided in a busy

medical/surgical/gynecological/oncology ward is a rich educational

experience and personal challenge for junior physicians and nurses who

may have thought that it was only possible in a hospice.

The hospital, and therefore its Board and Managers, must be able to recognize an

institutional benefit for defining palliative care services as well as benefit to the

inpatient population. Those developing hospital palliative care services should

encourage local administrative authorities to accept symptomatic and end-of-life

care as a worthwhile investment in their communities as part of an overall health

plan for their region. There are three ways of delivering palliative care in the

hospital setting: 1) Consultation service – Hospital Palliative Care Team,

2) Palliative care unit (tertiary or acute), and 3) Combination of 1) and 2) above.

There is no evaluative data to recommend one delivery system over another.

Each delivery method should provide continuity of care between home, acute

care, palliative care and local hospice, and facilitate an integrated seamless

program of services for patients and families from diagnosis to death.38


Consultation Service - Hospital Palliative Care Team (HPCT)

A consultation service develops in response to the need for expert palliative care.

The personnel for a consultation team can be simply a nurse or physician alone

or combined with pharmacist, spiritual care or social worker. Those planning a

consultation service should not be discouraged by lack of numbers at the outset;

however, special interest and expertise are essential to such a program.64

Patients and families are seen in consultation only and the HPCT does not assume

responsibility for providing care, despite the frustrations inherent in the inability

to ‘control’ patient care. This is the best model if resources are limited or

institutional needs minimal, for example, a small local hospital with no oncology

service, and for a ‘start-up’ palliative service. Funding is still required and should

be arranged before any such service is started.65

Very importantly, a consultation service allows for teaching and support for

others in healthcare (physicians, nurses, therapists) and can influence their care

of other patients as a ‘ripple’ effect. Once the service is established it is usually

found that much time is spent advising on patients who are in the same unit.

Patients and families appreciate the extra time and expertise, do better and

credibility will lead to more referrals.66

The HPCT may be the contact point for Community Palliative Care Services if

these are available and one team member should lead in this. If this is the case a

HPCT can facilitate smooth transfer to hospital from home and vice versa.16

Advantages of a Consultation Team (HPCT) over a dedicated Hospital Palliative

Care Unit (HPCU) include:27

• No need to fight for space, equipment, facilities

• Minimal personnel commitment (no night call, no holiday relief unless

readily available)


• Ability to train other disciplines by hands- on end of life care and example

• Use of pre-existing diagnostic and therapeutic resources and other hospital

staff

• Use of the hospital pharmacy and its specialist pharmacists

Disadvantages of a Consultative Service (HPCT) include:27

• the inability to develop team expertise in a dedicated unit such as a

palliative care unit

• the inability to control medication administration.

• the difficulty (though not the impossibility) of doing research

• the difficulty of doing formal bedside teaching when the HPCT does not

have its “own beds”.

• the consultation services having to rely on the staff and resources of the

institution to provide such services as physiotherapy, occupational, music,

art therapy and pastoral care.

Prior to starting an HPCT there are essential preliminary tasks, which include:68

• Perform a needs assessment to evaluate the wisdom of a palliative team

• Enroll nursing, medical, social work, pastoral and other colleagues in a

working group to develop a proposal for formal presentation to the

institution

• Find a sympathetic administrator/planner who will support a proposal

• Meet with Hospital Administration and present the idea/proposal/cost

• Get advanced training in palliative care, read and surf the many good

palliative sites on the internet, if available

• Meet with colleagues in other disciplines, oncology, surgery, medicine to

introduce the concept of palliative care. Their understanding and

collaboration is essential

• Meet with pharmacy administration to enroll their support and inform them

of the principles, practice and pharmacopoeia of palliative care. It is


important to be sympathetic to their concerns re: increased workload,

overtime budget, etc.

The success of a palliative team depends on its members. They have to be

salespersons, advocates, persuaders and highly trained, skilled clinicians. Above

all else they must be consummate communicators. Other colleagues may oppose

the plan to start a HPCT because of perceived threats to their autonomous care of

their patient or their ability to care for palliative patients.69

It is possible, and sometimes necessary, to have a nurse-only service but most

undesirable. He/she will be isolated, lonely, have to persuade/convince and stand

up to opinionated medical staff not accustomed to taking advice from a nurse.

Such a service is exceedingly stressful and to be avoided, if possible.

Staffing Needs

The staffing needs of a HPCT include:57

• Physician(s): How many physicians depends on whether or not there will be

an associated PCU, a Community Palliative Care Service, a Day Palliative

Care Unit, educational and research components, and whether the

physician works in another specialty such as oncology. Advanced training in

Palliative Medicine is not optional but essential.

• Nurse(s): Registered nurses with extensive training (and preferably a

diploma/degree) in palliative care nursing.

• Social Worker: If, as should be the case, many of the social needs of the

patient are already familiar to the unit’s social worker there is less need for

a fulltime social worker on the HPCT. Access to one with palliative care

experience is however very useful.

• Therapists: They are not needed on the team if they can be accessed from

their departments in the hospital.


• Pastoral Care Worker: Again, invaluable but hopefully can be accessed in

the hospital department.

Essential Programmatic Components

Documentation and statistics gathering is easier to establish at the outset of

a program. Data is useful for research, audit and justification. Drug records and

administration charts must comply with hospital practice and legal requirements).

There should be:

• job descriptions for every member of staff – whole-time or part-time.

• referral and acceptance policies and procedures/

• explanatory leaflets on how the service will operate, who takes clinical

responsibility, and patient and family brochures.

• specimen reports and recommendations letters.

Operational data should include such information as demographics, age, disease,

symptoms, referral source, interventions, follow-up plans, and outcomes (using a

validated scale).70,71

It should be ensured that all staff of the hospital – junior and senior, nurses and

physicians, social workers and pastoral care workers and all physiotherapists,

occupational therapists, art and music therapists, clinical pharmacists and clinical

psychologists – are sent details about the service; who will benefit from it and

how it will operate. It should also be ensured that notices about the service, are

put on as many notice boards as possible, and as a minimum, one in each ward

office and physicians’ offices. The lead clinician of the new service should

announce the service at Grand Rounds, preferably. As the service develops, an

attempt should be made to arrange for one session to be devoted to an update

on the work and progress of the HPCT.


The hospital switchboard should be fully informed about the service. And, junior

medical staff, and those in charge of their continuing medical education, should

know about the service because, very often, when things go wrong it is because

they were not sure what was expected of them and whom they were meant to

contact for guidance. Importantly, the members of the HPCT:72

• must be highly experienced in hospital work, and aware of the workings of

the hospital where the HPCT will operate.

• expert in the palliative care of patients with a wide range of conditions (and

not just malignancy).

• possessed of considerable skills in diplomacy, tolerance and understanding

of the needs and problems of the clinicians who refer patients to them.

• committed to, and happy to contribute to, teaching in almost every unit.

Future development of the HPCT may include:73

• The creation of an inpatient bedded unit within the hospital backing up the

HPCT

• University affiliation

• Local national and international recognition, such as through a website

• Symposia and seminars

• Collaborative research with other PCUs, HPCTs and free-standing units

Free–standing Inpatient Unit: Palliative/Hospice

A freestanding unit is one not within a hospital, be it a general one or a specialist

one. It may be on the grounds of a hospital or totally separate from a hospital,

miles away in another part of the town or city. Whether it is called a palliative

care unit or a hospice is a decision that must be made by the Trustees

establishing it, bearing in mind that the general public (except in French-speaking

countries) still seem to prefer the term ‘hospice’ while healthcare professionals

understandably prefer palliative care unit.74


What makes any palliative care unit or hospice different from a hospital is not its

size (although most are small units with 20- 30 beds), but the holistic,

personalized, flexible program, and the attitude and focused commitment of the

staff. There must be an identified need for care in a hospice according to the

pattern of death, and the structure of the society. There must be good reasons

why the palliative care unit cannot be within a hospital or palliative care be

provided by a hospital palliative care team (HPCT).75

A well-conducted needs assessment is essential to define the target population,

major clinical problems, existing services and the networks in the community

being served. Annual mortality statistics are the starting point, such as:55

• What is the total number of people who died in that community?

• What is the main cause of death?

• Where do people die? Own home, care home, home of relatives, hospital?

• Where do they say they want to die? (Almost all will say ‘home’)

• What is the trajectory of death? (Slow decline, alternating highs and lows,

etc.)

If it is a culture where family bonds are strong and families feel that it is their

duty to care for the patients no matter whatever the cost to them, and the

patients want to die in their own beds then maybe it is better to have a second

opinion on whether a community palliative care team might be more appropriate

or a unit for short stay to address acute problems (combined with a such a

community team). If patients want to remain at home as long as possible but not

die there, a unit may be needed solely for ‘terminal care’ but it will soon be

known as a ‘death house’.76

If it is a community where there are few relatives to care for their loved ones at

home, few nursing homes and poorly developed community services then a long-

stay unit is the best solution for offering palliative care. It should be noted that


even in a hospice or palliative care unit there can develop the problem of ‘blocked

beds’, which are those occupied by patients who might be better at home or in a

nursing care home but no such places are available.14

In areas where palliative care is in the pioneering stage it might be necessary to

demonstrate to health authorities the benefits of hospice, the costs associated

with it, the impact of care on the patients and the families in order to convince

them to accept the model of care, and to integrate it into the existing health care

system. Making the right choice for the palliative model of care is critical.27 When

training others in palliative care the most difficult task is to change attitudes and

to acquire the right communication and practical skills. So practical training is a

vital part of the education project and an inpatient unit is the place where this

can best be done. It can be questioned whether or not any palliative care service

should ever be started if there are no plans to engage in education and training.53

There are some benefits of having the palliative care or hospice units within the

grounds of (but not inside) a general hospital:77

• Proximity to medical specialists such as surgeon, intensive care specialists,

etc.

• Laundry, laboratory, pharmacy, catering facilities close at hand

• Junior medical staff to share out-of-hours calls

• Proximity to diagnostic services, physiotherapy, occupational therapy,

social work, pastoral care

• Heating services and maintenance staff nearby

Other considerations include:

• What other essential things need to be considered at the planning stage?

• If it is to be a short stay hospice (most people being discharged within 14

days) what care services will they be able to access when they leave the

hospice?


• Are the community services well enough developed to take over the care of

discharged patients? Are there other services that can establish links (social

services, primary health care, other charities)?

• What arrangements can be made for investigations (radiology, laboratory)

or for receiving such further treatments (radiotherapy, surgery,

chemotherapy)?

• Will the hospice have its own pharmacy and how/where will drugs be

ordered, procured, delivered and stored (meeting all national legal

requirements)?

• Will the hospice have its own mortuary or will it be able to use the facilities

of a neighboring hospital?

• How soon after a death must a death certificate be issued? (This has

relevance to the duty hours of medical staff).

• If post mortems/autopsies are ever needed where would they be done and

how will bodies be transported there?

• What can be learned from others?

Patient Demographics

It is important to determine if the palliative care program is going to be for

adults, children or for both? If children are to be cared for in a ‘mixed unit’ there

will need to be special rooms or even an annex set aside for them and nurses and

physicians trained in pediatric palliative care. Questions to consider include:61

• Will children and adults with congenital conditions leading to dependence

on life-sustaining treatments and/or long-term care be admitted?

• Will people be admitted if they have acute, serious but not necessarily life-

threatening illnesses (such as severe trauma, leukemia or acute stroke),

where cure or reversibility is a realistic goal, but the conditions themselves

and their treatments pose significant nursing and care burdens?

• Will people be admitted with progressive chronic conditions (such as

peripheral vascular disease, low-grade malignancies, chronic renal or liver


failure, stroke with significant functional impairment, advanced heart or

lung disease, frailty, neuro-degenerative disorders and dementia).

• Will people be admitted with chronic and life-limiting injuries from accidents

or other forms of trauma?

• Will people be admitted with terminal illnesses (such as, end-stage

dementia, AIDS, terminal cancer or severe disabling stroke, cardiac, renal

or respiratory failure), from which they are unlikely to recover, and for

whom intensive palliative care is the predominant focus and goal of care for

the time remaining?

Potential patients include:78

• Patients expected to die within days

• Long stay patients

• Short stay patients admitted, for example, for 10-14 days to control severe

symptoms or psychosocial problems. (In most units in the West the

average length of stay is 11-14 days).

• Respite care to offer families a break from exhausting care.

When offering respite care, its important to establish whether such stays need to

be booked in advance or be offered as the need arises. The need for respite care

is greatest when the unit is associated with a community palliative care service.

One problem is that many such patients are admitted for “respite” too late and

do not return home but remain and die in the unit.

It is generally accepted that in a population of 1,000,000 the number who will

need a palliative care bed is as highlighted below.40

• With malignant disease: 400-700 per 1,000,000 population

• With non-malignant disease: 200-700 per 1,000,000 population

• Deaths of those with neurological diseases: 17 per 100,000 population

• Deaths of those with psychogeriatric disease: 4 per 100,000 population


• Deaths of those with chronic cardiac/respiratory disease: 500 per 100,000

population

Typical statistics for palliative care are listed below.79

• Average length of stay 11-14 days (lowest when there is a community

palliative care service or CPCS)

• Average age 65

• Deaths at home 40-50% (not necessarily higher if there is a CPCS)

• Is the hospice going to have an incorporated outpatient/ambulatory

clinic or maybe a day hospice/unit or other palliative care services? If so

this will affect the number and type of rooms, toilets, ambulance and car

access, wheelchair access, the need for activity rooms, treatment rooms

and equipment.

Staffing the Unit

Nursing staff:

A good rule is to aim for a nurse/patient ratio of not less than one nurse to 1.5

patients throughout 24 hours. At least 50% of nurses on duty at any one time

should be registered (trained) nurses, and the others nursing auxiliaries who

have undergone basic nurse training plus in palliative care nursing training. Most

experienced units do not use student nurses rotating through different

specialties, able to spend only a few weeks in the palliative care unit, but have a

permanent, designated palliative care staff.80

Medical staff:81

How many physicians needed will depend on:

• The number of beds, and whether it is a short-stay or a long-stay unit.


• Whether the physician will also be involved in any community palliative

care service.

• Whether the physician will be responsible for advising in a Day Hospice

• Whether the physician will also work as part of a hospital palliative care

team

• The amount of education, research and management expected of the

physician.

• Whether he/she will be supervising junior physicians.

• Whether he/she will have administrative responsibility.

• Whether he/she has time for research written into his/her contract.

A rule of thumb is that one full-time physician can attend to 10-15 beds, provide

the medical input into a community palliative care service caring for 40 patients

at any one time, be available to advise in a Day Unit, and spend up to 3 hours

per week on education. Junior physicians who rotate through the unit for

experience should not be regarded as service physicians because they require so

much of the senior physician's time in supervising and teaching. A critical issue is

"out-of-hours" coverage; for the sake of patients and nurses, such coverage

should not be provided from a (senior or junior) physician that lacks experience

in palliative or hospice care.82

Social Work Staff:

It is essential that every comprehensive palliative care service (which may

include inpatient unit, community care, day care and even hospital palliative care

team) has an experienced social worker on staff. It is, however, recognized that

in many areas there are few, if any, social workers and even fewer with training

or experience in palliative care. Their work will usually focus as much on staff as

on patients and relatives, and be concerned with coping strategies, loss and

personality problems.83


The "simpler " tasks of a social worker, such as facilitating discharge, arranging

help in the home, obtaining financial assistance, making special holiday

arrangements, etc., can usually be dealt with by someone appropriately trained,

though not necessarily accredited or paid as much as a social worker.84

Allied Professionals:

Any inpatient unit with more than 15 beds, regardless of other services it

provides, will need a physiotherapist on staff. Units with 30+ beds need a full-

time physiotherapist. Good palliative care involves rehabilitation, not simply the

aim of getting patients back to their homes and loved ones. For this, a

physiotherapist and, if possible, an occupational therapist are essential. Very

useful but not strictly essential are clinical pharmacists, clinical psychologists,

dentists and podiatrists. Often they offer their voluntary services.69

Pastoral Care Staff:

It is important that a hospice or palliative care service and its team pay due and

equal attention to the spiritual needs of the patients as to their physical and

psychosocial needs. This generally means that a priest, clergyman or someone

trained in pastoral care should be on staff, or be readily available. Larger units

(>25 beds) need a full-time pastoral care worker, if possible. Others may use

local clergy. It must be remembered that this clergy or chaplain will also support

staff and volunteers, contribute to and organize educational courses, and conduct

many funerals. In multi-faith societies, it is necessary to have access to Rabbis,

Imams, Hindu teachers, and clergy belonging to other faith traditions.76

Administration and Management:

Administration and management is composed of a planning group involving

mature people familiar with (though not necessarily expert in) palliative or

hospice care, able to contribute experience and skills in management, building,

law, health care administration, medicine, nursing and spiritual care. Generally, it


involves a professional advisory committee, non-executive but immensely

important and influential group, reporting directly to the organization’s Trustees.

Much of the efficiency and credibility of the palliative or hospice care units will

flow from this committee and its influence and guidance. Its members, usually

10-12 in number, should be representative of specialist palliative or hospice care

(both medical and nursing), family medicine, oncology, hospital and community

nursing, social work, education and research, as well as clergy and allied

professionals. As with any committee, much depends on the authority of the

chairperson who must be able to meet regularly with the senior care staff.

Administrative and management staff responsibility is to advise on all aspects of

the professional work of the palliative or hospice care units, including staffing

levels, recruitment, documentation, protocols, audit, curricula, relations with

other clinical services, research and possibly ethics, etc.85

Appointment of Senior Staff

Provided there is a Professional Advisory Committee and the Trustees, the order

in which senior staff are appointed hardly matters, though logically the senior

administrator or chief executive should be given priority, followed by the senior

medical and nursing staff, each of whom will then share in the recruitment and

appointment of their own staff members. It cannot be over-emphasized that even

the smallest palliative care or hospice unit must be run on business-like terms,

with well-defined lines of accountability and communication, written procedures

and protocols, system reviews in each department, clinical and organizational

audit systems which operate from Day 1, and a defined public relations policy.86

Experience suggests that raising capital for palliative or hospice care is relatively

easy when people already know what it is and how it can help them. The bigger

challenge is raising sufficient revenue to maintain the service, particularly if there

are inpatient beds. The most expensive item is salaries, usually accounting for

80-85% of costs. Though palliative care or hospice beds are certainly slightly


more economical than beds in acute or even long-stay hospitals, they are still

very expensive. A good rule, when planning an inpatient service is to budget for

revenue requirements only 10% less than current costs in local acute units.87

Disadvantages of a freestanding unit include:

• Cost, usually higher than planners expect

• Only able to accept a limited number of patients, a small proportion of the

many who need its services

• A management structure that might be unlike those of other local health

care units

• Families might feel excluded because the patient is taken out of their care

• It is still “an institution” and as such, no matter how hard everyone tries, it

is never “home “

• Its practice and principles will not be seen and learned by the many

physicians and nurses who work in general hospitals where 90% of the

terminally ill receive care

Palliative Day Care or Hospice Unit: Benefits

This is a model of care designed for patients being cared for at home (or in the

home of a relative or in a Nursing Home/Rest Home). It enables them to receive

attention to all aspects of their illness and suffering, physiotherapy and

occupational/music/art therapy, and to meet with others in similar situations

within a friendly social, non-clinical environment.88

The patient is enabled to remain at home as long as possible (which is what most

patients report desiring). By attending the Day Unit, patients and caring relatives

will benefit from:71

• Seeing the palliative care nurse (and the medical specialist if the nurse

deems that necessary), be encouraged to report every aspect of their

suffering, ask all the questions they want and get all the advice they need.


When needed, they can have wound dressings done, constipation

addressed, and bladder lavage and catheter change.

• Seeing palliative care- trained physiotherapists, occupational/art/music

therapists to help them to live life to the fullest within the limits set by their

illness. (Experience shows that they take up new hobbies and interests,

become more positive in outlook, and consequently experience fewer

symptoms).

• A few hours free to do whatever they want to do; family caregivers may

have time to rest or be on their own with some of the palliative care team

to ask questions, get advice and, above all else, feel supported.

It is very possible but not proven that patients attending a Day Unit are able to

remain at home longer than would be the case if they had not attended one.

There is much anecdotal evidence that relatives feel it is less stressful caring for

a patient at home if the patient can attend a Day Unit perhaps once or twice a

week. Again there is anecdotal evidence that patients feel more positive, more

able to cope, and less depressed when they attend a Day Unit.7

Operations

In most programs, patients are brought from their homes in a car or "minibus"

(often driven by a volunteer) to the Day Unit in the morning, spend the majority

of the day there and return home later in the afternoon. On arrival they are

welcomed by a staff member or volunteer. They join the others attending for

community time and refreshments, and then spend time on creative activities of

their choice under the guidance of the therapists. They will also spend some time

with the nurse or physician. Lunch is leisurely and is tailored to their needs and

energy. The time after lunch is spent in comfortable chairs, resting, or being

entertained by special guests or professional caregivers and treatment providers.


Accommodations

Accommodations include:89

• A hall/room about the size of a large lounge or tennis court with a ramp

and doors wide enough for wheel chair entry.

• Work tables that might also be used for meals and sufficient chairs for

sitting at the table and easy chairs for lounging in.

• A small room large enough to accommodate an examination couch, small

table, 2 chairs and (desirably) a hand basin.

• A small room with a table and 2 chairs, filing cabinet, (a computer if

possible), and notice board of some sort for use as an office/interview

room.

• A toilet, which permits wheelchair entry. Ideally the toilet and hand basin

should be designed for disabled users.

If funds and space permit it is useful to have two rooms rather than one large

room – one for activities and crafts, the other for socializing. Equipment takes up

much space so adequate storage space must be provided either in the unit or

nearby. Not essential but very useful is a small cloakroom where patients outdoor

clothes can be left, and another small room where staff and volunteers can

withdraw.90

Location

The Unit may be part of a hospital/hospice/palliative care unit or be on the

grounds of a healthcare facility. It may be run in a church or community hall not

otherwise being used during the day. Essential is that there must be easy vehicle

access and that it must be convenient for access for the population being served.

Long journeys even in comfortable cars can be tiring for these patients.89


Staffing

The key member of staff is the Day Unit Coordinator (or whatever title is

selected). The professional background of the day unit coordinator is not as

important as their skills, such as their sensitivity and understanding of the

principles of palliative care. Most have backgrounds in nursing or social work or

occupational therapy but in the new role may not use the hands-on skills of those

professionals as much as their "person skills". A useful ratio is 1 staff member

and/or volunteers to every 2 patients (depending on levels of dependency).

The nurse and each of the therapists may either work exclusively in the Day Unit

or visit it from the wards of the hospice/palliative care unit/hospital if nearby

(again depending on how many patients there are, what their needs are, and how

much time needs to be spent with each patient).22

The volunteers need very careful selection and comprehensive training. They are

directly accountable to, and report to, the Coordinator but are ultimately

accountable to the Volunteer Services Manager of the palliative care service or

hospice and hospital. They act as friends, assisting with handling frail patients,

serving meals and assisting with activities under the direction of the Coordinator

or therapist.

Activities

It is important to ensure that activities are what the patient wants to do and not

merely diversional – helping the patient forget his/her illness and fate. Everything

done in a Day Unit is geared to enhance quality of life, restoring patient dignity

and providing patients with a sense of being valued and useful. Examples of

activities include:91

• Clay modelling

• Painting Pottery

• Indoor gardening


• Carpentry

• Stamp collecting/sorting

• Computer programming

• Rug making

• Crossword solving

• Origami

• Knitting

• Dress making

• Enamel jewelry

• Making greeting cards

• Computer games

Volunteers

Usually the volunteers working in a Day Unit have already worked in other clinical

areas of the hospital or palliative care service where their sensitivity and calm

presence had been noted. After being selected for the Day Unit, volunteers

generally undergo further orientation. They are taught the aims of the Unit, the

conditions of the patients who will attend the spectrum of suffering they may

encounter and how the palliative care nurses and therapists will respond. Above

all else they are taught to be friends and companions to the patients rather than

caregivers, and encouraged to help create the most relaxed, informal atmosphere

possible as well as one that feels safe to patients.92

For most volunteers their time in the Day Unit will be the closest and most

prolonged they will ever have had with people in the final months of life, many of

them of similar age to them or their children. At the same time as they see

patients psychologically thriving in the center, they will also notice that they are

getting frailer and near to death. Over the time volunteers work in the Day Unit

they will make many friends all of whom will eventually die, some much sooner


than the volunteers had expected. Understanding the support as well as sensitive

supervision needed for volunteers is essential.4

Patient Enrollment and Attendance

Patients should be accepted on the understanding that their condition and how

much they have benefited and/or might continue to benefit from attending, is

reviewed every 12 weeks. They may then have a spell of not attending and then

return after a few months if it is thought they might benefit. If this is not done

the Unit may find itself with a patient whose condition is not terminal attending

for years. This helps neither the patient nor the other patients. Care has to be

taken with particularly young patients who may be discouraged if they attend on

days when everyone else is elderly, sharing no common interests with them.

Seeing such a young terminally ill person can also be extremely distressing to

older patients.23

Some units find it preferable to have separate days for male and female patients

with morning activities and afternoon visitors tailored to each group.

It does not appear to matter if people with different illnesses are put together –

those with cancer mixing easily with those suffering cardiac or neurological

problems. Invariably patients discuss with each other what they suffer from, what

care they have had and how long they expect to live. In spite of this reality, there

is usually an exceedingly happy, positive atmosphere where everyone wants to

help another. It follows, however, that there are times of sorrow when one

member dies at home or has to be admitted to an inpatient unit. If that unit is

adjacent to the Day Unit then they can, and usually do, come back to enjoy the

Day Unit with old friends. This is one of the great advantages of any Day Unit

being part of a hospital/palliative care complex rather than free-standing.93


Audit of a Day Care Unit

It is essential to audit a Day Car Unit, for all members of its staff/team to take

part and for its records to be accurate and open to scrutiny. Topics that might

usefully be audited include:

• Conditions of patients

• Reasons for referral

• Length of time attending unit

• Transport of patients

• Views of medical clinicians/family physicians

• Value of different activities

• Transport service

• Work of volunteers

• Views of relatives

• Time spent with relatives

• Quality of life measures

• Occupational activities and usefulness

• Reception of patients on arrival

• The work of nursing

• Finances

• Food preferences

• Bowel needs/protocol

• Views of community nurses

• Record keeping

• Dietary issues

The Assessment Of Palliative Care Needs

To assess the palliative care needs of a local population, three strategies can be

adopted: the epidemiological, the comparative and the corporate.


Epidemiological Approach

The epidemiological approach makes use of local cause-specific mortality in

diseases that are likely to benefit from palliative care services, and then relates

this to the type and frequency of symptoms experienced by patients suffering

from these diseases. It reviews the effectiveness and cost effectiveness of care

using local, national, and international evidence. Lastly, it compares these with

the patterns of locally available specialist and generic services to determine how

well this need is being met.

Comparative Approaches

The comparative needs assessment approach examines levels of service

utilization rather than disease categories. A common approach is to compare and

contrast the local levels of activity against national averages so that areas of

specialist practice can be examined for obvious disparities in equity of provision.

But there are a number of difficulties in this approach. The main limitation is that

it does not assess unmet need, which must then be evaluated by other methods.

Comparing a locality with other regions is problematic, not least because

populations can vary considerably in terms of demographic make-up, ethnicity

and social deprivation.

Corporate Approaches

The corporate needs assessment approach involves a structured collection of the

knowledge and views of local informants on healthcare services and unmet

needs. Valuable information is often available from a wide range of parties; for

example, managers who work in primary care settings, physicians and other

healthcare professionals, and importantly patients and their families.

The corporate approach is essential if policies to meet unmet needs are to be

sensitive to local circumstances. There are, nevertheless, caveats in adopting this


approach. Those undertaking the exercise must be aware of bias and the politics

of vested interests. Also, the assessment may produce a multitude of needs,

although criteria can be used to prioritize these needs (i.e., the importance of a

problem in terms of frequency or severity, the evidence of effectiveness of

interventions, or the feasibility for change). Needs assessments that do not

include sufficient attention to policy implementation will become little more than

academic or public relations exercises.55

The Palliative Care Team

The delivery of palliative care involves many dimensions of care. Physical

symptoms need to be addressed through expert assessment, diagnosis and

pharmacological and non-pharmacological strategies. Likewise, psychosocial

distress is relieved by similar careful assessment and delivery of care to the

patient and their caregivers; care which may include financial assistance,

practical aids, counseling, targeted care of children and ongoing emotional

support. Such wide-ranging care is ideally delivered by a multidisciplinary team.83

The multidisciplinary team may be a dedicated palliative care team that consists

of specialist palliative care medical and nursing staff, social worker,

physiotherapist, pastoral care, volunteers, and others. It may also be a virtual

team, which forms around the patient and caregiver with palliative care needs. A

virtual team may consist of the medical clinician, primary specialist, palliative

care specialist (physician or nurse), nurse or medical clinician, community nurse,

local pharmacist, social worker, school support staff, and perhaps a spiritual care

person with whom the patient has a long-standing relationship. Communication is

the key to ensuring that such a virtual team is able to function and support the

patient and each of the team members, who have been brought together because

of the shared responsibility of caring for that patient. Such virtual teams are also

often created as an extension of core palliative care teams, as dying, like living,

is a community event which touches many lives.94


Coordination of such teamwork is critical. Strategies to assist professionals share

information and better coordinate care including the teleconference and

multidisciplinary team meeting. At such meetings, pertinent patient details are

shared and goals of care are refined and documented. Ongoing review and

sharing of information between the many partners in care may occur through

faxes, emails, phone contacts, shared clinics, and family meetings.85

To be a strong team, palliative care team members need to have a common ideal

and understanding of the team role and the contribution each team member

makes to achieve successful team outcomes. Time spent exploring the values

underpinning both the individual motivations and the collective identity of the

team is important. Each team member contributes specific skills, experiences,

attitudes, and values to the whole. The team is seen to represent and provide a

unified model of care. Team activities such as debriefing, service planning,

academic development and socializing together assist the development of a

strong team, which is able to sustain and support its members.76

It is neither possible nor advisable for palliative care teams to provide direct care

for all patients with palliative care needs. Therefore, models exist to assist teams

to direct their efforts to those patients most in need of specialist care and to

provide leadership and education to the individuals and teams with which they

come in contact. Within every such clinical encounter there exists an opportunity

to model the palliative care approach and to act as change agents. The term

‘change agent’ is used in the implementation of quality improvement and refers

to clinicians acting as catalysts for change through modeling of the new way of

doing things and providing leadership to others. In this way, other clinicians

observe and incorporate that practice into their care. For consultative palliative

care teams, working alongside other clinicians, there is an educational

opportunity in every consultation. Referring teams increase their knowledge and

expertise in providing palliation through case-by-case clinical knowledge sharing


and observing the impact of palliative interventions, whether they are

pharmacological or effective communication or the power of teamwork.86

In addition to the clinical care provided, each team member participates in

quality improvement and educational activities. These may include the

implementation of end-of-life care pathways to improve care of the dying,

introducing pain as the fifth vital sign to improve pain assessment and

documentation, development of therapeutic protocols and practice guidelines,

clinical updates for the ward staff, education of undergraduate and postgraduate

students, and awareness raising activities for staff, patients and caregivers such

as World Hospice and Palliative Care day promotional activities.95

A fundamental practice focus for hospice and palliative care is the plan of care,

which is developed with the patient and family as the unit of care and members

of the interprofessional team. At very minimum, the interprofessional team

includes the physician, nurse, social worker, and clergy.96 The key person in the

team is the patient (and also the patient’s family). To exclude the patients from

the team is to render them passive recipients of their care rather than partners in

decision-making. Health care in modern society has often been based on

paternalism – ‘the professional knows best’ – rather than being about partnership

and patient autonomy. Palliative care seeks to redress this balance.88

It could be argued that the primary goal of teamwork is to offer the best possible

quality of life for the patient. Effective teamwork depends on good

communication, effective leadership and coordination. Individual team members

require to know their own limitations and to share in decision-making and formal

review. Several factors, therefore, contribute to successful team management. In

addition to an individual's role within the team, there is shared decision-making,

effective communication and common goals. Certain role functions and

dysfunction also need to be taken into account. These include role expectations,

ambiguity, conflict and overload.18


Without a doubt the members of the team in palliative care face particular

stresses and strains as a result of working with dying patients and their families.

It is therefore of paramount importance to pay attention to staff support and

continuing education.

Care responsibilities extend beyond the death of the patient and offers

bereavement care to families for a minimum of one year. Relief of suffering and

quality of life (QOL) for individuals and families are enhanced by:97

• Providing effective pain and symptom management

• Addressing psychosocial and spiritual needs of patient and family

• Incorporating cultural values and attitudes in developing a plan of care

• Creating a healing environment to promote a peaceful death

• Supporting those who are experiencing loss, grief, and bereavement

• Promoting ethical and legal decision making

• Advocating for personal wishes and preferences

• Utilizing therapeutic communication skills in all interactions

• Facilitating collaborative practice

• Ensuring access to care and community resources through influencing and

developing health and social policy

• Contributing to improved quality and cost-effective services

• Creating opportunities and implementing initiatives for palliative care

education for patients, families, colleagues, and community

• Participating in the generation testing and evaluation of palliative care

knowledge and practice

Reliance upon the interprofessional team as a key factor for successful outcomes

in palliative care requires an understanding of the distinction between

interprofessional and multidisciplinary practice. In the traditional multidisciplinary

team, the physician primarily directs care of the patient, and the family needs

may or may not be considered. Multiple disciplines of the healthcare team may


be involved in the individual assessments and in the delivery of care, although

efforts by these team members are often uncoordinated and independent. The

primary mode of communication among disciplines is the medical chart. The

result is often incomplete communication between professions, lack of

accountability, and tendency for each discipline to develop its own patient care

goals.

Family needs are often unidentified and most often are not incorporated into the

overall plan of care. In contrast, in an interprofessional model, communication

and decision-making among team members is collaborative, with leadership

shared and based upon primary patient and family needs and goals. The identity

of the interprofessional team supersedes personal identities and agendas, and

the concept of the whole is greater than the sum of its parts is valued and

respected. The interprofessional model facilitates team members to (a) directly

interact with the patient and family, (b) share information among team

members, (c) provide consultation to one another, and (d) work interdependently

together to achieve the goals identified by the patient and family.29,52,66,98

A dynamic and outcome-oriented interprofessional team requires collaboration,

leadership, coordinated decision-making, and conflict resolution. Collaboration is

defined as the ability to work with others, especially on intellectual endeavors. It

is the process of collaboration that empowers team members to act as decision-

makers within the group. For example, if a question on nausea and vomiting

arises, various members of the team may provide observations and opinions in

an effort to maximize the relief of all components of nausea and vomiting. Using

a true collaborative process, the ultimate decision-maker regarding this aspect of

care would not come to a conclusion solely benefiting one member or one

member’s own perspective, but rather would make a decision reflecting the

team’s total input. Through collaboration, effective patient- and family-driven

quality outcomes are achieved.94,99,100


Palliative care differs from the traditional medical model in which the physician is

the sole leader of the multidisciplinary team. In the palliative care model,

leadership is filled by the member of the interprofessional team who is best

educated and qualified to address and focus upon specific patient or family goals.

In addition to achieving patient and family outcomes, leadership is essential to

facilitate and optimize the professional potential of each team member’s

contribution. Also, in the traditional multidisciplinary team, the physician, as

team leader, is the primary decision-maker for the care team. In contrast, in a

true interprofessional team process, coordinated decision-making among team

members is necessary to achieve quality patient and family outcomes. In order to

sort out which member or members of the team would be the most appropriate

in contributing to the decision-making process, the following questions, should be

considered: “Who has the information necessary to make the decision?” “Who

needs to be consulted before the decision is made?” “Who needs to be informed

of a decision after it is made?” Certain levels of decision-making may be made

through individual members of the team (i.e., titrating a pain medication based

on patient needs), whereas other levels will require input from the entire team as

a whole (i.e., developing a care plan). Poor, fragmented decision-making results

from failure to include appropriate team members in the decision-making

process.80,101-103

Because of the interdependency among interprofessional team members,

professional conflict will inevitably arise, which may be beneficial and stimulating

to an interprofessional team. Respect and trust in each team member’s skills,

knowledge, expertise, and motivation are imperative. Lack of respectful conflict

will result in uniformity of the group, which may stifle the creativity and the

professional advancement and development of team members. Diverse ideas and

opinions are often the impetus for innovative solutions for patient care problems,

and in the process may deepen the professional dialogue within the team.

However, conflict becomes destructive when it is personalized or viewed as a

threat to a member’s role. Thus, the art in managing conflict is not to avoid it,


but to manage it effectively so that team members, patients, and families can

receive its full benefits.31,84,104

Palliative care embraces a number of different frameworks and approaches to

meet the needs of the whole person. As soon as the many dimensions of dying

are aired, the aim of care focuses more sharply on providing maximum comfort

and support, and engaging in broad endeavors to do so. Moreover, the origins of

palliative care lie in the areas of religious care and nursing, rather than medicine,

and palliative care draws heavily on a broad spectrum of disciplines, knowledge,

skill, experience and creative thought.24

As mentioned previously, palliative care teams may include nurses, physicians,

and social workers; as well as volunteers, chaplains, allied health professionals

and a multitude of varied therapists. Medical science currently advances the

interplay of the physical, functional, emotional, psychological, social and spiritual

aspects of wellbeing and more lately has supported the development of

multidisciplinary approaches.10 The features of multidisciplinary teams are well

understood in current clinical practice. Professional identities are clearly defined

and team membership is secondary. Leadership is often hierarchical. Many

practitioners in healthcare teams work as wedges of a pie, each with their own

clearly defined place in the overall care of the patient, contributing their expertise

in relative isolation from one another. In many settings, this may be the practical

limit of the teamwork concept.30

Interdisciplinary function is generally the aim of specialist palliative care teams,

with members contributing from their particular expertise. The team shares

information and works interdependently. Leadership is task-dependent, with

tasks defined by the individual patient’s situation. The analogy of the hand is

appropriate; individual digits of differing ability, function and dexterity work

together to achieve more than the sum of the individual components.105


It needs to be acknowledged that team structures vary widely within palliative

care. The sole practitioner is one extreme — hardly a ‘team’, but nonetheless

providing a very valuable service. This situation may exist because of

geographical constraints, or patients may choose to align themselves with a sole

practitioner, of whatever available discipline, with (hopefully) a silent, unseen

team in support.106 The other extreme of team composition is the

transdisciplinary approach — a team in which role release occurs. Roles and

responsibilities are shared and there are few seams between the members’

functions. This means that a team member’s particular expertise is not

transparent to the patient or the consumer. This is not a model typically used in

healthcare.88

In the business world, organization theory has developed the concept of cross-

functional teams, assembled to create sets of skills for a particular purpose. They

are comprised of experts ready to move quickly and flexibly together; to adapt to

changing needs with a diversity of team players — in essence, an interdisciplinary

team. The synergy that is created by these teams is beneficial to the patient, the

family and the team members. Interdisciplinary teamwork requires the

“interaction of the team to produce the final product”. It should be able to

achieve more than the sum of the individuals involved. Successful teams may

possess combinations of skills that no single individual demonstrates alone.69,98

When there is some role overlap, resources are actually multiplied and patients

can have access to a multiskilled practitioner who has learned from and been

extended by different professions and yet may suite individual patients in terms

of their primary need or ‘personality fit’. Family members may need to relate to

different members in the team in order to have their own needs met without a

sense of compromising the patient’s therapeutic relationship with the original

team member.16


Cross-functional or interdisciplinary teams provide a unique forum for creative

problem solving, especially if every member’s contribution is genuinely solicited

and respected. Different frameworks — new ways of seeing — may be the keys

to resolving not only clinical but also ethical dilemmas. These dilemmas abound

in palliative care.85

Cross-functional teams are flexible. People learn how to cover each other, not

perhaps in the most specialized areas, but in terms of general patient support.

There is a sense of team responsibility for the wellbeing of the patient. Members

cover each other’s weaknesses and maximize each other’s strengths. Cross-

functional teams are able to make speedier responses to patient needs when a

crisis arises. Careful documentation of explicit details and skilled communication

of the nuances of need and care contribute to excellent care, even when

decisions need to be made quickly and at inconvenient times.107

Practitioners of diverse disciplines may all play fundamental roles in complex

assessment. Ideally, this is much broader than a traditional medico-nursing

assessment. If there is a process for and expectation of collaboration, an

understanding of how each discipline might approach treatment will avoid

conflicting advice, timelines, and goals. Given the different ways health

professionals are remunerated for their work, especially in private practice, the

time required to achieve these synergies may go unrewarded.69

This interdisciplinary team model works extremely well in contexts such as

mental health, rehabilitation, and aged care, but less well in acute care, where

timeframes are short, cost considerations are paramount, and lines of liability

determine process. In contrast, referral processes between professionals who do

not truly work together can be so slow, clumsy and burdensome that it may

become easier to choose not to refer.108


Best models of service provision and leadership for palliative care have not yet

been identified. In most services, teams have evolved as funding and opportunity

have allowed. Often leadership is provided by the professional who has been

present the longest. Sometimes leadership is provided by the sponsoring agency,

not necessarily with a palliative care focus. A recent study in the United Kingdom

identified a wide variation in services across several dimensions, including

location, management patterns and resource use. The study highlighted problems

in how teamwork is conceptualized and delivered. Some writers suggest that

membership of the team extends beyond the clinical role to encompass

administrative, operational and financial management staff. It would seem that in

the palliative care literature the need for teamwork is a given, but what an

optimum palliative care team looks like depends on many contextual factors.105

Team conflict issues, role ambiguity, role overload, interpersonal conflict,

inadequate communication and leadership dilemmas are well recognized

challenges to creating good teamwork in the delivery of palliative care. Team

conflict and difficulties can develop because of internal or external stresses,

individual issues or a corporate problem. Communication, both formal and

informal, within a team is a major factor. A longstanding team may become self-

sufficient, or resistant to new ideas. Underground communication (i.e., rumor,

gossip) may destroy the trust and openness required to function as a team.

Conflict between two team members and problems such as a dominant member,

an isolated member, team factions and team secrets are all potent means of

disrupting team equilibrium and function. Poor definition of authority and

individual responsibilities and roles, poor performance feedback processes, and

reluctance to cooperate, collaborate and compromise can all undermine a team’s

capacity to achieve its goals.32,109

As teams grow larger, subgroups and alliances, lobby groups and other agendas

may distract the team from the ‘main game’. It becomes more difficult for the

whole team to take responsibility for the quality of care offered to patients and


families. Members have less of a sense of their participation in what a service

delivers.110

Such issues put great pressure on the leadership of a service. Leadership may be

provided more from a base of clinical expertise than leadership skill. Some

leaders are better managers than they are leaders, and some palliative care

teams are comprised of several leaders who find it difficult to follow. While there

is much written about leadership issues generally, research in the area of

palliative care team leadership would be useful. One is reminded that leadership

is always dependent on the relationship between the leader and others and the

context in which the task and the process take place. Those contexts are as

numerous as they are confounding.38,111

The opportunity for genuine consultation and collaboration offers great benefit for

the patient. These benefits have been an integral part of the practice of medicine

for a long time, but the concept of who has the final say when there is conflict

may still present difficulties. In palliative care, the final decision-maker is the

patient, and the patient uses many pieces of information, many sources of

support, and their own values as a guide.92

Practitioners who engage in teamwork benefit from the support and wisdom of

diverse colleagues, but also need to be prepared to be challenged and, at times,

to practice courage and humility. A challenge for specialist teams is to support

primary caregivers, such as family medicine clinicians and community nurses, in

caring for their patients. The patient’s primary caregivers may need

encouragement to work in a team. In the early stages of working closely with

others, the time and effort required for good communication seems costly. The

dynamics of mutual inclusion are not always easy. Communication is a core

requirement to establish roles and responsibilities. A well-constructed formal

summary of assessment is a valuable basis for collaborative care. Teams should


try to develop some continuity in who interfaces with a specific primary

caregiver, to allow relationships to develop and to secure referral pathways.64,83

Models incorporating shared roles and responsibilities offer more than the sum of

the competencies of the individual team members. A true benefit of these models

is that each team member can support and further the therapeutic goals of other

team members. Opportunities for research and investigation may multiply. The

result is that the healthcare system as a whole remains responsive to the

changing needs of the community it serves. It may be that, just as palliative care

has evolved over a number of decades, the challenges of multi- and

interdisciplinary teamwork will help with the evolution of new approaches to

patient care in broader contexts.57

Family Caregiver Role

A family caregiver is a member of the family who has chosen or who has been

designated as the caregiver for one or more family members who cannot manage

normal activities of daily living without help. There are several definitions of

family caregivers, which are discussed below.2

The family (informal) caregiver is any relative, partner, friend, or neighbor who

has a significant personal relationship with, and provides a broad range of

assistance for, an individual with an acute, chronic, or disabling condition. These

individuals may be primary or secondary caregivers and live with, or separately

from, the person receiving care. The family caregiver is also someone who is

responsible for attending to the daily needs of another person. He or she is

responsible for the physical, emotional, and often financial support of another

person who is unable to care for him- or herself due to illness, injury, or

disability.

The care provided by family caregivers often continues over several years. Two-

thirds of family caregivers reported providing care for a year or more while 37%


said they provided care for one to four years. Another 26% had been caregivers

for more than four years. Caregivers of children are also less likely than

caregivers of adults to be caring for just one person.46

Family caregivers operate as extensions of health care systems performing

complex medical and therapeutic tasks and ensuring care recipient adherence to

therapeutic regimens. They operate as home-based “care coordinators” and

personal advocates for care recipients. As healthcare costs and utilization

continue to rise, individuals facing physical, mental or behavioral challenges are

increasingly dependent on the ability of family or other informal caregivers to

operate competently as formal health care providers.17,112

Family caregivers account for 80% of all at-home care services in the U.S. The

caregiver’s most immediate task may be about the most intimate, physical

aspects of care; such as, giving baths, helping a loved one eat, get dressed, use

the bathroom, or even breathe. Family caregivers frequently work alone. The

majority of family caregivers who are already providing intensive levels of care do

not get consistent help from family and friends.11

When the care recipient is an adult, caregiving often requires re-negotiation of

roles in adult relationships, such as between two spouses or adult children and

their parents, and impacts multiple relationships within a family system — for

example, how siblings negotiate meeting parental needs. Caregivers routinely

assist their adult care recipients with activities of daily living (ADL), including

transfers and mobility within the home, getting dressed, bathing, toileting and

feeding. Caregivers also assist with many independent activities of daily living

(IADL), including transportation, housework, grocery shopping, preparing meals,

managing finances, administering and supervising medications, and arranging

and/or supervising paid services. The transition to institutional care is particularly

difficult for spouses, almost half of whom visit the patient daily and continue to

provide help with physical care during their visits. Although the overwhelming


majority of family caregivers provide appropriate care and a supportive

environment for their older relatives, caregiving creates stresses that affect both

caregivers and care recipients, and these stresses may trigger potentially harmful

caregiver behaviors that place dependent elders at risk for abuse.113-115

Physician Role

In a palliative care program, a palliative care physician and the patient's primary

physician jointly share responsibility for the patient's care. In practice, the

palliative physician typically undertakes most ongoing medical services while

coordinating care from other health professionals, including the patient's primary

physician and specialists. This approach helps prevent the service fragmentation

that otherwise often occurs in healthcare systems.116

Palliative care physicians are proficient in treating advanced illness and managing

pain and other symptoms. As the physician representative on the interdisciplinary

team (primary physicians rarely attend the team conferences), the palliative care

physician ensures that consensus about care is reached between specialists and

other physicians involved in the patient's care in consultation with the patient and

family. Patient choice and informed decision-making are emphasized in the

development of the care plan.117

Medicare and most other medical insurance plans pay for "medically necessary"

care. The palliative care physician certifies that the patient needs the services

provided and signs the plan of care. All changes in the plan of care and the

patient's condition are reported to the palliative care physician and documented

in the patient's clinical record. In turn, the palliative care physician communicates

or collaborates with the patient's primary physician on changes to the plan of

care.81


Family physicians play a key role in providing palliative care as they are often the

easiest to access. In addition, home visits are also possible for family physicians

when compared to other physicians who are engaged with inpatient care. Family

physicians can build a close rapport with the patient and family since most

patients have known their family physicians for years. The family physician is

generally the one most aware of the background of these patients and knows the

resources available for them. Therefore, family physicians are in a position to

provide maximum support and care with available resources. These patients can

be continuously followed up by their family physicians, and they can

communicate and coordinate with other medical professionals as well as

caregivers regarding the patient's current situation and attend to their problems.

Furthermore, relevant referrals to specialists and other resources can be

arranged. In that case, family physicians can request extended care by

coordinating with other resources such as nurses, physiotherapists, occupational

therapists, and social workers.39

In terminal stages, 74% of the patients and family members are reluctant to

admit patients to hospitals. They want to spend the rest of their life comfortably

with their loved ones. Therefore, they tend to approach the family physician for

relief of pain and other symptoms and difficulties. It has been revealed that 90%

of care of patients in their last 12 months takes place at home with the support

of the family physician and community nurse teams.30

There are four main components of palliative care, which may be carried out in

the hospital or in the patient's home. They are physical care and medical

treatment, psychological care, social care, and spiritual care. The most important

part of physical care in a patient with terminal illness is to keep him or her as

comfortable as possible until death. Therefore, relief of pain and symptomatic

management of other problems are extremely important. A family physician may

have to manage many symptoms such as weakness, fatigue, drowsiness, loss of

appetite, nausea and vomiting, mouth problems, dysphagia, hiccups, ascites,


constipation and diarrhea, bedsores, coughing and breathlessness, bleeding,

edema, and some psychological conditions such as anxiety and depression. Diet

is another aspect of physical care. The primary care physician should advise the

caregivers to give adequate food and liquid to the patient in a form that can be

easily swallowed and digested.29,93,118

To provide psychological care to the dying patient, the physician should know the

patient's personality and the way that patient views death. Primary care

physicians are ideal for this because of their long-term relationship with patients

and family members. In fact, some families consider their family physician as a

family friend. Therefore, a family physician is in a unique position to provide

comprehensive care to the patient while keeping a good physician-patient

relationship. The family physician should make sure that the psychological status

of the patient and caregivers are assessed at key points of the disease process

and given appropriate psychological support. Being at the patient’s bedside,

communicating effectively while showing concern, touching the patient when

appropriate, active listening to the patient’s fears, frustrations, hopes, and needs

provides the psychological support needed. Primary care physicians can reassure

the patient and ensure that he or she feels comfortable. Patients should be given

hope when it is possible so that they may live the remaining part of their life in

good psychological health.97,119

The social impact of terminal illness is considerable and can reach beyond the

patient and immediate family. Patients may need support with personal care,

advice on employment issues and assistance in securing financial benefits. The

family physician, being an active member of the community, will be able to help

the patient with these needs or provide direction to relevant services. All such

support may be provided informally or formally, in either a planned or reactive

manner.120


Nursing Role

Nurse–patient relationships are central to the nursing role in palliative care and

this relationship should benefit the patient. Recent research suggested that the

three concepts of partnership, intimacy and reciprocity come together in a

therapeutic encounter between the nurse and patient. It is believed that the

nurse must be self-aware, or at least growing towards that goal, for any

meaningful relationship to occur. Furthermore, a caring relationship is formed

between nurse and patient when the nurse recognizes the patient as an individual

and is able to empathize and establish rapport. Some experts liken the nurse–

patient relationship to a journey. Two people travel for a while together,

becoming close and committed to each other, but only within defined limits.121

Care of the dying patient and the family is primarily a nursing responsibility. As

patients shift from the sick to the dying role it is principally the nurse who deals

with the day-to-day task of supporting and helping them and their families to live

with the psychological, social, physical and spiritual consequences of their

illness.48

It has been suggested that the role of the nurse in palliative care is directly

related to the setting in which nurses’ practice. When hospice nurses are

compared with other groups of nurses, particularly nurses from the acute setting,

it has been shown that they experience less death anxiety and more positive

attitudes towards death. In addition, it has been argued that hospice nurses

experience less occupational stress than nurses in other care settings, although

the need for support in this area of nursing is acknowledged. It therefore seems

pertinent to explore the literature specifically pertaining to this group of nurses in

palliative care.122

Palliative care nursing practice is conducted within an affiliative matrix. The

palliative care nurse works with other members of the team to develop and


implement the patient's plan of care. He or she functions as a care manager

coordinating the implementation of the care plan. The nurse also shares an

advocacy role for patients and families with other members of the team. In

developing and maintaining collaborative relationships with other members of

the palliative care team, the nurse must be flexible in dealing with the inevitable

role blending that takes place.25

Skilled services are provided by or under the supervision of registered nurses

following a medically approved plan of care developed by the care team.

Palliative care nurses are adept in the art and science of pain and symptom

management and have well-developed physical assessment and evaluation skills.

Other services include administration of medication and treatments, emotional

support, and patient and family education and instruction. Each nurse care

manager maintains contact with the patient and family and other healthcare

professionals across the continuum of care should the patient require services

outside the home setting.

The palliative care nurse collects patient and family data through assessment of

the patient's physical, emotional, spiritual, social, psychological, and cultural

status. The nurse assesses the patient's and family's coping strategies, support

system, and learning needs in collaboration with other members of the team. The

scope and intensity of reassessment is determined by ongoing and systematic

evaluation of the patient's needs and family condition. Real or potential problems

to be addressed are derived from analysis of the multidimensional assessment

data collected by the team and validated by the patient and family.26,55,114

Social Worker Role

It is essential that every comprehensive palliative care service (which may

include inpatient unit, community care, day care and even the hospital palliative

care team) have an experienced social worker on staff. It is, however, recognized


that in many countries there are few, if any, social workers and even fewer with

training/experience in palliative care. Their work will usually focus as much on

staff as on patients and relatives, and will be concerned with coping strategies,

loss and personality problems.58

The basic tasks of a social worker, such as facilitating discharge, arranging help

in the home, obtaining financial assistance, making special holiday arrangements

etc. can usually be dealt with by someone appropriately trained, though not

necessarily accredited or paid as much as a social worker.

Palliative care social workers provide counseling and spiritual care to help

patients and their families address their economic, psychosocial, and emotional

needs. Skilled in active listening, the social workers take their lead from their

clients, assessing the patient's and family's needs and preferences for care in an

initial consultation and subsequent reassessments. They then develop a social

work plan of care based on their assessment findings. Of the five domains that

constitute quality end-of-life care according to patients — receiving adequate

pain and symptom management, avoiding inappropriate prolongation of dying,

achieving a sense of control, relieving burden on family members, and

strengthening relationships with loved ones — palliative care social workers

spend much of their time with patients addressing the last three. Their services

can take many forms.14,123,124

Social workers help patients achieve a sense of control by discussing with them

and their family members’ issues that both groups typically want to address but

too often avoid — issues such as death and dying, substitute decision-making for

life-sustaining treatment, and memorial planning. They help alleviate the burden

on family members by assessing the patient's and family's economic,

psychosocial, and spiritual needs, and then helping to obtain resources to meet

those needs. They might, for example, assist patients with applying for In-Home

Supportive Services or Meals on Wheels, and help caregivers arrange for respite


services. They also help strengthen relationships between patients and their

loved ones through such services as individual and family counseling. Social

workers help patients and families find closure by discussing the patient's

achievements, assisting with life review, and, in some cases, by helping to create

a memorial videotape of the patient for the surviving family members. A wide

range of other social work services is available depending on the needs of

patients and family members.

The social worker works closely with and supports the work of other palliative

care team members. Often, the social worker shares care management duties

with the palliative care nurse. Like the other members of the core IDT, the social

worker is a constant in the patient's care, from admission on through the dying

process.60,108,125

Massage Therapist Role

Pain control is often a primary concern for palliative care patients, and massage

is an excellent nonpharmacological modality for reducing or alleviating pain, and

thus reducing the need for narcotic painkillers. Massage has been proven useful

as a primary or adjunct therapy for any condition that includes a stress

component, and being diagnosed with a life-threatening disease is high on any

list of stress-producing events.89,120 (Acupressure techniques have been used by

this author to relieve tension in the trapezius muscle of a lung cancer patient).

Massage has proven to be extremely useful for some palliative care patients in

managing stress and alleviating pain, which can reduce the need for psychotropic

and narcotic medications, all of which have their own negative side effects. A

primary benefit of massage for those who are less mobile or bedridden is its use

in helping to prevent pressure sores. Once referred to as "bed sores," these skin

ulcerations are most likely to occur over bony areas of the body, such as the


tailbone, buttocks, elbows, shoulders and heels, that are in constant contact with

a mattress.126

Massaging areas of the body that have been most recently under pressure —

thus stimulating circulation at the susceptible points, along with encouraging the

patient to change positions frequently — has long been recommended in

healthcare manuals as an aid to prevent pressure sores. The massage therapist

can also be on the lookout for reddened, thinning or "hot" areas, and give that

area immediate attention. Palliative care patients may experience dry or itchy

skin as a side effect of inactivity and drug therapy, or as a reaction to body

systems beginning to shut down. Such a condition can cause further agitation for

a person who is already feeling anxious, weak and vulnerable. A moisturizing

massage lotion helps alleviate dry skin, and is soothing and nurturing.110,127

When a massage therapist works with medically frail clients or clients who are

terminally ill, the work performed takes on a much different purpose when

compared to a healthy client coming in for health maintenance purposes. Often

the touch is much lighter and offered as much for psychological comfort as for

easing physical pain. In many situations the only touch they have received has

been either cold and clinical or painful. Simply being there and holding a person’s

hand, or gently rubbing his or her back can soothe anxiety and increase

comfort.128

One of the benefits a massage therapist might consider is to teach family

members how to offer comforting touch to the hospice patient and to each other.

The massage therapist will not be at the client’s home or hospital bedside for

hours on end, but family members might. Often they feel frustrated and helpless

just sitting there. Being able to feel at ease touching a loved one with healing

intent can go a long way in reducing the feelings of powerlessness in a life-

altering situation.125


Another important aspect in working with chronically ill or terminal patients is

making sure the massage therapist has a thorough knowledge of treatment plans

by other team members, which would include knowing the type of medications

being given and the potential for massage either increasing or reducing their

effects. This would be true in both a palliative care situation where light Swedish

massage might be given to someone receiving chemotherapy, or in hospice care

where even more passive massage might take place on someone with end stage

kidney failure.129

Mental Health Professional Role

Psychological care is the management of the psychological needs of the dying

patient and close relatives. Psychological distress is common among people

needing palliative care and is an understandable response to a traumatic and

threatening experience. Patients draw on their own inner resources to help them

cope, and many derive emotional support from family and friends. Some

patients, however, are likely to benefit from additional professional intervention.

Palliative care psychiatry is an emerging subspecialty field at the intersection of

Palliative Medicine and Psychiatry. The discipline brings expertise in

understanding the psychosocial dimensions of human experience to the care of

dying patients and support of their families.

There are a number of important issues for which a psychiatrist may have unique

expertise in palliation; such as, issues of meaning and life closure, intimacy in

relationships, and concerns about bereavement, among other issues. In addition,

good management of psychosocial and psychiatric issues often enables improved

management and outcomes of the primary illness. More specifically, psychiatric

syndromes, such as depression, anxiety, and delirium, are common in palliative

care settings and frequently under-recognized or under-appreciated, though they

contribute to a substantial burden of suffering for patients and families. In


hospice patients, for example, roughly 50% will experience symptoms of

depression, approximately 70% will experience clinically significant anxiety, and

nearly all patients will experience delirium as death nears. Psychiatric conditions

are often difficult to differentiate in the setting of serious illness, due to symptom

overlap with medical conditions. In addition, palliative care physicians are often

uncomfortable with off-label use of psychotropic medications, and they lack

expertise in psychotherapeutic interventions.48,115,130

Dietician/Nutritionist Role

Given the emerging importance of nutritional strategies in caring for palliative

patients and families, there has been a call for the inclusion of dietitians

in palliative care services. While this is particularly relevant in the context of

intervening and initiating palliative care much earlier in illness trajectory, it also

applies to optimizing the eating experience and its related quality of life in the

context of very advanced disease. More specifically, their work involves the

following: 1) processing referrals, 2) assessing patients’ clinical data and

soliciting important clinical information about the patients from other team

members; 3) informing the team about the results of the nutritional

assessments; 4) discussing and establishing realistic nutritional goals;

6) developing nutritional care and treatment plans; 7) undertaking and reporting

patients’ nutritional follow-ups and making adjustments to the initial nutritional

care plan; and 8) collaborating with other team members in the preparation of

discharge plans if needed.

Nutritional support involves dietary counselling, developing personalized meal

plans and overseeing artificial nutrition (enteral and parenteral feeding) in those

patients who were receiving these. Providing dietary counselling to enhance

symptom control constitutes an important part of the nutritionists’ dietetic

practice.64,83,121


Chaplain/Spiritual Advisor Role

Since palliative care can be provided at any stage of disease, at the same time as

curative or life-prolonging treatments, and in inpatient or outpatient settings, the

palliative care chaplain may provide chaplaincy care to patients over the course

of several months to years. The chaplain’s scope of practice in hospice and

palliative care may include addressing religious, spiritual and existential pain and

suffering related to a life-limiting diagnosis, assisting with advance care planning

in light of one’s values and beliefs, or facilitating conversations about one’s hopes

and fears. In both the hospice and palliative care setting, there is the critical

need for staff support due to the frequency of death and the cumulative impact of

grief. Routinely addressing staff concerns related to bereavement will prevent the

debilitating issues that may occur. Another important aspect of the chaplain’s

work may be to provide bereavement support for the patient’s caregivers.89,108,131

Hospice and palliative care chaplains provide a broad and diverse range of

services, including those highlighted below.132

• Completing an assessment and determination of an individualized plan of

care that contributes to the overall care of the patient that is measurable

and documented.

• Participating in interdisciplinary teamwork and collaboration.

• Providing spiritual/religious resources, such as sacred texts, Shabbat

candles, music, prayer rugs and rosaries.

• Offering or facilitating rituals, prayer, sacraments and legacy work.

• Contributing in ethical issues, such as through a primary chaplaincy

relationship, participation on an ethics committee or consultation team

and/or participation on an institutional review board.

• Helping identify and interpret cultures and faith traditions that impact

health care practice and decisions.


• Educating and consulting with the health care staff and the broader

community.

• Building relationships with local faith communities and their leaders on

behalf of the organization.

• Offering care and counsel to patients, their caregivers and staff regarding

dynamic issues, including loss/grief, spiritual/religious/existential struggle,

strengths, opportunities for change and transformation, ethical decision

making, and difficult communication or interpersonal situations.

• Facilitating difficult conversations, including goals of care and advance care

planning.

• Addressing signs and symptoms of non-physical pain and suffering.

• Providing leadership within the organization and within the broader field of

chaplaincy.

The Palliative Patient Care Plan

Care planning is an essential part of all palliative care programs; it enables the

patient and the team to identify their needs and work to specific goals. The ability

to complete an effective and thorough care plan with a patient can be affected by

a number of variables; experience and knowledge are primary examples. Patients

should receive their health care from competent clinical professionals and the

patient’s dignity should be maintained at all times. To write an effective care

plan, it is important that one understands what it is and how it works in

collaboration with the palliative care team.116

A care plan is a document that either can be on paper or in a computerized

format and it should be developed in collaboration with the patient. Care plans

may be individualized (produced in response to the specific patient by the

clinician undertaking the assessment), core (standardized) or as a pathway to

ensure that a patient proceeds along their chosen health journey. Although care


plans take on different formats, the general principle is to provide details of care

needed, and a direction and goal for the care delivery.

When developing a care plan, it is recommended that one should document the

identified problem and the perceived goals in collaboration with the patient. This

process requires additional information (i.e., how the goal will be realistically

achieved), therefore it needs regular re-evaluation of the patient’s progress, with

their care plan being reviewed and updated as required. When putting together a

care plan it is important to consider that, although health clinicians work

concurrently within established professional standards, they are also responsible

for ensuring that the care plans developed are responsive to a number of quality

outcome standards that apply to direct patient care. Primarily, these quality

outcomes include:142,133

• Respecting and involving people who use services

People should be treated with respect, involved in discussions about their care

and treatment and able to influence how the service is run.

• Consent to care and treatment

Before people are given any examination, care, treatment or support, they

should be asked if they agree to it.

• Care and welfare of people who use services

People should get safe and appropriate care that meets their needs and

supports their rights.

• Meeting nutritional needs

Food and drink should meet people’s individual dietary needs.


• Cooperating with other health providers

People should get safe and coordinated care when they move between

different services.

• Safeguarding people who use services from abuse

People should be protected from abuse and staff should respect their human

rights.

A systematic approach to care planning should include the assessment, arrival at

a systematic diagnosis, planning, implementing, rechecking (which happens once

the documentation of the information has occurred), then evaluating. It is

suggested that this may be more appropriate and reflects the problem-solving

requirements a health clinician needs to use, rather than prior models of patient

assessment, planning, implementation and evaluation.80,102

The initial step in developing a care plan is to gather all relevant information from

the patient, as well as from the patient’s family and personal medical records.

This should incorporate a knowledgeable discussion and enable the patient to

express their wishes, fears and concerns. The clinician is required to work with

the patient and should perform a holistic assessment, ensuring that it remains

person centered and systematic, and [developed with the patient producing] a

comprehensive personalized plan of care.82,120

The use of an accredited model of assessment may facilitate the care planning

process, but the most important aspect is that it demonstrates that a robust

assessment has been performed, including diagnosis, and that care has been

planned based on current evidence. The fundamental aspects of care planning

are through a fusion of theory and practice-based learning. The theory element is

based on the Roper–Logan–Tierney (RLT) activities of daily living model, which is

accredited by its use worldwide as a successful framework, specifically in nursing


clinical practice, for all elements of clinical education and care. Although there are

a variety of models available to facilitate the care planning process, such as the

Self-care Deficit model by Orem, or the Health Care Systems model for nursing,

the RLT model is the most accepted. It is not uncommon, however, to see in

some establishments that to meet their patient’s needs or that of the specialty,

aspects from a number of models may be used to develop their own method of

care plan development.

The priority is not to focus on which model, but to ensure that patient safety is

maintained by operationalizing the model(s) in response to patient need, and also

that the care planning process is transparent and clear. This is essential as care

is generally delivered by a team, not one individual, so to ensure that care is

seamless and that everyone is working to the same goals or plans, the care plan

must be accessible to all members of the team so that everyone involved can

follow the plan.74,95,105,134,135

Benefits Of Palliative Care

Palliative care and hospice programs demonstrably improve physical and

psychosocial symptoms, family caregiver well-being, bereavement outcomes, and

patient, family, and physician satisfaction. These objectives are achieved through

care provided by interdisciplinary teams of physicians, nurses, social workers,

spiritual counselors, pharmacists, aides, and additional personnel as needed

(such as, physical therapists, psychologists, and others). Palliative care and

hospice teams identify and rapidly treat distressing symptoms that have been

independently shown to increase medical complications and hospitalization.

Palliative care and hospice teams meet often with patients and their families to

establish appropriate and realistic goals, support families in crisis, and plan for

safe transitions out of hospitals to more supportive settings (home care, home

hospice, nursing home care with hospice, or inpatient hospice care).


Communication regarding the patient's prognosis and goals by a dedicated team

with time and expertise leads to better-informed decision making, clarity of the

care plan, and consistent follow-through. Such discussions at family meetings

lead to lower costs and a lighter family burden and improve family satisfaction

and bereavement outcomes.66,136,137

Contrary to widely held assumptions, several recent studies have demonstrated

that both palliative care and hospice care may be associated with a

significant prolongation of life for some patient populations. Research is

necessary to confirm these findings and assess their generalizability. Conjectures

accounting for the possibility that palliative care and hospice may prolong life

include reduction in depression, which is an independent predictor of mortality in

multiple disease types, avoidance of the hazards of hospitalization and high-risk

medical interventions, reduction in symptom burden, and improved support for

family caregivers that permits patients to remain safely at home.57

Palliative care and hospice programs promote the delivery of coordinated,

communicated, and patient-centered care by targeting the drivers of increased

utilization of hospitals, specialists, and procedures. These drivers include financial

incentives for quantity and fragmentation of care, lack of training in management

of patients with complex or multiple chronic conditions, lack of a strong primary

care infrastructure, and financial and structural disconnects between the acute

and the postacute care settings for health care.

By addressing pain and symptoms that might otherwise increase hospital

complications and lengths of stay, meeting with patients and families to establish

clear care goals, tailoring treatments to those goals in consultation with the

patients and their families, and developing comprehensive discharge plans, both

hospital- and community-based palliative care and hospice programs can reduce

costly and preventable hospitalizations, readmissions, and emergency

department visits. Patients are able to remain in their homes as a consequence of


better family support, care coordination, and home care and hospice referrals;

more hospital admissions go directly to the palliative care service or hospice

program instead of a high-cost intensive care unit (ICU) bed. Patients not

benefiting from an ICU setting are transferred to more supportive settings, and

nonbeneficial or harmful imaging, laboratory, specialty consultation, and

procedures are avoided. Controlled trials in Europe and the U.S. and multisite

studies in the United States suggest that the ability of palliative care and hospice

programs to help patients avoid hospitalization can be substantial.16,21,38,73,138

Based on recent data, the average patient-admission net cost saved by hospital

palliative care consultation is $2,659. Approximately 2% of the 30 million annual

hospitalizations in the United States end in death. Assuming that most of these

patients, plus the approximately 4% of patients who are discharged with serious

and complex chronic illness, could benefit from palliative care services, palliative

care programs should be serving approximately 6% of all hospital discharges

(including patients who die). At present, palliative care programs have been

established at more than 60% of U.S. hospitals with more than fifty beds and

affect approximately 1.5% of all discharges. Palliative care is estimated to save

$1.2 billion per year under the current penetration of services (to approximately

1.5% of all hospital discharges at 1,500 U.S. hospitals). This figure would

increase to approximately $4 billion per year if capacity were expanded to meet

the needs of 6% of hospital discharges at 90% of all U.S. hospitals with more

than fifty beds.26,29,57,82

Palliative care also reduces total health care costs for the majority of Medicare

beneficiaries receiving it. Using propensity score analysis to control for selection

bias, an estimated $2,300 is saved per palliative care beneficiary on average,

compared with similar patients not receiving palliative care services.

Extrapolating this average savings across the number of palliative care patients

served each year yields an overall savings of more than $3.5 billion a year

(1,560,000 patients×$2,300=$3.5 billion). The maximum savings was reached


with a length of palliative care use of approximately seven weeks, leading to

reduced Medicare costs of $7,000 for cancer patients and $3,500 for others. The

savings attributed to patients persisted for 233 days of palliative care for cancer

patients and 154 days of care for noncancer patients. In addition, recent analyses

have found that the costs of care for patients with cancer who disenrolled from

palliative care (disenrollment because of family exhaustion, symptom crises, or a

need/desire for disease-directed treatments not covered under hospice) were

nearly five times higher than for patients who remained with the program.

Patients who disenroll from palliative care are far more likely than those who do

not to use emergency department care and be hospitalized.7,23,86,139

Although studies generally have found that Medicare spending for palliative care

enrollees across settings is less than that for nonenrollees in the last several

months before death, these savings diminish as hospice stays increase in length

beyond 180 days. The rise in access to palliative care in long-term care settings

has resulted in a rise in average (but not median) length of stay, primarily

because of the growth in the number of very long-stay beneficiaries. Since

palliative care is paid per diem, these long stays, along with the rising number of

chronically ill Americans receiving care, have resulted in a quadrupling of

government expenditures on hospice in the last eight years. Despite data

pointing to overall Medicare savings associated with the use of hospice, the

recent growth in spending on palliative care has led to ongoing government

review by both the Medicare Payment Advisory Commission and the Department

of Health and Human Services, as required in the Affordable Care Act of 2010 of

the appropriate use of the Medicare Hospice Benefit. Concerns about the overuse

of hospice focus on Medicare beneficiaries with multiple chronic conditions and

functional impairment who are not (imminently) dying and may survive beyond

the initial six-month prognostic eligibility criterion set in statute.96,127,140


By way of review, the benefits of receiving palliative care services are many,

which include:141,142

• Services provided in an outpatient setting, such as the patient’s home,

long-term care facility or assisted living facility

• Expert monitoring and treatment of pain and symptoms

• Helping the patient have more control over his or her care by improving the

understanding of the various choices for treatment.

• Close communication and coordination with all of the patient’s care

providers

• Caregiver support with education and community resources

• Helping to reduce or eliminate unwanted hospital visits

Palliative care provides better symptom management and quality of life

compared with usual (cure-directed) care. Studies show that patients who

receive hospice care have improved quality of life, with less depression and

symptom burden, feel more in control, are able to avoid risks associated with

treatment and hospitalization, and have decreased costs with improved utilization

of health care resources.12 Perhaps most importantly, when initiated early in the

disease course, palliative care also improves clinical and quality of care

outcomes, and possibly prolongs survival.

In a recent systematic review of the evidence regarding the impact of palliative

care interventions on outcomes for patients with advanced and serious illness,

evidence of benefit was strongest for interventions that targeted pain, and for

decision-making related to appropriate health care utilization. In a recent trial,

350 patients with advanced lung or gastrointestinal cancers — including

pancreatic, gastric, and esophageal — were randomly assigned to receive

palliative care along with standard treatment or standard treatment alone.

Patients in the palliative care group received a visit from a palliative care

specialist at least once a month; both groups were evaluated 12 weeks and 24

weeks after their cancer treatment had begun. Patients with lung cancer who


received early palliative care reported improvements in quality of life and mood

at 12 and 24 weeks. Among patients with gastrointestinal cancers, however,

there was no difference between the two study groups in quality of life or mood

at the 12- or 24-week evaluations.40,143

The above-mentioned study also showed that 30% of all patients who received

early palliative care reported having discussions about their end-of-life care

preferences, whereas only 14% of patients receiving standard care alone

reported having these discussions. At 24 weeks, patients in the palliative care

group were more likely to report using what researchers call adaptive-coping

strategies than patients in the other group. This style of coping involves taking

actions to make one’s life better, such as accepting one’s diagnosis and the use

of emotional help.144,145

Benefits to the Family

While a family caregiver has been defined as a member of the patient’s family

who has chosen or who has been designated as the caregiver for one or more

family members who cannot manage normal activities of daily living without help,

there are several definitions of family caregivers worthy to highlight.19

• Family (informal) caregiver is any relative, partner, friend, or neighbor who

has a significant personal relationship with, and provides a broad range of

assistance for, an individual with an acute, chronic, or disabling condition.

These individuals may be primary or secondary caregivers and live with, or

separately from, the person receiving care.

• Family caregiver is someone who is responsible for attending to the daily

needs of another person. He or she is responsible for the physical, emotional,

and often financial support of another person who is unable to care for himself

or herself due to illness, injury, or disability.


The National Alliance for Caregiving, in collaboration with AARP, reported that

there are 65.7 million people in the United States who have served as informal

caregivers, with approximately 30% of people reporting that they have cared for

at least one family member. Two thirds of family caregivers are female (66%),

with their average age being 48 years. Family caregivers’ age increases with the

age of the care recipient. With a decline among younger caregivers (under the

age of 50 years), there is an increasing number of family caregivers aged 50 to

64 years, and an even larger increase in the number of caregivers aged 75 years

or older. One-third of family caregivers are responsible for the care of two or

more family members (34%). Due to issues of caregiver burden, a family

member may also hire paid help from aides, housekeepers, or other people. The

use of paid care increases with the caregiver’s household income. More

specifically, 48% of caregivers whose income is over $100,000 use paid help.

Approximately, 74% of caregivers live with their loved one or within 20 minutes

from their home. Among caregivers who do not live with their loved one, 76%

report that they visit at least once a week.60,66,110

Of the 65.7 million U.S. caregivers, 3.9 million care for only child recipients, 48.9

million care for only adult recipients, and 12.9 million care for both child and

adult recipients, according to the National Alliance for Caregiving. A 2013 report

from the Alliance also shows that 16.8 million unpaid caregivers provide care to a

child under the age of 18 with a special need. In 2013, 9.9 million family

members, friends and neighbors provided unpaid care for a person with

Alzheimer’s disease or other dementia.13,64

Family caregivers often provide care over several years. Two-thirds of family

caregivers reported providing care for a year or more while 37 percent said they

provided care for one to four years. Another 26 percent have been caregivers for

more than four years. Caregivers of children are also less likely than caregivers of

adults to be caring for just one person.78


Family caregivers operate as extensions of health care systems performing

complex medical and therapeutic tasks and ensuring care recipient adherence to

therapeutic regimens. They operate as home-based care coordinators and

personal advocates for care recipients. As health care costs and utilization

continue to rise, individuals facing physical, mental or behavioral challenges are

increasingly dependent on the ability of family or other informal caregivers to

operate competently as formal health care providers. Yet, despite their important

function in our society, caregivers do not receive adequate training, preparation

or ongoing support from health care systems.21,64,92

The typical recipient of care is a relative (86%), including a parent (36%) or a

child (14%). The recipients of care are primarily female (62%), with an average

age of 61 years. Seventy percent of the care recipients are adults, 50 years or

older. Alzheimer’s disease or dementia is the main problem for caregivers (12%

in 2013). The average period of caregiving is 4.6 years, with 31% of caregivers

caring for their loved one for more than 5 years. The average caregiving time is

20.4 hr/week; female caregivers spend more caregiving time than do male

caregivers (21.9 vs. 17.4 hr/week; National Alliance for Caregiving in

collaboration with AARP). According to the Family Caregiver Alliance, it has been

estimated that 70 million people will be older than 65 years in 2030. Therefore,

family caregivers increasingly provide care for aging adults, most of who have

one or more chronic conditions and who wish to remain in their own homes and

communities. Other family caregivers belong to the sandwich generation, which

describes the caregivers sandwiched between caring for elder parents or

grandparents and spouse and/or children. These caregivers are pulled in both

directions and often have jobs as well as these dual responsibilities. They are

typically middle-aged women who are overwhelmed with responsibility and acting

out of duty who, in the process of caring for others, neglect themselves because

there are competing demands for their time.8,96,146


Caring is fundamental to human survival and throughout the life span, people

care about and for others; both within and outside family and kinship groups.

Some people take on this role suddenly, and it may only last just a few weeks or

months as a relative enters the dying phase of a final illness, while for others it

lasts a long time with more uncertainty about dying, such as for an older person

with dementia. Most carers manage very well and draw upon the support of

family members and wider social networks. They may not identify with the term

‘carers’, as the caregiving role is regarded as part of the normal complex pattern

of reciprocal relationships that are characteristic of most family, kinship and

friendship systems. Most caregiving is enmeshed in a web of mutual

dependencies, responsibilities, demands and rewards that make up everyday

family life. Caregiving within palliative care contexts, arguably, is especially

demanding because of the sense of imminent loss and the demands of caring for

a patient with high dependency needs.93,102,147

Caregiving is a gendered role, with care predominantly provided by women and

that the majority of carers are in the age range 50–59 but increasingly older

people over 65 years are involved in caring both for their spouse and parents

who may now live into late old age (over 85 years). In palliative care, there is

more likely to be within-generational than cross-generational care giving, which

is different from other types of caring. It is often not acknowledged that children

may be both the receivers and providers of care within palliative care. Informal,

unpaid care giving is largely hidden and taken for granted but it is crucially

important to enabling dying people to achieve a ‘good death’ and in saving

society from the huge costs of institutional care. Hospice and palliative care

services generally recognize the important role that family carers play in

providing care and support to patients.30,87


The Burden Of Caregiving On The Family

Family caregivers provide extraordinary uncompensated care, which is physically,

emotionally, socially, and financially demanding. The caregiving role begins

immediately at the point of diagnosis and continues over the illness trajectory

with needs for information about care and the patient’s disease that vary at the

different stages of the patient’s illness. Caregivers are a conduit for information

between patient and provider and between provider and extended family. Family

caregivers experience the physical strain associated with caregiving and also fear,

confusion, powerlessness, and a sense of vulnerability despite their attempts to

maintain normalcy. They often suffer from symptoms of anger, depression, and

anxiety and may become demoralized and exhausted.

Caregivers themselves may experience increased physical illness, exacerbation of

comorbid conditions, and a greater risk of mortality. Burdens associated with

caregiving include time and logistics; lost wages or leaving the workforce

entirely, which have severe economic implications; and personal, social, and

institutional impact. Sources of anxiety for caregivers include residual effects of

disease and treatment on the patient, altered household and family roles, and

altered communication patterns. As caregivers abandon leisure, religious, and

social activities, there is heightened marital and family stress, with long-term

consequences for the health and the stability of the family. Changes experienced

across the trajectory require caregivers to adapt to a new set of patient needs,

creating increased distress, yet caregivers are reluctant to identify themselves as

individuals who need support. This reflects the concept of “legitimacy of needs”

or “caregiver ambivalence,” as they do not want to “bother” professionals or shift

attention away from the patient. Some caregivers hide their feelings of loss and

grief from the patient, which is termed “bridled grief”. This may lead to increased

caregiver isolation, depression, and overwhelming misery when caregivers finally

allow themselves to grieve. The level of stress/strain varies by disease. Previous

studies reported that caregivers of dementia patients have higher levels of


burden than other caregivers due to long care hours and physically demanding

caregiving.35,117,126,148,149

A study by Kim and Schulz compared the strains of family caregivers of cancer

patients to the strain of caregivers of frail elders and dementia and diabetes

patients. The results showed that the level of strain of caregivers of cancer

patients is greater than the strain on caregivers of elderly or diabetes patients,

but cancer caregiver strain is comparable to that of caregivers of dementia

patients. Caregivers of patients with cancer and dementia reported higher levels

of physical strain, emotional stress, and financial hardship as a result of providing

care. The crucial difference between cancer and dementia caregivers was that

cancer caregivers are distressed by various acute medical conditions experienced

by the patient, such as surgery, chemotherapy, or radiation therapy (i.e.,

catheter care or managing patients’ emesis or fatigue symptoms), whereas

caregivers of dementia patients are distressed by the significant cognitive and

functional decline and behavioral changes, which progress over time.

Beyond the burden of family caregiving, the strengths of the family should also

be considered. The strengths of individuals and families provide a means of

dealing with any problems that exist. The goal should be to identify strong

families and provide means of developing the strengths of families. The focus on

family strengths does not deny the presence of stressors or perceived burden;

rather, it offers a focus on the resources any family can develop and use in

reducing the stressors or negative effects associated with caregiving. Given the

strengths of the family, the caregiving experience may also have benefits and

possible gains, but yet these outcomes have received little attention. Health

professionals should not miss the opportunity to identify the rewards and

satisfaction that come from the role of caregiving.74,77,150

Studies indicate that family caregivers describe feelings of satisfaction for a job

well done, particularly when the patient appreciates and acknowledges their care


and support, and when caregivers feel a sense of giving back for the care and

nurturing they themselves received. The positive aspects associated with the

caregiving experience may act as a buffer against overwhelming burden and

traumatic grief. Caregivers who have a positive approach to life are better able to

cope with caregiving demands and are motivated to maintain their caregiving

role.

Based on a comprehensive review of quantitative studies, Stajduhar and

colleagues reported posttraumatic growth of bereaved caregivers. These studies

reported a sense of existential meaning associated with the caregiver role,

including a sense of pride, esteem, mastery, and accomplishment. Using the

Stress Process Model, researchers examined spousal caregiver depression and life

satisfaction in the hospice setting, learning that caregivers found meaning and

benefits in caregiving, and suggesting the need to identify caregivers at high risk

and protective factors that could be incorporated into interventions.151,152

When a family member becomes seriously ill, caregiving involves emotional and

psychosocial support as well as the provision of physical care. There is already

considerable research identifying the needs of caregivers in palliative care

situations. The evidence includes needs for psychological support, information,

help with domestic tasks, personal care, nursing and medical care of the cared-

for person, respite, social and financial help. There is also a lot of research into

the negative effects of caregiving, such as anxiety, depression, stress, strain,

fatigue and even increased mortality. Caring for a terminally ill person places

heavy financial demands upon the family. The costs of providing medical care,

transport to hospital appointments, additional equipment or home adaptations,

laundry, heating, clothing and special food are rarely acknowledged. Much of the

early literature concentrated on the negative impact, more recently there has

been greater recognition of the rewarding aspects of caregiving such as closer

relationships, feelings of self-esteem and discharging family obligations.31,105,139


Caring carries an emotional burden that may leave the caregiver feeling stressed,

fearful and guilty. There is a growing realization that caring for the caregiver is a

priority as they may be the person that facilitates end of life care choices (i.e.,

preferred place of care (PPC) being delivered in the patients’ home). The need for

informal caregivers to take on the caring role will undoubtedly increase as the

older population (65 years and above) rises. Frailty increases with age from 10–

11% in people over 65 rising to 25–50% in those over 85 years of age. This does

not mean that everyone over 65 years will need care, but what is evident is that

there appears to be a significant number of people living with debilitating

conditions and/or life-limiting illness who require a potentially increasing amount

of care. This challenge has been recognized globally with the realization that

there will also be a need for expert, end of life care services.92,153

Friends, family or the patient’s spouse provide a great deal of care, and this

provision will also need to rise proportionately. Despite this growing recognition

for expert professional staff, the need for well-supported, knowledgeable,

informal caregivers must also be considered. Currently, however, evidence

suggests that caring may be having a significant impact on the caregiver’s quality

of life.60

Caregiver’s Health Needs

The Department of Health recognized the significant impact carers make to

healthcare provision and have stated that caregivers need caring for, which

should incorporate assessing their need for support. Support may take on many

guises: social, informational and/or emotional and so on. Caregivers’ health

needs should be assessed on a regular basis as maintaining their health may

mean maintaining the chosen place of care for the one being cared for. If there is

a need for an increasing number of caregivers to take on the physical,

psychological, social and emotional task of caring, then investing in the support


mechanisms is essential. Researchers identified that prolonged exposure to grief

and suffering may have negative effects on the wellbeing of the caregiver.

Maintaining caregivers’ health should be a key priority. Caregivers may feel

isolated, vulnerable and unsupported by the professionals around them. There

are numerous reasons, which can include: lack of information regarding available

resources (including financial, equipment), information being delivered but not

understood as a result of the stressful situation they may find themselves in, or

the use of jargon by the professional.33,88,114,154

Caregivers often lose contact with friends and family as they have to allocate

more of their time to caring. They may need to relinquish other responsibilities

and hobbies or even employment to fulfil the role. A government poll suggested

that 2.3 million adults have terminated their employment to care for a loved one.

Many have reduced their normal working hours or needed to undertake paid

overtime work to supplement missed working hours and loss of pay due to caring

responsibilities. If a caregiver has to stop working to give care, this could have

significant financial burden on them and potentially other family members if they

support them. Additionally, if they have to stop working because they can no

longer leave their loved one alone, it may be that their social support diminishes

too. This may present a significant burden, not only their physical health but also

their emotional, psychological and social wellbeing. These negative experiences

are well recognized in the literature and include:68,86,123

• Social isolation may be significant as reluctance to leave their relative or

loved one once away from work may lead to them limiting social contact

outside work with anyone other than the person they are caring for.

• Financial worries and stress associated with being at work adding to the

burden.

• Guilt associated with having to be at work and leave their loved one alone

or with strangers.


Unfortunately, taking on the caring role may not be a choice that is made for all

the right reasons, but may be one made out of having limited choices. Feelings of

responsibility or guilt may be the motivation or reasoning behind the choices

made. The result may be internal conflict with feelings of regret alongside

feelings or recognition of responsibility and wanting to do ‘the right thing’, but

the consequences of this withdrawal from their former life is isolation. As already

identified, this isolation may be a significant issue for the caregiver and affect

their psychological and physical health.155

There is evidence to suggest that over 58% of deaths occur in hospital with a

subsequent and increasing drive to ensure individuals spend their last days of life

in their home environment whether that environment is a nursing home or their

own home. The data suggests that this would be the PPC at the end of life. This is

not just a U.S. phenomenon; internationally, the majority of care in the last year

of life appears to be delivered in the patient’s own home. Therefore, it may be

that only when things become fragmented or at a point where there is difficulty

coping, then admission to hospital may be the option of choice for the caregiver

and/or patient.

The caring tasks themselves can create feelings of uncertainty, inadequacy and

lack of self-confidence in the caregiver. These unmet needs, including support,

may compound the feelings of inadequacy and fear of doing the wrong thing. A

systematic review of caregivers’ practical needs (i.e., how to provide physical

care, medication regimes and nutritional care) demonstrated an overwhelming

need by caregivers for information surrounding emotional and practical support

with effective, open communication.

One study examined caregivers’ satisfaction with communication and healthcare

professionals’ perceptions regarding communicating information to relatives.

Although 74% of caregivers had been given informational support surrounding

the disease, 35% of those were generally dissatisfied with the way it had been


delivered, the timing of the delivery and the content of the information. There

was a range of issues identified suggesting that individual needs should be

addressed. The rate, depth and the timing of that delivery need a comprehensive

assessment and an understanding of the needs of the caregivers and the

patients.

The vulnerability of a caregiver and patient in a home environment without

information surrounding aids, medication regimes, financial support and physical

care advice in general should not be underestimated. The use of respite care may

help to support the caregiver in order that they can continue to care for their

loved one indefinitely. Caring for a patient with a life-limiting illness is, by the

nature of the disease, one where second chances to put things right may not be

an option. The poor and distressing experiences will continue long after the

patient has died, and the caregiver may bear the scars of guilt and emotional

burnout for a prolonged period.156-160

Assessment of the caregiver and caregiving situation is particularly complex

because it involves:

• Assessing individual psychological symptoms of caregivers (often below

clinically-significant levels) and sometimes also assessing symptoms or

psychopathology in care recipients

• Understanding the demands which illness or disability impose on the family

• Determining the circumstances which predispose the caregivers to having

positive or negative experiences during the period of caregiving

Variables to be Assessed161

The Situation:

• Caregivers’ immediate questions, challenges and priorities.

• The family’s understanding of and approach to the illness/disability.

• The family’s caregiving stage in response to the progression of the illness.


The Context:

• The family’s developmental stage (i.e., family with young children, late-life

family).

• Individual family members’ capacities, personalities, and willingness to

take on new roles.

• The family system, including structural and functional characteristics.

The Meaning:

• The family’s previous experiences providing care to an ill or disabled loved

one.

• The history and quality of the relationships between the care-recipient and

other family members.

• The cultural and spiritual contexts for care.

A systematic approach to assess the caregiver’s needs and strengths is crucial in

order to develop a dyadic intervention that can improve the outcomes for both

caregivers and care recipients. Caregiver assessment can be used for

determining eligibility for services, identifying unrecognized or subtle problems

that might not be obvious although they have great impact on successful

caregiving. The assessment process also promotes the development of a strong,

trusting, therapeutic relationship between the clinician and the caregivers. There

are a number of tools that can be used to perform the assessment, although little

consensus exists as to the best strategy. Research indicates that the best

assessments include all family caregivers and the care recipient. Both the patient

and the family should be assessed by the same clinician or health professional in

the caregivers’ home or another place where they both feel safe to discuss all

aspects of the situation.56,70,87

The advantages of assessment as a basis for accessing services and support are

many, but it is important to outline some specific benefits. The first is the

identification of problems in the caregiving context, including but not limited to


interpersonal, relational, situational, or financial problems. These problems may

be potential or actual. The second advantage is the clarification of roles and

responsibilities for family members, as well as a clear estimate of the resources

available versus those that will be needed to provide the required care. The

assessment can also reveal actual and potential stresses that can be dealt with

before they reach overwhelming and incapacitating anxiety and depression

leading to despair. The structured and systematic nature of a good caregiver

assessment assures that important aspects will not be missed and that a

comprehensive approach is implemented.157,162,163

Clinicians will need to tailor their use of assessment instruments depending on

the characteristics of the caregiver (i.e., age, cultural background), and the care

recipient (i.e., age and specific medical problem or disability). There a number of

caregiver intake forms, measures of caregiver mental health, and measures of

caregiver stress, burden, coping, and family context. Clinicians can also assess

care receiver measures of behavior and functioning, cognitive problems, quality

of care, health problems, and mental health. Many clinicians will also benefit from

instruments that may be particularly useful with caregivers from diverse cultural

backgrounds.142,164

The Caregiver Intake Interview may be different from assessments psychologists

typically undertake to identify individual psychopathology or distress. In order to

create strong interventions for a caregiving family, psychologists must gather key

information about a range of topics to help determine:

• The nature of the care-recipient’s illness or disability

• The family’s stage of caregiving (early, middle or late)

• The constellation of individuals involved in care, including community

support persons, and treating professionals

• Unique or challenging caregiving circumstances


Seven Domains to Assess

• Background on the caregiver and the caregiving situation

• Caregiver’s perception of the health and functional status of the care-

recipient

• Caregiver’s values and preferences

• Health and wellbeing of caregiver

• Consequences of caregiving on the caregiver

• Care provision requirements

• Resources to support the caregiver

Assessment Intake Guide Examples

• Caregiver Intake Interview Guide

• Caregiver Intake Report

• Caregiver Intake Form (to be completed by the family caregiver)

• Child and Caregiver Assessment Tool (to be completed by the clinician)

• Pediatric Intake Report (to be completed by the clinician)

• Family Caregiver Alliances toolkit, “Caregivers Count Too!” contains

suggested questions for eliciting the information above.

The following questionnaires and interviews are commonly used with adult

caregivers of any background and have been utilized in caregiving research

studies and clinical work as well.

• Assessing Caregiver Stress, Burden, Competence and Coping

• Assessing the Mental Health of Caregivers

Sometimes as part of the assessment of the caregiver it is necessary to assess

the extent of the problems being experienced by the care receiver. The following

tools help make that possible.160,165,166

• Assessing Behavior, Observation and Functioning in Care Recipients


• Cognitive Problem Assessment Tools

• Quality of Care Measures

• Assessing Health Problems

• Evaluating Care Recipient Mental Health

Culture is known to influence caregiving. Specifically, issues of acculturation,

assimilation, cultural values, beliefs and norms can be important for caregivers.

There are a number of assessment tools that were designed to assess the unique

aspects of caregiving among diverse groups. Although there are few well-known

caregiving assessment tools designed specifically for use with diverse

populations, several of the better-known tools have been tested across various

groups, and have proved to be culturally sensitive instruments. In particular, the

Zarit Burden Index (ZBI) has been shown to have a factorial structure that is

invariant across caregiver samples. The ZBI has also been adapted and validated

for use with several different languages. A modified version of the Caregiver

Strain Index has also been shown to have adequate reliability and validity among

racial/ethnic minorities. Several good reviews of issues of cultural diversity in

caregiving research have addressed these specifically in the context of

assessment tools:12,167,168

• Acculturation Rating Scale for Mexican Americans

• Caregiver Abuse Screen Spanish

• Cultural Justification for Caregiving Scale

• Suinn-Lew Asian Self Identity Acculturation Scale

• The Center for Epidemiological Studies Depression Scale

• The Revised Memory and Behavior Problems Checklist

• Zarit Burden Interview

Often caregivers are unaware of resources available to them or simply lack the

energy to seek them out and then wade through all the red tape involved in

documenting eligibility for the help. The financial hardships that develop over


time are an added burden. There is also agreement that palliative care nurses,

case managers, and therapists can break this cycle by advocating for the

caregivers as well as the care recipients. What is less clear is why so many family

caregivers fail to have access to these supports and services. It is too easy to

fault the assessments of family resources. Assessment is critical, as has been

presented earlier; however, assessment without intervention is of questionable

value.169

Family caregivers often react with a mixture of relief and grief when a loved one

dies. Death provides relief from the relentless strain of caregiving and alleviates

the suffering of the care recipient, but also represents a significant loss to the

family and to the primary caregiver. Extensive caregiving may lead to a depletion

of psychosocial resources, such as loss of roles or social supports, which might

make caregivers even more vulnerable to the effects of bereavement. Some

caregivers may need special help in dealing with grief, and in addressing social

isolation that often occurs with highly stressful caregiving. Grief therapy appears

to be as effective as psychotherapy for other conditions and is especially

indicated when bereaved individuals show signs of complicated grief.131

In the context of chronic illness and caregiving, for example, the family member

may grieve losses before the actual time of death, which can be adaptive. In fact,

while caregiving can be a highly stressful prelude to bereavement, individuals

who experienced the unexpected death of a spouse showed much greater

increases in depression after the death than was found among spouses who had

been caregivers, even under highly stressful circumstances.170,171

In many cases, early psychosocial intervention for caregivers can improve

caregiver depressive symptoms for years after counseling is completed, and even

during the process of bereavement. Caregivers who gain knowledge, skills, and

supports through psychological intervention may find these resources of value

not only while providing active caregiving assistance but also as they face the


challenges of coping with the death of a loved one. All of these experiences have

the potential to affect the course of bereavement, and subsequent reengagement

of the caregiver into a new life without caregiving responsibilities.172

Benefits to the Facility/Professionals

A key benefit to a referring hospital is the ability of the palliative care program to

reduce length of stay for difficult patients who may not be willing to be

discharged without a proper care alternative and to decrease unplanned hospital

readmissions as symptoms are better managed at home. Facing terminal illness

is a difficult process, and family members may be anxious about their ability to

provide adequate care to their loved one. Patients living alone face the same, if

not more anxiety, as they face the prospect of life outside of the hospital under

their own care. A good palliative care program will provide a welcome alternative

to these concerns, as well as an appropriate level of care outside the hospital.

Palliative care programs providing consultations within a hospital will also

decrease the length of stay within the hospital, and particularly within the

Intensive Care Unit, by clarification of treatment goals and symptom

management.139,156,173

By reducing patient and family anxieties as described above, the referring

hospital will find an increase in patient satisfaction. This is due to the ability of

the palliative care program to provide quality care in the patient’s home. The

program will help the patient and their family transition to home, as well as

provide much needed information on the patient’s prognosis and what to expect

as their illness progresses. The comfort of knowing that symptoms are being

controlled in the best way possible provides tremendous relief to patients and

their families, which will help increase overall levels of patient satisfaction.174

As noted above, the ability of the palliative care program to assist in the

transition of the patient and provision of quality care in the patient’s home can


assist in lowering in-hospital mortality rates. Increasingly, however, hospital

mortality rates are being calculated based upon a 30-day window from hospital

admission. The latter types of measures would not be expected as significantly

impacted by palliative care.175

By having certified staff attending to the patient’s palliative needs, like pain

control and symptom management, the potential host facility is addressing

patient needs in the best possible way. In addition, many host facilities recognize

that their medical staff are not inclined or equipped to handle difficult

conversations over the patient’s prognosis or the decision to discontinue

aggressive treatments. As a result, patients and families feel comfortable with

the facility addressing their needs in a personal and caring way, which will result

in increased patient satisfaction for the hosting facility. In addition, with the

guidance of the palliative care staff, patients are offered the information they

need to properly set their future course of treatment.164,176

Palliative care programs have been able to document a reduction in the length of

stay at the host facility as patients and their families feel more comfortable

leaving the host facility on a timely basis. There is not the uncertainty of what to

do after discharge as a good palliative care service will assist the patient and

their family in what types of services are available to them. This is particularly

important in cases where the decision to elect hospice is not the patient’s first

choice. Under a palliative program, those patients could be assisted at home

through home health services until they feel comfortable in electing hospice.

Meanwhile, their pain and symptoms are under control and being actively

managed, which is a true benefit for those not ready to elect hospice, but in need

of those services.38,105,163


Affordable Care Act Reforms

The Affordable Care Act (ACA) of 2010, which was signed into law in March 2010,

is a combined piece of legislation that includes the ACA (HR 3590) and the Health

Care and Education Reconciliation Act of 2010 (HR 4872). Several provisions in

the ACA include demonstration projects aimed at changes to delivery and

payment reform that will test and permit a gradual shift from volume-based FFS

payment models to a pay-for-performance or "value-based" purchasing. A

challenge for implementation will be to ensure that reforms do not impose so

radical a system change that providers cannot comply or implement changes

without imposing unsustainable risk. The demonstration projects are therefore

geared toward exploring ways for providers, systems, and payers to gradually

transition to new care delivery and payment models in order to build the capacity

to adapt to the changes.177

Although provisions related to access to quality palliative care were removed

from the original health reform bills due in part to concerns over perceptions of

the care provided, several provisions related to payment and quality reform that

impact palliative and hospices services remain. What does remain is a new

provision (Section 2302 "concurrent care for children"), under which children are

able to access hospice and curative care simultaneously.178

Demonstration projects for concurrent care in adult populations are also being

evaluated. While not mandated in the ACA, the law offers other opportunities for

palliative care and hospice programs to participate in the planning, development,

and implementation of new delivery and payment models such as accountable

care organizations (ACOs), patient-centered medical homes, and the bundling of

payments for a single episode of healthcare. These models aim to improve the

quality of care and control the costs for high-need, high-risk patient populations

by focusing efforts on the very approaches to care and quality outcomes that

palliative and hospice care has long demonstrated. In doing so, these models aim


to shift provider incentives from volume-based FFS models to payment based on

quality of care.179

The ACA lays out a plan for over $424 billion in net Medicare spending reductions

that will be implemented over a 10-year period. This will reduce the annual

payment updates to hospitals and other providers as well as payments to

Medicare Advantage plans. In addition, the law establishes several new policies

and programs that are intended to further reduce costs and improve quality of

patient care.180

Accountable Care Organizations

Accountable Care Organizations consist of a group of providers (clinicians,

hospitals, specialists, and other providers) that work together to provide and

coordinate care for a specified patient population across settings. Together, the

providers accept joint responsibility for quality and costs for the identified

population. The Medicare Shared Savings Program was created to help Medicare

fee for service (FFS) providers become an ACO.181

The Pioneer ACO Model, which is operated by the Centers for Medicare &

Medicaid Services (CMS) Innovation Center, is designed for healthcare

organizations and providers that have demonstrated excellence in integrated

coordination of care. Thirty-two Pioneer ACOs will participate on a faster track to

move toward transitioning from FFS payments to a population-based model,

meaning there would be a single price assigned for the healthcare services

needed by a specific group of patients, and a reduction in FFS payments.182

Primary Care Medical Home

The primary care medical home (PCMH) is defined by the Agency for Healthcare

Research and Quality (AHRQ) as a medical home - the model or organization of

primary care - that delivers core functions of primary health and includes five


functions and attributes: 1) comprehensive care, 2) patient-centered,

3) coordinated care, 4) accessible services, and 5) quality and safety.107

The PCMH is accountable for meeting the majority of a patient's physical and

mental health needs and recognizes that the delivery of comprehensive care

requires a team approach. Attention to the patient's and family's unique needs,

culture, values, and preferences is paramount, and measures are taken to ensure

they are fully informed, and the plan of care is meaningful to them.178

The PCMH strives to coordinate care across a healthcare system, especially

during transitions between sites of care. Clear communication between patient,

family, and providers is stressed, and efforts are made to improve access and

achieve shorter waiting times for healthcare needs. The PCMH measures quality

and improvements, including responses to patient experiences and satisfaction,

and data are shared with the public.183

Bundled Payment

Bundled payments involve reimbursement in a single, comprehensive payment

for all services involved in the patient's care for a specific medical condition.

Distinct goods and services for a given condition and across settings are

"bundled" into a payment package that shifts incentives from FFS models toward

payment based on the quality of services and increased efficiency.184

The new bundled payment models ensure that both payer and provider share the

financial risks and allow for significant flexibility regarding timeframes for an

episode and services covered. If the costs of care are less than the bundled

payment amount, the providers keep the difference. If costs exceed payment,

providers absorb the loss. For some proposed models, such as ACOs, savings are

shared by all entities involved. Proponents suggest that the bundled payment


model will lead to more judicious use of health services and improved care

quality.179

The Affordable Care Act addresses some aspects of end of life care; however, it

falls short in making services for the dying a priority. Palliative care for the

chronically ill is not a universally reimbursable expense. It is often a service that

hospitals provide to patients, and the service is deemed valuable and sustainable

because of the overall cost savings in health care expense to the institution.

While palliative care is the type of care that is offered in hospice, there is growing

practice of using palliative care to help patients with chronic illness, of which

cancer is one.

There are currently no universal standards and widely accepted protocols for

palliative care in both hospitals and nursing homes. While health reform did not

specifically address palliative care as a distinct service from hospice care, there is

a need to have Federal agencies develop a research agenda on palliative care to

address issues such as the development of practice guidelines and methods of

quality improvement, as well as the exploration of reimbursement options. There

is not only a cost savings associated with chronic illness and palliative care, but

also, and more importantly, the improved quality of life for the patient that will

be a direct result of this prioritization, a point which is often left out of many

policy discussions.180,183

Although not mandated in the ACA, the new law does enable the integration and

participation of palliative care and hospice programs as a component of the new

delivery and payment models, such as ACOs, PCMHs, and the bundling of

payments for a single episode of health care. Each of these models aims to

improve quality and control cost for high-need patient populations by 1) focusing

on patient-centered, goal-driven, and intensive care coordination, 2) the

identification and treatment of problems before crises prompt preventable


emergency department visits or hospitalizations, and 3) shifting provider

incentives from fee-for-service drivers of quantity to payment based on quality.

Despite the potential for palliative care and hospice care to enhance the ability of

new delivery and payment models to improve quality and reduce cost, there is as

yet no mandate for their inclusion and no certainty about the likelihood of their

integration in the future. While there certainly needs to be a shift in physician

education and practice around making recommendations for EOL services, there

are still relevant provisions of the Affordable Care Act that may have an impact

on cancer patients and hospice care.107,177,181,182

Palliative Care Payment

One of the key challenges for palliative care programs is financial sustainability.

Historically, most hospice and home health agencies have looked to established

government payment mechanisms to fund palliative care services. These sources

are Medicare Part B payment for physician, nurse practitioner (NP), psychologist

and limited situations of Licensed Clinical Social Worker (LCSW) services, home

health reimbursement or concurrent hospice care reimbursement available

through Medicaid for pediatric patients or via demonstration projects. These

sources rarely cover the full cost of providing palliative care services. Therefore,

providers are increasingly looking to other sources of funding to supplement

traditional payment streams.

These additional sources of funding include: grants, commercial insurance

contracts, arrangements with hospitals or health systems, arrangements with

ACO’s or other bundled payment payers, or private pay (concierge) models. All of

these sources usually entail some restrictions, such as limited duration, limited

target populations, application for limited funds, and/or other aspects that

require initiative and negotiation. These sources of funding are usually premised

on the ability of palliative care to avoid cost that would otherwise be incurred

under other payment models, especially long lengths of stay in hospitals and ICU


level of care days. This ability for palliative care to result in system-wide cost

savings and/or improved outcomes is helping to fuel the growth of palliative care

programs, but, nonetheless, makes it difficult to justify palliative care on its own

as a stand-alone service line.185

Medicare Beneficiaries

There are 40 million family caregivers in the U.S., defined as anyone who

provides physical or emotional care for an ill or disabled loved one at home. For

those caregivers dealing with loved ones with end-stage terminal illness, hospice

services provide physical and emotional support for patients, caregivers and

loved ones.186 More than 90% of hospice patients are Medicare beneficiaries

using the Medicare hospice benefit, originally passed by Congress in 1982 and

signed into law by President Ronald Reagan. Medicare is a separate entity from

the ACA. Reform or repeal efforts to the ACA will not affect Medicare.187

A patient is eligible for hospice care if two physicians determine that the patient

has a prognosis of six months or less to live. Patients must be reassessed for

eligibility at regular intervals, but there is no limit on the amount of time a

patient can spend under hospice care. In 2014, an estimated 1.6–1.7 million

patients received hospice services. According to the Medicare Payment Advisory

Commission (MedPAC), 47.3 percent of Medicare decedents utilized hospice care

in 2013.188

Historically, Medicare pays hospice programs a flat, per-diem rate that covers all

aspects of the patient’s care related to the terminal prognosis, including all

services delivered by the interdisciplinary team, drugs, medical equipment and

supplies. The Medicare Hospice Benefit covered 85.5 percent of hospice patients

in 2014. While the number of beneficiaries using hospice has more than doubled

since 2000, hospice comprises only 2 to 3 percent of total Medicare expenditures.

For the first quarter of federal fiscal year 2016 (FY2016), the routine home care


rate was $159.34 per day. Beginning January 1, 2016, hospices experienced a

new two-tiered payment model for patients served under routine home care.

Hospices are now reimbursed $183.17 per day for the first 60 days of a patient’s

care. The routine home care rate has dropped to $143.94 per day for days sixty-

one and forward. Also beginning January 1, 2016, a service intensity add-on

(SIA) payment is applied for visits conducted by an RN and/or social worker for

up to 4 hours a day (combined) during the last seven days of a hospice patient’s

life. To qualify for SIA payments for a patient’s care, the patient must be

receiving routine home care, and the RN and/or social worker must provide direct

patient care. The SIA payment equals the continuous home care hourly rate, and

is disbursed in addition to the routine home care rate for the days the RN and

social worker visits are made.189-191

Medicare hospice requirements around certification and recertification, as well as

medical review of patients, have laid the regulatory groundwork to better ensure

that appropriate and eligible patients are served by hospice, and that hospice

programs are able to provide the quality that patients and families desire at the

end of life. Hospice must complete a standardized Hospice Item Set (HIS) for all

patients admitted to hospice. Hospices submit HIS data online on a rolling basis

within 30 days of each patient’s admission and discharge.

The HIS includes a set of data elements that CMS will use to calculate scores for

the 7 NQF endorsed quality measures. Hospices that failed to report quality data

via the HIS in 2014 will see their market basket reduced by 2 percent in 2016.

Filing of Notice of Election (NOE) and Notice of Termination/Revocation (NOTR)

Effective October 1, 2014, hospices have a maximum of 5 days to submit the

NOE and/or NOTR and have the form(s) accepted by their Medicare contractor.

Late filing of the NOE will result in the hospice remaining responsible for


providing all care and services as detailed in the plan of care but without

reimbursement from the Medicare Hospice Benefit for those days.

Focused Medical Review

The ACA incorporated a 2009 MedPAC recommendation that hospice programs

with a high percentage of patients qualifying as long lengths of stay (more than

180 days) should have additional oversight through focused medical review.

NHPCO supports this recommendation. The IMPACT Act provided technical fixes

to the ACA language and the provision is now ready for CMS to set the threshold,

or percentage, which will trigger medical review.16,107,188

Medicare Part A & B

While Medicare Part A does not have a dedicated palliative care benefit like the

hospice benefit, there are home health care agencies that will provide palliative

care and bill Medicare under Part A for services that could include nursing, social

work, and spiritual care visits as part of the home health episode. Home health

services are covered 100% under Medicare Home Health Prospective Payment

System. Rates are issued annually and paid using the Home Health Resource

Grouper for patients who are homebound with a skilled need and meet criteria of

care. These programs can experience financial and quality outcome challenges,

as the program will have frail patients in a state of decline having negative

outcomes, such as falls, increased weakness, failure to meet goals, and failure to

improve. These patients often end up going in and out of the emergency room, or

can be admitted numerous times for inpatient care, resulting in Low-Utilization

Payment Adjustments (LUPAs) and further negative outcomes, such as wounds

due to skin breakdown and falls. It can also be difficult to get physician orders for

these patients who would need frequent order changes due to pain, nausea, etc.

When a Medicare beneficiary is receiving skilled services from a Medicare certified

home health agency (HHA), and the beneficiary has been diagnosed with a life


limiting terminal illness, but chooses to continue curative treatments, thereby

rendering the patient ineligible for the Medicare hospice benefit, the HHA may

contract to purchase specialized pain control services from the hospice provider.

The HHA could then enter into a contractual arrangement with a Medicare-

certified hospice to purchase specialized nursing services. The hospice would bill

the HHA, and the HHA would pay the hospice provider directly. Neither provider

type would be allowed to bill Medicare separately for the contracted services

(which, in this example, are home health services, and, therefore, included in the

HHA’s episode payment). In this example, the HHA would maintain a medical

record on the patient, and the hospice submits any documentation related to pain

management to the HHA.

Medicare does not use the term ‘palliative’ so coverage is provided by standard

Medicare Part B benefits for these specific services. Under Medicare, beneficiaries

may see a physician or NP as many times as they wish during a year. However,

patients may be responsible for a 20 percent co-payment for every visit after

paying the deductible of $147 (2015). Part B Medicare imposes no restrictions on

the type or number of physicians a beneficiary may visit. Medicare does restrict

the higher home visit reimbursement codes for patients who are homebound. For

a hospice that provides physician services for palliative care, the hospice must

enroll in Medicare Part B by filing an application with CMS. The enrollment

process includes obtaining a National Provider Identifier (NPI) number and

completion of an application through the Provider Enrollment, Chain and

Ownership System (PECOS) (CMS 855I and CMS855R) and billing trading

agreements. For newly enrolling, reenrolling/re-validating, or adding a new

practice location, the application fee for 2015 was $553.187,192,193

Effective October 1, 2009, Medicare issued a HPC (Hospice Palliative Care)

specialty code (17) for physician palliative services. In order to be able to bill

Medicare for palliative care services, physicians must have Hospice and Palliative

Care listed as a specialty in the National Plan & Provider Enumeration System


(NPPES). In order to add this specialty, physicians will need to file a new

CMS855I enrollment form with Medicare. While specialty code 17 provides

greater specificity for data collection, there is no additional reimbursement above

what would otherwise be available under Medicare Part B billing. Some key

features of Medicare Part B fee-for-service of physicians, NPs, and

LCSW:188,191,194

• Palliative care is covered for Part B physician services at 80 percent of the

usual and customary fees

• Patient is responsible for 20% of the coinsurance unless covered by

Medicare supplement plan

• Subject to annual physician fee schedule

• Evaluation & Management (E&M) billing codes must be supported by the

clinical documentation

• Medicare also covers services and supplies furnished as “incident to a

physician's professional service, of kinds which are commonly furnished in

physicians' offices and are commonly either rendered without charge or

included in the physicians' bills.” To be billed as “incident to,” the services

of non-physician practitioners, such as NPs, must meet four criteria: 1) The

services must be performed under a physician's “direct supervision”,

2) The services must be performed by employees (including leased

employees) of the supervising physician, the physician's group or the

physician's employer, 3) The physician must initiate the course of

treatment of which the NP's services are a part, and 4) The physician must

perform subsequent services of sufficient frequency to reflect the

physician's continuing active participation in managing the course of

treatment.

• An NP's services (other than “incident to” services) are reimbursed at 85

percent of the amount shown on the participating physician fee schedule

• To bill Medicare for NP services (other than “incident to” services), each NP

needs a provider number


• NPs are allowed either to bill Medicare directly under their own provider

numbers or to reassign their billing rights to employers or other contracting

entities. For a physician practice to receive payment for services provided

by NPs whom it employs or contracts with, the NPs must reassign their

payment rights to the practice

• Healthcare Common Procedure Coding System (HCPCS) modifiers to the

Common Procedural Terminology (CPT) codes are required for NP services,

such as AK (NP, rural, team member), AV (NP, rural, not a team member),

and AL (NP, non-rural, team member)

• LCSW psychotherapeutic services are billable with DSMIV diagnoses.

• Claims are submitted on a 1500 claim form

• CPT coding is based upon setting and either complexity or time (the latter

when coordination of care or counseling comprises 50 percent or more of

the encounter).

When hospice coverage is elected, the beneficiary waives all rights to Medicare

Part B payments for professional services that are related to the treatment and

management of his/her terminal illness during any period his/her hospice benefit

election is in force, except for professional services of an independent attending

physician who is not an employee of the designated hospice nor receives

compensation from the hospice for those services.

These independent attending physician services are billed through Medicare Part

B to the Medicare contractor, provided they were not furnished under

arrangement with the hospice. The independent attending physician codes

services with the GV modifier “Attending physician not employed or paid under

agreement by the patient’s hospice provider” when billing his/her professional

services furnished for the treatment and management of a hospice patient’s

terminal condition. The Medicare contractor makes payment to the independent

attending physician or beneficiary, as appropriate, based on the payment and

deductible rules applicable to each covered service. When the attending physician


is an employee of the hospice, he/she cannot bill Medicare Part B directly. In this

case, the physician bills the hospice provider who, in turn, bills Medicare and

reimburses the physician. When the independent attending physician furnishes a

terminal illness related service that includes both a professional and technical

component (i.e., X-rays), he/she bills the professional component of such

services to the Medicare contractor on a professional claim and looks to the

hospice for payment for the technical component. Likewise, the independent

attending physician, who may be a NP, would look to the hospice for payment for

terminal illness related services furnished that have no professional component

(i.e., clinical lab tests).

In the case of palliative care services, multiple scenarios can exist. If the

palliative care physician is both an independent physician and designated by the

patient as the primary care provider, they bill Medicare Part B directly, as noted

above. If the palliative care physician is the primary care provider and related to

the hospice program, then they must bill the hospice program which bills

Medicare under Part A. These fees are included in the Medicare Hospice

Aggregate Cap Calculation. If the palliative care physician is not the primary care

provider, but is brought into the case as a consulting physician, the physician

should first have a Consulting Agreement with the hospice, and should bill the

hospice directly. Then the hospice will bill Medicare for the service (which would

also be included in the Aggregate Cap).16,188,195

Medicare covers a one-time only payment on behalf of a beneficiary who is

terminally ill (defined as having a prognosis of 6 months or less if the disease

follows its normal course), has no previous hospice elections, and has not

previously received hospice pre-election evaluation and counseling services.196

HCPCS code G0337 “Hospice Pre-Election Evaluation and Counseling Services” is

used to designate that these services have been provided by the medical director

or a physician employed by the hospice. Hospice agencies bill their home health


and hospice Medicare contractor directly using HCPCS G0337 with Revenue Code

0657. No other revenue codes may appear on the claim. Claims for “Hospice Pre-

Election and Counseling Services,” HCPCS code G0337, are not subject to the

editing usually required on hospice claims to match the claim to an established

hospice period. Further, contractors do not apply payments for hospice pre-

election evaluation and counseling consultation services to the overall hospice

cap amount.187

Medicare must ensure that this counseling service occurs only one time per

beneficiary by imposing safeguards to detect and prevent duplicate billing for

similar services. If “new patient” physician services (HCPCS codes 99201-99205)

are submitted by a Medicare contractor to the Common Working File (CWF) for

payment authorization, but HCPCS code G0337 (Hospice Pre-Election Evaluation

and Counseling Services) has already been approved for a hospice claim for the

same beneficiary, for the same date of service, by the same physician, the

physician service will be rejected by CWF, and the service shall be denied as a

duplicate.192,195

Medicare Advantage

Medicare Advantage (MA) plans are required to cover the same services as

traditional Medicare and to apply no more restrictive coverage criteria. The

relationship between providers and MA plans is contractual, however, and

providers will need to carefully review their contracts with each MA plan to

ascertain payment amounts and pre-requisites such as prior approval.

Unlike Medicare fee-for-service, Medicare Advantage gives physicians a financial

incentive to recommend hospice for patients nearing the end of life because,

under existing law, when plan members enroll in hospice, fee-for-service

Medicare becomes the payer. This hospice “carve-out” makes it attractive for a

plan to shift patients likely to be high cost from its rolls to the Medicare Hospice


Benefit, but also decreases the incentive for the plan to develop high-quality

palliative care services. As of the date of this publication, federal policymakers

are evaluating whether this “carve-out” should continue.

Medicare Part C Medicare Advantage Plans:197

• Coverage must be same as Part B

• Physicians must contract with the Part C carrier

• Services subject to carrier fee-for-service rates, authorization, and billing

requirements

Non-Medicare Beneficiaries

Palliative care services, while not defined per se, can be billed to the extent that

they qualify as reasonable and necessary under each state’s plan. Medicaid rates,

however, may be less than other payers. Some states are considering a

“palliative care bundle” under Medicaid managed care or innovation grants.

Key Features of Medicaid Palliative Services:100,198

• Professional services are dependent on state plans, provider agreements

and rate setting.

• Medicaid third party administrators (TPAs) or Managed Care Organizations

(MCOs) authorize palliative services subject to payment review and billing

requirements, such as authorizations and timely filing.

• Future payment reform with CMS State Innovations Models (SIM) could

change how Medicaid reimburses palliative care services.

• SIM multi-payer payment and delivery models offer the opportunity to

accelerate health transformation. These efforts are designed to reduce

reliance on payment methodologies based on volume and encourage

movement toward payment based on outcomes by reinforcing the

expectation that providers and payers must be engaged in order to create

meaningful delivery and payment system reforms.


Private insurance plans, generally offered as Employer Group Health Plans, define

patient eligibility, palliative care benefits, physician/NP rates, and billing

requirements. Provider agreements stipulate if authorization is needed to bill.

Timely filing limits can be much shorter than other payers, increasing exposure to

claims denials. New models for advanced disease care that allow patients to

receive hospice-like services and disease treatments at the same time are being

offered by some commercial plans. These benefits could expand palliative

services to covered members.

Palliative care partnerships are forming to offer payment and incentives to

providers that integrate palliative care practices and demonstrate associated

quality outcomes. The palliative care partnerships strive to ensure that palliative

care and related services (such as advance care planning discussions) are defined

as medically necessary and to enhance member benefits and provider

reimbursements to reduce financial and awareness barriers to palliative care

services. Key features of the palliative care partnership include:

• Medical policies should cover palliative care home visits for both physicians

and non-physician team members.

• Benefits should include hospice and palliative care services offered

concurrently with medical treatment, even if a reasonable limit is placed on

those services.

• Preauthorization policies should support early and ongoing as-needed

engagement of palliative care services.

• Reasonable payment fees for palliative care specialists to include palliative

care team members, such as social workers, chaplains, and dedicated care

coordination service professionals.

• Adherence to palliative care standards and the achievement of specific

related outcomes (such as the conduct and documentation of goals-of-care

conversations, assessment and treatment of distressing symptoms, safe

opioid practices, appropriate and timely hospice referrals, and routine

assessment of and support for family caregiver needs).


• Inclusion of all providers (i.e., primary care, hospice, specialist and

palliative care providers) and care delivery team members in payment

innovation program incentives for the outcome measures listed

above.59,180,199

All Veterans’ Administration (VA) facilities have a Palliative Care Consult Team

(PCCT) as a resource for hospice and palliative care provided in the VA facility

and coordinated in the community. In the past, the VA furnished home hospice

services through a limited fee for service program using Medicare LUPA rates.

Today, all enrolled veterans are eligible for a comprehensive array of needed in-

home services. These services in VA’s Medical Benefits Package, including hospice

and palliative care, are playing an increasingly important role in the VA’s

integrated health care delivery system.32

One out of every four dying Americans is a veteran. Veterans often carry

experiences from their service that present unique challenges, and,

unfortunately, many of them may not know about or have access to hospice and

palliative care. In an effort to address these concerns and respond to the needs

of veterans, the National Hospice and Palliative Care Organization partnered with

the Department of Veterans Affairs in 2010 to create a program called We Honor

Veterans. Another VA program, Reaching Out, provided a grant opportunity

sponsored by NHPCO, in collaboration with the Department of Veterans Affairs,

for hospice providers who are experienced in providing quality hospice and

palliative care for rural and homeless veterans.200

Under current traditional fee-for-service provider contracts, physician and NP

reimbursements generally do not cover the cost of these professional palliative

consultation services. Hospices or home health agencies that elect to provide

palliative services in hospitals, nursing facilities, or the patient’s homes are faced

with absorbing the additional costs or finding funding to subsidize the losses.

Hospices and home health agencies that provide palliative services are now


increasingly likely to negotiate with hospital systems, free-standing hospitals, and

nursing facilities to cover the costs of palliative consultation services not covered

by third party payers. As palliative care programs demonstrate reduced overall

costs for these institutions, such as outsourcing cost-effective palliative services

or reducing readmission penalties, they are in a favorable position to negotiate

contract rates that cover the full cost of palliative services.201,202

Care Planning Act

The Care Planning Act establishes Medicare reimbursement for healthcare

professionals and provides a voluntary and structured discussion about the goals

and treatment options for individuals with serious illness, resulting in a

documented care plan that reflects the informed choices made by patients in

consultation with members of an interdisciplinary team, faith leaders, family

members and friends.

In February 2015, the U.S. Department of Health and Human Services (DHHS)

announced a new multipayer payment and care delivery model to support better

care coordination for cancer care as part of the Department’s ongoing efforts to

improve the quality of care patients receive and to spend health care dollars

more wisely, contributing to healthier communities. The initiative will include 24-

hour access to practitioners for beneficiaries undergoing treatment, and an

emphasis on coordinated, person centered care, aimed at rewarding value of

care, rather than volume. The Oncology Care Model encourages participating

practices to improve care and lower costs through episode-based, performance-

based payments that financially incentivize high-quality, coordinated care.

Participating practices will also receive monthly care management payments for

each Medicare fee-for-service beneficiary during an episode to support oncology

practice transformation, including the provision of comprehensive, coordinated

patient care.153,164


Reporting on Quality

Information about the quality of palliative care and hospice programs is limited,

but both the United States and other nations are investing in outcome measures

for quality improvement and public reporting. The National Quality Forum (NQF)

Framework and Preferred Practices include a number of relevant structure and

process measures, but their correlation with relevant outcomes (symptom

burden, caregiver burden, satisfaction, transitions, cost) is not known.

Investigators at Brown University, along with the National Hospice and Palliative

Care Organization (NHPCO), developed a survey measuring the postdeath

hospice family evaluation of care (the Family Evaluation of Hospice Care or

FEHC), which has been endorsed by the NQF. This voluntary survey measures the

quality of hospice interventions directed toward the family as well as the family's

perspective of the quality of care received by the patient.

Individual hospice programs use the results of these NHPCO-administered

surveys to improve their performance; they are not yet mandatory or publicly

reported. While the perspective of the family is obviously a central component of

quality, it may not fully reflect the patient's actual experience. For example, in

studies that compare family and patient ratings of symptom intensity, families

rate pain higher than patients themselves do, and patients rate family distress

higher than family members do. Given these patients' advanced stage of illness,

there are inherent difficulties in fashioning an empirical tool that is feasible,

actionable, and patient centered to directly assess the patients' perceptions of

hospice or palliative care. The Center for Medicare and Medicaid Services (CMS)

of the U.S. Department of Health and Human Services does not currently require

quality reporting from hospice, unlike other major Medicare provider groups

(nursing homes, rehabilitation facilities, hospitals, certified home health

agencies), although a Quality Assessment and Performance Improvement (QAPI)

program has been required as a hospice condition of participation in Medicare

since 2008.26,101,203


The 2010 Affordable Care Act (PL 111–148 section 3004), however, requires

hospice to report to CMS on quality measures or face a 2% reduction in

payments. Measures are to be endorsed by a “quality measure consensus-based

entity” and must be published no later than October 1, 2012, for reporting to

CMS beginning October 1, 2013. Through contracts with its state-based quality

improvement organizations, CMS has initiated several projects to develop and

field-test a series of hospice and palliative care measures (PEACE Project), as

both stand-alone measures and part of the validation of the CARE instrument

(Continuity Assessment Record and Evaluation), a uniform cross-setting quality

instrument developed by CMS. A new NQF call for hospice and palliative care

measures was released in April 2011 under a contract from CMS as required by

the Affordable Care Act (H.R. 3590 section 3004).184

As with hospice, palliative care programs currently have no external quality-

reporting requirements. The American Hospital Association's annual survey

contains a yes/no question on presence of a hospital palliative care program but

does not ask for further information. The Center to Advance Palliative Care

(CAPC) launched a program registry in 2009 for voluntary reporting on palliative

care structure and process measures derived from the NQF Framework and

Preferred Practices. Although data from the registry are not currently publicly

available, they are promised in 2012, assuming there are enough registrants to

allow valid comparison data. A series of consensus guidelines on structure and

process measures for hospital consultation and inpatient-unit programs, derived

from the NQF Framework, were developed and published by the Center to

Advance Palliative Care between 2008 and 2010, but they have been neither

field-tested nor validated against patient level and efficiency outcomes.

The U.S. Department of Veterans Affairs developed measures that evaluate the

incidence of discussions on goals, chaplain visits, and advance directives. These

measures then are used to evaluate palliative care teams in VA hospitals.

Importantly, The Joint Commission (TJC), which accredits most hospitals in the


United States, created and field-tested a voluntary certificate program derived

from the NQF Framework for palliative care, which it plans to release in

September 2011.180,199

Standardized empirical quality metrics that can be used for either internal or

external quality-reporting and pay-for-performance methods are needed. As with

other clinical outcome measures, quality metrics for palliative care and hospice

should be able to demonstrate a clear link between structure and process and the

relevant clinical and patient-centered outcomes, and the measures should

represent areas that providers can improve.

Barriers To Palliative Care

The primary barriers to receiving quality palliative care and hospice are variability

in access by geographic and other characteristics, an inadequate workforce and

workforce pipeline to meet the needs of patients and their families, the need for

an adequate research evidence base to guide and measure the quality of care,

and the lack of public knowledge of, and demand for, the benefits of palliative

care and hospice.

Workforce Skill

An inadequate medical and nursing workforce with expertise in palliative care is

one of the greatest barriers to access. A report commissioned by the Health

Resources and Services Administration (HRSA) in 2002 projected significant

shortfalls in the nation's number of palliative medicine specialists and called for a

policy focused on increased education and training in palliative medicine across

all clinical specialties serving patients with chronic and serious illness, expanded

funding and reimbursement to attract young physicians into the field, and

examination of the appropriate role of nonphysician professionals (such as nurse

practitioners, clinical social workers, and physician assistants) in strengthening

access to palliative care across health care settings.


Another physician-specific workforce study commissioned by the American

Academy of Hospice and Palliative Medicine in 2010 conservatively estimated a

shortfall of at least 2,787 full-time physicians (or approximately 6,000 palliative

medicine physicians, given the frequency of part-time participation in the field).

This estimate did not factor in the as yet unmet need for access to outpatient

specialist-level palliative care, currently among the greatest barriers to access for

chronically and seriously ill persons who are not in the hospital and are not

eligible for hospice. Because the time and communication-intensive nature of

palliative care precludes standard productivity measures based on the volume of

patients seen, part of the difficulty in expanding workforce capacity is the lack of

appropriate and standardized productivity and compensation models for palliative

care physician and nurse practitioner services in both inpatient and outpatient

settings.111,155

This workforce shortage has also had an impact on the hospice community.

Growth in the number of hospice programs (and patients served) has rapidly

outstripped growth in the number of trained professionals. More recently, the

CMS requirement of face-to-face visits by physicians or nurse practitioners in

order to recertify a patient's continued prognostic eligibility for hospice services

has heightened the mismatch between workforce capacity and clinical need. A

1997 Institute of Medicine (IOM) report entitled Approaching Death: Improving

Care at the End of Life also called for policy changes aimed at strengthening the

palliative care workforce. In part, as a response to the IOM report, in 2006

hospice and palliative medicine was approved by the American Board of Medical

Specialties as a subspecialty of ten parent specialties (including internal

medicine, family medicine, surgery, pediatrics, and neurology). Subsequently,

the Accreditation Council for Graduate Medical Education certified the first

seventy-eight postgraduate fellowship training programs to develop the palliative

medicine specialist workforce necessary to meet the nation's needs.53,204


A continuing barrier to physician specialty training in palliative medicine is the

cap on Medicare-funded graduate medical education (GME) slots in U.S. teaching

hospitals. Despite a 30% growth in the U.S. population and a doubling of the

number of Americans over age sixty-five since 1997, the total number of

Medicare-funded graduate medical education training slots has been capped at

about 80,000 since the passage of the Balanced Budget Act in 1997. At present,

the distribution of GME slots is entirely within the purview of each teaching

hospital and is not federally mandated. Since Medicare is the dominant funder of

graduate medical education in the United States, a new subspecialty like

palliative medicine has little power to secure GME-funded slots from long-

standing and preexisting training programs. As a result, specialty training in

palliative medicine is largely dependent on private-sector philanthropy.24,52,204-206

In recognition of the need for data to inform federal training priorities, the August

2010 U.S. Senate Appropriations Committee report for the Departments of Labor,

Health and Human Services, and Education for 2011 included language in its

Health Professions Workforce Information and Analysis section calling for HRSA-

sponsored studies on the adequacy of the palliative care workforce:108

The (U.S. Senate Appropriations) Committee is aware that hospice

and palliative medicine [HPM] improves quality, controls cost and

enhances patient/family satisfaction for the rapidly expanding

population of patients with serious or life-threatening illness.

Therefore, the Committee encourages HRSA to study workforce

trends, training capacity and need for HPM physicians, physician

assistants and nurse practitioners in our Nation's academic medical

centers, hospice organizations and palliative care programs.

Access

Until recently, palliative care services were typically available only to patients

enrolled in hospice. Now, however, palliative care programs are found


increasingly in hospitals — a main site of care for the seriously ill and, on

average, the site of death for 50% of adults nationwide — as well as in other

settings. In 2009, 62% of U.S. hospitals (with at least 50 beds) and 84% of

hospitals with more than 300 beds reported having a palliative care program,

which is an increase of 134% from 2000.32

The 47% growth in the number of hospice programs and the 74% increase in the

number of persons served by hospice in the United States in the last ten years

have been equally dramatic. In 2009, there were 3,400 programs (93% of which

are Medicare certified) serving approximately 1.56 million Americans, primarily in

their homes (56% of days), nursing homes (29% of days), or assisted living

facilities (10.9% of days). In 2009 more than 40% of Medicare decedents used

hospice at some point in their care, an increase from 23% in 2000. More than

80% of hospice beneficiaries are over age sixty-five, and more than one-third are

over eighty-five.

In tandem with the aging of the hospice and U.S. population, patterns of

diagnosis have changed. Ten years ago the majority (53%) of hospice patients

died from cancer, while by 2008 only 31% had cancer and 69% died from chronic

debilitating diseases such as frailty, atherosclerotic and respiratory disease, and

dementia, for whom the art and science of predicting prognosis is considerably

more uncertain. These shifts in diagnoses reflect a pattern of hospice utilization

increasingly correlated with the leading causes of death (cancer accounts for

fewer than 25% of deaths in the United States), suggesting that hospice

providers are responding to the needs of Medicare beneficiaries.11,57,89

Access to palliative care and hospice programs is highly variable across the

country. For-profit, southern U.S., and small and safety-net hospitals (fewer than

100 beds) are less likely to report hospital palliative care programs, compared

with not-for-profit hospitals, hospitals outside the South, and larger hospitals.

Even in settings in which a palliative care team is available, there is a great deal


of variability in the services to which patients have access, ranging, for example,

from a half-time nurse to a full interdisciplinary palliative care team. The

presence of an adequately staffed palliative care team by itself, however, does

not ensure access to palliative care for patients in need of it.

At most U.S. hospitals, referral requires a request for consultation from the

attending physician. In turn, variability in physicians' practice patterns,

awareness, and training is a major contributor to the variability of patients'

access. In an effort to reduce variability in access to palliative care for patients in

need, a recent proposal calling for universal patient screening for the need for

palliative care carried out upon admission to hospital or nursing home and for

outpatients living with serious or complex illnesses could improve access to

palliative care by promoting and standardizing early recognition and

intervention.55,151,164,207 Access to hospice is also highly variable, received by a

low of 6.7% of all deaths in Alaska, to a high of 44.7% in Arizona, based on 2006

data. Reasons for this variation in the utilization of hospice are unclear, as they

do not appear to be related to differences in availability of hospice capacity

across the states.90

Summary

Although palliative care has its roots as a critical part of hospice care, modern

palliative care has evolved to encompass the treatment of non-terminal illness

and injury in an effort to extend both quality and quantity of life. Advancements

in treatment options, along with improved access to medical professionals and

extended benefits for Medicare beneficiaries, have made the field of palliative

care an emerging and rapidly expanding industry. The Affordable Care Act of

2010 had an important impact on the availability of these services, and while

there is room for improvement, the field of palliative care is on track to continue

its growth for years to come.


Palliative care focuses on achieving the best-possible quality of life for patients

and their family caregivers, based on patient and family needs and goals and


symptoms, support decision making and help match treatments to informed

patient and family goals, mobilize practical aid for patients and their family

caregivers, identify community resources to ensure a safe and secure living

environment, and promote collaborative and seamless models of care across a

range of care settings (i.e., hospital, home, and nursing home).

Ideally, palliative care should be initiated concurrently with a diagnosis of a

serious illness and at the same time as curative or disease-modifying treatments,

given the near universal occurrence of patient and family distress and their need

for information and support in establishing achievable goals for the patient's

medical care. The Affordable Care Act did not explicitly address palliative care,

but it did make some potential improvements to hospice services. There are

opportunities in payment reforms and quality improvement initiatives that will

hopefully have a positive impact on cancer patients, both terminal and those who

will become survivors. It is imperative that palliative care be addressed and not

avoided in some of the bundling payment and ACO pilot programs, no matter

how operationally challenging this may be. With a rapidly aging population that

faces more chronic diseases than any previous generations, palliative care cannot

be excluded from legislation and coverage.

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a. six months b. one year c. thirty months d. 24 months



a. True b. False



a. Palliative care affirms life and disregards dying. b. Palliative care is applicable during the last 6 months of an illness. c. Palliative care intends neither to hasten nor postpone death. d. All of the above



a. physical treatment. b. psychological and spiritual health. c. social needs. d. All of the above

5. Palliative intervention is distinct from specialized palliative care

because palliative intervention distinctively concerns intervention

a. when the disease is not curable. b. for cancer patients only. c. that is vital in all clinical practice for illnesses at all stages. d. that is intended to postpone death.


6. _________________ should be part of what all clinicians provide their patients (such as pain and symptom management, discussions about advance care planning).

a. Tertiary palliative care b. Generic palliative care c. Secondary palliative care d. Primary palliative care

7. True or False: Research shows that family stress is highest in end-of-

life decision-making in the absence of advance healthcare directives.

a. True b. False

8. Key features of palliative care include

a. recognition and relief of spiritual/existential suffering. b. affirmation of life and disregard for dying. c. care only during the last 6 months of an illness. d. care that intends to postpone death in the last 6 months of an illness.

9. Cultural diversity issues can become particularly prominent at the

end-of-life as well; by example, _____________ tend to discourage direct disclosure to dying patients and instead encourage decision-making by family members.

a. Caucasians b. Asians c. African Americans d. Europeans

10. By some estimates, the average patient will spend ______ of the

entire healthcare dollars spent during their entire lifetime, during those last thirty months.

a. 75% b. 30% c. 25% d. half


11. The Medicare Hospice Benefit is largely restricted to patients with

a. terminal cancer. b. curative therapies. c. a prognosis of living for six months or less. d. specialist-level palliative care.

12. Which of the following sites in NOT a common location for

administering palliative care?

a. Nursing home b. Hospital c. Patient’s home d. Extended care facility

13. True or False: Hospice care and palliative care are distinctive in that

palliative care ends when hospice care begins.

a. True b. False

14. A patient with a life-threatening illness can receive palliative care

a. once the patient is diagnosed as terminally ill. b. in the final stages of illness. c. if the patient foregoes curative therapies. d. at any time.

15. Hospice care is a specialized type of palliative care for patients

suffering from

a. a life-threatening disease. b. multiple illnesses. c. incurable cancer. d. terminal illnesses with a life expectancy of six months or less.

16. Hospice care is focused on improving quality of life, maintaining

dignity, and making patients as comfortable as possible

a. as curative therapies are explored. b. in order to extend the patient’s life expectancy. c. during the time they have remaining. d. All of the above


17. True or False: Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services.

a. True b. False

18. When a patient enters hospice care,

a. all treatment is discontinued, except pain relief. b. attempts to cure the patient’s underlying illness are stopped. c. the patient may not return to curative therapies. d. the stage of the illness is not a consideration.

19. Today there is approximately one palliative trained physician for

every _____ patients with a serious illness.

a. 100 b. 50 c. 1,200 d. 500

20. Ageism in palliative care refers to

a. elderly patients being marginalized because of their age. b. child care palliative services. c. elderly patients receiving more attention in palliative care. d. end-of-life treatments.

21. True or False: It is important to note that the prognosis-based

distinction between palliative care and hospice is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous.

a. True b. False


22. Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in end of life care for people with dementia, indeed, ____ of patients with dementia were hospitalized in their last year of life.

a. one-third b. 40% c. half d. 67%

23. A good rule is to aim for a ratio of not less than one _________ to

1.5 patients throughout 24 hours.

a. nurse b. registered nurses c. physicians d. specialty nurses

24. The hospice or palliative day care unit is a model of care

designed for patients being cared for

a. in a hospital. b. in palliative care clinics. c. at home. d. in an in-patient unit.

25. True or False: If a patient and the patient’s family agree to "comfort

care," they have agreed to a do-not-resuscitate status.

a. True b. False

26. With hospice or palliative day care facilities and activities, people

with a specific illness, i.e., cancer

a. should be cared for separate from people with other illnesses. b. may be mixed with people with other illnesses. c. are best cared for with other cancer patients. d. do not benefit when mixed with people with other illnesses.


27. To assess the palliative care needs of a local population, the ________________ approach relates local cause-specific mortality in diseases that are likely to benefit from palliative care services to the type and frequency of symptoms experienced by patients suffering from these diseases.

a. comparative b. corporate c. holistic d. epidemiological

28. The main limitation of the ______________ approach (in the

assessment of palliative care needs) is that it does not assess unmet need, which must then be evaluated by other methods.


29. True or False: One of the essential structural elements of palliative

care is access and responsiveness twenty-four hours per day, seven days per week.

a. True b. False

30. In the assessment of palliative care needs, the ____________ needs

assessment approach examines levels of service utilization rather than disease categories.


31. In palliative care, the term _____________ is used in the

implementation of quality improvement and refers to clinicians acting as catalysts for change through modeling of a new way of doing things and providing leadership to others.

a. epidemiological b. holistic c. change agent d. cause-specific


32. In the palliative care model, leadership is filled by ____________ of the interprofessional team who is best educated and qualified to address and focus upon specific patient or family goals.

a. the social worker b. the physician c. the member d. the family member

33. In the assessment of palliative care needs, the _________________

approach involves a structured collection of the knowledge and views of local informants on healthcare services and unmet needs.

a. corporate needs assessment b. comparative needs c. holistic d. epistemological

34. True or False: With the corporate approach for assessing palliative

care needs, those applying the corporate approach must be aware of bias and the politics of vested interests.

a. True b. False

35. Because of the interdependency among interprofessional team

members, professional conflict will inevitably arise, which

a. must be avoided at all times. b. which may stifle the creativity of the team. c. is never beneficial for the interprofessional team. d. may be beneficial and stimulating to the interprofessional team.

36. ___________________ will cause uniformity of the group, which

may stifle the creativity and the professional advancement and development of team members.

a. The corporate approach b. The structured approach c. The change agent d. A lack of respectful conflict


37. Cross-functional or interdisciplinary teams

a. provide a slower response to a patient’s need when a crisis arises. b. stifle creativity. c. provide a unique forum for creative problem solving. d. lead to less flexibility.

38. Recent research suggests that the three concepts of

___________________________ come together in a therapeutic encounter between the nurse and patient in the palliative care setting.

a. corporate, comparative and holistic b. psychological, social and medical c. partnership, intimacy and reciprocity d. interprofessional, teamwork and individual care

39. True or False: It is possible and advisable for palliative care teams to

provide direct care for all patients with palliative care needs.

a. True b. False

40. The basic tasks of a social worker, such as facilitating discharge,

arranging help in the home, etc., can usually be dealt with by someone appropriately trained,

a. who is a family member if unlicensed. b. who must be a medical professional. c. who must be a licensed as a social worker. d. though not necessarily accredited as a social worker.

41. The initial step in developing a palliative care plan is to gather all

relevant information from

a. the patient. b. the patient’s family c. the patient’s medical records. d. All of the above


42. The fundamental aspects of care planning are through a fusion of theory and practice-based learning, with the theory element based on the _____________________________ activities of daily living model.

a. Roper–Logan–Tierney (RLT) b. National Alliance for Caregiving c. Specialist Palliative Care Services (NCHSPCS) d. National Quality Forum (NQF) Guidelines’

43. True or False: Family caregivers account for 80% of all at-home care

services in the U.S.

a. True b. False

44. Palliative care is estimated to save ___________ per year.

a. 1.2 billion b. $500 million c. $100 million d. None of the above

45. Perhaps most importantly, when initiated early in the disease

course, palliative care

a. improves clinical and quality of care outcomes. b. improves quality of care but does not prolong survival. c. improves quality of care but does not reduce cost of care. d. None of the above

46. Thirty percent of all patients who received early palliative care

reported having discussions about their end-of-life care preferences, whereas only _____ of patients receiving standard care alone reported having these discussions.

a. 5% b. 20% c. 14% d. 25%


47. True or False: Several recent studies have demonstrated that both palliative care and hospice care may be associated with a significant prolongation of life for some patient populations.

a. True b. False

48. Under the Affordable Care Act, children are able to access hospice

and _________________ simultaneously.

a. psychological care b. social care c. spiritual care d. curative care

49. A patient is eligible for hospice care if ___________________ that

the patient has a prognosis of six months or less to live.

a. the patient’s primary physician determines b. two physicians determine c. the patient believes d. the patient’s family determines

50. True or False: Medicare does not use the term palliative so coverage

is provided by standard Medicare Part B benefits for these specific services.

a. True b. False


CORRECT ANSWERS:


c. thirty months “People in the U.S., now live an average of thirty months after they receive a terminal diagnosis.”



b. False “… modern palliative care has evolved to encompass the treatment of non-terminal illness and injury in an effort to extend both quality and longevity of life.”



c. Palliative care intends neither to hasten nor postpone death. “Palliative care: … intends neither to hasten nor postpone death.”



a. physical treatment. b. psychological and spiritual health. c. social needs. d. All of the above [correct answer]

“All life-threatening illnesses – be they cancer, neurological, cardiac or respiratory disease – have implications for physical, social, psychological and spiritual health, for both the individual and their family. The role of palliative nursing is therefore to assess needs in each of these areas and to plan, implement and evaluate appropriate interventions.”


5. Palliative intervention is distinct from specialized palliative care because palliative intervention distinctively concerns intervention

a. when the disease is not curable. “With the growth of palliative care as a specialty, there can be some confusion as to what specialist palliative care is and where and how this should be practiced. The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) advocates the palliative care approach as a vital and integral part of all clinical practice, whatever the illness or its stage…. Palliative intervention, on the other hand, concerns intervention when the disease is not curable.”

6. _________________ should be part of what all clinicians provide

their patients (such as pain and symptom management, discussions about advance care planning).

d. Primary palliative care “Primary palliative care should be part of what all of clinicians provide their patients (such as pain and symptom management, discussions about advance care planning).”

7. True or False: Research shows that family stress is highest in end-of-

life decision-making in the absence of advance healthcare directives.

a. True “Research shows, however, that family stress is highest in the absence of advance directives, Stress is lower when verbal advance directives guide the family, and lowest when written advance directives are in place.”

8. Key features of palliative care include

a. recognition and relief of spiritual/existential suffering. “Key Features of Palliative Care: … Recognition and relief of spiritual/existential suffering.”


9. Cultural diversity issues can become particularly prominent at the end-of-life as well; by example, _____________ tend to discourage direct disclosure to dying patients and instead encourage decision-making by family members.

b. Asians “For example, African American older adults are less likely than others to agree to withhold life-sustaining treatment even when quality of life is poor, and cultural values among many Asian groups discourage direct disclosure to dying patients and instead encourage decision-making by family members.”

10. By some estimates, the average patient will spend ___ of the entire

healthcare dollars spent during their entire lifetime, during those last thirty months.

a. 75% “By some estimates, the average patient will spend 75% of the healthcare dollars over an entire lifetime during the last thirty months of life.”

11. The Medicare Hospice Benefit is largely restricted to patients with

c. a prognosis of living for six months or less. “The Medicare Hospice Benefit is largely restricted to patients with a prognosis of living for six months or less, if the disease follows its natural course, who agree to forgo therapies with curative intent.”

12. Which of the following sites in NOT a common location for

administering palliative care?

c. Patient’s home “While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team.”


13. True or False: Hospice care and palliative care are distinctive in that palliative care ends when hospice care begins.

b. False “While palliative care is available to any patient with a serious illness, hospice care is a specialized type of palliative care for patients suffering from an incurable illness or multiple illnesses with a life expectancy of six months or less.”

14. A patient with a life-threatening illness can receive palliative care

d. at any time. “Patients can receive palliative care at any time, at any stage of illness whether it be terminal or not.”

15. Hospice care is a specialized type of palliative care for patients

suffering from

d. terminal illnesses with a life expectancy of six months or less. “While palliative care is available to any patient with a serious illness, hospice care is a specialized type of palliative care for patients suffering from an incurable illness or multiple illnesses with a life expectancy of six months or less.”

16. Hospice care is focused on improving quality of life, maintaining

dignity, and making patients as comfortable as possible

c. during the time they have remaining. “Hospice care is focused on improving quality of life, maintaining dignity, and making patients as comfortable as possible during the time they have remaining.”

17. True or False: Where palliative care programs and hospice care

programs differ greatly is in the care location, timing, payment, and eligibility for services.

a. True ”Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services.”


18. When a patient enters hospice care,

b. attempts to cure the patient’s underlying illness are stopped. “By entering hospice, attempts to cure the patient’s underlying illness are stopped.”

19. Today there is approximately one palliative trained physician for

every _____ patients with a serious illness.

c. 1,200 “Despite nearly a doubling in palliative care programs and increases in hospice programs and individuals served, today there is approximately one palliative trained physician for every 1,200 patients with a serious illness.”

20. Ageism in palliative care refers to

a. elderly patients being marginalized because of their age. “Many older people are marginalized and do not receive information about the full range of services or options available. The term ‘a Cinderella service’ has been coined with older people being discriminated on the grounds of age.”

21. True or False: It is important to note that the prognosis-based

distinction between palliative care and hospice is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous.

a. True “It is important to note that the prognosis-based distinction between palliative care (eligibility based on need, no prognostic restriction) and hospice (eligibility based on a prognosis of living less than six months) is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous.”


22. Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in end of life care for people with dementia, indeed, ____ of patients with dementia were hospitalized in their last year of life.

d. 67% “Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in end of life care for people with dementia, indeed, 67% of patients with dementia were hospitalized in their last year of life.”

23. A good rule is to aim for a ratio of not less than one _________ to

1.5 patients throughout 24 hours.

a. nurse “A good rule is to aim for a nurse/patient ratio of not less than one nurse to 1.5 patients throughout 24 hours.”

24. The hospice or palliative day care unit is a model of care

designed for patients being cared for

c. at home. “Hospice/Palliative Day Care Unit: This is a model of care designed for patients being cared for at home (or in the home of a relative or in a Nursing Home/Rest Home).”

25. True or False: If a patient and the patient’s family agree to "comfort

care," they have agreed to a do-not-resuscitate status.

b. False “For example, what does "comfort care" really mean? In reality, it may mean different things to different people. If a family agrees to "comfort care," have they agreed to a do-not-resuscitate status?”


26. With hospice or palliative day care facilities and activities, people with a specific illness, i.e., cancer

b. may be mixed with people with other illnesses. “It does not seem to matter if people with different illnesses are put together – those with cancer mixing easily with those suffering cardiac or neurological problems. Invariably patients discuss with each other what they suffer from, what care they have had and how long they expect to live.”

27. To assess the palliative care needs of a local population, the

________________ approach relates local cause-specific mortality in diseases that are likely to benefit from palliative care services to the type and frequency of symptoms experienced by patients suffering from these diseases.

d. epidemiological “The epidemiological approach makes use of local cause-specific mortality in diseases that are likely to benefit from palliative care services, and then relates this to the type and frequency of symptoms experienced by patients suffering from these diseases.”

28. The main limitation of the ______________ approach (in the

assessment of palliative care needs) is that it does not assess unmet need, which must then be evaluated by other methods.

a. comparative “The comparative needs assessment approach examines levels of service utilization rather than disease categories…. But there are a number of difficulties in this approach. The main limitation is that it does not assess unmet need, which must then be evaluated by other methods.”

29. True or False: One of the essential structural elements of palliative

care is access and responsiveness twenty-four hours per day, seven days per week.

a. True “The essential structural elements of palliative care are the following: … Access and responsiveness twenty-four hours per day, seven days per week.”


30. In the assessment of palliative care needs, the ____________ needs assessment approach examines levels of service utilization rather than disease categories.

a. comparative “The comparative needs assessment approach examines levels of service utilization rather than disease categories.”

31. In palliative care, the term _____________ is used in the

implementation of quality improvement and refers to clinicians acting as catalysts for change through modeling of a new way of doing things and providing leadership to others.

c. change agent “Within every such clinical encounter there exists an opportunity to model the palliative care approach and to act as change agents. The term ‘change agent’ is used in the implementation of quality improvement and refers to clinicians acting as catalysts for change through modeling of the new way of doing things and providing leadership to others.”

32. In the palliative care model, leadership is filled by ____________ of

the interprofessional team who is best educated and qualified to address and focus upon specific patient or family goals.

c. the member “In the palliative care model, leadership is filled by the member of the interprofessional team who is best educated and qualified to address and focus upon specific patient or family goals.”

33. In the assessment of palliative care needs, the _________________

approach involves a structured collection of the knowledge and views of local informants on healthcare services and unmet needs.

a. corporate needs assessment “The corporate needs assessment approach involves a structured collection of the knowledge and views of local informants on healthcare services and unmet needs.”


34. True or False: With the corporate approach for assessing palliative care needs, those applying the corporate approach must be aware of bias and the politics of vested interests.

a. True “The corporate approach is essential if policies to meet unmet needs are to be sensitive to local circumstances. There are, nevertheless, caveats in adopting this approach. Those undertaking the exercise must be aware of bias and the politics of vested interests.”

35. Because of the interdependency among interprofessional team

members, professional conflict will inevitably arise, which

d. may be beneficial and stimulating to the interprofessional team. “Because of the interdependency among interprofessional team members, professional conflict will inevitably arise, which may be beneficial and stimulating to an interprofessional team.”

36. ___________________ will cause uniformity of the group, which

may stifle the creativity and the professional advancement and development of team members.

d. A lack of respectful conflict “Respect and trust in each team member’s skills, knowledge, expertise, and motivation are imperative. Lack of respectful conflict will result in uniformity of the group, which may stifle the creativity and the professional advancement and development of team members.”

37. Cross-functional or interdisciplinary teams

c. provide a unique forum for creative problem solving. “Cross-functional or interdisciplinary teams provide a unique forum for creative problem solving, especially if every member’s contribution is genuinely solicited and respected.”


38. Recent research suggests that the three concepts of ___________________________ come together in a therapeutic encounter between the nurse and patient in the palliative care setting.

c. partnership, intimacy and reciprocity “Nurse–patient relationships are central to the nursing role in palliative care and this relationship should benefit the patient. Recent research suggested that the three concepts of partnership, intimacy and reciprocity come together in a therapeutic encounter between the nurse and patient.”

39. True or False: It is possible and advisable for palliative care teams to

provide direct care for all patients with palliative care needs.

b. False “It is neither possible nor advisable for palliative care teams to provide direct care for all patients with palliative care needs.”

40. The basic tasks of a social worker, such as facilitating discharge,

arranging help in the home, etc., can usually be dealt with by someone appropriately trained,

d. though not necessarily accredited as a social worker. “The basic tasks of a social worker, such as facilitating discharge, arranging help in the home, obtaining financial assistance, making special holiday arrangements etc., can usually be dealt with by someone appropriately trained, though not necessarily accredited or paid as much as a social worker.”

41. The initial step in developing a palliative care plan is to gather all

relevant information from

a. the patient. b. the patient’s family c. the patient’s medical records. d. All of the above [correct answer] “The initial step in developing a care plan is to gather all relevant information from the patient, their family and their medical records.”


42. The fundamental aspects of care planning are through a fusion of theory and practice-based learning, with the theory element based on the _____________________________ activities of daily living model.

a. Roper–Logan–Tierney (RLT) “The fundamental aspects of care planning are through a fusion of theory and practice-based learning. The theory element is based on the Roper–Logan–Tierney (RLT) activities of daily living model for nursing, which is accredited by its use worldwide as a successful framework for all elements of nursing education and care.”

43. True or False: Family caregivers account for 80% of all at-home care

services in the U.S.

a. True “Family caregivers accounts for 80% of all at-home care services in the U.S.”

44. Palliative care is estimated to save ___________ per year.

a. 1.2 billion “Palliative care is estimated to save $1.2 billion per year under the current penetration of services (to approximately 1.5 percent of all hospital discharges at 1,500 U.S., hospitals).”

45. Perhaps most importantly, when initiated early in the disease

course, palliative care

a. improves clinical and quality of care outcomes. “Perhaps most importantly, when initiated early in the disease course, palliative care also improves clinical and quality of care outcomes, and possibly prolongs survival.”


46. Thirty percent of all patients who received early palliative care reported having discussions about their end-of-life care preferences, whereas only _____ of patients receiving standard care alone reported having these discussions.

c. 14% “The study also showed that 30% of all patients who received early palliative care reported having discussions about their end-of-life care preferences, whereas only 14% of patients receiving standard care alone reported having these discussions.”

47. True or False: Several recent studies have demonstrated that both

palliative care and hospice care may be associated with a significant prolongation of life for some patient populations.

a. True “Contrary to widely held assumptions, several recent studies have demonstrated that both palliative care and hospice care may be associated with a significant prolongation of life for some patient populations.”

48. Under the Affordable Care Act, children are able to access hospice

and _________________ simultaneously.

d. curative care “The Affordable Care Act (ACA) of 2010, which was signed into law in March 2010, is a combined piece of legislation that includes the ACA (HR 3590) and the Health Care and Education Reconciliation Act of 2010 (HR 4872)…. Although provisions related to access to quality palliative care were removed from the original health reform bills due in part to concerns over perceptions of the care provided, several provisions related to payment and quality reform that impact palliative and hospices services remain. What does remain is a new provision (Section 2302 "concurrent care for children"), under which children are able to access hospice and curative care simultaneously.”

49. A patient is eligible for hospice care if ___________________ that

the patient has a prognosis of six months or less to live.

b. two physicians determine “A patient is eligible for hospice care if two physicians determine that the patient has a prognosis of six months or less to live.”


50. True or False: Medicare does not use the term palliative so coverage

is provided by standard Medicare Part B benefits for these specific services.

a. True “Medicare does not use the term palliative so coverage is provided by standard Medicare Part B benefits for these specific services.”

References Section

The References below include published works and in-text citations of published works that are intended as helpful material for your further reading.

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HEALTH REFORM AND PALLIATIVE CARE: 2017 …Although palliative care has its roots as an essential part of hospice care, modern palliative care has evolved to encompass the treatment