Palliative and End-of-Life Care

73CHAPTER 12

TABLE 12-1 Ten Leading Causes of Death in the United States and Britain

CAUSE OF DEATH 

UNITED STATES (2019) ENGLAND AND WALES (2019)

NUMBER OF DEATHS,

ALL AGES (%)

NUMBER OF DEATHS, PEOPLE

≥65 YEARS OF AGE

NUMBER OF DEATHS,

ALL AGES (%)

NUMBER OF DEATHS,

PEOPLE ≥65 YEARS OF AGE

All deaths 2,854,838 2,117,332 530,841 449,047

Heart diseasea 659,041 (23.1) 531,583 (25.1) 87,095 (16.4) 74,967 (16.7)

Malignant neoplasms 599,601 (21.0) 435,462 (20.6) 147,419 (27.8) 118,982 (26.5)

Chronic lower respiratory diseases 156,979 (5.5) 133,246 (6.3) 31,221 (5.9) 28,235 (6.3)

Accidents 173,040 (6.1) 60,527 (2.9) 15,141 (2.9) 8999 (2.0)

Cerebrovascular diseases 150,005 (5.3) 129,193 (6.1) 29,816 (5.6) 27,210 (6.0)

Alzheimer’s disease 121,499 (4.3) 120,090 (5.7) 20,400 (3.8) 20,279 (4.5)

Diabetes mellitus 87,647 (3.1) 62,397 (2.9) 6528 (1.2) 5552 (1.2)

Influenza and pneumonia 49,783 (1.7) 40,399 (1.9) 26,398 (5.0) 24,269 (5.4)

Nephritis, nephritic syndrome, nephrosis 51,565 (1.8) 42,230 (2.0) 3575 (0.7) 3323 (0.7)

Intentional self-harm 47,511 (1.7) — 4832 (0.9) 751 (0.2)

q

Calculated using International Classification of Diseases codes I00–I09, I11, I13, I20–I51.

Source: National Center for Health Statistics (United States, 2019), http://www.cdc.gov/nchs; National Statistics (Great Britain, 2019), http://www.statistics.gov.uk.

This change in the epidemiology of death is also reflected in the

costs of illness. In the United States, ~84% of all health care spending

goes to patients with chronic illnesses, and 12% of total personal health

care spending—slightly less than $400 billion in 2015—goes to the

0.83% of the population in the last year of their lives.

In upper-middle- and upper-income countries, an estimated 70% of

all deaths are preceded by a disease or condition, making it reasonable

to plan for dying in the foreseeable future. Cancer has served as the

paradigm for terminal care, but it is not the only type of illness with

a recognizable and predictable terminal phase. Since heart failure,

chronic obstructive pulmonary disease (COPD), chronic liver failure,

dementia, and many other conditions have recognizable terminal

phases, a systematic approach to end-of-life care should be part of all

medical specialties. Many patients with chronic illness–related symptoms and suffering also can benefit from palliative care regardless of

prognosis. Ideally, palliative care should be considered part of comprehensive care for all chronically ill patients. Strong evidence demonstrates that palliative care can be improved by coordination between

caregivers, doctors, and patients for advance care planning, as well as

dedicated teams of physicians, nurses, and other providers.

■ SITE OF DEATH

Where patients die varies by country. In Belgium and Canada, for

instance, over half of all cancer patients still die in the hospital. The

past few decades have seen a steady shift, both in the United States and

other countries like the Netherlands, out of the hospital, as patients

and their families list their own homes as the preferred site of death. In

the early 1980s, ~70% of American cancer patients died in the hospital.

Today, that percentage is ~25% (Fig. 12-1). A recent report shows that

since 2000, there has been a shift in the United States from inpatient to

home deaths, especially for patients with cancer, COPD, and dementia.

For instance, among Medicare beneficiaries, 30.1% of deaths due to

cancer in 2000 occurred in acute care hospitals; by 2009, this figure had

dropped to 22.1%; by 2015, it was 19.8%.

Paradoxically, while deaths in acute care hospitals have declined in

the United States since 2000, both hospitalizations in the last 90 days

of life and—even more troublingly—admission to the intensive care

unit (ICU) in the last 30 days have actually increased. Over 40% of

cancer patients in the United States are admitted to the ICU in their last

6 months of life, and >25% of cancer patients are admitted to the

hospital in the last 30 days.

0.00

5.00

10.00

15.00

20.00

25.00

30.00

35.00

40.00

45.00

50.00

1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019

Decedents, %

Year

Inpatient Hospice facility Decedent’s home

FIGURE 12-1 Graph showing trends in cancer decedents’ site of death 1999–2019. (Source: Centers for Disease Control and Prevention, National Center for Health Statistics.

Underlying Cause of Death 1999-2019 on CDC WONDER Online Database. http://wonder.cdc.gov.)

74PART 1 The Profession of Medicine

The shift in deaths out of the hospital has been accompanied by an

increase in the use of hospice in the United States. In 2000, 21.6% of

Medicare decedents used hospice at the time of death; by 2009, 42.2%

were using hospice; and by 2018, 50.7% of Medicare decedents were

enrolled in hospice at the time of death. Among cancer patients, ~60%

were using hospice at the time of death. Hospice is also increasingly

being used by noncancer patients. Today, cancer patients constitute

~20% of hospice users. But since 2014, the proportion of patients with

other diagnoses using hospice has grown substantially, including those

with circulatory/heart disease (17.4% in 2018 vs 13.8% in 2014), stroke

(9.5% vs 6.2%), and respiratory disease (11.0% vs 9.4%). Of 2018 Medicare hospice decedents, 51.5% died at home, 17.4% in a nursing facility,

12.8% in a hospice inpatient facility, and 12.3% in assisted living.

Unfortunately, significant racial disparities exist in end-of-life care

and the use of hospice, especially for noncancer deaths. Racial and

ethnic minorities are less likely to receive hospice services than white

decedents and are more likely to receive invasive or aggressive care in

end-of-life treatment. Of people who died of head and neck cancers

between 1999 and 2017, African Americans and Asians/Pacific Islanders were less likely to die at home or in hospice. Among Medicare

beneficiaries who had a pancreatectomy for pancreatic cancer and lived

at least 30 days, racial and ethnic minority patients remained 22% less

likely than white patients to initiate hospice before death.

In 2008, for the first time, the American Board of Medical Specialties (ABMS) offered certification in hospice and palliative medicine.

With the shortening of hospital stays, many serious conditions are

now being treated at home or on an outpatient basis. Consequently,

providing optimal palliative and end-of-life care requires ensuring

that appropriate services are available in a variety of settings, including

noninstitutional settings.

HOSPICE AND THE PALLIATIVE CARE

FRAMEWORK

Central to this type of care is an interdisciplinary team approach that

typically encompasses pain and symptom management, spiritual and

psychological care for the patient, and support for family caregivers

during the patient’s illness and the bereavement period.

One of the more important changes in this field is beginning palliative care many months before death in order to focus on symptom

relief and then switching to hospice in the patient’s last few months.

This approach avoids leaving hospice until the very end by introducing

palliative care earlier, thereby allowing patients and families time to

accommodate and transition. Phasing palliative care into end-of-life

care means that patients will often receive palliative interventions long

before they are formally diagnosed as terminally ill, or likely to die

within 6 months.

Fundamental to ensuring quality palliative and end-of-life care is a

focus on four broad domains: (1) physical symptoms; (2) psychological

symptoms; (3) social needs that include interpersonal relationships,

caregiving, and economic concerns; and (4) existential or spiritual needs.

■ ASSESSMENT AND CARE PLANNING

Comprehensive Assessment Standardized methods for conducting a comprehensive assessment focus on evaluating the patient’s

condition in all four domains affected by the illness: physical, psychological, social, and spiritual.

A comprehensive assessment should follow a modified version of

the traditional medical history and physical examination and should

emphasize both physical and mental symptoms. Questions should

aim to elucidate symptoms, discern sources of suffering, and gauge

how much those symptoms interfere with the patient’s quality of life.

Standardized and repeated assessments to evaluate the effectiveness of

interventions are critical. Thus, clinicians should use shorter, validated

instruments, such as (1) the revised Edmonton Symptom Assessment

Scale; (2) Condensed Memorial Symptom Assessment Scale (MSAS);

(3) MD Anderson Brief Symptom Inventory; (4) Rotterdam Symptom

Checklist; (5) Symptom Distress Scale; (6) Patient-Reported Outcomes

Measurement Information System; and (7) Interactive Symptom

Assessment and Collection (ISAAC) tool.

MENTAL HEALTH With respect to mental health, many practices use

the Patient Health Questionnaire-9 (PHQ-9) to screen for depression

and the Generalized Anxiety Disorder-7 (GAD-7) to screen for anxiety.

Using such tools ensures that the assessment is comprehensive and

does not focus excessively on only pain.

INVASIVE TESTS Invasive tests are best avoided in end-of-life care, and

even minimally invasive tests should be evaluated carefully for their

benefit-to-burden ratio for the patient. Aspects of the physical examination that are uncomfortable and unlikely to yield useful information

that change patient management should be omitted.

SOCIAL NEEDS Health care providers should also assess the status

of important relationships, financial burdens, caregiving needs, and

access to medical care. Relevant questions include the following: How

often is there someone to feel close to? How has this illness been for your

family? How has it affected your relationships? How much help do you

need with things like getting meals and getting around? How much trouble do you have getting the medical care you need?

EXISTENTIAL NEEDS To determine a patient’s existential needs,

providers should assess distress, the patient’s sense of emotional and

existential well-being, and whether the patient believes he or she has

found purpose or meaning. Helpful assessment questions can include

the following: How much are you able to find meaning since your illness

began? What things are most important to you at this stage?

PERCEPTION OF CARE In addition, it can be helpful to ask how the

patient perceives his or her care: How much do you feel your doctors

and nurses respect you? How clear is the information from us about what

to expect regarding your illness? How much do you feel that the medical

care you are getting fits with your goals? If concern is detected in any of

these areas, deeper evaluative questions are warranted.

Communication Particularly when an illness is life-threatening,

there exists the potential for many emotionally charged and potentially

conflict-creating moments—collectively called “bad news” situations—

in which empathic and effective communication skills are essential.

Those moments include the sharing of a terminal diagnosis with the

patient and/or family, the discussion of the patient’s prognosis and

any treatment failures, the consideration of deemphasizing efforts to

cure and prolong life while focusing more on symptom management

and palliation, advance care planning, and the patient’s actual death.

Although these conversations can be difficult, research indicates that

end-of-life discussions can lead to earlier hospice referrals, rather than

overly aggressive treatment, ultimately benefiting quality of life for

patients and improving the bereavement process for families.

Just as surgeons prepare for major operations and investigators

rehearse a presentation of research results, physicians and health care

providers caring for patients with significant or advanced illnesses

should develop a standardized approach for sharing important information and planning interventions. In addition, physicians must be

aware that families often care not only about how prepared the physician was to deliver bad news, but also the setting in which it was

delivered. For instance, one study found that 27% of families making

critical decisions for patients in an ICU desired better and more private

physical space to communicate with physicians.

One structured seven-step procedure for communicating bad news

goes by the acronym P-SPIKES: (1) prepare for the discussion, (2) set

up a suitable environment, (3) begin the discussion by finding out what

the patient and/or family understand, (4) determine how they will

comprehend new information best and how much they want to know,

(5) provide needed new knowledge accordingly, (6) allow for emotional

responses, and (7) share plans for the next steps in care (Table 12-2).

Continuous Goal Assessment Major barriers to providing

high-quality palliative and end-of-life care include the difficulty in

determining an accurate prognosis and the emotional resistance of

patients and their families to accepting the implications of a poor

prognosis. A practical solution to these barriers is to integrate palliative care interventions or home visits from a palliative care visiting

nurse months before the estimated final 6 months of life. Under this

Palliative and End-of-Life Care

75CHAPTER 12

TABLE 12-2 Elements of Communicating Bad News—The P-SPIKES Approach

ACRONYM STEPS AIM OF THE INTERACTION PREPARATIONS, QUESTIONS, OR PHRASES

P Preparation Mentally prepare for the interaction

with the patient and/or family.

Review what information needs to be communicated.

Plan how you will provide emotional support.

Rehearse key steps and phrases in the interaction.

S Setting of the

interaction

Ensure the appropriate setting for a

serious and potentially emotionally

charged discussion.

Ensure that patient, family, and appropriate social supports are present.

Devote sufficient time.

Ensure privacy and prevent interruptions by people or beeper.

Bring a box of tissues.

P Patient’s

perception and

preparation

Begin the discussion by establishing the

baseline and whether the patient and

family can grasp the information.

Ease tension by having the patient and

family contribute.

Start with open-ended questions to encourage participation.

Possible questions to use:

What do you understand about your illness?

When you first had symptom X, what did you think it might be?

What did Dr. X tell you when he or she sent you here?

What do you think is going to happen?

I Invitation and

information

needs

Discover what information needs the

patient and/or family have and what

limits they want regarding the bad

information.

Possible questions to use:

If this condition turns out to be something serious, do you want to know?

 Would you like me to tell you all the details of your condition? If not, who would you like

me to talk to?

K Knowledge of the

condition

Provide the bad news or other

information to the patient and/or family

sensitively.

Do not just dump the information on the patient and family.

Check for patient and family understanding.

Possible phrases to use:

I feel badly to have to tell you this, but…

Unfortunately, the tests showed…

I’m afraid the news is not good…

E Empathy and

exploration

Identify the cause of the emotions—

e.g., poor prognosis.

Empathize with the patient’s and/or

family’s feelings.

Explore by asking open-ended

questions.

Strong feelings in reaction to bad news are normal.

Acknowledge what the patient and family are feeling.

Remind them such feelings are normal, even if frightening.

Give them time to respond.

Remind the patient and family you won’t abandon them.

Possible phrases to use:

I imagine this is very hard for you to hear.

You look very upset. Tell me how you are feeling.

I wish the news were different.

We’ll do whatever we can to help you.

S Summary and

planning

Delineate for the patient and the family

the next steps, including additional tests

or interventions.

It is the unknown and uncertain that can increase anxiety. Recommend a schedule with

goals and landmarks. Provide your rationale for the patient and/or family to accept (or reject).

If the patient and/or family are not ready to discuss the next steps, schedule a follow-up visit.

Source: Adapted from R Buckman: How to Break Bad News: A Guide for Health Care Professionals. Baltimore, Johns Hopkins University Press, 1992.

approach, palliative care no longer conveys the message of failure,

having no more treatments, or “giving up hope.” The transition from

palliative to end-of-life care or hospice also feels less hasty and unexpected to the family. Fundamental to integrating palliative care with

curative therapy is the inclusion of a continuous goal assessment as

part of the routine patient reassessments that occur at most patientphysician encounters.

Goals for care are numerous, ranging from curing a specific disease,

to prolonging life, to relieving a particular symptom, to adapting to a

progressive disability without disrupting the family, to finding peace

of mind or personal meaning, to dying in a manner that leaves loved

ones with positive memories. Discerning a patient’s goals for care can

be approached through a seven-step protocol: (1) ensure that medical

and other information is as complete as reasonably possible and is

understood by all relevant parties (see above); (2) explore what the

patient and/or family is hoping for, while also identifying relevant and

realistic goals; (3) share all the options with the patient and family;

(4) respond with empathy as they adjust to changing expectations; (5)

make a plan that emphasizes what can be done to achieve the realistic

goals; (6) follow through with the plan; and (7) periodically review

the plan and consider at every encounter whether the goals of care

should be revised with the patient and/or family. Each of these steps

need not be followed in rote order, but together they provide a helpful

framework for interactions with patients and their families regarding

their goals for care. Such interactions can be especially challenging if a

patient or family member has difficulty letting go of an unrealistic goal.

In such cases, the provider should help them refocus on more realistic

goals and should also suggest that while it is fine to hope for the best,

it is still prudent to plan for other outcomes as well.

Advance Care Planning •  PRACTICES Advance care planning

is the process of planning for future medical care in case the patient

becomes incapable of making medical decisions. A 2010 study of

adults aged ≥60 who died between 2000 and 2006 found that while

42% of adults were required to make treatment decisions in their final

days of life, 70% lacked decision-making capacity. Among those lacking decision-making capacity, approximately one-third did not have

advance planning directives. Ideally, such planning would occur before

a health care crisis or the terminal phase of an illness. Unfortunately,

diverse barriers prevent this. Approximately 80% of Americans endorse

advance care planning and living wills. However, according to a 2013

Pew survey, only 35% of adults have written down their end-of-life

wishes. Other studies report that even fewer Americans—with some

estimates as low as 26% of adults—have filled out advance care directives. A review of studies suggests that the percentage of Americans

who had written advance directives did not change between 2011 and

2016 and remains slightly over one-third of Americans. Larger numbers of adults, between 50 and 70%, claim to have talked with someone

76PART 1 The Profession of Medicine

about their treatment wishes. Americans aged 65 and older are more

likely to complete an advance directive compared to younger adults

(46% vs 32%).

Effective advance care planning should follow six key steps: (1)

introducing the topic, (2) structuring a discussion, (3) reviewing plans

that have been discussed by the patient and family, (4) documenting

the plans, (5) updating them periodically, and (6) implementing the

advance care directives (Table 12-3). Two of the main barriers to

advance care planning are problems in raising the topic and difficulty

in structuring a succinct discussion. Raising the topic can be done

efficiently as a routine matter, noting that it is recommended for all

patients, analogous to purchasing insurance or estate planning. Many

of the most difficult cases have involved unexpected, acute episodes of

brain damage in young individuals.

Structuring a focused discussion is an important communication

skill. To do so, a provider must first identify the health care proxy and

recommend his or her involvement in the advance care planning process. Next, a worksheet must be selected that has been demonstrated to

produce reliable and valid expressions of patient preferences, and the

patient and proxy must be oriented to it. Such worksheets exist for both

general and disease-specific situations. The provider should then discuss with the patient and proxy one example scenario to demonstrate

how to think about the issues. It is often helpful to begin with a scenario

in which the patient is likely to have settled preferences for care, such

as being in a persistent vegetative state. Once the patient’s preferences

for interventions in this scenario are determined, the provider should

suggest that the patient and proxy discuss and complete the worksheet

for each other. If appropriate, the patient and proxy should consider

involving other family members in the discussion. During a subsequent return visit, the provider should go over the patient’s preferences,

checking and resolving any inconsistencies. After having the patient

and proxy sign the document, the provider should place the document

in the patient’s medical chart and make sure that copies are provided to

relevant family members and care sites. Since patients’ preferences can

change, these documents must be reviewed periodically.

TYPES OF DOCUMENTS Advance care planning documents are of two

broad types. The first includes living wills, also known as instructional

directives; these are advisory documents that describe the types of

decisions that should direct a patient’s care. Some are more specific,

delineating different scenarios and interventions for the patient to

choose from. Among these, some are for general use and others are

designed for use by patients with a specific type of disease, such as cancer, renal failure, or HIV. Less specific directives can be general statements, such as not wanting life-sustaining interventions, or forms that

describe the values that should guide specific discussions about terminal care. The second type of advance directive allows the designation

of a health care proxy (sometimes also referred to as a durable attorney

for health care), an individual selected by the patient to make decisions.

The choice is not either/or; a combined directive that includes a living

TABLE 12-3 Steps in Advance Care Planning

STEP GOALS TO BE ACHIEVED AND MEASURES TO COVER USEFUL PHRASES OR POINTS TO MAKE

Introduce advance care

planning

Ask the patient what he or she knows about advance care planning

and if he or she has already completed an advance care directive.

I’d like to talk with you about something I try to discuss with all my

patients. It’s called advance care planning. In fact, I feel that this

is such an important topic that I have done this myself. Are you

familiar with advance care planning or living wills?

Indicate that you as a physician have completed advance care

planning.

Have you thought about the type of care you would want if you

ever became too sick to speak for yourself? That is the purpose of

advance care planning.

Indicate that you try to perform advance care planning with all patients

regardless of prognosis.

There is no change in health that we have not discussed. I am

bringing this up now because it is sensible for everyone, no matter

how well or ill, old or young.

Explain the goals of the process as empowering the patient and

ensuring that you and the proxy understand the patient’s preferences.

Have many copies of advance care directives available, including

in the waiting room, for patients and families.

Provide the patient relevant literature, including the advance care

directive that you prefer to use.

Know resources for state-specific forms (available at www.nhpco.

org).

Recommend the patient identify a proxy decision-maker who should

attend the next meeting.

Have a structured

discussion of scenarios

with the patient

Affirm that the goal of the process is to follow the patient’s wishes if

the patient loses decision-making capacity.

Use a structured worksheet with typical scenarios.

Elicit the patient’s overall goals related to health care.

Elicit the patient’s preferences for specific interventions in a few

salient and common scenarios.

Help the patient define the threshold for withdrawing and withholding

interventions.

Define the patient’s preference for the role of the proxy.

Begin the discussion with persistent vegetative state and

consider other scenarios, such as recovery from an acute event

with serious disability; then ask the patient about his or her

preferences regarding specific interventions, such as ventilators,

artificial nutrition, and CPR; finally, proceeding to less invasive

interventions, such as blood transfusions and antibiotics.

Review the patient’s

preferences

After the patient has made choices of interventions, review them to

ensure they are consistent and the proxy is aware of them.

Document the patient’s

preferences

Formally complete the advance care directive and have a witness

sign it.

Provide a copy for the patient and the proxy.

Insert a copy into the patient’s medical record and summarize it in a

progress note.

Update the directive Periodically, and with major changes in health status, review the

directive with the patient and make any modifications.

Apply the directive The directive goes into effect only when the patient becomes unable to

make medical decisions for himself or herself.

Reread the directive to be sure about its content.

Discuss your proposed actions based on the directive with the proxy.

Abbreviation: CPR, cardiopulmonary resuscitation.