Palliative and End-of-Life Care

85CHAPTER 12

caregivers should be identified through local sources or nationally

through groups such as the National Family Caregivers Association

(www.nfcacares.org), the American Cancer Society (www.cancer.org),

and the Alzheimer’s Association (www.alz.org).

■ EXISTENTIAL NEEDS AND THEIR MANAGEMENT

Frequency Religion and spirituality are often important to dying

patients. Nearly 70% of patients report becoming more religious or

spiritual when they became terminally ill, and many find comfort in

religious or spiritual practices such as prayer. However, ~20% of terminally ill patients become less religious, frequently feeling cheated or

betrayed by becoming terminally ill. For other patients, the need is for

existential meaning and purpose that is distinct from, and may even be

antithetical to, religion or spirituality. When asked, patients and family

caregivers frequently report wanting their professional caregivers to be

more attentive to religion and spirituality.

Assessment Health care providers are often hesitant about involving themselves in the religious, spiritual, and existential experiences

of their patients because it may seem private or not relevant to the

current illness. But physicians and other members of the care team

should be able at least to detect spiritual and existential needs. Screening questions have been developed for a physician’s spiritual history

taking. Spiritual distress can amplify other types of suffering and

even masquerade as intractable physical pain, anxiety, or depression.

The screening questions in the comprehensive assessment are usually

sufficient. Deeper evaluation and intervention are rarely appropriate

for the physician unless no other member of a care team is available

or suitable. Pastoral care providers may be helpful, whether from the

medical institution or from the patient’s own community.

Interventions Precisely how religious practices, spirituality, and

existential explorations can be facilitated and improve end-of-life care

is not well established. What is clear is that for physicians, one main

intervention is to inquire about the role and importance of spirituality and religion in a patient’s life. This will help a patient feel heard

and help physicians identify specific needs. In one study, only 36%

of respondents indicated that a clergy member would be comforting.

Nevertheless, the increase in religious and spiritual interest among a

substantial fraction of dying patients suggests inquiring of individual

patients how this need can be addressed. Some evidence supports specific methods of addressing existential needs in patients, ranging from

establishing a supportive group environment for terminal patients to

individual treatments emphasizing a patient’s dignity and sources of

meaning.

MANAGING THE LAST STAGES

■ PALLIATIVE CARE SERVICES: HOW AND WHERE

Determining the best approach to providing palliative care to patients

will depend on patient preferences, the availability of caregivers and

specialized services in close proximity, institutional resources, and

reimbursement. Hospice is a leading, but not the only, model of palliative care services. In the United States, slightly more than a third—

35.7%—of hospice care is provided in private residential homes with

14.5% of hospice care in nursing homes. In the United States, Medicare

pays for hospice services under Part A, the hospital insurance part

of reimbursement. Two physicians must certify that the patient has a

prognosis of ≤6 months if the disease runs its usual course. Prognoses

are probabilistic by their nature; patients are not required to die within

6 months but rather to have a condition from which half the individuals with it would not be alive within 6 months. Patients sign a hospice

enrollment form that states their intent to forgo curative services

related to their terminal illness but can still receive medical services

for other comorbid conditions. Patients also can withdraw enrollment

and reenroll later; the hospice Medicare benefit can be revoked later

to secure traditional Medicare benefits. Payments to the hospice are

per diem (or capitated), not fee-for-service. Payments are intended

to cover physician services for the medical direction of the care team;

regular home care visits by registered nurses and licensed practical

nurses; home health aide and homemaker services; chaplain services;

social work services; bereavement counseling; and medical equipment,

supplies, and medications. No specific therapy is excluded, and the goal

is for each therapy to be considered for its symptomatic (as opposed to

disease-modifying) effect. Additional clinical care, including services

of the primary physician, is covered by Medicare Part B even while the

hospice Medicare benefit is in place.

The Affordable Care Act directs the secretary of Health and Human

Services to gather data on Medicare hospice reimbursement with the

goal of reforming payment rates to account for resource use over an

entire episode of care. The legislation also requires additional evaluations and reviews of eligibility for hospice care by hospice physicians

or nurses. The Center for Medicare and Medicaid Innovation (CMMI)

sponsors and carries out demonstration projects to test models and

evaluate the potential of new methods. In 2016, CMMI started a 5-year

test of concurrent hospice and palliative care services with curative

treatment for terminally ill patients who have a life expectancy of

≤6 months. A 4-year test initiated in 2021 will examine the inclusion of

hospice in Medicare Advantage covering 8% of the market and include

important health plans.

By 2018, the average length of enrollment in a hospice for Medicare

beneficiaries was 90 days. However, the median length of stay was

just 18 days, suggesting most patients are in hospice for a short time.

Such short stays create barriers to establishing high-quality palliative

services in patients’ homes and also place financial strains on hospice

providers since the initial assessments are resource intensive. Physicians should initiate early referrals to the hospice to allow more time

for patients to receive palliative care.

In the United States, hospice care has been the main method for

securing palliative services for terminally ill patients. However, leading

physicians have increasingly emphasized the need to introduce palliative care much earlier in patients’ illness, and efforts are being made

to develop palliative care services that can be provided before the last

6 months of life and across a variety of settings. Studies of terminally

ill patients indicate that those who received in-home palliative care

delivered by an interdisciplinary team compared to usual care were

more satisfied, more likely to die at home, and had fewer visits to the

emergency room and lower per-day costs. More companies and home

health agencies are now offering nonhospice palliative care services

in patients’ homes in an effort to increase quality of life and forestall

emergency room visits and hospitalizations. Similarly, palliative care

services are increasingly available via consultation, rather than being

available only in hospital, day care, outpatient, and nursing home

settings. Palliative care consultations for nonhospice patients can be

billed as for other consultations under Medicare Part B. It is argued

that using palliative care earlier in patients’ illness allows patients and

family members to become more acculturated to avoiding life-sustaining treatments, facilitating a smoother transition to hospice care closer

to death.

■ WITHDRAWING AND WITHHOLDING

LIFE-SUSTAINING TREATMENT

Legal Aspects For centuries, it has been deemed ethical to withhold or withdraw life-sustaining interventions. The current legal consensus in the United States and most wealthy countries is that patients

have a moral as well as legal right to refuse medical interventions.

American courts also have held that incompetent patients have a right

to refuse medical interventions. For patients who are incompetent and

terminally ill and who have not completed an advance care directive,

next of kin can exercise that right, although this may be restricted in

some states, depending on how clear and convincing the evidence

is of the patient’s preferences. Courts have limited families’ ability to

terminate life-sustaining treatments in patients who are conscious and

incompetent but not terminally ill. In theory, patients’ right to refuse

medical therapy can be limited by four countervailing interests: (1)

preservation of life, (2) prevention of suicide, (3) protection of third

parties such as children, and (4) preservation of the integrity of the

86PART 1 The Profession of Medicine

medical profession. In practice, these interests almost never override

the right of competent patients and incompetent patients who have left

explicit wishes or advance care directives.

For incompetent patients who either appointed a proxy without

specific indications of their wishes or never completed an advance

care directive, three criteria have been suggested to guide the decision

to terminate medical interventions. First, some commentators suggest

that ordinary care should be administered but extraordinary care could

be terminated. Because the ordinary/extraordinary distinction is too

vague, courts and commentators widely agree that it should not be used

to justify decisions about stopping treatment. Second, many courts

have advocated the use of the substituted-judgment criterion, which

holds that the proxy decision-makers should try to imagine what the

incompetent patient would do if he or she were competent. However,

multiple studies indicate that many proxies, even close family members, cannot accurately predict what the patient would have wanted.

Therefore, substituted judgment becomes more of a guessing game

than a way of fulfilling the patient’s wishes. Finally, the best-interests

criterion holds that proxies should evaluate treatments by balancing

their benefits and risks and select those treatments where the benefits

maximally outweigh the burdens of treatment. Clinicians have a clear

and crucial role in this by carefully and dispassionately explaining the

known benefits and burdens of specific treatments. Yet even when that

information is as clear as possible, different individuals can have very

different views of what is in the patient’s best interests, and families

may have disagreements or even overt conflicts. This criterion has

been criticized because there is no single way to determine the balance

between benefits and burdens; it depends on a patient’s personal values. For instance, for some people, being alive even if mentally incapacitated is a benefit, whereas for others, it may be the worst possible

existence. As a matter of practice, physicians rely on family members to

make decisions that they feel are best and object only if those decisions

seem to demand treatments that the physicians consider not beneficial.

Practices Withholding and withdrawing acutely life-sustaining

medical interventions from terminally ill patients are now standard

practice. More than 90% of American patients die without cardiopulmonary resuscitation (CPR), and just as many forgo other potentially

life-sustaining interventions. For instance, in ICUs in the period of

1987–1988, CPR was performed 49% of the time, but it was performed

only 10% of the time in 1992–1993 and on just 1.8% of admissions

from 2001 to 2008. On average, 3.8 interventions, such as vasopressors

and transfusions, were stopped for each dying ICU patient. However,

up to 19% of decedents in hospitals received interventions such as

extubation, ventilation, and surgery in the 48 h preceding death. There

is wide variation in practices among hospitals and ICUs, suggesting

an important element of physician preferences rather than consistent

adherence to professional society recommendations.

Mechanical ventilation may be the most challenging intervention

to withdraw. The two approaches are terminal extubation, which is

the removal of the endotracheal tube, and terminal weaning, which

is the gradual reduction of the fraction of inspired oxygen (FIO2

) or

ventilator rate. One-third of ICU physicians prefer to use the terminal

weaning technique, and 13% extubate; the majority of physicians utilize

both techniques. The American Thoracic Society’s 2008 clinical policy

guidelines note that there is no single correct process of ventilator

withdrawal and that physicians use and should be proficient in both

methods but that the chosen approach should carefully balance benefits and burdens as well as patient and caregiver preferences. Some

recommend terminal weaning because patients do not develop upper

airway obstruction and the distress caused by secretions or stridor;

however, terminal weaning can prolong the dying process and not

allow a patient’s family to be with the patient unencumbered by an

endotracheal tube. To ensure comfort for conscious or semiconscious

patients before withdrawal of the ventilator, neuromuscular blocking

agents should be terminated and sedatives and analgesics administered.

Removing the neuromuscular blocking agents permits patients to show

discomfort, facilitating the titration of sedatives and analgesics; it also

permits interactions between patients and their families. A common

practice is to inject a bolus of midazolam (2–4 mg) or lorazepam

(2–4 mg) before withdrawal, followed by a bolus of 5–10 mg of morphine and continuous infusion of morphine (50% of the bolus dose per

hour) during weaning. In patients who have significant upper airway

secretions, IV scopolamine at a rate of 100 μg/h can be administered.

Additional boluses of morphine or increases in the infusion rate should

be administered for respiratory distress or signs of pain. Higher doses

will be needed for patients already receiving sedatives and opioids.

The median time to death after stopping of the ventilator is 1 h.

However, up to 10% of patients unexpectedly survive for 1 day or more

after mechanical ventilation is stopped. Women and older patients

tend to survive longer after extubation. Families need to be reassured

about both the continuations of treatments for common symptoms,

such as dyspnea and agitation, after withdrawal of ventilatory support

and the uncertainty of length of survival after withdrawal of ventilatory

support.

■ FUTILE CARE

Beginning in the late 1980s, some commentators argued that physicians could terminate futile treatments demanded by the families of

terminally ill patients. Although no objective definition or standard

of futility exists, several categories have been proposed. Physiologic

futility means that an intervention will have no physiologic effect.

Some have defined qualitative futility as applying to procedures that

“fail to end a patient’s total dependence on intensive medical care.”

Quantitative futility occurs “when physicians conclude (through personal experience, experiences shared with colleagues, or consideration

of reported empiric data) that in the last 100 cases, a medical treatment

has been useless.” The term conceals subjective value judgments about

when a treatment is “not beneficial.” Deciding whether a treatment that

obtains an additional 6 weeks of life or a 1% survival advantage confers benefit depends on patients’ preferences and goals. Furthermore,

physicians’ predictions of when treatments are futile deviate markedly

from the quantitative definition. When residents thought CPR was

quantitatively futile, more than one in five patients had a >10% chance

of survival to hospital discharge. Most studies that purport to guide

determinations of futility are based on insufficient data and therefore

cannot provide statistical confidence for clinical decision-making.

Quantitative futility rarely applies in ICU settings.

Many commentators reject using futility as a criterion for withdrawing care, preferring instead to consider futility situations as ones that

represent conflict that calls for careful negotiation between families

and health care providers. The American Medical Association and

other professional societies have developed process-based approaches

to resolving cases clinicians feel are futile. These process-based measures mainly suggest involving consultants and/or ethics committees

when there are seemingly irresolvable differences. Some hospitals have

enacted “unilateral do-not-resuscitate” policies to allow clinicians to

provide a do-not-resuscitate order in cases in which consensus cannot

be reached with families and medical opinion is that resuscitation

would be futile if attempted. This type of a policy is not a replacement

for careful and patient communication and negotiation but recognizes

that agreement cannot always be reached.

In 1999, Texas enacted the so-called Futile Care Act. Other states,

such as Virginia, Maryland, and California, have also enacted such

laws that provide physicians a “safe harbor” from liability if they

refuse a patient’s or family’s request for life-sustaining interventions.

For instance, in Texas, when a disagreement about terminating

interventions between the medical team and the family has not been

resolved by an ethics consultation, the physician is tasked with trying

to facilitate transfer of the patient to an institution willing to provide

treatment. If this fails after 10 days, the hospital and physician may unilaterally withdraw treatments determined to be futile. The family may

appeal to a state court. Early data suggest that the law increases futility

consultations for the ethics committee and that, although most families

concur with withdrawal, ~10–15% of families refuse to withdraw treatment. As of 2007, there had been 974 ethics committee consultations

on medical futility cases and 65 in which committees ruled against

families and gave notice that treatment would be terminated. In 2007,

Palliative and End-of-Life Care

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a survey of Texas hospitals showed that 30% of hospitals had used the

futility law in 213 adult cases and 42 pediatric cases. Treatment was

withdrawn for 27 of those patients, and the remainder were transferred

to other facilities or died while awaiting transfer.

■ EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE

Euthanasia and PAS are defined in Table 12-8. Terminating lifesustaining care and providing opioid medications to manage symptoms

such as pain or dyspnea have long been considered ethical by the medical profession and legal by courts and should not be conflated with

euthanasia or PAS.

Legal Aspects Euthanasia and PAS are legal in the Netherlands,

Belgium, Luxembourg, Colombia, Canada, Spain, Western Australia,

and New Zealand. Euthanasia was legalized in the Northern Territory

of Australia in 1996, but that legislation was repealed 9 months

later in 1997. Under certain conditions, a layperson in Switzerland or

Germany can legally elect assisted suicide. In the United States, PAS is

legal in Washington, D.C., and 10 states: Oregon, Washington State,

Montana, Vermont, California, Colorado, Hawaii, Maine, New Jersey,

and New Mexico. No state in the United States has legalized euthanasia.

In the United States, multiple criteria must be met for PAS: the patient

must have a terminal condition of <6 months and must be determined

eligible through a process that includes a 15-day waiting period. In

2009, the state supreme court of Montana ruled that state law permits

PAS for terminally ill patients. Many other countries, such as Portugal,

are actively debating the legalization of euthanasia and/or PAS.

Practices Fewer than 10–20% of terminally ill patients actually

consider euthanasia and/or PAS for themselves. Use of euthanasia and

PAS is increasing but remains relatively rare. In all countries, even the

Netherlands and Belgium where these practices have been tolerated

and legal for many years, <5% of death occur by euthanasia or PAS. As

of the most recent data, 4.7% of all deaths were by euthanasia or PAS

in the Netherlands (2015) and 4.6% in Belgium (2013). Just 0.50% of all

deaths in Oregon in 2019 (188 of 37,397 deaths) and 0.36% of all deaths

in Washington State in 2018 (203 of 56,913 deaths) were reported to be

by PAS, although these may be underestimates since the cause of some

deaths of patients who received medications could not be verified.

In Belgium, the Netherlands, Oregon, and Washington, >70% of

patients utilizing these interventions are dying of cancer; <10% of

deaths by euthanasia or PAS involve patients with AIDS or amyotrophic

TABLE 12-8 Definitions of Physician-Assisted Suicide and Euthanasia

TERM DEFINITION LEGAL STATUS

Voluntary active

euthanasia

Intentionally administering

medications or other

interventions to cause the

patient’s death with the patient’s

informed consent

Netherlands, Belgium,

Luxembourg, Canada,

Colombia, Spain,

Western Australia, New

Zealand

Involuntary

active

euthanasia

Intentionally administering

medications or other

interventions to cause the

patient’s death when the patient

was competent to consent but

did not—e.g., the patient may not

have been asked

Nowhere

Passive

euthanasia

Withholding or withdrawing lifesustaining medical treatments

from a patient to let him or her

die (terminating life-sustaining

treatments)

Everywhere

Physicianassisted suicide

A physician provides medications

or other interventions to a patient

with the understanding that the

patient can use them to commit

suicide

Netherlands, Belgium,

Luxembourg, Canada,

Colombia, Germany,

Switzerland, Oregon,

Washington, Montana,

Vermont, California,

Colorado, District of

Columbia, Hawaii, Maine,

New Jersey, New Mexico

lateral sclerosis. While the numbers are small, in the Netherlands, the

numbers of euthanasia or PAS cases in patients with psychiatric disorders, dementia, and the accumulation of health issues are increasing.

Pain is not the primary motivator for patients’ requests for or interest in euthanasia and/or PAS. Among the first patients to receive PAS

in Oregon, only 1 of the 15 patients had inadequate pain control, compared with 15 of the 43 patients in a control group who experienced

inadequate pain relief. About 33% of patients in Oregon seeking PAS

currently cite pain or fear of pain as their main reason for doing so.

Conversely, depression and hopelessness are strongly associated with

patient interest in euthanasia and PAS. Concerns about loss of dignity

or autonomy or being a burden on family members appear to be more

important factors motivating a desire for euthanasia or PAS. Losing

autonomy (87% Oregon [OR], 85% Washington [WA]), not being able

to enjoy activities (90% OR, 84% WA), and fear of losing dignity (72%

OR, 69% WA) are the most-cited end-of-life concerns in both states.

A high percentage of patients seeking PAS note being a burden on

family (59% OR, 51% WA). A study from the Netherlands showed that

depressed terminally ill cancer patients were four times more likely

to request euthanasia and confirmed that uncontrolled pain was not

associated with greater interest in euthanasia.

Euthanasia and PAS are no guarantee of a painless, quick death.

Data from the Netherlands indicate that in as many as 20% of euthanasia and PAS cases technical and other problems arose, including

patients waking from coma, not becoming comatose, regurgitating

medications, and experiencing a prolonged time to death. Data from

Oregon between 1998 and 2017 and Washington between 2009 and

2017 indicate that of patients who received PAS prescriptions, 81%

died at home and prescribers were present in 9.7% of cases. The time

between drug intake and coma ranged from 1 min to 11 h, and the time

from drug intake to death ranged from 1 min to 104 h. The median

time from ingestion to coma was 5 min and from ingestion to death

was 25 min. In Oregon between 1998 and 2015, 53% of patients had no

complications, 44% of patients had no data on complications, and 2.4%

of patients had regurgitation after taking the prescribed medicine as

the only complication. In addition, six patients awakened. In Washington

State between 2014 and 2015, 1.4% of patients had regurgitation, one

patient had a seizure, and the reported range of time to death extended

to 30 h. In the Netherlands, problems were significantly more common

in PAS, sometimes requiring the physician to intervene and provide

euthanasia.

Regardless of whether they practice in a setting where euthanasia

is legal or not, many physicians over the course of their careers will

receive a patient request for euthanasia or PAS. In the United States,

18% of physicians have received a request for PAS and 11% have

received a request for euthanasia. Three percent complied with a

request for PAS, while 5% complied with a request for euthanasia. In

the Netherlands, where the practices are legal, 77% of physicians have

received a request for PAS or euthanasia and 60% have performed these

interventions.

Competency in dealing with such a request is crucial. Although

challenging, the request can also provide a chance to address intense

suffering. After receiving a request for euthanasia and/or PAS, health

care providers should carefully clarify the request with empathic, openended questions to help elucidate the underlying cause for the request,

such as, “What makes you want to consider this option?” Endorsing

either moral opposition or moral support for the act tends to be counterproductive, giving an impression of being judgmental or of endorsing the idea that the patient’s life is worthless. Health care providers

must reassure the patient of continued care and commitment. The

patient should be educated about alternative, less laden options, such

as symptom management and withdrawing any unwanted treatments,

and the reality of euthanasia and/or PAS, since the patient may have

misconceptions about their effectiveness as well as the legal implications of the choice. Depression, hopelessness, and other symptoms of

psychological distress, as well as physical suffering and economic burdens, are likely factors motivating the request, and such factors should

be assessed and treated aggressively. After these interventions and

clarification of options, most patients proceed with another approach,