Palliative and End-of-Life Care

77CHAPTER 12

will and designates a proxy is often used, and the directive should

indicate clearly whether the specified patient preferences or the proxy’s

choice takes precedence if they conflict. Some states have begun to

put into practice a “Physician Orders for Life-Sustaining Treatment

(POLST)” directive, which builds on communication between providers and patients by including guidance for end-of-life care in a

color-coordinated form that follows the patient across treatment

settings. The procedures for completing advance care planning documents vary according to state law.

A potentially misleading distinction relates to statutory, as opposed

to advisory, documents. Statutory documents are drafted to fulfill relevant state laws. Advisory documents are drafted to reflect the patient’s

wishes. Both are legal, the former under state law and the latter under

common or constitutional law.

LEGAL ASPECTS As of 2021, 48 states and the District of Columbia

had enacted living will legislation. Massachusetts and Michigan are the

two states without living will legislation. Indiana has a life-prolonging

procedures declaration. States differ in the requirements for advanced

directives, including whether they need to be witnessed and, if so, by

how many witnesses and whether they need to be notarized. Importantly, in 25 states, the laws state that the living will is not valid if a

woman is pregnant. All states except Alaska have enacted durable

power of attorney for health care laws that permit patients to designate

a proxy decision-maker with authority to terminate life-sustaining

treatments. Only in Alaska does the law prohibit proxies from terminating life-sustaining treatments for pregnant women.

The U.S. Supreme Court has ruled that patients have a constitutional

right to decide any issues related to refusing or terminating medical

interventions, including life-sustaining interventions, and that mentally incompetent patients can exercise this right by providing “clear

and convincing evidence” of their preferences. Since advance care

directives permit patients to provide such evidence, commentators

agree that they are constitutionally protected. Most commentators

believe that a state is required to honor any clear advance care directive,

regardless of whether it is written on an “official” form. Many states

have enacted laws for the explicit purpose of honoring out-of-state

directives. If a patient is not using a statutory form, it may be advisable

to attach a statutory form to the advance care directive being used.

State-specific forms are readily available free of charge for health care

providers, patients, and families through the website of the National

Hospice and Palliative Care Organization (http://www.nhpco.org).

REIMBURSEMENT As of January 1, 2016, the Centers for Medicare

and Medicaid Services amended the physician fee schedule to reimburse discussions of advance care planning under Current Procedural

Terminology codes 99497 and 99498. The session must be voluntary

and include an explanation of advance care planning but need not

include a completed advance care document. There can be multiple

bills for the discussion if it extends over several encounters. A study

found that patients who engaged in a billed advance care planning

encounter were more likely to be enrolled in hospice and less likely to

receive intensive therapies, despite being more likely to be hospitalized in the ICU. However, a billing incentive in and of itself may not

increase advance care planning discussions by clinicians. In 2016, just

1.6% of Medicare Advantage patients had a discussion of advance care

planning that was billed. Factors beyond reimbursement, such as clinicians’ lack of comfort and skill in carrying out advance care planning

discussions and lack of time, appear to impede discussions of advance

care planning.

INTERVENTIONS

■ PHYSICAL SYMPTOMS AND THEIR MANAGEMENT

Great emphasis has been placed on addressing dying patients’ pain.

In order to emphasize its importance, pain assessment has frequently

been included as the fifth vital sign. Heightened consideration of pain

has been advocated by large health care systems such as the Veterans’

Administration and accrediting bodies such as The Joint Commission. Although this embrace of pain has been symbolically important,

available data suggest that making pain the fifth vital sign does not lead

to improved pain management practices. In light of the opioid crisis in

the United States, the emphasis on pain management has begun to be

reexamined. For instance, in 2017 draft standards, The Joint Commission recommends nonpharmacologic pain treatment as well as identification of psychosocial risk factors for addiction. Importantly, good

palliative care requires much more than good pain management. The

frequency of symptoms varies by disease and other factors. The most

common physical and psychological symptoms among all terminally ill

patients include pain, fatigue, insomnia, anorexia, dyspnea, depression,

anxiety, nausea, and vomiting. In the last days of life, terminal delirium

is also common. Assessments of patients with advanced cancer have

shown that patients experienced an average of 11.5 different physical

and psychological symptoms (Table 12-4).

In the vast majority of cases, evaluations to determine the etiology

of these symptoms should be limited to the history and physical examination. In some cases, radiologic or other diagnostic examinations will

provide sufficient benefit in directing optimal palliative care to warrant

the risks, potential discomfort, and inconvenience, especially to a seriously ill patient. Only a few of the common symptoms that present difficult management issues will be addressed in this chapter. Additional

information on the management of other symptoms, such as nausea

and vomiting, insomnia, and diarrhea, can be found in Chaps. 45,

31, and 46, respectively. Information on the management of patients

with cancer is provided in Chap. 69.

Pain • FREQUENCY The frequency of pain among terminally ill

patients varies significantly. Cancer (~85%), congestive heart failure

(CHF; ~75%), and AIDS have been associated with a higher prevalence of pain compared to other advanced illnesses, such as COPD

(~45%), chronic kidney disease (~40%), and dementia (~40%). One

meta-analysis of adults with advanced or terminal illness found pain

prevalence of 30–94% in patients with cancer, compared to 21–77% for

COPD, 14–78% for CHF, 11–83% for end-stage renal disease, 14–63%

for dementia, and 30–98% for AIDS.

ETIOLOGY There are two types of pain: nociceptive and neuropathic.

Nociceptive pain is further divided into somatic or visceral pain.

Somatic pain is the result of direct mechanical or chemical stimulation

of nociceptors and normal neural signaling to the brain. It tends to

be localized, aching, throbbing, and cramping. The classic example

is bone metastases. Visceral pain is caused by nociceptors in gastrointestinal (GI), respiratory, and other organ systems. It is a deep or

colicky type of pain classically associated with pancreatitis, myocardial

infarction, or tumor invasion of viscera. Neuropathic pain arises from

TABLE 12-4 Common Physical and Psychological Symptoms of

Terminally Ill Patients

PHYSICAL SYMPTOMS PSYCHOLOGICAL SYMPTOMS

Pain Anxiety

Fatigue and weakness Depression

Dyspnea Hopelessness

Insomnia Meaninglessness

Dry mouth Irritability

Anorexia Impaired concentration

Nausea and vomiting Confusion

Constipation Delirium

Cough Loss of libido

Swelling of arms or legs

Itching

Diarrhea

Dysphagia

Dizziness

Fecal and urinary incontinence

Numbness/tingling in hands/feet

78PART 1 The Profession of Medicine

disordered nerve signals. It is described by patients as burning, electrical, or shock-like pain. Classic examples are post-stroke pain, tumor

invasion of the brachial plexus, and herpetic neuralgia.

ASSESSMENT Pain is a subjective experience. Depending on the

patient’s circumstances, perspective, and physiologic condition, the

same physical lesion or disease state can produce different levels of

reported pain and need for pain relief. Systematic assessment includes

eliciting the following: (1) type: throbbing, cramping, burning, etc.; (2)

periodicity: continuous, with or without exacerbations, or incident; (3)

location; (4) intensity; (5) modifying factors; (6) effects of treatments;

(7) functional impact; and (8) impact on patient. Several validated pain

assessment measures may be used, including the Visual Analogue Scale

(VAS), the Brief Pain Inventory (BPI), or the Numerical Pain Rating

Scale (NRS-11). Other scales have been developed for neuropathic

pain, such as the Neuropathic Pain Scale and the DN4 Questionnaire.

Frequent reassessments on a consistent scale are essential to assess the

impact of and need to readjust interventions.

INTERVENTIONS Interventions for pain must be tailored to each

individual, with the goal of preempting chronic pain and relieving

breakthrough pain. At the end of life, there is rarely reason to doubt

a patient’s report of pain. With the opioid crisis in the United States,

there is more emphasis on making opioids one component of multimodal analgesia. Nevertheless, at the end of life, pain medications,

especially opioids, remain the cornerstone of management (Fig. 12-2).

If they are failing and nonpharmacologic interventions—including

radiotherapy and anesthetic or neurosurgical procedures such as

peripheral nerve blocks or epidural medications—are required, a pain

consultation is appropriate.

Pharmacologic interventions still largely follow the World Health

Organization three-step, “analgesic ladder” approach, which involves

nonopioid analgesics, “mild” opioids, and “strong” opioids, with or

without adjuvants (Chap. 13). Nonopioid analgesics, especially nonsteroidal anti-inflammatory drugs (NSAIDs), are the initial treatments for

mild pain. They work primarily by inhibiting peripheral prostaglandins

and reducing inflammation but may also have central nervous system

(CNS) effects. Additionally, NSAIDs have a ceiling effect. Ibuprofen,

up to 2400 mg/d qid, has a minimal risk of causing bleeding and renal

impairment and is a good initial choice. In patients with a history of

severe GI or other bleeding, however, ibuprofen should be avoided.

In patients with a history of mild gastritis or gastroesophageal reflux

disease (GERD), acid-lowering therapy, such as a proton pump inhibitor, should be used. Acetaminophen is an alternative in patients with

a history of GI bleeding and can be used safely at up to 4 g/d qid. In

patients with liver dysfunction due to metastases or other causes and in

patients with heavy alcohol use, doses should be reduced.

If nonopioid analgesics are insufficient, opioids should be introduced. Opioids primarily work by interacting with μ opioid receptors

to activate pain-inhibitory neurons in the CNS, although they also

interact variably with δ and κ receptors. Receptor agonists, such

as morphine, codeine, and fentanyl, produce analgesia by activating pain-inhibitory neurons in the CNS. Partial agonists, such as

buprenorphine, have a ceiling effect for analgesia and a lower potential

for abuse. They are useful for postacute pain but should not be used for

chronic pain in end-of-life care. Pure antagonists, such as naloxone and

methylnaltrexone, are used for reversal of opioid effects.

Traditionally, “weak” opioids such as codeine were used first. If they

failed to relieve pain after dose escalation, “strong” opioids like morphine were used in doses of 5–10 mg every 4 h. However, this breakdown between “weak” and “strong” opioids is no longer commonly

accepted, with smaller doses of “stronger” opioids frequently being

preferred over similar or larger doses of “weaker” opioids, and different

pain syndromes having different preferred therapies. Regardless, nonopioid analgesics should be combined with opioids, as they potentiate

the effect of opioids.

Importantly, the goal is to prevent patients from experiencing pain.

Consequently, for continuous pain, opioids should be administered on

a regular, around-the-clock basis consistent with their duration of analgesia, and the next dose should occur before the effect of the previous

dose wears off. They should not be provided only when the patient

MILD PAIN

Acetaminophen: 500 mg 2 tablets every 4–6 h

Ibuprofen: 400 mg every 6 h; max 8 tablets per day

(2400 mg/d qid)

MODERATE PAIN

Codeine: 30–60 mg every 4–8 h; maximum daily

dose for pain 240 mg

Tramadol: 25 mg PO every 6 h; max 400 mg/d

Add to acetaminophen, NSAIDs

SEVERE PAIN

Morphine: 2.5–5 mg every 3–6 h orally

Hydromorphone: 1–2 mg every 3–6 h orally

Fentanyl transdermal: 1000-µg patch for 72 h

Hydrocodone: 5–10 mg every 3–6 h orally

Add to acetaminophen, NSAIDs

Pain persists or increases

Difficult to Control Pain

Specialist Consultation

(Consideration of surgical procedures such as nerve

blocks)

Pain persists or increases

NEUROPATHIC PAIN

burning, electrical, shock-like

e.g., poststroke pain, tumor invasion of brachial plexus, herpetic

neuralgia

Treatment

Gabapentin: 100–300 mg bid or tid, with 50–100% dose increments

every 3 days; 3600 mg/d in 2 or 3 days

NOCICEPTIVE PAIN

cramping, throbbing, aching, sharp, prickling, stabbing, deep and

constant, dull and gnawing

e.g., pancreatitis, bone metastases, tumor invasion, obstruction (of

ureters, colon, gastric outlet, gallbladder, etc.)

Treatment

NSAIDs or acetaminophen with opioids

FIGURE 12-2 Terminal pain management flow chart. NSAIDs, nonsteroidal anti-inflammatory drugs.

Palliative and End-of-Life Care

79CHAPTER 12

experiences pain. Patients should also be provided rescue medication,

such as liquid morphine, for breakthrough pain, generally at 20% of

the baseline dose. Patients should be informed that using the rescue

medication does not obviate the need to take the next standard dose

of pain medication. If the patient’s pain remains uncontrolled after

24 h and recurs before the next dose, requiring the patient to utilize

the rescue medication, the daily opioid dose can be increased by the

total dose of rescue medications used by the patient, or by 50% of the

standing opioid daily dose for moderate pain and 100% for severe pain.

It is inappropriate to start with extended-release preparations.

Instead, an initial focus on using short-acting preparations to determine how much is required in the first 24–48 h will allow clinicians to

determine opioid needs. Once pain relief is obtained using short-acting

preparations, the switch should be made to extended-release preparations. Even with a stable extended-release preparation regimen, the

patient may experience incident pain, such as during movement or

dressing changes. Short-acting preparations should be taken before

such predictable episodes. Although less common, patients may have

“end-of-dose failure” with long-acting opioids, meaning that they

develop pain after 8 h in the case of an every-12-h medication. In

these cases, a trial of giving an every-12-h medication every 8 h is

appropriate.

Due to differences in opioid receptors, cross-tolerance among opioids is incomplete, and patients may experience different side effects

with different opioids. Therefore, if a patient is not experiencing pain

relief or is experiencing too many side effects, a change to another opioid preparation is appropriate. When switching, one should begin with

50–75% of the published equianalgesic dose of the new opioid.

Unlike NSAIDs, opioids have no ceiling effect; therefore, there is no

maximum dose, no matter how many milligrams the patient is receiving. The appropriate dose is the dose needed to achieve pain relief. This

is an important point for clinicians to explain to patients and families.

Addiction or excessive respiratory depression is extremely unlikely in

the terminally ill; fear of these side effects should neither prevent escalating opioid medications when the patient is experiencing insufficient

pain relief nor justify using opioid antagonists.

Opioid side effects should be anticipated and treated preemptively.

Nearly all patients experience constipation that can be debilitating (see

below). Failure to prevent constipation often results in noncompliance

with opioid therapy. The preferred treatment is prevention. Cathartics

(senna 2 tbsp qHS), stool softeners (docusate 100 mg PO qd), and/or

laxatives (laxtulose 30 mL qd) are considered first-line treatment. For

refractory cases, opioid antagonists or other therapies, such as lubiprostone, should be considered.

Methylnaltrexone is the best-studied opioid antagonist for use in

refractory opioid-induced constipation. It reverses opioid-induced

constipation by blocking peripheral opioid receptors, but not central

receptors, for analgesia. In placebo-controlled trials, it has been shown

to cause laxation within 24 h of administration. As with the use of

opioids, about a third of patients using methylnaltrexone experience

nausea and vomiting, but unlike with opioid usage, tolerance usually

develops within a week. Therefore, when one is beginning opioids, an

antiemetic such as metoclopramide or a serotonin antagonist is often

prescribed prophylactically and stopped after 1 week. Olanzapine has

also been shown to have antinausea properties and can be effective

in countering delirium or anxiety, with the advantage of some weight

gain.

Drowsiness, a common side effect of opioids, also usually abates

within a week. For refractory or severe cases, pharmacologic therapy

should be considered. The best-studied agents are the psychostimulants dextroamphetamine, methylphenidate, and modafinil, although

evidence regarding their efficacy is weak. Modafinil has the advantage

of once-a-day dosing compared to methyphenidate’s twice daily dosing.

Seriously ill patients who require chronic pain relief rarely become

addicted. Suspicion of addiction should not be a reason to withhold

pain medications from terminally ill patients. Nonetheless, patients

and families may withhold prescribed opioids for fear of addiction

or dependence. Physicians and health care providers should reassure

patients and families that the patient will not become addicted to

opioids if they are used as prescribed for pain relief; this fear should

not prevent the patient from taking the medications around the clock.

However, diversion of drugs for use by other family members or illicit

sale may occur. It may be necessary to advise the patient and caregiver

about secure storage of opioids. Contract writing with the patient and

family can help. If that fails, transfer to a safe facility may be necessary.

Tolerance describes the need to increase medication dosage for the

same pain relief without a concurrent change in disease. In the case of

patients with advanced disease, the need for increasing opioid dosage

for pain relief usually is caused by disease progression rather than tolerance. Physical dependence is indicated by symptoms resulting from

the abrupt withdrawal of opioids and should not be confused with

addiction.

In recent years, the potential dangers of opioid drugs have become

increasingly apparent. To help mitigate the risk of these powerful

drugs, several strategies should be used to reduce the risk of aberrant

drug use. To start, all patients should be assessed for their individual

levels of risk. While there are multiple surveys available, including the

Opioid Risk Tool, none have gained widespread use or validation. In

general, however, it is important to screen for prior substance abuse

and major psychiatric disorders.

For patients deemed to be high risk, a multidisciplinary effort

should be pursued to reduce the risk of adverse consequences, such

as addiction and diversion. Prescribing strategies include selecting

opioids with longer durations of action and lower street values, such

as methadone, and prescribing smaller quantities with more frequent

follow-up. Monitoring options include periodic urine screening and

referral to pain specialists. In some cases, it may also be reasonable to

consider not offering short-acting opioids for breakthrough pain. In no

situation, however, should adequate pain relief be withheld due to risk.

Adjuvant analgesic medications are nonopioids that potentiate the

analgesic effects of opioids. They are especially important in the management of neuropathic pain. Gabapentin, an anticonvulsant initially

studied in the setting of herpetic neuralgia, is now the first-line treatment for neuropathic pain resulting from a variety of causes. It is begun

at 100–300 mg bid or tid, with 50–100% dose increments every 3 days.

Usually 900–3600 mg/d in two or three doses is effective. The combination of gabapentin and nortriptyline may be more effective than gabapentin alone. Two potential side effects of gabapentin to be aware of are

confusion and drowsiness, especially in the elderly. Other effective

adjuvant medications include pregabalin, which has the same mechanism of action as gabapentin but is absorbed more efficiently from

the GI tract. Lamotrigine is a novel agent whose mechanism of action

is unknown but has been shown to be effective. It is recommended

to begin at 25–50 mg/d, increasing to 100 mg/d. Carbamazepine, a

first-generation agent, has been proven effective in randomized trials

for neuropathic pain. Other potentially effective anticonvulsant adjuvants include topiramate (25–50 mg qd or bid, rising to 100–300 mg/d)

and oxcarbazepine (75–300 mg bid, rising to 1200 mg bid).

Glucocorticoids, preferably dexamethasone given once a day, can be

useful in reducing inflammation that causes pain, while also elevating

mood, energy, and appetite. Its main side effects include confusion,

sleep difficulties, and fluid retention. Glucocorticoids are especially

effective for bone pain and abdominal pain from distention of the GI

tract or liver. Other drugs, including clonidine and baclofen, can be

effective in providing pain relief. These drugs are adjuvants and generally should be used in conjunction with—not instead of—opioids.

Methadone, carefully dosed because of its unpredictable half-life in

many patients, has activity at the N-methyl-D-aspartamate (NMDA)

receptor and is useful for complex pain syndromes and neuropathic

pain. It is generally reserved for cases in which first-line opioids

(morphine, oxycodone, hydromorphone) are either ineffective or

unavailable.

Radiation therapy can treat bone pain from single metastatic lesions.

Bone pain from multiple metastases can be amenable to radiopharmaceuticals such as strontium-89 and samarium-153. Bisphosphonates,

such as pamidronate (90 mg every 4 weeks) and calcitonin (200 IU

intranasally once or twice a day), also provide relief from bone pain but

have multiday onsets of action.

 

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.

 

Ethical Issues in Clinical Medicine

71CHAPTER 11

been developed to assist physicians in complying with specific requirements. Importantly, not all conflicts are financial. Physicians sometimes face conflicts of commitment between their patient’s interests

and their own personal interests, professional goals, responsibilities,

and aspirations. As mentioned earlier, physicians should prioritize

patients’ interests while recognizing possible conflicts and using disclosure, discussion with the chief of service, and management of the

conflict or recusal when appropriate.

In addition to individual physicians, medical institutions may

have conflicts of interest arising from patent rights, industry-funded

research programs, and donations from individuals and companies.

Institutions need to be transparent about the presence and amount of

such relationships and make clear the steps taken to prevent such relationships from having an impact on clinical or financial decisions. If

there is good evidence that a donor acted in ways that breached ethical

or legal standards, the institution should take steps not to benefit from

the donation or honor the donor.

■ FINANCIAL INCENTIVES

Physicians have financial incentives to improve the quality or efficiency

of care that might lead some to avoid patients who are older, are chronically ill, or have more complicated problems, or to focus on benchmarked outcomes even when not in the best interests of individual

patients. In contrast, fee-for-service payments might encourage physicians to order more interventions than necessary or to refer patients to

laboratory, imaging, or surgical facilities in which they have a financial

stake. Regardless of financial incentives, physicians should recommend

available care that is in the patient’s best interests—no more and no less.

■ RELATIONSHIPS WITH PHARMACEUTICAL

COMPANIES

Financial relationships between physicians and industry are increasingly scrutinized. Many academic medical centers have banned

drug-company gifts, including branded pens and notepads and meals

to physicians, to reduce inappropriate risk of undue influence or subconscious feelings of reciprocity and to decrease possible influences on

public trust or the costs of health care.

The federal Open Payments website provides public information

on the payments and amounts that drug and device companies give

to individual physicians by name. The challenge is to distinguish

payments for scientific consulting and research contracts—which

should be encouraged as consistent with professional and academic

missions—from those for promotional speaking and consulting whose

goal is to increase sales of company products.

■ LEARNING CLINICAL SKILLS

Medical students’, residents’, and physicians’ interests in learning, which

fosters the long-term goal of benefiting future patients, may sometimes

conflict with the short-term goal of providing optimal care to current

patients. When trainees are learning procedures on patients, they lack

the proficiency of experienced physicians, and patients may experience inconvenience, discomfort, longer procedures, or increased risk.

Increasingly, institutions are developing clinical skills laboratories for

simulation-based medical education and requiring students to demonstrate proficiency before carrying out procedures such as venipuncture

and intravenous lines in patients. Furthermore, teaching hospitals are

establishing proceduralist services in which procedure-specialist faculty members directly supervise interns for procedures such as lumbar

puncture and thoracentesis and certify their proficiency. Medical students may need to defer learning such invasive procedures until internship. Seeking patients’ consent for trainee participation in their care is

always important and is particularly important for intimate examinations, such as pelvic, rectal, breast, and testicular examinations, and for

invasive procedures. Patients should be told who is providing care and

how trainees are supervised. Failing to introduce students or not telling patients that trainees will be performing procedures undermines

trust, may lead to more elaborate deception, and makes it difficult

for patients to make informed choices about their care. Most patients,

when informed, allow trainees to play an active role in their care.

■ RESPONSE TO MEDICAL ERRORS

Errors are inevitable in clinical medicine, and some errors cause harm

to patients. Most errors are caused by lapses of attention or flaws in

the system of delivering health care; only a small number result from

blameworthy individual behavior. Many health care institutions have

adopted a just culture system, which encourages open and honest

reporting of errors as essential to quality learning and shifts the focus

from individual blame to system design for improvement in quality

and safety (Chap. 8). This approach is more likely than a punitive

approach to improve patient safety. However, professional discipline

is appropriate for cases of gross incompetence, reckless behavior, physician impairment, and boundary violations. Physicians and students

may fear that disclosing errors will damage their careers. Physicians

and health care institutions show respect for patients by disclosing and

explaining errors, offering an apology, offering appropriate compensation for harm done, and using errors as opportunities to improve the

quality of care.

■ PHYSICIAN IMPAIRMENT

Physicians may hesitate to intervene when colleagues impaired by alcohol, drugs, or psychiatric or medical illness place patients at risk. However, society relies on physicians to regulate themselves. Colleagues of

an impaired physician should take steps to protect patients and help

their impaired colleague, starting with reporting their concerns to their

clinical supervisor or director.

ETHICAL ISSUES IN CLINICAL RESEARCH

Clinical research is essential to translate scientific discoveries into

beneficial interventions for patients. However, clinical research raises

ethical concerns because participants face inconvenience and risks in

research designed to advance scientific knowledge and not specifically

to benefit them. Ethical guidelines require researchers to rigorously

design and conduct research, minimize risk to participants, and obtain

informed and voluntary consent from participants and approval from

an institutional review board (IRB). IRBs determine that risks to participants are acceptable and have been minimized and recommend

appropriate additional protections when research includes vulnerable

participants.

Physicians may be clinical research investigators themselves or may

be in a position to refer or recommend clinical trial participation to

their patients. Physician-investigators are likely to feel some inherent tension between conducting research and providing health care.

Awareness of this tension, familiarity with research ethics, collaboration with research and clinical team members, and utilizing research

ethics consultation can help to mitigate tensions. Before starting clinical research, investigators should complete training in the ethics of

clinical research, which is widely available.

Physicians also should be critical consumers of clinical research

results and keep up with research advances that change standards of

practice. Precision medicine initiatives aim to individualize clinical

care by combining clinical information from electronic health records,

genomic sequencing, and data from personal mobile devices. Furthermore, physicians and health care institutions are analyzing data

routinely collected and available in electronic health records, leftover

clinical specimens, and administrative data. Such studies encompass

traditional discovery research as well as quality improvement, comparative effectiveness research, and learning health care systems. Efforts to

improve the quality of care in real-world clinical settings are important

but also raise new issues about informed consent, privacy, and risk.

EMERGING TECHNOLOGIES

Scientific advances in genome sequencing, gene editing (e.g., with

CRISPR-Cas9), machine learning, artificial intelligence, computer–

brain interfaces, and other technologies offer great promise for

research and clinical care with the ultimate goal of improving the

prediction, prevention, and treatment of disease. Groundbreaking

innovations that have strong scientific plausibility need to be evaluated

in rigorous clinical studies for efficacy and safety.

72PART 1 The Profession of Medicine

Physicians should keep up to date on the status of novel and often

complex technologies as research evolves, data emerge, and technologies are incorporated into clinical practice. They can help their patients

understand research findings and the evidence for clinical use, correct

any misunderstandings, facilitate shared decision-making, and advocate

for fair access to such therapies. Further, physicians should engage in

professional and public discussion related to allocation of resources

and fair access to expensive new therapies and emerging technologies

and their impact on overall health care affordability.

Certain cell-based therapies, such as peripheral blood stem cell

transplantation (Chap. 114) and chimeric antigen receptor (CAR)-T

cell therapy (Chap. 69), are approved for use in several serious hematologic cancers, and gene therapies have been approved as safe and

effective for clinical use in certain serious inherited diseases and cancers. Patients may request these and other complex, highly technical,

and expensive therapies for unproven indications. Yet, claims of cures

through unproven stem cell or gene-based “therapies” pose significant

health and financial risks to patients without evidence of benefit.

Physicians should help patients distinguish approved therapies from

unproven claims and refer interested patients to well-designed clinical

trials.

Medical applications of CRISPR-Cas9 are promising, and their

safety and efficacy for particular clinical conditions are being carefully

evaluated in clinical trials. Applications of CRISPR genome editing in

somatic cells to modify or correct problematic genes could lay the foundation for treating a variety of serious diseases, including blood disorders, HIV, cancer, and hereditary blindness. Germline gene editing in

blastocysts or embryos raises many ethical questions and is currently

not permitted in the United States in clinical trials or clinical practice.

In artificial intelligence (AI), computers carry out tasks typically

done by humans. Machine learning (ML) is a type of AI that automatically learns and improves its performance without explicit programming. Clinical algorithms using AI and ML can make diagnoses

from radiology images, retinal scans, or skin photographs and identify

patients at increased risk for surgical complications, critical care, or

hospital readmission. However, such algorithms can also pose risks.

Bias may occur if an algorithm was derived or validated from a data

set in which groups who suffer from health disparities or poor health

outcomes are underrepresented or if the algorithm predicts outcomes

that are not clinically meaningful. To address these ethical concerns,

researchers should assess AI algorithms in well-designed randomized

clinical trials with clinical endpoints. Institutions should integrate validated and unbiased algorithms into clinical workflow without unduly

burdening physicians and nurses and should check effectiveness and

safety in their particular settings and patient populations.

Physicians should stay informed of emerging evidence about such

technologies and the ethical challenges that accompany their use

and always keep their patients’ best interests and preferences at the

forefront.

GLOBAL CONSIDERATIONS

■ INTERNATIONAL RESEARCH

Clinical research is often conducted across multiple sites and across

national borders. Societal, legal, and cultural norms and perspectives about research may vary, and there are many ethical challenges.

Physician-investigators involved in international research should be

familiar with international guidelines, such as the Declaration of

Helsinki, the Council for International Organizations of Medical Sciences (CIOMS) guidelines, and the International Council on Harmonisation Good Clinical Practice guidelines, as well as national and local

laws where research is taking place. Partnering with local researchers

and communities is essential not only to demonstrate respect but also

to facilitate successful clinical research.

■ INTERNATIONAL CLINICAL EXPERIENCES

Many physicians and trainees gain valuable experience providing

patient care in international settings through international training

opportunities or volunteering for humanitarian or other international

clinical work. Such arrangements, however, raise ethical challenges—

for example, as a result of differences in beliefs about health and illness,

expectations regarding health care and physicians’ roles, standards

of clinical practice, resource limitations, and norms for disclosure of

serious diagnoses. Additional dilemmas arise if visiting physicians and

trainees take on responsibilities beyond their expertise or if donated

drugs and equipment are not appropriate to local needs. Visiting physicians and trainees should prepare well for these experiences, receive

training and mentoring, learn about cultural and clinical practices

in the host community, respect local customs and values, collaborate

closely with local professionals and staff, and be explicit and humble

about their own skills, knowledge, and limits. Leaders of global health

field experiences should ensure that participating physicians receive

training on ethical and cultural issues, as well as mentoring, backup,

and debriefing upon return home.

■ CONCLUSION

Ethical issues are common in clinical medicine and occur in circumstances that may be foreseeable, novel, or unexpected. Physicians

address these ethical issues by being prepared, informed, and thoughtful and using appropriate available resources.

■ FURTHER READING

Beauchamp T, Childress J: Principles of Biomedical Ethics, 8th ed.

New York, Oxford University Press, 2019.

Dejong C et al: An ethical framework for allocating scarce medications

for COVID-19 in the US. JAMA 323:2367, 2020.

Matheny M et al (eds): Artificial Intelligence in Health Care: The Hope,

the Hype, the Promise, the Peril. NAM Special Publication. Washington,

DC, National Academy of Medicine, 2019.

Ulrich C, Grady C: Moral Distress in the Health Professions. Cham,

Switzerland, Springer-Nature International, 2018.

Wasserman J et al: Responding to unprofessional behavior by trainees:

a “just culture” framework. N Engl J Med 382:773, 2020.

Wicclair MR: Conscientious objection, moral integrity, and professional obligations. Perspect Biol Med 62:543, 2019.

EPIDEMIOLOGY

■ CAUSES OF DEATH

In 2019, 2,854,838 individuals died in the United States (Table 12-1).

Approximately 74% of these deaths occurred in those aged ≥65 years.

The epidemiology of death has changed significantly since 1900 and

even since 1980. In 1900, heart disease caused ~8% of all deaths,

and cancer accounted for <4% of all deaths. In 1980, heart disease

accounted for 38.2% of all deaths, cancer 20.9%, and cerebrovascular

disease 8.6% of all deaths. By 2019, there had been a dramatic drop

in deaths from cardiovascular and cerebrovascular diseases. In 2019,

23.1% of all deaths were from cardiovascular disease and just 5.3%

from cerebrovascular disease. Deaths attributable to cancer, however,

had increased slightly to 21.0%. The proportions of deaths due to

chronic lower respiratory disease, diabetes, Alzheimer’s, and suicide

have increased. Interestingly, in 2019, HIV/AIDS accounted for <0.18%

of all U.S. deaths. While unlikely to continue being a leading cause of

death in the future, COVID-19 was also the cause for >600,000 deaths

in 2020–2021, and the official figure is almost certainly an undercount

of the actual death toll.

12 Palliative and

End-of-Life Care

Ezekiel J. Emanuel

 

Ethical Issues in Clinical Medicine

67CHAPTER 11

■ IMPLICATIONS FOR CLINICAL PRACTICE

Individual health care providers can do several things in the clinical

encounter to address racial and ethnic disparities in health care.

Be Aware That Disparities Exist Increasing awareness of racial

and ethnic disparities among health care professionals is an important

first step in addressing disparities in health care. Only with greater

awareness can care providers be attuned to their behavior in clinical

practice and thus monitor that behavior and ensure that all patients

receive the highest quality of care, regardless of race, ethnicity, or

culture.

Practice Culturally Competent Care Previous efforts have

been made to teach clinicians about the attitudes, values, beliefs, and

behaviors of certain cultural groups—the key practice “dos and don’ts”

in caring for “the Hispanic patient” or the “Asian patient,” for example.

In certain situations, learning about a particular local community or

cultural group, with a goal of following the principles of communityoriented primary care, can be helpful; when broadly and uncritically

applied, however, this approach can actually lead to stereotyping and

oversimplification of culture, without respect for its complexity.

Cultural competence has thus evolved from merely learning information and making assumptions about patients on the basis of their

backgrounds to focusing on the development of skills that follow the

principles of patient-centered care. Patient-centeredness encompasses

the qualities of compassion, empathy, and responsiveness to the needs,

values, and expressed preferences of the individual patient. Cultural

competence aims to take things a step further by expanding the repertoire of knowledge and skills classically defined as “patient-centered”

to include those that are especially useful in cross-cultural interactions

(and that, in fact, are vital in all clinical encounters). This repertoire

includes effectively using interpreter services, eliciting the patient’s

understanding of his or her condition, assessing decision-making

preferences and the role of family, determining the patient’s views

about biomedicine versus complementary and alternative medicine,

recognizing sexual and gender issues, and building trust. For example,

while it is important to understand all patients’ beliefs about health, it

may be particularly crucial to understand the health beliefs of patients

who come from a different culture or have a different health care experience. With the individual patient as teacher, the physician can adjust

his or her practice style to meet the patient’s specific needs.

Avoid Stereotyping Several strategies can allow health care providers to counteract, both systemically and individually, the normal

tendency to stereotype. For example, when racially/ethnically/culturally/

socially diverse teams in which each member is given equal power

are assembled and are tasked to achieve a common goal, a sense of

camaraderie develops and prevents the development of stereotypes

based on race/ethnicity, gender, culture, or class. Thus, health care

providers should aim to gain experiences working with and learning

from a diverse set of colleagues. In addition, simply being aware of the

operation of social cognitive factors allows providers to actively check

up on or monitor their behavior. Physicians can constantly reevaluate

to ensure that they are offering the same things, in the same ways, to

all patients. Understanding one’s own susceptibility to stereotyping—

and how disparities may result—is essential in providing equitable,

high-quality care to all patients.

Work to Build Trust Patients’ mistrust of the health care system

and of health care providers impacts multiple facets of the medical

encounter, with effects ranging from decreased patient satisfaction to

delayed care. Although the historic legacy of discrimination can never

be erased, several steps can be taken to build trust with patients and to

address disparities. First, providers must be aware that mistrust exists

and is more prevalent among minority populations, given the history

of discrimination in the United States and other countries. Second,

providers must reassure patients that they come first, that everything

possible will be done to ensure that they always get the best care

available, and that their caregivers will serve as their advocates. Third,

interpersonal skills and communication techniques that demonstrate

honesty, openness, compassion, and respect on the part of the health

care provider are essential tools in dismantling mistrust. Finally,

patients indicate that trust is built when there is shared, participatory

decision-making and the provider makes a concerted effort to understand the patient’s background. When the doctor–patient relationship

is reframed as one of solidarity, the patient’s sense of vulnerability

can be transformed into one of trust. The successful elimination of

disparities requires trust-building interventions and strengthening of

this relationship.

■ CONCLUSION

The issue of racial and ethnic disparities in health care has gained

national prominence, both with the release of the IOM report Unequal

Treatment and with more recent articles that have confirmed their

persistence and explored their root causes. Furthermore, another

influential IOM report, Crossing the Quality Chasm, has highlighted

the importance of equity—i.e., no variations in quality of care due to

personal characteristics, including race and ethnicity—as a central

principle of quality. Current efforts in health care reform and transformation, including a greater focus on value (high-quality care and

cost-control), will sharpen the nation’s focus on the care of populations

who experience low-quality, costly care. Addressing disparities will

become a major focus, and there will be many obvious opportunities

for interventions to eliminate them. Greater attention to addressing the

root causes of disparities will improve the care provided to all patients,

not just those who belong to racial and ethnic minorities.

■ FURTHER READING

Buchmueller TC et al: The ACA’s impact on racial and ethnic disparities in health insurance coverage and access to care. Health Aff

(Millwood) 39:395, 2020.

Carnethon MR et al: Cardiovascular health in African Americans: A

scientific statement from the American Heart Association. Circulation 136:e393, 2017.

Dwyer-lindgren L et al: Inequalities in life expectancy among us

counties, 1980 to 2014: Temporal trends and key drivers. JAMA

Intern Med 177:1003, 2017.

Kreuter MW et al: Addressing social needs in health care settings:

Evidence, challenges and opportunities for public health. Annu Rev

Public Health 42:11, 2021.

Krieger N: Measures of racism, sexism, heterosexism, and gender

binarism for health equity research: from structural injustice to

embodied harm: An ecosocial analysis. Annu Rev Public Health

41:37, 2020.

Medscape: Medscape Lifestyle Report 2016: Bias and burnout. http://

www.medscape.com/features/slideshow/lifestyle/2016/public/overview.

Vyas DA et al: Hidden in plain sight: Reconsidering the use of race

correction in clinical algorithms. N Engl J Med 383:874, 2020.

Williams DR et al: Racism and health: Evidence and needed research.

Annu Rev Public Health 40:105, 2019.

Physicians face novel ethical dilemmas that can be perplexing and

emotionally draining. For example, telemedicine, artificial intelligence,

handheld personal devices, and learning health care systems all hold

the promise of more coordinated and comprehensive care, but also

raise concerns about confidentiality, the doctor–patient relationship,

and responsibility. This chapter presents approaches and principles

that physicians can use to address important vexing ethical issues they

11 Ethical Issues in Clinical

Medicine

Christine Grady, Bernard Lo

68PART 1 The Profession of Medicine

encounter in their work. Physicians make ethical judgments about

clinical situations every day. They should prepare for lifelong learning

about ethical issues so they can respond appropriately. Traditional

professional codes and ethical principles provide instructive guidance

for physicians but need to be interpreted and applied to each situation.

When facing or struggling with a challenging ethical issue, physicians

may need to reevaluate their basic convictions, tolerate uncertainty,

and maintain their integrity while respecting the opinions of others.

Physicians should articulate their concerns and reasoning, discuss and

listen to the views of others involved in the case, and utilize available

resources, including other health care team members, palliative care,

social work, and spiritual care. Moreover, ethics consultation services

or a hospital ethics committee can help to clarify issues and identify

strategies for resolution, including improving communication and

dealing with strong or conflicting emotions. Through these efforts,

physicians can gain deeper insight into the ethical issues they face and

usually reach mutually acceptable resolutions to complex problems.

APPROACHES TO ETHICAL PROBLEMS

Several approaches are useful for resolving ethical issues, including

approaches based on ethical principles, virtue ethics, professional oaths,

and personal values. These various sources of guidance may seem to

conflict in a particular case, leaving the physician in a quandary. In a

diverse society, different individuals may turn to different sources of

moral guidance. In addition, general moral precepts often need to be

interpreted and applied to a particular clinical situation.

■ ETHICAL PRINCIPLES

Ethical principles can serve as general guidelines to help physicians

determine the right thing to do.

Respecting Patients Physicians should always treat patients with

respect, which entails understanding patients’ goals, providing information, communicating effectively, obtaining informed and voluntary

consent, respecting informed refusals, and protecting confidentiality.

Different clinical goals and approaches are often feasible, and interventions can result in both benefit and harm. Individuals differ in how

they value health and medical care and how they weigh the benefits

and risks of medical interventions. Generally, physicians should respect

patients’ values and informed choices. Treating patients with respect is

especially important when patients are responding to experiences of, or

fears about, disrespect and discrimination.

GOALS AND TREATMENT DECISIONS Physicians should provide relevant and accurate information for patients about diagnoses, current

clinical circumstances, expected future course, prognosis, treatment

options, and uncertainties, and discuss patients’ goals of care. Physicians may be tempted to withhold a serious diagnosis, misrepresent it

by using ambiguous terms, or limit discussions of prognosis or risks for

fear that patients will become anxious or depressed. Providing honest

information about clinical situations promotes patients’ autonomy and

trust as well as sound communication with patients and colleagues.

When physicians have to share bad news with patients, they should

adjust the pace of disclosure, offer empathy and hope, provide emotional support, and call on other resources such as spiritual care or

social work to help patients cope. Some patients may choose not to

receive such information or may ask surrogates to make decisions on

their behalf, as is common with serious diagnoses in some traditional

cultures.

SHARED DECISION-MAKING AND OBTAINING INFORMED CONSENT

Physicians should engage their patients in shared decision-making

about their health and their care, whenever appropriate. Physicians

should discuss with patients the nature, risks, and benefits of proposed

care; any alternative; and the likely consequences of each option. Physicians promote shared decision-making by informing and educating

patients, answering their questions, checking that they understand

key issues, making recommendations, and helping them to deliberate.

Medical jargon, needlessly complicated explanations, or the provision

of too much information at once may overwhelm patients. Increasingly, decision aids can assist patients in playing a more active role in

decision-making, improving the accuracy of their perception of risk

and benefit, and helping them feel better informed and clearer about

their values. Informed consent is more than obtaining signatures on

consent forms and involves disclosure of honest and understandable information to promote understanding and choice. Competent,

informed patients may refuse recommended interventions and choose

among reasonable alternatives. In an emergency, treatment can be

given without informed consent if patients cannot give their own

consent and delaying treatment while surrogates are contacted would

jeopardize patients’ lives or health. People are presumed to want such

emergency care unless they have previously indicated otherwise.

Respect for patients does not entitle patients to insist on any care or

treatment that they want. Physicians are not obligated to provide interventions that have no physiologic rationale, that have already failed,

or that are contrary to evidence-based practice recommendations or

good clinical judgment. Public policies and laws also dictate certain

decisions—e.g., allocation of scarce medical resources during a public

health crisis such as the COVID-19 pandemic, use of cadaveric organs

for transplantation, and requests for physician aid in dying.

CARING FOR PATIENTS WHO LACK DECISION-MAKING CAPACITY Some

patients are unable to make informed decisions because of unconsciousness, advanced dementia, delirium, or other medical conditions.

Courts have the legal authority to determine that a patient is legally

incompetent, but in practice, physicians usually determine when

patients lack the capacity to make particular health care decisions and

arrange for authorized surrogates to make decisions, without involving

the courts. Patients with decision-making capacity can express a choice

and appreciate their medical situation; the nature, risks, and benefits of

proposed care; and the consequences of each alternative. Patient choices

should be consistent with their values and not the result of delusions,

hallucinations, or misinformation. Physicians should use available

and validated assessment tools, resources such as psychiatry or ethics

consultation, and clinical judgment to ascertain whether individuals

have the capacity to make decisions for themselves. Patients should not

be assumed to lack capacity if they disagree with recommendations or

refuse treatment. Such decisions should be probed, however, to ensure

the patient is not deciding based on misunderstandings and has the

capacity to make an informed decision. When impairments are fluctuating or reversible, decisions should be postponed if possible until the

patient recovers decision-making capacity.

When a patient lacks decision-making capacity, physicians seek

an appropriate surrogate. Patients may designate a health care proxy

through an advance directive or on a Physician Orders for LifeSustaining Treatment form; such choices should be respected (see

Chap. 12). For patients who lack decision-making capacity and have

not previously designated a health care proxy, family members usually

serve as surrogates. Statutes in most U.S. states delineate a prioritized

list of relatives to make medical decisions. Patients’ values, goals, and

previously expressed preferences guide surrogate decisions. However,

the patient’s current best interests may sometimes justify overriding

earlier preferences if an intervention is likely to provide significant

benefit, previous statements do not fit the situation well, or the patient

gave the surrogate leeway in decisions.

MAINTAINING CONFIDENTIALITY Maintaining confidentiality is

essential to respecting patients’ autonomy and privacy; it encourages

patients to seek treatment and to discuss problems candidly. However,

confidentiality may be overridden to prevent serious harm to third

parties or the patient. Exceptions to confidentiality are justified when

the risk to others is serious and probable, no less restrictive measures

can avert risk, and the adverse effects of overriding confidentiality

are minimized and deemed acceptable by society. For example, laws

require physicians to report cases of tuberculosis, sexually transmitted

infection, elder or child abuse, and domestic violence.

Beneficence or Acting in Patients’ Best Interests The principle of beneficence requires physicians to act for the patient’s benefit.

Patients typically lack medical expertise, and illness may make them

vulnerable. Patients rely on and trust physicians to treat them with

Ethical Issues in Clinical Medicine

69CHAPTER 11

compassion and provide sound recommendations and treatments

aimed to promote their well-being. Physicians encourage such trust

and have a fiduciary duty to act in the best interests of patients, which

should prevail over physicians’ self-interest or the interests of third

parties such as hospitals or insurers. A principle related to beneficence,

“first do no harm,” obliges physicians to prevent unnecessary harm

by recommending interventions that maximize benefit and minimize

harm and forbids physicians from providing known ineffective interventions or acting without due care. Although often cited, this precept

alone provides limited guidance because many beneficial interventions

also pose serious risks.

Physicians increasingly provide care within interdisciplinary teams

and rely on consultation with or referral to specialists. Team members

and consultants contribute different types of expertise to the provision

of comprehensive, high-quality care for patients. Physicians should

collaborate with and respect the contributions of the various interdisciplinary team members and should initiate and participate in regular

communication and planning to avoid diffusion of responsibility and

ensure accountability for quality patient care.

INFLUENCES ON PATIENTS’ BEST INTERESTS Conflicts arise when

patients’ refusal or request of interventions thwarts their own goals for

care, causes serious harm, or conflicts with their best medical interests.

For example, simply accepting a young asthmatic adult’s refusal of

mechanical ventilation for reversible respiratory failure, in the name

of respecting autonomy, is morally constricted. Physicians should elicit

patients’ expectations and concerns, correct their misunderstandings,

and try to persuade them to accept beneficial therapies. If disagreements persist after such efforts, physicians should call on institutional

resources for assistance, but patients’ informed choices and views of

their own best interests should prevail.

Drug prices and out-of-pocket expenses for patients have been escalating in many parts of the world and may compromise care that is in

the patients’ best interests. Physicians should recognize that patients,

especially those with high copayments or inadequate insurance, may

not be able to afford prescribed tests and interventions. Physicians

should strive to prescribe medications that are affordable and acceptable to the patient. Knowing what kind of insurance, if any, the patient

has and whether certain medications are likely to be covered may help

in determining appropriate prescriptions. Available alternatives should

be considered and discussed. Physicians should follow up with patients

who don’t fill prescriptions, don’t take their medications, or skip doses

to explore whether cost and affordability are obstacles. It may be

reasonable for physicians to advocate for coverage of nonformulary

products for sound reasons, such as when the formulary drugs are less

effective or not tolerated or are too costly for the patient to pay for out

of pocket. These should be shared decisions with the patient to the

extent possible.

Organizational policies and workplace conditions may sometimes

conflict with patients’ best interests. Physicians’ focus and dedication to

the well-being and interests of patients may be negatively influenced by

perceived or actual staffing inadequacies, unfair wages, infrastructural

deficiencies or lack of equipment, work-hour limitations, corporate

culture, and threats to personal security in the workplace. Physicians

should work with institutional leaders to ensure that policies and practices support their ability to provide quality care focused on patients’

best interests.

Patients’ interests are served by improvements in overall quality

of care and the increasing use of evidence-based practice guidelines

and performance benchmarking. However, practice guideline recommendations may not serve the interests of each individual patient,

especially when another plan of care may provide substantially greater

benefits. In prioritizing their duty to act in the patient’s best interests,

physicians should be familiar with relevant practice guidelines, be able

to recognize situations that might justify exceptions, and advocate for

reasonable exceptions.

Acting Justly The principle of justice provides guidance to physicians about how to ethically treat patients and make decisions about

allocating important resources, including their own time. Justice in a

general sense means fairness: people should receive what they deserve.

In addition, it is important to act consistently in cases that are similar

in ethically relevant ways, in order to avoid arbitrary, biased, and unfair

decisions. Justice forbids discrimination in health care based on race,

religion, gender, sexual orientation, disability, age, or other personal

characteristics (Chap. 10).

ALLOCATION OF RESOURCES Justice also requires fair allocation of

limited health care resources. Universal access to medically needed

health care remains an unrealized moral aspiration in the United States

and many countries around the world. Patients with no or inadequate

health insurance often cannot afford health care and lack access to

safety-net services. Even among insured patients, insurers may deny

coverage for interventions recommended by their physician. In this

situation, physicians should advocate for patients’ affordable access

to indicated care, try to help patients obtain needed care, and work

with institutions and policies to promote wider access. Doctors might

consider—or patients might request—the use of lies or deception to

obtain such benefits, for example, signing a disability form for a patient

who does not meet disability criteria. Although motivated by a desire to

help the patient, such deception breaches basic ethical guidelines and

undermines physicians’ credibility and trustworthiness.

Allocation of health care resources is unavoidable when resources

are limited. Allocation policies should be fair, transparent, accountable,

responsive to the concerns of those affected, and proportionate to the

situation, including the supply relative to the need. In the 2019–2020

SARS-CoV-2/COVID-19 pandemic, some epicenters anticipated or

faced shortages of staff, protective equipment, hospital and critical care

beds, and ventilators, even after increasing supplies and modifying

usual clinical procedures. Many jurisdictions developed guidelines for

implementing crisis standards of care to allocate limited interventions

and services. Under crisis standards of care, some aspects of conventional care are not possible and interventions may not be provided to

all who might benefit or wish to receive them. Crisis standards of care

aim to promote the good of the community by saving the most lives in

the short term, using evidence-based criteria.

When demand for medications or other interventions exceeds

the supply, allocation should be fair, strive to avoid discrimination,

and mitigate health disparities. First-come, first-served allocation is

not fair, because it disadvantages patients who experience barriers to

accessing care. To avoid discrimination, allocation decisions should

not consider personal social characteristics such as race, gender, or disability, nor consider insurance status or wealth. Allocation policies also

should aspire to reduce health care disparities. U.S. African-American,

Latino-American, and Native-American patients suffered a disproportionate number of COVID-19 cases and deaths, likely due in part to

being employed in jobs that cannot be done remotely or with physical

distancing, crowded housing, lack of health benefits, and poor access

to health care.

Fair and well-considered guidelines help mitigate any emotional

and moral distress that clinicians may experience making difficult

allocation decisions. Authorizing triage officers or committees to make

allocation decisions according to policies determined with public

input allows treating physicians and nurses to dedicate their efforts to

their patients. Ad hoc resource allocation by physicians at the bedside

may be inconsistent, unfair, and ineffective. At the bedside, physicians

should act as patient advocates within constraints set by society, reasonable insurance policies, and evidence-based practice. Many allocation decisions are made at the level of public policy, with physician

and public input. For example, the United Network for Organ Sharing

(www.unos.org) provides criteria for allocating scarce organs.

■ VIRTUE ETHICS

Virtue ethics focuses on physicians’ character and qualities, with the

expectation that doctors will cultivate virtues such as compassion,

trustworthiness, intellectual honesty, humility, and integrity. Proponents argue that, if such characteristics become ingrained, they help

guide physicians in unforeseen situations. Moreover, following ethical

precepts or principles without any of these virtues could lead to uncaring doctor–patient relationships.

70PART 1 The Profession of Medicine

■ PROFESSIONAL OATHS AND CODES

Professional oaths and codes are useful guides for physicians. Most

physicians take oaths during their medical training, and many are

members of professional societies that have professional codes. Physicians pledge to the public and to their patients that they will be guided

by the principles and values in these oaths or codes and commit to the

spirit of the ethical ideals and precepts represented in oaths and professional codes of ethics.

■ PERSONAL VALUES

Personal values, cultural traditions, and religious beliefs are important

sources of personal morality that help physicians address ethical issues

and cope with any moral distress they may experience in practice.

While essential, personal morality alone is a limited ethical guide

in clinical practice. Physicians have role-specific ethical obligations

that go beyond their obligations as good people, including the duties

to obtain informed consent and maintain confidentiality discussed

earlier. Furthermore, in a culturally and religiously diverse world,

physicians should expect that some patients and colleagues will have

personal moral beliefs that differ from their own.

ETHICALLY COMPLEX PROFESSIONAL

ISSUES FOR PHYSICIANS

■ CLAIMS OF CONSCIENCE

Some physicians, based on their personal values, have conscientious

objections to providing, or referring patients for, certain treatments such

as contraception or physician aid in dying. Although physicians should

not be asked to violate deeply held moral beliefs or religious convictions,

patients need medically appropriate, timely care and should always be

treated with respect. Institutions such as clinics and hospitals have a

collective ethical duty to provide care that patients need while making

reasonable attempts to accommodate health care workers’ conscientious objections—for example, when possible by arranging for another

professional to provide the service in question. Patients seeking a

relationship with a doctor or health care institution should be notified

in advance of any conscientious objections to the provision of specific

interventions. Since insurance often constrains patients’ selection of

physicians or health care facilities, switching providers can be burdensome. There are also important limits on claims of conscience. Health

care workers may not insist that patients receive unwanted medical

interventions. They also may not refuse to treat or discriminate against

patients because of their race, ethnicity, disability, genetic information,

or diagnosis. Such discrimination is illegal and violates physicians’

duties to respect patients. Refusal to treat patients for other reasons

such as sexual orientation, gender identity, or other personal characteristics is legally more controversial, yet ethically inappropriate because it

falls short of helping patients in need and respecting them as persons.

■ PHYSICIAN AS GATEKEEPER

In some cases, patients may ask their physicians to facilitate access

to services that the physician has ethical qualms about providing.

For example, a patient might request a prescription for a cognitively

enhancing medication to temporarily augment his cognitive abilities in

order to take an exam or apply for employment. Patients may request

more pain medication than the physician believes is warranted for

the given situation or marijuana to facilitate sleep. Patients may ask

their physician to sign a waiver to avoid vaccines for reasons that

are not included in state exceptions (see Chap. 3). A physician may

feel uncomfortable prescribing attention-deficit/hyperactivity disorder medications to a young child because she is not convinced that

the possible benefit justifies the risks to the child despite the parent’s

request. In these circumstances, the physician should work with the

patient or parent to understand the reasons for their requests, some

of which might be legitimate. In addition to considering possible risks

and benefits to the patient, the physician should consider how meeting

the request might affect other patients, societal values, and public trust

in the medical profession. If the physician determines that fulfilling

the request requires deception, is unfair, jeopardizes her professional

responsibilities, or is inconsistent with the patient’s best medical

interests, the physician should decline and explain the reasons to the

patient.

■ MORAL DISTRESS

Health care providers, including residents, medical students, and

experienced physicians, may experience moral distress when they feel

that ethically appropriate action is hindered by institutional policies

or culture, decision-making hierarchies, limited resources, or other

reasons. Moral distress can lead to anger, anxiety, depression, frustration, fatigue, work dissatisfaction, and burnout. A physician’s health

and well-being can affect how he or she cares for patients. Discussing

complex or unfamiliar clinical situations with colleagues and seeking

assistance with difficult decisions can help alleviate moral distress, as

can a healthy work environment characterized by open communication, mutual respect, and emphasis on the common goal of good

patient care. In addition, physicians should take good care of their own

well-being and be aware of the personal and system factors associated

with stress, burnout, and depression. Health care organizations should

provide a supportive work environment, counseling, and other support

services when needed.

■ OCCUPATIONAL RISKS AND BURDENS

Physicians accept some physical risk in fulfilling their professional

responsibilities, including exposure to infectious agents or toxic

substances, violence in the workplace, and musculoskeletal injury.

Nonetheless, most physicians, nurses, and other hospital staff willingly

care for patients, despite personal risk and fear, grueling hours, and

sometimes inadequate personal protective equipment or information.

During the COVID-19 pandemic, many communities honored clinicians’ dedication to professional ideals, and some medical students who

were relieved from in-person patient care responsibilities volunteered

to support front-line workers in other ways. The burdens of navigating

professional and personal responsibilities fall more heavily on women

health care providers. Health care institutions are responsible for

reducing occupational risk and burden by providing proper information, training and supervision, protective equipment, infrastructure

and workflow modifications, and emotional and psychological support

to physicians. Clinical leaders need to acknowledge fears about personal safety and take steps to mitigate the impact of work on family

responsibilities, moral distress, and burnout.

■ USE OF SOCIAL MEDIA AND PATIENT PORTALS

Increasingly, physicians use social and electronic media to share information and advice with patients and other providers. Social networking

may be especially useful in reaching young or otherwise hard-to-access

patients. Patients increasingly access their physicians’ notes through

patient portals, which aim to transparently share information, promote patient engagement, and increase adherence. Physicians should

be professional and respectful and consider patient confidentiality,

professional boundaries, and therapeutic relationships when posting to

social media or writing notes for the portal. Overall, appropriate use of

these platforms can enhance communication and transparency while

avoiding misunderstandings or harmful consequences for patients,

physicians, or their colleagues. Unprofessional or careless posts that

express frustration or anger over work incidents, disparage patients or

colleagues, use offensive or discriminatory language, or reveal inappropriate personal information about the physician can have negative

consequences. Physicians should separate professional from personal

websites and accounts and follow institutional and professional society

guidelines when communicating with patients.

CONFLICTS OF INTEREST

Acting in patients’ best interests may sometimes conflict with a physician’s self-interest or the interests of third parties such as insurers or

hospitals. From an ethical viewpoint, patients’ interests are paramount.

Transparency, appropriate disclosure, and management of conflicts of

interest are essential to maintain the trust of colleagues and the public.

Disclosure requirements vary for different purposes, and software has