My Draft Book for HARRISON INTERNAL MEDICINE

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Dyspnea
FREQUENCY
Dyspnea is a subjective experience of being short of breath. Nearly 75% of dying
patients experience dyspnea. Dyspnea is among the most distressing of physical
symptoms, even more distressing than pain.
ASSESSMENT
As with pain, dypsnea is a subjective experience that may not correlate with objective
measures of PO2
, PCO2
, or respiratory rate. Consequently, measurements, much less
repeated measurements, of oxygen saturation through pulse oximetry or blood gases
are rarely helpful. Reversible or treatable causes of dyspnea include infection, pleural
effusions, pulmonary emboli, or lung tumor encroachment on the airway. However, the
risk-benefit ratio of the diagnostic and therapeutic interventions for patients with little
time left to live must be carefully considered before undertaking diagnostic steps.
Frequently, secondary etiologies cannot be identified, and dyspnea is the consequence
of progression of the underlying disease that cannot be treated. The anxiety caused by
dyspnea and the choking sensation can significantly exacerbate the underlying dyspnea
in a negative reinforcing cycle.
INTERVENTIONS
When reversible or treatable etiologies are diagnosed, they should be treated as long
as the side effects of treatment, such as repeated drainage of effusions or
anticoagulants, are less bothersome than the dyspnea itself. Usually, treatment will be
symptomatic (Table 9-6). Low-dose opioids reduce the sensitivity of the central
respiratory center and the sensation of dyspnea. If patients are not receiving opioids,
weak opioids can be initiated; if patients are already receiving opioids, then morphine
should be used. Benzodiazepines are helpful if anxiety is present. If the patient has a
history of COPD, bronchodilators may also be helpful, as may glucocorticoids.
Secretions can be dried with scopolamine. Oxygen can be used, although it may only be
an expensive placebo. Medical staff should sit the patient upright, remove smoke or
other irritants such as perfume, ensure a supply of fresh air with sufficient humidity,
and minimize other factors that can increase anxiety.

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Constipation
FREQUENCY
Constipation is reported in up to 90% of terminally ill patients.
ETIOLOGY
While hypercalcemia and other factors can cause constipation, it is a predictable
consequence of the use of opioids for the relief of pain and dyspnea and of tricyclic
antidepressants, from their anticholinergic effects, as well as of the inactivity and poor
diet that are common among seriously ill patients. If untreated, constipation can cause
substantial pain, vomiting, impaction, and mental confusion. Whenever opioids, tricyclic
antidepressants, and other medications known to cause constipation are used,
preemptive cathartic treatment should be instituted.
ASSESSMENT
Establish the patient's previous bowel habits, including the frequency, consistency, and
volume. Abdominal and rectal examinations should be performed to exclude impaction
or acute abdomen. Radiographic assessments beyond a simple flat plate of the
abdomen are rarely necessary except when obstruction cannot be definitively excluded.
INTERVENTION
While physical activity, adequate hydration, and dietary treatments with fiber and
roughage can be helpful, each is limited in its effectiveness for most seriously ill
patients, and roughage may exacerbate problems if impaired motility is the etiology.
Fiber is contraindicated in the presence of opioid use. Stimulant and osmotic laxatives,
stool softeners, fluids, and enemas are the mainstay of therapy (Table 9-5). When
preventing constipation from opioids and other medications, a combination of a laxative
and stool softener should be utilized. If after several days of treatment a bowel
movement has not occurred, a rectal examination to remove impacted stool and to
p lace
a suppository is necessary. For patients with impending bowel obstruction or gastric
stasis, octreotide to reduce secretions can be helpful.

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Fatigue
FREQUENCY
Fatigue and weakness are the most common symptoms of terminally ill patients. More
than 90% of the terminally ill experience fatigue and/or weakness. Fatigue is frequently
cited as among the most distressing of symptoms.
ETIOLOGY
The multiple causes of fatigue in the terminally ill can be categorized as resulting from
the underlying disease; from disease-induced factors, such as tumor necrosis factor
and other cytokines; and from secondary factors such as cachexia, dehydration,
anemia, infection, hypothyroidism, and drug side effects. Apart from low caloric intake,
loss of muscle mass and changes in muscle enzymes may play an important role in
fatigue of terminal illness. The importance of changes in the CNS, especially the
reticular activating system, have been hypothesized based on reports of fatigue in
patients receiving cranial radiation, experiencing depression, or with chronic pain in the
absence of cachexia or other physiologic changes. Finally, depression and other causes
of psychological distress can contribute to fatigue.
ASSESSMENT
Fatigue is subjective; objective changes, even in body weight, may be absent.
Consequently, assessment must rely on patient self-reporting. Scales used to measure
fatigue, such as the Edmonton Functional Assessment Tool, the Fatigue Self-Report
scales, or the Rhoten Fatigue scale, are usually appropriate for research rather than
clinical purposes. In clinical practice, a simple performance assessment such as the
Karnofsky Performance Status or the Eastern Cooperative Oncology Group's question
“How much of the day does the patient spend in bed?” may be the best measure. In
this 0 to 4 performance status assessment, a 0 = normal activity, 1 = symptomatic
without being bedridden, 2 = requiring some, but <50%, bed time, 3 = bedbound more
than half the day, and 4 = bedbound all the time. Such a scale allows for assessment
over time and by third parties.
INTERVENTION
At the end of life, fatigue will not be “cured.” The goal is the ameliorate it and adjust
expectations. Behavioral interventions should be utilized to avoid blaming the patient
for inactivity, and to educate both the family and patient that the underlying disease
causes physiologic changes producing low energy levels. Understanding that the
problem is physiologic not psychological can help to alter expectations regarding the
patient's level of physical activity. Practically, this may mean reducing routine activities,
such as housework and cooking, or social events outside the house, and making it
acceptable to receive guests lying on a couch. At the same time, institution of exercise
regimens that are possible can raise endorphins, reduce muscle wasting, and reduce
the risk of depression. In addition, ensuring good hydration without worsening edema
may help reduce fatigue. Discontinuing medications that worsen fatigue, such as
cardiac medications or even opioids, if pain is well controlled, may help.Only a few pharmacologic interventions target fatigue and weakness. Glucocorticoids
can increase energy and enhance mood. Dexamethasone is preferred for its once-a-day
dosing and minimal mineralocorticoid activity. However, use for >1 month tends to
diminish the positive effects. Psychostimulants, such as dextroamphetamine (5 to 10
mg orally) and methylphenidate (2.5 to 5 mg orally), can also enhance energy levels.
Dosages should be given in the morning and at noon, otherwise they can cause
counterproductive insomnia. Modafinil, developed for narcolepsy, has shown some
promise in the treatment of fatigue. Its precise role in the fatigue at the end of life is yet
to be determined.

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MENTAL SYMPTOMS AND THEIR MANAGEMENT
Depression
FREQUENCY
Depression at the end of life presents an apparently paradoxical situation. Many people
believe that depression is normal among seriously ill patients because they are dying.
People frequently say “wouldn't you be depressed?” Depression is not a necessary
part of terminal illness and constitutes needless suffering. While sadness, anxiety,
anger, and irritability are normal responses to a serious condition, they are typically of
modest intensity and transient. Persistent sadness and anxiety are abnormal and
suggestive of major depression. While as many as 75% of terminally ill patients
experience depressive symptoms, <25% of terminally ill patients have major
depression.
ETIOLOGY
Previous history of depression, family history of depression or manic-depression, and
prior suicide attempts are associated with increased risk for depression among
terminally ill patients. Other symptoms, such as pain and fatigue, are associated with
higher rates of depression; uncontrolled pain can exacerbate depression, and
depression can cause patients to be more distressed by pain. Many medications used in
the terminal stages, including glucocorticoids, and some anticancer agents, such as
tamoxifen, interleukin 2, interferon α, and vincristine, are also associated with
depression. Some terminal conditions, such as pancreatic cancer and certain strokes,
have been reported to be associated with higher rates of depression, although this is
controversial. Finally, depression may be attributable to grief over the loss of a role or
function, social isolation, or loneliness.
ASSESSMENT
Diagnosing depression among patients at the end of life is complicated because many
of the vegetative symptoms contained in the DSM IV criteria—insomnia, anorexia and
weight loss, fatigue, decreased libido, and difficulty concentrating—are associated with
the dying process itself. The assessment of depression in seriously ill patients must
focus on the dysphoric mood, helplessness, hopelessness, and lack of interest and
enjoyment. The single questions “how often do you feel downhearted and blue?”
(more than a good bit of the time or similar responses) or “do you feel depressed most
of the time?” are appropriate for screening.
Certain conditions may be confused with depression. Endocrinopathies, such as
hypothyroidism or Cushing's syndrome, electrolyte abnormalities such as
hypercalcemia, and akathisia, especially from dopamine blocking antiemetics such as
metoclopramide and prochlorperazine, can mimic depression and should be excluded.
INTERVENTIONS
Physicians must treat any physical symptom, such as pain, that may be causing or
exacerbating depression. Nonpharmacologic interventions, including group or individual
psychological counseling, and behavioral therapies, such as relaxation or imagery, can

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be helpful, especially in combination with drug therapy.
Pharmacologic interventions remain the core of therapy. The same medications are
used to treat depression in terminally ill as in non-terminally ill patients.
Psychostimulants may be preferred for patients with a poor prognosis or for those with
fatigue or opioid-induced somnolence. Psychostimulants are comparatively fast acting,
working within a few days. Dextroamphetamine or methylphenidate should be started at
2.5 to 5.0 mg in the morning and at noon, the same starting dosages used for treating
fatigue. The dose can be escalated up to 15 mg twice a day; higher doses are only
rarely necessary. Pemoline is a nonamphetamine psychostimulant with minimal abuse
potential. It is also effective as an antidepressant beginning at 18.75 mg in the morning
and at noon. Because it can be absorbed through the buccal mucosa, it is preferred for
patients with intestinal obstruction or dysphagia. If used for prolonged periods, liver
function must be monitored. The psychostimulants can also be combined with more
traditional antidepressants, while waiting for the latter to become effective, and then
tapered after a few weeks if necessary. Psychostimulants have side effects, particularly
initial anxiety, insomnia, and rarely paranoia, which may necessitate lowering the dose
or discontinuing treatment. A newer, promising agent is mirtazepine starting at 7.5 mg
before bed. It is sedating and has antiemetic and anxiolytic properties with few drug
interactions. Its side effect of weight gain may also be beneficial for seriously ill
patients, and it is available in orally disintegrating tablets.
For patients with a prognosis of several months or longer, selective serotonin reuptake
inhibitors, including fluoxetine, sertraline, and citalopram, and serotonin-noradrenaline
reuptake inhibitors, such as venlafaxine, are the preferred treatment because of their
efficacy and comparatively few side effects. Because low doses of these medications
may be effective for seriously ill patients, use half the usual starting dose for healthy
adults. The starting dose for fluoxetine is 10 mg once a day. In most cases, once-a-day
dosing is possible.
Atypical antidepressants are recommended only in selected circumstances, usually with
the assistance of a specialty consultation. Trazadone can be an effective
antidepressant but is sedating and can cause orthostatic hypotension and priapism.
Therefore, it should be used only when a sedating effect is desired. In addition to its
antidepressant effects, bupropion is energizing, making it useful for depressed patients
suffering from fatigue. However, it can cause seizures, preventing its use for patients
with a risk of CNS neoplasms or terminal delirium. Finally, alprazolam, a
benzodiazepine, starting at 0.25 to 1.0 mg three times a day, can be effective in
seriously ill patients suffering from a combination of anxiety and depression. While it is
potent and works quickly, it has many drug interactions and may cause delirium,
especially among very ill patients, because of its strong binding to the benzodiazepine-
GABA receptor complex.
Unless used as adjuvants for the treatment of pain, tricyclic antidepressants are not
recommended. Similarly the monoamine oxidase inhibitors are not recommended
because of their side effects and dangerous drug interactions.

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Delirium
FREQUENCY
In the weeks or months before death, delirium is uncommon, although it may be significantly underdiagnosed. However, delirium becomes relatively common in the
hours and days immediately before death. As many as 85% of patients in the active
stages of dying from cancer may experience terminal delirium.
ETIOLOGY
Delirium is a global cerebral dysfunction characterized by alterations in cognition and
consciousness. It is frequently preceded by anxiety, changes in sleep patterns
(especially reversal of day and night), and decreased attention. In contrast to dementia,
delirium has an acute onset and is reversible, although reversibility may be more
theoretical than real for patients near death. It is possible to have delirium in a patient
with dementia.
Causes of delirium include metabolic encephalopathy arising from liver failure,
hypoxemia, or sepsis; electrolyte imbalances such as hypercalcemia; nutritional
deficiencies such as vitamin B12 deficiency; paraneoplastic syndromes; and primary
brain tumors or brain metastases. Commonly, among dying patients, delirium can be
caused by side effects of treatments, including radiation for brain metastases, and
medications, including opioids, glucocorticoids, anticholinergic drugs, antihistamines,
antiemetics, and many chemotherapeutic agents. In many terminally ill patients, the
etiology will be multifactorial; e.g., dehydration may exacerbate opioid-induced delirium.
ASSESSMENT
Delirium should be recognized in any terminally ill patient with new onset of
disorientation, impaired cognition, somnolence, fluctuating levels of consciousness, or
delusions, with or without agitation. Delirium must be distinguished from acute anxiety
a nd depression,
as well as dementia. In some cases, use of formal assessment tools such as the Mini-
Mental Status Examination (which does not distinguish delirium from dementia) or the
Delirium Rating Scale (which does distinguish delirium from dementia) may be helpful in
distinguishing delirium from other processes. The patient's list of medications must be
carefully evaluated. Nonetheless, a reversible etiologic factor for delirium is found in
fewer than half of terminally ill patients. Because most terminally ill patients
experiencing delirium will be very close to death and may be at home, extensive
diagnostic evaluations, such as lumbar punctures or neuroradiologic examinations, are
usually inappropriate.
INTERVENTIONS
One of the most important objectives of terminal care is to provide terminally ill patients
the lucidity to say goodbye to the people they love. Delirium, especially with agitation
during the final days, is distressing to family and caregivers. A strong determinant of
bereavement difficulties is witnessing a difficult death. Thus, terminal delirium should
be treated aggressively.
At the first sign of delirium, such as day-night reversal with slight changes in mentation,
let the family know that it is time to be sure that everything they want to have said has
been said. The family should be informed that delirium is common just before death.
If medications such as opioids are suspected of being a cause of the delirium, then unnecessary agents should be discontinued. Other reversible causes such as
constipation, urinary retention, and metabolic abnormalities should be treated.
Supportive measures aimed at providing a familiar environment should be instituted,
including restricting visits only to individuals with whom the patient is familiar and
eliminating new experiences; orienting the patient, if possible, by providing a clock and
calendar; and gently correcting the patient's hallucinations or cognitive mistakes.
Pharmacologic management focuses on the use of neuroleptics and, in the extreme,
anesthetics (Table 9-7). Haloperidol remains first-line therapy. Usually, patients can be
controlled with a low dose (1 to 3 mg/d), although some may require as much as 20
mg/d. It can be administered orally, subcutaneously, or intravenously. Intramuscular
injections should not be used, except when it is the only way to get a patient under
control. Chlorpromazine (10 to 25 mg every 4 to 6 h) can be useful if sedation is
desired. Dystonic reactions resulting from dopamine blockade are a side effect of
neuroleptics, although they are reported to be rare when used to treat terminal delirium.
The new atypical neuroleptics—risperidone and olanzapine—have also been used
successfully and are especially helpful for patients with longer anticipated life spans
since they are less likely to cause dysphoria and have a lower risk of dystonic
reactions. If patients develop dystonic reactions, benztropine should be administered.
Neuroleptics may be combined with lorazepam to reduce agitation when the delirium is
the result of alcohol or sedative withdrawal.
If no response to first-line therapy is seen, a specialty consultation should be obtained
with a change to a different medication. If patients fail to improve after a second
neuroleptic, then sedation with an anesthetic such as propofol or continuous-infusion
midazolam may be necessary. By some estimates, at the very end of life as many as
25% of patients experiencing delirium, especially restless delirium with myoclonus or
convulsions, may require sedation.
Physical restraints should be used with great reluctance only when the patient's
violence is threatening to self or others. If used, their appropriateness should be
reevaluated frequently.

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SOCIAL NEEDS AND THEIR MANAGEMENT
Financial Burdens
FREQUENCY
Dying can impose substantial economic strains on patients and families, causing
distress. In the United States, with one of the least comprehensive health insurance
systems among the developed countries, about 20% of terminally ill patients and their
families spend >10% of family income on health care costs over and above health
insurance premiums. Between 10 and 30% of families sell assets, use savings, or take
out a mortgage to pay for the patient's health care costs. Nearly 40% of terminally ill
patients in the United States report that the cost of their illness is a moderate or great
economic hardship for their family.
The patient is likely to reduce and stop working. In 20% of cases, a family member of
the terminally ill patient stops working to provide care. The major underlying causes of
economic burden are related to poor physical functioning and care needs, such as the
need for housekeeping, nursing, and personal care. More debilitated patients and poor patients experience greater economic burdens.
INTERVENTION
The economic burden should not be ignored as a private matter. It has been associated
with a number of adverse health outcomes, including preferring comfort care over lifeprolonging
care as well as consideration of euthanasia or physician-assisted suicide.
Economic burdens tend to increase the psychological distress of families and
caregivers of terminally ill patients. Assistance from a social worker, early on if
possible, to ensure access to all available benefits may be helpful. Many people and
health care providers are unaware of options for long-term care insurance, respite care,
the Family Medical Leave Act, and other sources of assistance.

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Relationships
FREQUENCY
Settling personal issues and closing the narrative of lived relationships are universal
needs. When asked if sudden death or death after an illness is preferable, respondents
often initially select the former but soon change to the latter as they reflect on the
importance of saying goodbye. Bereaved family members who have not had the chance
to say goodbye often have a more difficult grief process.
INTERVENTION
Care of seriously ill patients requires efforts to facilitate the types of encounters and
time spent with family and friends that are necessary to meet these needs. Family and
close friends may need to be accommodated with unrestricted visiting hours, which
perhaps may include sleeping near the patient even in otherwise regimented
institutional settings. Physicians and health care providers may facilitate and resolve
strained interactions between the patient and other family members. Assistance for
patients and family members who are unsure about how to create or help preserve
memories, whether by providing raw materials such as a scrap book or memory box or
by offering them suggestions and informational resources, can be deeply appreciated.
Taking photographs and creating videos can be especially helpful to terminally ill
patients who have younger children or grandchildren.

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EXISTENTIAL NEEDS AND THEIR MANAGEMENT
FREQUENCY
Religion and spirituality are often important to dying patients. Nearly 70% of patients
report becoming more religious or spiritual when they became terminally ill, and many
find comfort in various religious or spiritual practices such as prayer. However, ~20% of
terminally ill patients become less religious, frequently feeling somehow cheated or
betrayed by becoming terminally ill. For other patients, the need is for existential
meaning and purpose that is distinct from and maybe even antithetical to religion or
spirituality.
ASSESSMENT
Health care providers are often hesitant about involving themselves in the religious,
spiritual, and existential experiences of their patients, because it may seem private,
related to alternative life-styles, or “soft.” But physicians and other members of the
interdisciplinary team should be able to at least detect spiritual and existential needs.
Screening questions have been developed for a physician's spiritual history taking.
Spiritual distress can amplify other types of suffering and even masquerade as
intractable physical pain, anxiety, or depression, for instance. The screening questions
in the whole-person assessment are usually sufficient. Deeper evaluation and
intervention are rarely appropriate for the physician unless no other member of an
interdisciplinary team is available or suitable. Pastoral care providers may be helpful,
whether from the medical institution or the patient's community.
INTERVENTION
Precisely how religious practices, spirituality, and existential explorations can be
facilitated and improve end-of-life care is not well established. In one study, only 36%
of respondents indicated that a clergy member would be comforting. Nevertheless, this
increase in religious and spiritual interest among a substantial fraction of dying patients
suggests inquiring of individual patients how this need can be addressed.

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MANAGING THE LAST STAGES
WITHDRAWING AND WITHHOLDING LIFE-SUSTAINING
TREATMENT
LEGAL ASPECTS
For centuries, it has been deemed ethical to withhold or withdraw life-sustaining
interventions. The current legal consensus is that patients have a constitutional and
common law right to refuse medical interventions (Table 9-8). Courts have held that
incompetent patients have a right to refuse medical interventions. For patients who are
incompetent and terminally ill and who have not completed an advance care directive,
next of kin can exercise this right, although this may be restricted in some states
depending how clear and convincing the evidence is of the patient's preferences.
Courts are limiting families' ability to terminate life-sustaining treatments from patients
who are conscious, incompetent, but not terminally ill. In theory, patients' right to
refuse medical therapy can be limited by four countervailing interests: (1) preservation
of life, (2) prevention of suicide, (3) protection of third parties such as children, and (4)
preserving the integrity of the medical profession. In practice, these interests almost
never override the right of competent patients and incompetent patients who have left
explicit and advance care directives.
Regarding incompetent patients who either appointed a proxy without specific
indications of their wishes or who never completed an advance care directive, three
criteria have been suggested to guide the decision to terminate medical interventions.
Some commentators suggest that ordinary care should be administered but
extraordinary care could be terminated. Because the ordinary/extraordinary distinction
is too vague, courts and commentators widely agree that it should not be used to justify
decisions about stopping treatment. Many courts have advocated use of the substitutedjudgment
criterion, which holds that the proxy decision-makers should try to imagine
what the incompetent patient would do if he or she were competent. However, most
proxies, even close family members, cannot accurately predict what the patient would
have wanted. Therefore, substituted judgment becomes more of a guessing game than
a way of fulfilling the patient's wishes. Finally, the best-interests criterion holds that
proxies should evaluate treatments by balancing their benefits and risks and select
those treatments in which the benefits maximally outweigh the burdens of treatment.
Yet, as many family conflicts reveal, different individuals can have very different views
of what is in the patient's best interests. Indeed, this criterion has been criticized
because no objective way exists of determining the balance between benefits and
burdens; it depends on a patient's personal values. As a matter of practice, physicians
rely on family members to make decisions that they feel are best and object only if
these decisions seem to demand treatments that the physicians consider not beneficial.
PRACTICES
Withholding and withdrawing acutely life-sustaining medical interventions from
terminally ill patients are now standard practice. More than 90% of American patients
die without cardiopulmonary resuscitation (CPR), and just as many forgo other
potentially life-sustaining interventions. For instance, during 1987 to 1988 in ICUs, CPR
was performed 49% of the time, but only 10% of the time in 1992 to 1993. On average,
3.8 interventions, such as vasopressors and transfusions, were stopped from each dying ICU patient.
Mechanical ventilation may be the most challenging intervention to withdraw. The two
approaches are terminal extubation, which is the removal of the endotracheal tube, and
terminal wean, which is the gradual reduction of the FIO2
or ventilator rate. One-third of
ICU physicians prefer to use the terminal wean technique, while 13% extubate; the
majority of physicians utilize both techniques. Some recommend the terminal wean
because patients do not develop upper airway obstruction and the distress caused by
secretions or stridor; however, terminal weaning can prolong the dying process. To
ensure comfort for conscious or semiconscious patients before withdrawal of the
ventilator, neuromuscular blocking agents should be terminated and sedatives and
analgesics administered. Removing the neuromuscular blocking agents permits patients
to show discomfort, facilitating the titration of sedatives and analgesics; it also permits
interactions between patients and their families. A common practice is to inject a bolus
of midazolam (2 to 4 mg) before withdrawal followed by 5 to 10 mg of morphine and
continuous infusion of morphine (50% of the bolus dose per hour) during weaning.
Additional boluses of morphine or increases in the infusion rate should be administered
for any distress. Higher doses will be needed for patients already receiving anxiolytics
and opioids. Families need to be warned that up to 10% of patients unexpectedly
survive for 1 day or more after mechanical ventilation is stopped.

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FUTILE CARE
Beginning in late 1980s, some commentators argued that physicians could terminate
futile treatments demanded by families of terminally ill patients. No objective definition
or standard of futility exists. Physiologic futility means that an intervention will have no
physiologic effect. Some have defined qualitative futile treatments as those that “fail
to end a patient's total dependence on intensive medical care.” Quantitative futility
occurs “when physicians conclude (either through personal experience, experiences
shared with colleagues, or consideration of reported empiric data) that in the last 100
cases, a medical treatment has been useless.” The term conceals subjective value
judgments about when a treatment is “not beneficial.” Deciding whether a treatment
that obtains an additional 6 weeks of life or a 1% survival advantage confers benefit
depends upon patients' preferences and goals. Furthermore, physicians' predictions of
when treatments were futile deviated markedly from the quantitative definition. When
re sidents thought CPR was quantitatively futile, more than one in five
patients had a >10% chance of survival to hospital discharge. Quantitative futility rarely
applies in ICU settings. Most commentators reject using futility as a criterion of
withdrawing care.

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EUTHANASIA AND PHYSICIAN-ASSISTED SUICIDE
Euthanasia and physician-assisted suicide are defined in Table 9-9. Terminating lifesustaining
care and providing opioid medications to manage symptoms have long been
considered ethical by the medical profession and legal by courts and should not be
confused with euthanasia or physician-assisted suicide.
LEGAL ASPECTS
Euthanasia is legal in the Netherlands and Belgium. Euthanasia was legalized in the
Northern Territory of Australia but then repealed. Euthanasia is not legal in any state in
the United States. Physician-assisted suicide is legal in Oregon but only if multiple
criteria are met and then only after a process that includes a 15-day waiting period. In
Switzerland, a layperson can legally assist suicide. In all other countries and all other
states in the United States, physician-assisted suicide and euthanasia are illegal
explicitly or by common law.
PRACTICES
Fewer than 10 to 20% of terminally ill patients actually consider euthanasia and/or
physician-assisted suicide for themselves. In the Netherlands and Oregon, >70% of
patients utilizing these interventions are dying of cancer; <5% of deaths by euthanasia
or physician-assisted suicide involve patients with AIDS or amyotrophic lateral
sclerosis. In the Netherlands, if all legal and illegal acts are grouped, euthanasia and
physician-assisted suicide account for <3.5% of all deaths. In Oregon, ~0.1% of
patients die by physician-assisted suicide, although many commentators suspect this is
an undercount of actual cases.
Pain is not a primary motivator for patients' requests for or interest in euthanasia and/or
physician-assisted suicide. Among the first patients to receive physician-assisted
s uicide in Oregon, only 1 patient
of 15 had inadequate pain control compared to 15 of 43 patients in a control group
experiencing inadequate pain relief. Depression, hopelessness, and, more vaguely,
worries about loss of dignity or autonomy appear to be the primary factors motivating a
desire for euthanasia or physician-assisted suicide.
Euthanasia and physician-assisted suicide are no guarantee of a painless, quick death.
Data from the Netherlands indicate that in as many as 20% of cases technical and other
problems arose, including patients waking from coma, not becoming comatose,
regurgitating medications, and a prolonged time to death. Problems were significantly
more common in physician-assisted suicide, sometimes requiring the physician to
intervene and provide euthanasia.
After receiving a request for euthanasia and/or physician-assisted suicide, health care
providers should carefully clarify the request with empathic, open-ended questions to
help elucidate the underlying cause for the request such as: “What makes you want to
consider this option?” Endorsing either moral opposition or moral support for the act
tends to be counterproductive, either lending an impression of being judgmental or of
endorsing the idea that the patient's life is worthless. Health care providers must
reassure the patient of continued care and commitment. The patient should be educated
about alternative, less controversial options, such as symptom management and
withdrawing any unwanted treatments; the reality of euthanasia and/or physicianassisted
suicide, since the patient is likely to have misconceptions about its
effectiveness; and also the legal implications of the choice. Depression, hopelessness,
and other symptoms of psychological distress as well as physical suffering and
economic burdens are likely factors motivating the request, and such factors should be
assessed and treated aggressively. After these interventions and clarification of
options, most patients proceed with a less controversial approach of declining lifesustaining
interventions, possibly including refusal of nutrition and hydration.

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CARE DURING THE LAST HOURS
Most laypersons have limited experiences with the actual dying process and death.
They frequently do not know what to expect of the final hours, and afterwards.
Therefore, the family and other caregivers must be prepared, especially if the plan is for the patient to die at home.
Patients in the last days of life experience extreme weakness and fatigue and become
bedbound; this can lead to bedsores. They stop eating and drinking with drying of
mucosal membranes and dysphagia. Careful attention to oral swabbing, lubricants for
lips, and use of artificial tears can provide a form of care to substitute for attempts at
feeding the patient. With loss of the gag reflex and dysphagia, patients may also
experience accumulation of oral secretions, producing noises during respiration
sometimes called “the death rattle.” Scopolamine can reduce the secretions. Patients
also experience changes in respiration with periods of apnea or Cheyne-Stokes
breathing. Decreased intravascular volume and cardiac output causes tachycardia,
hypotension, peripheral coolness, and livedo reticularis (skin mottling). Patients can
also have urinary and, less frequently, fecal incontinence. Changes in consciousness
and neurologic function generally lead to two different paths to death (Fig. 9-2).
Each of these terminal changes can cause patients and families distress, requiring
reassurance and targeted interventions (Table 9-10). Informing families that these
changes might occur, and even providing them an information sheet, can help to
preempt problems and minimize distress. Understanding that patients stop eating
because they are dying, not dying because they have stopped eating, can reduce family
and caregiver anxiety. Similarly, informing the family and caregivers that the “death
rattle” may occur and that it is not indicative of suffocation or choking can reduce their
preoccupation with the breathing sounds.
Families and caregivers can also feel guilty about stopping treatments, fearing that they
are “killing” the patient. This may lead to demands for interventions that may be
in effective. In such cases, the
physician should remind the family and caregivers about the inevitability of events, the
palliative goals, and that interventions may prolong the dying process and cause
discomfort. Physicians should also emphasize that withholding treatments is both legal
and ethical, and that they are not the cause of the patient's death. This reassurance
may need to be provided multiple times.
Hearing and touch are said to be the last senses to stop functioning. Therefore, families
and caregivers should be permitted to communicate with the dying patient. Encouraging
them to talk directly to the patient, even if he or she is unconscious, and hold the
patient's hand or demonstrate affection in other ways can be an effective way to
channel their urge “to do something” for the patient.
When the plan is for the patient to die at home, the physician must inform the family
and caregivers how to determine that the patient has died. The cardinal signs are
cessation of cardiac function and respiration; the pupils become fixed; the body
becomes cool, ashen white, and waxy; muscles relax; and incontinence may occur.
Remind the family and caregivers that the eyes may remain open even when the patient
has died because the retroorbital fat pad may be depleted permitting the orbit to fall
posteriorly, which makes it difficult for the eyelids to cover the eyeball.
The physician should establish a plan of who the family or caregivers will contact when
the patient is dying and has died. Without a plan, they may panic and call 911,
unleashing a cascade of unwanted events from arrival of emergency personal and
resuscitation to hospital admission. The family and caregivers should be instructed to
contact the hospice (if one is involved), the covering physician, or the on-call member
of the palliative care team. They should also be told that the coroner need not be
called, unless the state requires it for all deaths. Unless foul play is suspected, the health care team need not contact the coroner either.
Just after the patient dies, even the best-prepared family may experience shock and
loss and be emotionally distraught. They need time to assimilate the event and be
comforted. Health care providers should write a bereavement card or letter to the
family. The purpose is to communicate about the patient, perhaps emphasizing the
p atient's virtues,
the honor it was to care for the patient, and express concern for the family's hardship.
Many physicians attend the funerals of their patients. While this is beyond any medical
obligation, the presence of the physician can be a source of support to the grieving
family, and the funeral provides an opportunity for closure for the physician.
Death is a strong predictor of poor health, and even mortality, for the surviving spouse.
It may be important to alert the spouse's physician about the death to be aware of
symptoms that might require professional attention.

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PALLIATIVE CARE SERVICES: HOW AND WHERE
Determining the best approach to providing palliative care to patients will depend upon
patient preferences, the availability of caregivers and specialized services in close
proximity, institutional resources, and reimbursement. A hospice is a leading, but not
the only, model of palliative care services. In the United States, Medicare pays for
hospice services under Part A, the hospital insurance part of reimbursement. Two
physicians must certify that the patient has a prognosis of ≤6 months, if the disease
runs its usual course. Prognoses are probabilistic by their nature; patients are not
required to die within 6 months but rather to have a condition from which half the
individuals with it would be dead within 6 months. Patients sign a hospice enrollment
form that states their intent to forgo curative services related to their terminal illness,
but they can still receive medical services for other comorbid conditions. Patients can
also un-enroll and re-enroll later; the hospice Medicare benefit can be revoked later to
secure traditional Medicare benefits. Payments to the hospice are per diem, not fee-forservice.
Payments are intended to cover physician services for the medical direction of
the care team; regular home care visits by registered nurses and licensed practical
nurses; home health aid and homemaker services; dietary counseling; chaplain
services; social work services; bereavement counseling; and medical equipment,
supplies, and medications. Additional clinical care, including services of the primary
physician, is covered by Medicare Part B even while the hospice Medicare benefit is in
place.
By 1996, the mean length of enrollment in a hospice was 65 days, with the median
being <24 days. Since then, it appears the length of enrollment is declining. Such short
stays create barriers to establishing high-quality palliative services in patients' homes
and also place financial strains on hospice providers since the initial assessments and
institution of care plans are resource intensive. Physicians should initiate early referrals
to the hospice to allow more time for patients to receive palliative care.
Hospice care has been the main way of securing palliative services for terminally ill
patients. However, efforts are now being made to ensure continuity of palliative care
across settings and through time. Palliative care services are becoming available as
consultative services in hospitals, in day care and other outpatient settings, and in
nursing homes. In the United States, while the vast majority of hospice care is provided  in residential homes, just over 10% now occurs in nursing homes. Palliative care
consultations for non-hospice patients can be billed as for other consultations under
Medicare Part B, the physician reimbursement part. Many believe palliative care should
be offered to patients regardless of their prognosis. A patient and his or her family
should not have to make a “curative vs. palliative care” decision because it is rarely
psychologically possible to make such a decisive switch to embracing mortality.

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FUTURE DIRECTIONS
OUTCOME MEASURES
Care near the end of life cannot be measured by most of the available validated
outcome measures since palliative care does not consider death a bad outcome.
Similarly, the family and patients receiving end-of-life care may not desire the elements
elicited in current quality-of-life measurements. Symptom control, enhanced family
relationships, and quality of bereavement are difficult to measure and are rarely the
primary focus of carefully developed or widely used outcome measures. Nevertheless,
outcomes are as important in end-of-life care as in any other field of medical care.
Specific end-of-life care instruments are being developed both for assessment, such as
The Brief Hospice Inventory and NEST (needs near the end of life screening tool), and
for outcome measures, such as the Palliative Care Outcomes Scale. The field of end-oflife
care is ready to enter an era of evidence-based practice and continuous
improvement through clinical trials.