Libby: Braunwald's Heart Disease: A

Textbook of Cardiovascular Medicine, 8th

ed.
Copyright © 2007 Saunders, An Imprint of Elsevier

MANAGING THE LAST STAGES

WITHDRAWING AND WITHHOLDING LIFESUSTAINING TREATMENT.

For centuries, it has been deemed ethical to withhold or withdraw life-sustaining

interventions. For patients who are incompetent and terminally ill but have not completed
an advance care directive, next-of-kin can exercise this right, although this may be
restricted in some states depending on how clear and convincing the evidence is of the
patient's preferences. In theory, a patient's 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 or incompetent patients who have left explicit advance care directives. Regarding
incompetent patients whose wishes are not clear, two criteria can help guide decisions.
First, many courts have advocated use of the substituted-judgment criterion, which holds
that the proxy decision-makers should try to imagine what the incompetent patient would
do if he or she were competent. However, most proxies, even close family members,
cannot accurately predict what the patient would have wanted. The second criterion is
that of best interests and holds that proxies should decide on the basis of the likely best
outcome for the patient. Yet as many family conflicts reveal, different people can have
different views of what is in the patient's best interests. As a matter of practice, physicians
rely on family members to make decisions that they feel are best and only object if these
decisions seem to demand treatments that the physicians consider nonbeneficial.

PHYSICIANS' ORDERS REGARDING RESUSCITATION.

In the SUPPORT Project, only 25 percent of patients hospitalized with heart failure
recalled having discussions with their physicians about resuscitation preferences.[16]
Whenever a patient is a suitable candidate for a Do Not Resuscitate (DNR) order, he or
she deserves to have had a comprehensive discussion about goals of care, their plan of
care, and possibly also advance care planning. Use of predesigned forms such as the
Physicians Orders for Life-Sustaining Treatments in place of limited DNR forms can
encourage these more comprehensive and coherent approaches to creating plans of care.
In general, an isolated DNR order with no reference to other life-sustaining treatment
preferences can be considered a red flag that should prompt a physician to include or
return to a whole-person assessment and a comprehensive plan for care with goal-tailored
treatment choices.

AUTOMATED IMPLANTABLE CARDIAC DEFIBRILLATORS.

With increasing indications for automated implantable cardiac defibrillators (AICDs) in
patients with left ventricular dysfunction, the number of patients receiving these devices
will undoubtedly increase dramatically in the future.[27] The difficult ethical dilemmas
include not only the indications for implanting AICDs and the impact on health care
finances but also the issues regarding when these devices should be deactivated.[28] These
issues also include the need to discuss these decisions with patients and their families.[6]
These discussions should be an essential component of overall advance care planning.

The thorny issues of AICD management are highlighted by a study of family members'
views of AICDs in end-of-life care.[29] Among 100 family members of patients who died
with AICDs in place, only 27 family members reported discussions of possible
deactivation and often only in the last few days of life.

MECHANICAL VENTILATION.

Perhaps the most challenging intervention to withdraw is mechanical ventilation. Two

approaches are used: “terminal extubation,” which is the removal of the endotracheal
tube, and “terminal wean,” which is the gradual reduction of the Fio2 or ventilator rate.
Some physicians recommend the terminal wean because patients do not develop upper
airway obstruction and the distress caused by secretions or stridor, but it is reported that
terminal weaning can prolong the dying process. To ensure comfort for conscious or
semiconscious patients, 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 percent of the bolus dose per hour). Higher doses will be necessary for
patients already receiving anxiolytics and opioids. Caregivers should remove any
neuromuscular blocking agents so that patients can show any discomfort that can in turn
allow medication titration or additional boluses of morphine or midazolam. Families need
to be warned that up to 10 percent of patients unexpectedly survive for 1 day or more
after mechanical ventilation is stopped.

FUTILE CARE.

Beginning in the 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. The term conceals subjective value judgments about when a
treatment is not beneficial. A more practical approach acknowledges that many cases in
which futility concerns are raised overlie communication gaps or unresolved personal
issues that are best dealt with in team or family meetings. Occasionally, true value
differences exist; these may be best handled with assistance from an ethics committee.

EUTHANASIA/PHYSICIAN-ASSISTED SUICIDE.

Terminating life-sustaining intervention and providing opioids to manage symptoms are

not to be confused with euthanasia or physician-assisted suicide. Both the former, unlike
the latter, have long been considered ethical by the medical profession and legal by
courts.
A growing body of data indicates that depression, hopelessness, and worries about loss of
dignity or autonomy are the primary factors motivating a desire for euthanasia or
physician-assisted suicide. Although any of these can occur in patients with
cardiovascular conditions, there appear to be fewer requests in this population than in
cancer and AIDS patients. Perhaps the characteristic sudden death among cardiac patients
helps to avoid some of the fears of indignity and dependence associated with a slow,
highly symptomatic decline. Nonetheless, multiple symptoms and chronic disability do
occur in patients with end-stage heart disease, and requests for physician-assisted suicide
or euthanasia also occur. Cardiologists should know how to respond to such requests.

After receiving a request for euthanasia and/or physician-assisted suicide, probe 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 worthlessness of the patient's life.
Health care providers must reassure the patient of continued care and commitment.
Simultaneously, the patient should be educated about: (1) alternative, less controversial
options such as symptom management and withdrawing any unwanted treatments; (2) the
reality of euthanasia and/or physician-assisted suicide because the patient is likely to have
misconceptions about its effectiveness; and (3) the legal implications of the choice. As
indicated, depression, hopelessness, and other symptoms of psychological distress, as
well as physical suffering and economic burdens, are likely factors motivating the
request. Health care providers should identify the factors motivating the request and
aggressively treat those factors. Most patients, after these interventions and clarification
of options, proceed with a less controversial approach of declining life-sustaining
interventions, possibly including refusal of nutrition and hydration.

CARE DURING THE LAST HOURS.

Most lay people have limited experiences with the actual dying process and death. They
frequently do not know what to expect of the final hours and beyond. Rehearsal and
second chances do not occur. Therefore the family and other caregivers must be prepared,
especially if the plan is for the patient to die at home.

For patients with heart failure, there may be several last days of life with characteristic
pathophysiological changes such as increased orthopnea and nocturnal dyspnea. Patients
experience extreme weakness and fatigue and become bed bound. This can lead to
bedsores. If the end is near and the sores are causing less distress than dressing changes
and frequent turning, it is reasonable to omit these usual types of care. Dry mucosal
membranes should be cared for with frequent oral swabbing, lip lubricants, and artificial
tears. These activities can provide the family with a form of care to substitute for those
that no longer help, such as feeding. With loss of the gag reflex and dysphagia, patients
may also accumulate airway and pharyngeal secretions, producing noises during
respiration sometimes called “the death rattle.” Scopolamine can reduce this. They also
have changes in respiration with periods of apnea or Cheyne-Stokes breathing. Decreased
intravascular volume and cardiac output cause tachycardia, hypotension, peripheral
coolness, and livedo reticularis (skin mottling). Patients can also have urinary and fecal
incontinence at death as the sphincters lose their tone. Most importantly, changes occur in
consciousness and other neurological functions as brain perfusion falters. Clinical
observation indicates that patients have one of two paths to death ( Fig. 30-1 ). In the
common clinical course patients become somnolent, then comatose, and die with seeming
comfort. In the less common course patients become confused, have hallucinations,
delirium, and then seizures before becoming comatose. Management with the help of a
palliative care consultant is advisable in the latter case; such difficult deaths can have a
profound impact on the family. Reassurance is important that this is a known
physiological reaction to decreased brain perfusion and not a personal expression.

FIGURE 30-1 Common and uncommon clinical courses of the last days of terminally ill patients. (Modified from Mount
Sinai Hospital & Casey House Hospice: Advance planning. In Ferris FD, Flannery JS, McNeal HB, et al [eds]: A
Comprehensive Guide for the Care of Persons with HIV Disease. Module 4: Palliative Care. Toronto, Mount Sinai
Hospital & Casey House Hospice, 1995 [http://www.cpsonline.info/content/resources/hivmodule4.html ].)

Informing families, even by providing an information sheet, about what to expect during
the dying process in general can help. For instance, it can be calming to know that
patients stop eating because they are dying, not dying because they have stopped eating,
or that the “death rattle” is not a sign of suffocation, or that mottling tends to mean that
death is near.

People claim that hearing and touch are the last senses to stop functioning. Families
should be encouraged to communicate with and touch the patient, even if he or she is
unconscious.

When the plan is for the patient to die at home, the family needs to know how to
determine when death has occurred including the cardinal signs of cessation of cardiac
function and respiration, fixed pupils, coolness, changes in skin color and texture, and
incontinence. Remind the family that the eyes may remain open. It helps to have a plan of
whom the family and caregivers will contact when the patient is dying or has died.
Without a plan, they may panic and call 911, unleashing a cascade of unwanted events
from arrival of emergency personnel and resuscitation to hospital admission. Family and
caregivers should be instructed to contact hospice, the covering physician, or the on-call
member of the palliative care team. Contacting the coroner is unnecessary unless the state
requires it for all deaths. Similarly, 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
bereavement and be distraught. They need time to assimilate the event and be comforted.
Health care providers should write a bereavement card or letter to the family. It can be
appropriate, although it is not obligatory, to attend the funerals of patients in order to lend
support to the grieving family and find 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.

SUDDEN DEATH.

Sudden death may “shortchange” patients from the growth that often happens in the last
phase of life and that may make it easier for bereaved family members to go on. Children
of patients who have died suddenly may be excessively influenced by the sudden
disappearance of their parent, without a chance to say goodbye, and by the fear of
suffering the same fate. Preparedness through discussion, planning, and engaging the
benefits of the consciously trodden last paths in life can help, as can extended
bereavement counseling. The services of a social worker or other professional with
expertise in the area should almost always be considered.

PALLIATIVE CARE SERVICES

HOW AND WHERE.

For nearly two decades, hospice has been a leading model of palliative care services.
Patients who use hospice tend to appreciate the care, and their families tend to do better
than others in similar situations.[30] In 1983 Medicare began paying for hospice services
under Part A, the hospital insurance part of reimbursement. To be eligible, a patient
must be certified by two physicians as having a prognosis of 6 months or less 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
people with it would be deceased within 6 months. Patients sign a hospice enrollment
form that states their intent to forego curative services related to their terminal illness
but can still receive medical services for other comorbid conditions. Patients can also
disenroll and reenroll later; that is, the hospice Medicare benefit can be reinvoked later
to secure traditional Medicare benefits. Payments to hospice are per diem rather than
fee-for-service and are intended to cover comprehensive care including physician
services for the medical direction of the interdisciplinary team; regular home care visits
by registered nurses and licensed practical nurses; home health aide and homemaker
services; dietary counseling; chaplain services; social work services; bereavement
counseling; and medical equipment, supplies, and medications. Additional clinical care
including that provided by the primary physician is covered by Medicare Part B while
the hospice Medicare benefit is in place.

Physicians should initiate earlier referrals to hospice to allow more time for patients to
receive palliative care. By 1996 the mean length of enrollment in hospice was 65 days
with the median being less than 24 days. Since then, the length of enrollment has
declined. The hospice length of stay tends to be longer for heart failure patients than for
other patients.[31] In two surveys the mean length of stay of patients with heart failure
was 43.5 and 60 days. [31] [32]

Until relatively recently, hospice had been the main way of securing palliative services
for terminally ill patients. Efforts are now directed at ensuring continuity of palliative
care across settings and through time. Increasingly, these same types of palliative care
services are available as consultative services in hospitals, in day care and other
outpatient settings, and nursing homes. For instance, in the United States, although the
vast majority of hospice care is provided in residential homes, slightly more than 10
percent now occurs in nursing homes. In addition, palliative care consultations for
nonhospice patients can be billed as for other consultations under Medicare Part B, the
physician reimbursement part. Many experts believe palliative care should be offered to
patients regardless of their prognosis. A patient and his or her family should not have to
make an “either curative care or palliative care” choice, in large part because it can be
psychologically stressful to embrace mortality. Although provision of palliative care as
needed from the onset of illness onward is ideal,[33] discontinuities in care can make this
challenging. Documentation of goals, orders for life-sustaining treatment that are
comprehensive and standardized,[34] advance care planning, and the date of the most
recent update can help coordinate care across care sites, among members of the care
team, and along the illness trajectory of changing goals for care.
OUTCOME MEASURES.

Care near the end of life cannot be measured by most of the available validated outcome
measures because palliative care does not consider death a bad outcome. Similarly, the
family and patients receiving end-of-life care may not seek or appreciate the elements of
common quality-of-life measurements and may seek different elements of quality that are
not included in standard measures when their active engagement is with dying well.
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 the Needs and the End-of-
life Screening Tool (NEST), and for outcome measures, such as the Palliative Care
Outcomes Scale (P.O.S.). The field of end-of-life care is ready to enter an era of
evidence-based practice and continuous improvement within established institutions.

Acknowledgments

Portions of this chapter are derived from previous writings by Ezekiel and Linda
Emanuel.

Email to Colleague Print Version

Copyright © 2007 Elsevier Inc. All rights reserved. - www.mdconsult.com