To Die Or Not to Die? Cross-Disciplinary, Cultural, and Legal Perspectives
on the Right to Choose Death,
By Joyce Berger
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1 The Right to Die: Perspectives of the Patient, the Family, and the
Health Care Provider
David V. Schapira
Possibly the most neglected aspect of patient care is the medical and psychological
management of a patient's death. The existence of a deficiency may seem surprising.
One would think that either patients would have reached a conclusion regarding
their deaths and resuscitative measures prior to serious illness, or a discussion
by the physician with the patient and family would result in a decision on how
to handle resuscitation.
When addressing how aggressively to manage and treat serious illness, implications
that lie outside the boundaries of human rights and a person's quality of life
should be considered. Approximately two million Americans die each year and,
because of an increase in the population and particularly an increase in the
number of elderly citizens, the annual number of deaths is rising. Eighty percent
of the health care dollar is spent on people who survive less than one year.
The care of nonsurvivors is approximately double that of survivors ( Scotto
and Chiazze, 1974). Only 10 percent of patients who require admission to an
intensive care unit because of complications of their disease or treatment leave
the hospital. In the past fifteen years the cost of health care has risen from
8 percent to over 13 percent of the gross national product--more than a 50 percent
increase. These statistics should encourage health care providers to address
the issue of resuscitation and aggressive management of life-threatening or
terminal illnesses.
By addressing such issues at an appropriate time, the use of expensive medical
care in the pursuit of prolonging a patient's life would be averted. It is particularly
important that the decision of whether or not to implement heroic measures be
resolved at a time when the patient is able to make a decision.
Despite our best intentions to grapple with and resolve the issues of a patient's
right to die, there are obstacles that can render arriving at a solution difficult,
if not impossible. I would like to describe these obstacles from the perspective
of the patient, family, and health care provider.
THE PATIENT'S PERSPECTIVE
Patients may not wish to decide how aggressively their illness should be managed;
they may wish to relinquish the decision to the physician. The severity of the
illness can affect a patient's desire to participate in active decision making.
Increasing severity of illness increases a patient's dependence on the physician.
As the severity of illness increases, the fear of dying may alter a patient's
decision whether or not to be resuscitated. The reality may be too overwhelming.
Additionally, medications such as potent analgesics may alter a patient's mental
state and reduce his or her capacity for judgment.
Although the physician may attempt to inform patients about the severity of
their illnesses, patients may employ an appreciable amount of denial. In a study
of 315 cancer patients ( Eidinger and Schapira, 1984) being treated with chemotherapy
or radiation therapy for advanced cancer, only 50 percent of the patients correctly
responded that their cancer had spread and was in an advanced stage. All the
patients had been informed of their condition prior to the study. This lack
of knowledge was not due to an unwillingness to seek information, as over 90
percent of the participants wished to learn all information regarding their
disease, irrespective of whether the information was pleasant or unpleasant.
We asked the participants what they felt their prognosis was. The majority of
patients felt they would live at least three years or longer, and an appreciable
percentage felt they would "beat the cancer." In fact, over 75 percent
of the patients expired within a year of participating in the study. If patients
have a very optimistic view of their prognosis, discussions regarding resuscitation
may seem incongruous.
If patients deny the severity of their condition, they may not make a rational
and realistic decision about how the process of dying should be medically managed.
Patients may also feel that making a decision not to be resuscitated may result
in abandonment by the health care team and enhance a feeling of hopelessness.
It is of interest that only 14 percent of patients who had a "do not resuscitate"
order on their chart left the hospital alive at the end of the admission.
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Factors other than denial may affect the patient's decision regarding resuscitation.
A patient may make a decision not to be resuscitated based on erroneous information,
emotion, or mood. A patient may become depressed with the side affects associated
with the disease and feel that "life is not worth living." If, however,
the symptoms can be alleviated, the patient's quality of life may be markedly
improved and the desire to be aggressive with medical management may change.
Patients who feel they have not received a desired amount of attention and
emotional support from spouse, family members, or friends may express a desire
not to be resuscitated in an attempt to engender sympathy and emotional support
from these individuals. Patients may even go so far as to attempt suicide to
achieve the desired outcome.
Patients may have preconceived unpleasant illusions about the aspects of resuscitation.
They may fear the trauma of intensive care units, tubes and intravenous lines
inserted into the body, respirators, or the cardiac arrest procedure. Impressions
of these traumatic measures may lead patients to decide to make a more passive
decision.
These feelings of depression or fear that lead to a decision not to be resuscitated
may be implemented by the health care team unless the reasons underlying the
decision are examined. The situation can arise in which the patient's quality
of life and desire for life is not dealt with appropriately. This is exemplified
when an elderly patient with a terminal disease is admitted to an intensive
care unit. The medical staff may view the admission and intensity of care to
be inappropriate. They may be unaware that the patient wishes to remain alive
for a few more weeks or months to see the birth of a grandchild or wedding of
a child.
A somewhat similar philosophical decision was presented to a Massachusetts
court ( Brophy vs. New England Mt. Sinai Hospital). The court authorized the
withdrawal of nutrition from an adult in a chronic vegetative state. While healthy,
he had stated that he would not want his life sustained if he were permanently
unconscious. The court rejected the view that a decision to withdraw life-supporting
measures could be made on the basis of a quality of life that was determined
by individuals other than the patient. The decision should not be perceived
as a step toward euthanasia for those patients who lack the capacity to satisfy
someone else's vision of a satisfactory quality of life or are deemed to be
a social burden.
THE FAMILY'S PERSPECTIVE
For reasons of grief or guilt, the family may press for disproportionately aggressive
management. One can observe this phenomenon in patients undergoing treatment
for advanced cancer. When all conventional treatments, usually chemotherapeutic
drugs, have been exhausted and the patient and family have been told that nothing
more can be done to prolong survival significantly, the family may persuade
the patient to turn to unconventional therapies as a last resort. These therapies
may not have demonstrated objective tumor shrinkage, but guilt or grief may
drive the patient to try these treatments in desperation. Unfortunately, this
decision can have disastrous economic results as the travel to the clinics and
treatments are not covered by insurance. Thus the surviving family may expend
an appreciable amount of its savings.
Families are placed in a similarly uncomfortable position when the patients
are gravely ill and unable to make their wishes known due to decreased consciousness.
Families may express a desire for inappropriately aggressive management because
of guilt. A physician may attempt to educate a family with an objective presentation
of the medical facts surrounding the case. Many families are uncomfortable with
this amount of education and participation. They may not understand and assimilate
the information at such an emotional time and may lack the objectivity to make
such an important decision concerning a loved one. In order to avoid the responsibility
and guilt associated with adopting a passive approach, they choose a safe course
of action and request that "everything be done" for the patient. This
situation can be rectified by the physician's explaining why a passive approach
is in the patient's best interest; this can alleviate the family's guilt when
they agree with the physician's decision.
Cultural or ethnic factors can make a decision regarding resuscitation almost
impossible. Hispanic families prefer to shield the patient from unnecessary
anxiety and depression and may ask the physician not to tell the patient anxiety-provoking
information such as a diagnosis of cancer. Throughout the patient's course,
the family protects the patient from any depressing information; therefore a
discussion about dying and resuscitative measures between the physician and
the patient is obstructed.
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Although the situation of not informing the patient may seem inconceivable,
one must be careful not to impose one's belief system as regards health, disease,
treatment, and death on patients from a different ethnic or cultural background.
If one attempts to impose one's wishes and values on patients, the response
is often denial, resistance, and decreased compliance. In fact, although we
feel that we are open in telling patients their prognoses, physicians often
collude with patients in not correcting optimistic misconceptions of prognoses.
Because of their cultural or religious beliefs, and indeed their personality,
some patients may wish to take a passive role in the decision making regarding
the circumstances of their deaths. To disregard the wishes and beliefs of the
family and to confront the patient with the decision will probably not be fruitful,
and indeed may lack understanding and not be in the patient's best interest.
Such a confrontation may impair the patient's quality of life and future communication
with the physician.
Although such an approach may still seem untenable, I would like to illustrate
how the traditional approach of Western medicine can be unsuccessful. A Haitian
man may present to an emergency room with palpitations. This is usually a benign
condition called paraxysmal atrial tachycardia, and can be aborted by stimulating
the vagus nerve, whether by manually massaging the carotid body in the neck
or by having the patient swallow ice or attempt to blow air out of the mouth
with the mouth closed. The condition can be precipitated by drinking excessive
amounts of coffee, tea, or alcohol. Having corrected the abnormal rhythm, the
physician could warn the patient not to consume the stimulants that precipitate
the condition, teach the patient the cardiac-slowing maneuvers, and possibly
prescribe a B-blocker, a medication that slows the heart. Such an approach would
most likely be ineffective and the patient would not take the medication. The
reason is that the Haitians call this condition battement de coeur, or beating
of the heart, and believe it to be due to weak blood. They would expect to receive
a liquid tonic to build up the blood. If a Haitian did not receive a tonic,
it is unlikely that the patient would return to a practitioner of traditional
Western medicine. Lest this example seem too primitive and far-fetched, one
only has to remember that almost half of the population of the United States
takes at least one vitamin pill per day for no justifiable reason--certainly
not to avoid vitamin deficiency. A study I made (with others) revealed that
over 90 percent of vitamin takers are unaware of the recommended daily allowance
of any of the vitamins. Indeed, attempting to persuade the members of this sophisticated
population to stop taking a vitamin has, in my experience, been extremely difficult.
Unfortunately, medical anthropology and thanatology are not part of the curriculum
of most medical schools. Without a knowledge of these areas, physicians may
lack awareness and sensitivity toward alternate belief systems relating to health,
disease, and death. The physician can only be left to impose his or her belief
system and values on the patient, the result being an unsatisfactory outcome.
THE PHYSICIAN'S PERSPECTIVE
Dealing with ill patients exacts a toll on physicians, particularly if they
deal with chronic diseases in which dramatic improvement is not often seen.
A physician may have a tendency to equate a patient's death with professional
failure, or unrealistic expectations. Having to impart unfavorable information
to patients on a continual basis tends to lead to a feeling of being "burned
out." The physician finds that it is easier not to become engaged in a
discussion with the patient over topics that will be emotionally draining and
time consuming. Thus physicians may avoid discussing topics such as prognosis
or resuscitation unless approached directly by the patient or the family.
Apart from their desire to avoid discussing emotionally laden issues, physicians
vary in their communication skills. Some may lack directness or honesty or may
use technical language that is beyond the understanding of the patient and family.
In this situation a facilitator, such as a psychiatrist attached to the health
care team, nurse, social worker, or chaplain, can act as an intermediary and
resolve any difficulties in understanding the issues. I find this approach very
effective as patients and families may not want to ask physicians questions
for fear of interrupting their busy schedules or for fear that certain questions
are too simple or inappropriate. Members of a psychological team may be able
to discuss and allay a patient's or family's fears because of their training
and the fact that patients may find them less intimidating than the physician.
In a study by Bedell et al. ( 1983), 95 percent of physicians felt it was appropriate
to discuss the patient's wishes regarding resuscitation, yet in only 19 percent
of cases did the physician discuss the subject of resuscitation with the patient,
and in only 33 percent of cases did the physician discuss resuscitation with
the family.
Fear of legal liability may interfere with a physician's ability to make the
best choice for the patient. A physician may have a primary objective of minimizing
liability, real or imagined. This strategy may be at the expense of humane treatment
and may be at odds with the family's wishes. There is only one case (as of 1984)
in which two physicians were charged with murder for withholding life support
from a comatose patient. The charges were dropped by the California Court of
Appeals. The fear of litigation following the withholding of life support is
grossly exaggerated by physicians. If the conversation with, and wishes of,
the patient and family are documented in the hospital records, it is extremely
unlikely that a physician will be sued. In spite of legal uncertainties, appropriate
and compassionate care should have priority over undue fear of liability.
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WHAT CONSTITUTES RESUSCITATION?
It appears that most members of the public understand resuscitation to involve
cardiopulmonary arrest maneuvers. They may be aware that these maneuvers involve
the mechanical stimulation of the heart by manual compression of the chest,
ventilation by a small ventilatory bag, and the insertion of intravenous fluids
and cardiac stimulus. Although this is certainly a valid impression of the scenario
that surrounds the final event of a cardiac arrest, there are other interventions
in medical management that, if withheld, would lead to the death of the patient.
These more subtle areas of medical management that the public is often not aware
of lead to problems of interpretation when a patient has written a living will.
These subtler areas of "resuscitation" are frequently not included
in the conditions or scenarios of a living will; they include the withholding
of antibiotics from a patient with a terminal disease who has a life-threatening
infection; the withholding of steroids for patients with cerebral metastases;
withholding of intravenous fluids or hyperalimentation; and not performing laboratory
tests to correct electrolyte disorders. All of these instances obviously assume
that patients are unable to transmit their wishes because of decreased consciousness.
Although these situations do not directly involve the saving of life, they can,
when implemented, appreciably prolong a patient's life. If patients are not
conscious and cannot make their wishes known, implementing these interventions
would seem to be uneconomical and contrary to the patients' interests.
The living will is a document, distributed nationally, that outlines patients'
wishes regarding medical management should they subsequently become incompetent
to decide ( Society for the Right to Die, Living Will, New York, 1985). This
document is not binding in some states, but it does clearly outline a patient's
desires and expectations. At the present, thirty-eight states have enacted living
will or "natural death" legislation ( Jonsen, 1978).
CONCLUSION
There are no simple solutions when attempting to elicit a patient's request
for withholding resuscitation and granting that request. The most important
point to be made is that the patient has the ultimate right to control all aspects
of medical care and resuscitation, and the family and health care team must
abide by the patient's wishes. If patients are unable to make a decision, their
spouse or close family may decide what course should be taken. It is hoped that
their decisions would be based on prior discussion with patients regarding their
opinions and wishes concerning resuscitation.
The medical team in a hospital is often faced with a situation in which a patient
has a life-threatening episode such as cardiac arrhythmia or cardiac arrest,
and there is no statement in the patient's chart regarding resuscitation. Under
these circumstances the medical team has to make every effort to resuscitate
the patient, even though resuscitation seems inappropriate and would have been
against the patient's wishes. This not uncommon situation can be frequently
averted if the attending physician discusses resuscitation measures with the
patient either before admission or on the first day of admission to the hospital.
This discussion should not be held with every patient, but only with those patients
deemed to have limited survival or a serious life-threatening condition.
I doubt that this practice will become widespread, as it involves many emotionally
draining and time-consuming discussions. I do not state this opinion with any
degree of cynicism because I realize the very appreciable increased amount of
time and emotion that physicians would have to give to engage in such discussions
on almost a daily basis.
Another approach would be to educate patients regarding their rights to make
a living will, and to make the drawing up of such a will a relatively simple
and inexpensive exercise. Living wills drawn up by patients attempt to extend
patients' authority to decline certain therapeutic measures that may be involved
in their death. This attempt would be made at a time when the patient was capable
of entering into decision making. A standardized document could be obtained
from a doctor's office or hospital that would describe the various levels of
resuscitative measures with explanations. Patients could then make informed
decisions as to the level of resuscitative procedures that they would want to
have invoked should they become critically ill.
A third approach would be to have certain criteria for the entry of patients
with terminal illness into intensive care units. There is considerable evidence
( Cullen et al., 1974) that an appreciable portion of the cost of caring for
terminally ill patients is associated with treatment in intensive care units.
There are standards that cover the admission of patients to intensive care units.
The bill for such an admission may not be totally covered by the insurance company
and the surviving family may be left having to pay a considerable amount of
money. A more stringent application of admission guidelines would reduce expenditures
for the health care system and family, which is important when the admission
of a patient to such a unit is inappropriate and unsuccessful.
A very reasonable alternative in caring for terminal patients who do not wish
an aggressive approach to their management is the hospice movement. Hospices
provide an alternative form of care for the dying. They allow terminally ill
patients a choice of dying at home or in facilities other than the hospital.
Hospices are often a more appropriate form of care, as they are designed for
palliation and caring rather than curing. Patient autonomy and dignity are enhanced.
In 1982 Congress ensured that hospice care would be covered by Medicare. It
is not clear that hospice care will reduce the cost of health care, but the
system allows terminal illness to be more bearable for the patient and family
if a decision has been made not to follow an aggressive course.
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