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Sick people and their
families may feel swept along by the fatal illness and medical treatments,
as if they have no control over the events. Sometimes, this sense
of having no control is preferable to taking responsibility for
thinking about what else might be done. People vary in the amount
of information and involvement in decision making that they want
and should usually be able to be as engaged as they want. Loved
ones need to be satisfied that everything was done to enable the
dying person to live as well and with as much dignity as possible
while dying.
Honest,
open communication between patient and doctor about the person's
preferences for care at the end of life helps to ensure the best
possible quality of life during a fatal illness. The doctor provides
a candid assessment of the likelihood of recovery and disability
during and after various treatment options, and the person tells
the doctor and his family what he wants and does not want to experience.
The person's health care decisions may include choosing a doctor
and a system of care, stating his preferences for treatment and
the limits he wants placed on that treatment, expressing wishes
concerning where he wants to die and what he wants done when death
is expected, and stating whether he wants to donate his organs after
death.
Choosing a Doctor: When
choosing a doctor, a person should ask about care at the end of
life: Does the doctor have substantial experience caring for dying
people? Does the doctor care for the person until death in all settings—hospital,
nursing home, or home? Does the doctor treat symptoms fully (palliative
care) at the end of life? Is the doctor familiar with the home health,
physical therapy, and occupational therapy services in the community—who
qualifies for them, how they are paid for, and how to help people
and families get more intensive services when needed? In some cases,
what a doctor may lack in experience is offset by a trusting, long-standing
relationship that exists between the doctor and a patient and family
and by the doctor's willingness to consult other experts.
Choosing a System of Care: A
system of care includes a financing system, such as insurance policies
and managed care, and a care delivery system, such as doctors, a
hospital, a nursing home, and home health care agencies. Asking questions
of doctors, nurses, other patients and families, social workers,
and case managers can help a person find a good system of care:
What treatments are available in the system? What information is
available about the merits of possible treatments? How can a person
talk to other patients and families who have been treated there?
What experimental treatments are available? How have other patients
done with these treatments? How are these treatments paid for?
Choosing Treatment Options: Often,
the available choices are between dying sooner but remaining comfortable
and attempting to live slightly longer by receiving aggressive therapy, which
may increase discomfort and dependence. Nevertheless, dying people
and their families may feel that they must try such therapies if
any chance of prolonged survival exists, even when hope for a cure
is unrealistic. Questions of philosophy, values, and religious beliefs
come into play when such decisions are made by and for a dying person. People
should discuss their wishes for end-of-life care well in advance
of a crisis that makes such information critical.
A person nearing death
is sometimes persuaded to try one last treatment, which often sacrifices
the person's last few days to side effects without gaining quality
time. The person and family should be skeptical of such treatments.
In many cases, as a person nears death, the focus of care should
shift entirely to providing comfort measures to ensure that the dying
person does not suffer.
Some decisions, such as
whether to allow resuscitation—the
only treatment provided automatically in the hospital (unless specifically
predecided otherwise)—are less significant than they seem. An order
against attempting resuscitation makes sense for most people expected
to die, and such a decision need not weigh heavily on the family.
The person who is near death before the moment when the heart stops
beating and breathing ceases (cardiopulmonary arrest) is not likely
to benefit from a resuscitation attempt. Resuscitation efforts can
be prohibited in advance directives (see Legal and Ethical Issues: Advance Directives)
or through discussion between a patient and doctor, with the doctor
writing the needed order. Food and water given through tubes (artificial
nutrition and hydration) are not often useful to a dying person
and can also be prohibited in advance.
Other decisions may include
the setting in which the dying person will spend his final days.
For instance, the family may want to have the person at home—a familiar,
supportive setting—and not in a hospital. Family members should
insist that doctors and other caregivers help make specific plans
for these preferences and honor them. In some cases, hospitalization
may be explicitly declined.
Choosing to Donate Organs: The
dying person may wish to donate his organs after death. This decision
is best made with the family in accord, if possible. In general,
people dying of a chronic illness can donate only corneas, skin, and
bone. People who die more suddenly can donate more organs, such
as kidneys, liver, heart, and lungs. To become an organ donor, the
person usually needs only to sign a standard organ donor card and
to let the doctor know of his wishes. Common concerns that may prevent
some people from becoming organ donors can be allayed: Organ donation usually
does not affect the appearance of the body at the funeral and does
not cost the person or family any money. Also, organs are never
taken until after death.
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