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What is an advance directive?
Advance directives are legal
documents that specify your health care wishes if you are
unable to speak for yourself. Each state has its own approved
form. You can find the form for [your state] at the Partnership
for Caring website. Most forms describe several options
for end-of-life care and can be used to provide any additional
instructions a person may feel is relevant to their end-of-life
situation. You may change your advance directive whenever
you choose.
Advance directives usually include
two major sections: the appointment of a health care representative
and your instructions to your physician. The health care representative
is the person you choose to make your health care decisions
for situations in which you cannot speak for yourself. The
directive to physicians states which life-sustaining measures
you wish to be used, withheld, or withdrawn. These are the
instructions the doctor is directed to follow if your body
is unable to sustain itself without help. (Return
to list)
How do I decide about life-supporting
measures?
The most difficult decisions
a health representative must make involve those that may extend
life when in the natural course of events the person would
die. Decisions may have to be made about machinery or procedures
that assist with breathing, digestion, or circulation. If
a person has a curable condition, these procedures can be
implemented temporarily until the body can manage on its own
again. In the context of a terminal illness, however, they
often prolong life and simply postpone a death that is inevitable.
At this stage, the patient is usually unable to make his or
her preferences known. Decisions to use or not use life support
are difficult for family members to make on behalf of someone
they love. Planning ahead and making your wishes known will
help everyone involved.
As you make plans about specific
forms of life support, gather the facts you need to make an
informed decision. In particular, you must understand the
benefits as well as the risks and alternatives that any treatment
may include. A treatment may be beneficial if it relieves
suffering, prompts the body to return to full functioning,
or enhances quality of life. The same treatment may be considered
burdensome if it causes pain, prolongs the inevitable dying
process, or subtracts from quality of life. Facts about commonly
used life-support measures are described in the next section
of this article. They may sound rather grim and extremely
final, but remember, you are considering these matters not
in the context of the present moment, but in the context of
the final days of life.
In addition to helping you investigate
and understand the facts, making end-of-life decisions asks
you to draw upon your values and ethics and any religious
beliefs you may have. Some people find it difficult to put
these considerations together and translate them into practical
decisions. To help you, we have included in italics the thoughts
of individuals who have made decisions regarding when to stop
life support. We don’t promote or discourage any one
position; we simply provide these statements as a springboard
to perspective and a way to help you clarify your own desires
concerning various life-support measures. For example, read
the following passage and see how you respond:
"If there is a chance
that life support will actually get me back to where I was
when I was healthy and enjoying life, then it would be OK
for a limited time, say ten days. If I am so sick and miserable,
and there is no reasonable chance of recovery to a quality
of life I would accept, then I would like to have vigorous
comfort measures but would not want my life extended beyond
what my body will support on its own."
Do you agree? Disagree? You
can use these quotes to help clarify your own values and preferences.
(Return to list)
Commonly used life-support measures
Cardiopulmonary resuscitation
(CPR): Many of us have seen television dramas in which
the health care team uses electric shock or pounding on the
chest to stimulate the heart to resume beating. This is definitely
a life-saving technique, and in the context of a generally
healthy person who suddenly has a heart attack, it can result
in years or even decades of healthy, active living. In the
context of chronic or terminal illness, however, studies indicate
that only about 15 percent of people advanced in age or illness
leave the hospital alive after CPR. In other words, 85 percent
die in spite of receiving CPR. Those people who do get CPR
and survive often suffer from broken ribs as a result of the
process. Although CPR could mean the difference between life
and death, it is not a gentle procedure and could well be
a traumatic way to die if a person is already near the end
of life.
"Given the statistics about
CPR, I only want it if I have a reasonable chance of recovery
to a healthy state. For instance, if I have a sudden heart
attack but have been healthy enough to lead a fairly functional
life, do CPR. If I am debilitated by cancer, however, and
my heart stops, do not do CPR."
Ventilator (breathing machine):
A ventilator is a machine that helps the body breathe by pushing
air into the lungs through a tube inserted down the throat.
A ventilator can keep a person alive when the lungs have stopped
breathing on their own. Ventilators are commonly used for
a short time after surgeries. They can also be used for long-term
chronic conditions, although they severely restrict oneís
ability to move or talk. They can be uncomfortable because
their breathing rhythm may not be synchronized with a patientís
natural rhythm. Coughing or crying, for instance, is difficult
on a ventilator because the machine forces a regular breathing
pattern and cannot accommodate variation. The tubes themselves
may cause pain or discomfort. Given the alternative, however,
some people find that being on a ventilator is an acceptable
quality of life. Bear in mind that ventilators used near the
end of life rarely contribute to a full recovery. More often,
they prolong the moment of death. Choosing this course may
be appropriate if family members need time to arrive from
far away. Depending on the condition, a person who needs a
ventilator but goes without it usually dies within minutes
or hours of its removal.
"I would be willing to go
on a ventilator for a limited time, say four days, if the
doctors felt I just needed a little help, and there was more
than an eighty percent chance that I would breathe on my own
again. If itís determined that my body will not breathe independently
off the ventilator, I want to be taken off but sedated so
I do not have to feel the panic of going from full oxygen
to not being able to breathe."
Antibiotics: Antibiotics
are drugs that are used to fight infection. They can be given
either in pill form or intravenously. Although they are very
effective at fighting disease, antibiotics can cause numerous
side effects such as rashes and nausea. Certainly if a person
has an infection that is causing pain, antibiotics are highly
recommended for their ability to give comfort. Depending on
a personís general state of health, antibiotics may help him
or her survive an infection. In some cases, without antibiotics
a person who is seriously ill could die within a few hours
to a few days.
"If I have a terminal illness
and get an additional infection that is causing me pain, give
me antibiotics. I donít want them as a means to prolong my
life, but as a means to keep me pain free. On the other hand,
if I have a terminal illness and also contract pneumonia or
some other painless infection, do not give me antibiotics.
Pneumonia is a reasonably painless way to die, and since Iím
going to die anyway, let me go peacefully."
Tube feeding: Often called
"artificial nutrition or hydration," tube feeding can provide
a balanced formula of nutrients in liquid form even if a person
is unable to swallow. A tube either is placed down the nose
and into the stomach or is inserted through a small hole in
the abdomen. This procedure can be a short-term solution to
a sudden illness, or it can be used to help people who are
in a coma or have some other long-term condition that makes
eating difficult. It can provide a quality of life acceptable
to some people, but near the end of life, it often merely
prolongs dying. Without artificial feeding, a seriously ill
person will die in a matter of days or weeks. However, the
process appears to be painless, and people report that the
sensations of hunger go away after the first 24 hours. (For
more information about tube feeding, see our article on Nutrition.)
"I personally abhor the idea
of being kept alive with a bunch of tubes sticking out of
me. It strikes too deeply at my dignity. At some point we
all need to go. If I am unconscious or am not eating for some
other reason, do not prolong my life through artificial feeding.
Let nature take its course." (Return
to list)
For more information
Consumer's
Tool Kit for Health Care Advance Planning (downloadable
off the web)
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important
to Your Medical Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: "Proxy IQ Test" for Family or Physician
Tool 8: What to Do After Signing Your Health Care Advance
Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care
Partnership
for Caring
Good overview of issues
1620 Eye Street, NW (Suite 202)
Washington, DC 20006
(800) 989-9455 or (202) 296-8071
Hard Choices for
Loving People
This insightful book is downloadable from the web, free of
charge, if you are going to use it for personal reasons. Professionals
and service organizations are requested to purchase it. Covers
a wide array of topics:
CPR, tube feeding, comfort care, hospitalization, ventilators,
dialysis, antibiotics and practical help with decision-making.
(Return to list)
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