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Neil J. Nusbaum JD, MD - Author
Mary Kane Goldstein, MD, MSc., VA Palo Alto Health Care System -
Content Expert
It can be hard for doctors and loved ones to know what kind of treatment
you would want when you are too sick to tell them. A special document
called an "advance directive" communicates wishes and
preferences for care when people are too sick to speak or make decisions
for themselves. It is important to understand that an advance directive
is not the same thing as a will.
The best way to make sure your wishes
are respected is to discuss them with your health care provider
and your loved ones while you’re healthy and then fill
out an advance directive form. Once completed, copies should
be given to your health care provider and to those closest to
you, so they can help carry out your wishes, if necessary.
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Q. How can I get an advance directive
form?
A. Your
doctor may be able to give an advance directive form. Forms
vary from state to state, so be sure to use the form approved
by your state. You or your doctor can get a copy of your state’s
form from Partnership for Caring’s (formerly Choice in
Dying) web site (www.partnershipforcaring.org)
or by calling them at 1-800-989-9455. The Eldercare Locator
[(800) 677-1116] can also direct you to organizations and
sites that can provide a copy of the advance directive form
used by your state.
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Q. What can an advance
directive form help me do?
A. Advance
directive forms allow you to:
- Express your wishes regarding particular
kinds of medical treatments that you may be offered when seriously
ill; or
- Name a person whom you want to make health
care decisions for you when you are unable to do so. This person
is called a health care surrogate or a durable power of attorney
for health care. If necessary, he or she makes health care decisions
that you would make for yourself if you were able to do so;
or
- Do a combination of the above.
Even if you do not fill out or do not wish to
complete an advance directive form, you should speak with your
health care provider and your family about your wishes.
Q. What should I remember
as I choose a health care surrogate?
A. It is important
to choose someone who understands your values and wishes for health
care treatment. After all, he or she is being asked to make decisions
for you if you cannot make them for yourself. You will want to
choose someone who will make the choices that you would make for
yourself, even if those are not the choices that he or she would
make in the same situation.
Q. Can I wait until
I am admitted to a hospital before completing an advance directive?
A. Yes. Advance
directive forms are available at hospitals across the country.
However, waiting until you are hospitalized is not a good idea.
A sudden illness, such as a stroke, may make you too ill to complete
an advance directive—just when it is most important.
Q. What else should
I keep in mind as I complete an advance directive?
A. You should
not complete an advance directive until you know what you want
it to say. Once you have made your decisions about future care,
fill out the form as soon as you can, so that it will be available
whenever it is needed.
Q. Do I need a lawyer
to complete an advance directive?
A. You may
want to see a lawyer if:
- You live in more than one state during the
course of the year; or
- You don't fully understand the standard advance
directive form, or you find that it does not allow you to express
your actual health care preferences; or
- You have concerns that the advance directive
form does not address.
A lawyer can help you with those parts of end-of-life
planning not covered by an advance directive.
Q. What if I need to
change my advance directive?
A. Your advance
directive may be consulted long after it was first written. You
should review the document regularly to make sure it communicates
your current health care wishes. For example, if you have named
a health care surrogate, be sure that individual is still willing
and able to perform the task. Perhaps another individual (such
as one of your grown children) is now a better choice to take
on this responsibility. Only you can know for certain whether
your advance directive still accurately reflects your wishes.
If you change your mind about your health care
preferences, be sure to notify your doctors, caregivers, and anyone
else named in prior advanced directives in writing. It is important
that these individuals understand your current wishes and their
role in executing them. Those who are responsible for carrying
out your health care wishes need to have the most up-to-date copy
of your advance directive.
Q. Should I provide
information about my specific wishes in different situations on
the advance directive form?
A. Advance
directives in their standard form are vague, stating only that
you would not want "heroic" or "artificial"
treatment if you are clearly "dying." It is best to
provide as much specific information as possible. Thinking about
and discussing different situations and what you would like to
happen in them is helpful.
For example, if you do not want your heart restarted
(artificial resuscitation) or you do not want to go on a breathing
machine (ventilator), include this on the form. Many people would
be willing to try aggressive and uncomfortable treatment for a
while, but then would want it to be stopped if their condition
does not improve. Making these wishes clear often requires working
with your physician to make statements about how you want to be
treated, including when health care providers should stop. As
difficult as this can be, it is exactly the kind of advice that
will help your family and caregivers most.
Q. What can I do if
the advance directive still doesn't express all I want to say?
A. Many people
find it useful to add their own thoughts to a formal advance directive.
You can write a letter to the person who serves as your health
care surrogate and attach it to the advance directive. In this
letter, you can reflect upon serious illness with people you have
known or known about and what matters most in your life. This
will help you guide your health care surrogate in making your
wishes known to doctors.
Q. Where do I go for
more information?
A.
The Foundation for Health in Aging
Eldercare at Home
Chapter 27, "Advance Directives"
www.healthinaging.org/eldercare/chap27.html
(212) 755-6810
American Medical Association
http://www.ama-assn.org/public/booklets/livgwill.htm
Legal Services for the Elderly
www.aoa.dhhs.gov/aoa/dir/118.html
(212) 391-0120 Partnership for Caring
www.partnershipforcaring.org
(800) 989-9455
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