Personal Health: Name a Proxy Early to Prepare for the Unexpected

November 18, 2003

Two years ago, before entering the hospital for elective
surgery, I appointed my husband as my health care proxy in
case something happened to impair my ability to make
decisions about further treatment.

We had often discussed our unwillingness to be kept alive
by machines if meaningful recovery was not possible, but I
put it in writing on New York State's health care proxy
form, with my signature witnessed by two friends. So did my

Fortunately, it has not yet been necessary for either of us
to invoke this responsibility. But in light of the horrific
battle that has unfolded in Florida over the use of a
feeding tube to sustain the life of Terri Schiavo, a
patient who suffered severe brain damage 13 years ago and
is now at the center of court battles, I am relieved that
this could never happen to me or my husband.

I am now urging my sons and their wives to do the same,
even though they are young and healthy. After all, an
incapacitating accident can happen at any age.

All 50 states have some type of advance directive
legislation, though the specifics can vary greatly. The
appointed person is given durable power of attorney for
health care and may be called a health care agent,
surrogate or proxy.

The Value of Planning

Arlene Schechet, whose mother, Jean, developed an incurable
lung cancer, attests to the value of having an advance care
directive to assure a peaceful, dignified death at home,
according to her mother's wishes.

Jean had completed and signed a living will and had many
conversations with her daughter, who served as her health
care agent, about how far she wished to go with treatment.
This did away with any family arguments and futile
therapies when the end was near. After Jean's death, her
husband realized the value of an advanced care directive
and assigned his son and daughter to be his health care

"If you wait until you're very elderly, cognitive issues
can get in the way," Ms. Schechet said. "That's the worst
time to try to figure this out."

Lilian Sicular, a social worker who has helped elderly
clients with such directives, nonetheless was unable to
persuade her husband, Arthur, to do the same. Five years
ago, after playing tennis, swimming, sailing and visiting
with his grandchildren, her husband suffered a hemorrhagic
stroke that, she says, turned a vibrant man into a
vegetable, his life sustained by a respirator and feeding

When it became apparent that "no miracle was going to
happen," Ms. Sicular said, she wanted her husband to be
removed from life support. But one of their four children,
still holding out hope, objected, and the life support was

A fatal heart attack resolved the issue seven weeks later.
But Ms. Sicular still shudders to think that her husband
could have ended up like Ms. Schiavo.

The Health Care Proxy

Having a health care proxy is not
the same as the document called a living will. As Dr. Diane
E. Meier, director of palliative care at Mount Sinai
Medical Center in New York, explained: "A living will is a
treatment directive that cannot possibly anticipate the
infinite range of conditions that can occur. It doesn't
apply in a lot of nuanced, complex situations."

A health care proxy, on the other hand, is a person
selected by the patient, preferably well before the
situation arises, who, in the eyes of the law and medicine,
acts as the patient when the patient is unable to make
decisions for himself or herself.

Such a situation may arise, for example, when someone is in
a persistent coma after an accident or stroke or in the
late stages of Alzheimer's disease or congestive heart

When properly assigned after conversations with the patient
about what would be wanted in the way of treatment under
various circumstances, a health care proxy can speak for
the patient.

"In the eyes of the court, the proxy is the patient," Dr.
Meier said. Had Ms. Schiavo assigned her husband to be her
health care proxy and told him she would not want to be
kept alive indefinitely on a machine, he most likely would
not have been fighting this battle to have her disconnected
from life support.

In New York, for example, your proxy form should state that
"my health care agent knows my wishes about artificial
nutrition and hydration" to assure that the person you
depend on can legally make the desired treatment decision.

Your health care proxy can be anyone you choose,
preferably someone who lives nearby - a family member,
friend or anyone you trust to act in your behalf if you are
physically or mentally unable to act for yourself. It is
best, however, not to choose your doctor, since some states
do not allow this.

Once you select a proxy, make sure your family and friends
know who it is. Also, it is a good idea to choose a second
person as backup proxy in case your first choice is
unavailable when a crisis arises. Keep in mind, too, that
if your spouse is your proxy and you divorce or legally
separate, that person can no longer serve as your proxy.

Fill out the form provided by your state's health
department, usually available from your doctor or local
hospital. That can also be done on the Web
( Be sure to make copies of the
proxy form for yourself (keep one handy at home and another
in your purse or wallet), your proxy, your doctor and
anyone else close to you.

As explained in an excellent pamphlet-style workbook,
"Fidelity, Wisdom & Love: Patients and Proxies in
Partnership" by Dr. Joseph J. Fins, chief of medical ethics
at New York Weill Cornell Center of New York Presbyterian
Hospital, and his colleague Barbara S. Maltby, "Your proxy
can agree to treatment, choose between different
treatments, refuse or withdraw treatment, ask for better
pain control and request palliative care or referral to

The workbook continues, "Having a proxy is especially
important in New York and other states where the law
restricts certain types of end-of-life decisions that can
be made by a family member, such as stopping ventilator
support or refusing/stopping artificial nutrition or

This workbook and its companion video can help guide you
and your proxy through the process. (The video narrators
are Kathleen Chalfant, widely acclaimed for her performance
as a terminally ill patient in the Pulitzer Prize-winning
drama "Wit," and her husband, Henry.) "Patients and proxies
need to talk together before something happens," the
workbook states, elaborating on the unfairness of asking
people to be proxies without providing them with any

The video and workbook can be obtained by telephone, (860)
828-2976; fax, (860) 829-6226; on the Web
( or by mail (Fidelity,
Wisdom and Love, P.O. Box 437, Kensington, Conn.
06037-0437). The workbook costs $13 and the video is $19,
including shipping and handling.

In discussing your wishes, it is important to be specific
about your intent but not restrictive. Be general enough to
allow your proxy to make appropriate decisions depending on
the circumstances. If you say "I never want to be kept
alive on a machine," do you really mean "never," even if
eventual weaning from the machine and recovery is likely,
or just when a machine is used to prolong dying?

In equivocal situations, the proxy may choose to consult
family members or friends of the patient or seek other
medical opinions. But the final, binding decision about how
to proceed is made by the proxy.

A health care proxy can be amended at any time. You can
change the person you select or the circumstances you
outlined. Just get a new form and do it again. Don't put
this off; tomorrow might be too late.