Personal Health: Name a Proxy Early
to Prepare for the Unexpected
November 18, 2003
By JANE E. BRODY
Two years ago, before entering the
hospital for elective
surgery, I appointed my husband as my health care
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,
put it in writing on New York State's health care
form, with my signature witnessed by two friends. So
Fortunately, it has not yet been
necessary for either of us
to invoke this responsibility. But in light of the
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
is now at the center of court battles, I am relieved
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
legislation, though the specifics can vary greatly.
appointed person is given durable power of attorney
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
directive to assure a peaceful, dignified death at
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
care agent, about how far she wished to go with
This did away with any family arguments and futile
therapies when the end was near. After Jean's death,
husband realized the value of an advanced care
and assigned his son and daughter to be his health
"If you wait until you're very
elderly, cognitive issues
can get in the way," Ms. Schechet said. "That's the
time to try to figure this out."
Lilian Sicular, a social worker who
has helped elderly
clients with such directives, nonetheless was unable
persuade her husband, Arthur, to do the same. Five
ago, after playing tennis, swimming, sailing and
with his grandchildren, her husband suffered a
stroke that, she says, turned a vibrant man into a
vegetable, his life sustained by a respirator and
When it became apparent that "no
miracle was going to
happen," Ms. Sicular said, she wanted her husband to
removed from life support. But one of their four
still holding out hope, objected, and the life
A fatal heart attack resolved the
issue seven weeks later.
But Ms. Sicular still shudders to think that her
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.
E. Meier, director of palliative care at Mount Sinai
Medical Center in New York, explained: "A living will
treatment directive that cannot possibly anticipate
infinite range of conditions that can occur. It
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
acts as the patient when the patient is unable to
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
late stages of Alzheimer's disease or congestive
When properly assigned after
conversations with the patient
about what would be wanted in the way of treatment
various circumstances, a health care proxy can speak
"In the eyes of the court, the proxy
is the patient," Dr.
Meier said. Had Ms. Schiavo assigned her husband to
health care proxy and told him she would not want to
kept alive indefinitely on a machine, he most likely
not have been fighting this battle to have her
from life support.
In New York, for example, your proxy
form should state that
"my health care agent knows my wishes about
nutrition and hydration" to assure that the person
depend on can legally make the desired treatment
Your health care proxy can be anyone
preferably someone who lives nearby - a family
friend or anyone you trust to act in your behalf if
physically or mentally unable to act for yourself. It
best, however, not to choose your doctor, since some
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
person as backup proxy in case your first choice is
unavailable when a crisis arises. Keep in mind, too,
if your spouse is your proxy and you divorce or
separate, that person can no longer serve as your
Fill out the form provided by your
department, usually available from your doctor or
hospital. That can also be done on the Web
(partnershipforcaring.org). Be sure to make copies of
proxy form for yourself (keep one handy at home and
in your purse or wallet), your proxy, your doctor and
anyone else close to you.
As explained in an excellent
"Fidelity, Wisdom & Love: Patients and Proxies in
Partnership" by Dr. Joseph J. Fins, chief of medical
at New York Weill Cornell Center of New York
Hospital, and his colleague Barbara S. Maltby, "Your
can agree to treatment, choose between different
treatments, refuse or withdraw treatment, ask for
pain control and request palliative care or referral
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
be made by a family member, such as stopping
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
are Kathleen Chalfant, widely acclaimed for her
as a terminally ill patient in the Pulitzer
drama "Wit," and her husband, Henry.) "Patients and
need to talk together before something happens," the
workbook states, elaborating on the unfairness of
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
(www.fidelitywisdomandlove.org) or by mail (Fidelity,
Wisdom and Love, P.O. Box 437, Kensington, Conn.
06037-0437). The workbook costs $13 and the video is
including shipping and handling.
In discussing your wishes, it is
important to be specific
about your intent but not restrictive. Be general
allow your proxy to make appropriate decisions
the circumstances. If you say "I never want to be
alive on a machine," do you really mean "never," even
eventual weaning from the machine and recovery is
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
medical opinions. But the final, binding decision
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
this off; tomorrow might be too late.