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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
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
husband.
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
proxies.
"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
tube.
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
continued.
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
failure.
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
(partnershipforcaring.org). 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
hospice."
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
hydration."
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
preparation.
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
$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.
http://www.nytimes.com/2003/11/18/health/18BROD.html?ex=1070168452&ei=1&en=617a39ba407bdd7e
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