Experts: Living wills often flawed

by Kathleen Kerr, Newsday (New York), 6/21/2004

The living will, long touted as a way to prevent technology from
complicating death and artificially prolonging life, has outlived its
usefulness, a growing number of medical and legal experts say.

For more than two decades, wary Americans have been using the
documents to state their health care preferences in anticipation of a
time when they can't do so.

The usual reason for a living will has been to avoid the arsenal of
ventilators and feeding tubes that can keep seriously ill patients
alive, sometimes in a persistent vegetative state.

But experts say the concept is obsolete.

"It's [the living will] a virtual failure," said Thomas Murray,
president of The Hastings Center, a bioethics institute in Garrison,
N.Y. "The living will is particularly ill-designed to do what you
want it to do. Any tiny crack can be enough to destroy the entire
foundation of that document."

Since their inception, living wills have exhibited flaws: People with
living wills don't always tell their relatives about them, so their
wishes remain unknown. Hospitals find the wills difficult to
interpret: a stated preference not to receive artificial nutrition
when brain-dead may not apply if a person is comatose. And it's
difficult to address all possible end-of-life situations in a living
will - especially as life-sustaining technology continues to evolve.

Recently, two University of Michigan researchers, writing in the
bimonthly Hastings Center Report, a journal that examines issues in
medical ethics, concluded that living wills are useless.

"It's very hard for people to predict their preferences for an
unknown health condition," said Angela Fagerlin, a research scientist
and co-author of the article. In addition, "decision makers have a
difficult time interpreting [living wills]," Fagerlin said.

And Carl Schneider, a law professor and Fagerlin's co-author,
says: "In lots of ways, the unsolvable problem is that writing down
your intentions clearly is a lot harder than people think it is."

The case of Ellen Haymes, a Brooklyn woman who shot herself in a 1993
suicide attempt, illustrates the problems. The decision in that case
reinforced New York State's strict interpretation of right-to-die
case law.

Haymes was rushed to The Brookdale University Hospital and Medical
Center, underwent emergency surgery and was placed on a ventilator.
Her sister produced Haymes' living will and asked the hospital to
disconnect the ventilator. Brookdale refused.

Haymes lived and made a partial recovery but was left blind. Later,
Haymes and her sister sued the hospital. Steven Mandell, a Manhattan
attorney who represented the hospital, said on Thursday that
treatment was already under way when the sister arrived and that "the
so-called living will is not an instrument which is enforceable in
the state of New York. There was no obligation to follow the so-
called will."

In 2001, the Appellate Division of State Supreme Court ruled that
Brookdale had acted appropriately and that Haymes' living will did
not clearly state her wishes, that she did not have the required two
witnesses, and that she had no valid health-care proxy.

Designating a proxy

In the current Florida case of Terry Schiavo - whose feeding tube is
keeping her alive - there is no living will or any other form of
advance directive that could provide guidance as her parents and
husband battle over whether to remove the feeding tube. Attorneys say
that advance directives - like health care proxy statements or
durable powers of attorney - now are either replacing or
supplementing living wills as legal instruments that allow people to
designate someone to make medical decisions for them.

New York State's health care proxy statute was enacted in 1991.
Robert Kurre, a Great Neck attorney who specializes in elder law,
said he urges clients to name a such a proxy - a person who will act
in their stead should they become unable to speak for themselves - in
addition to having a living will. He also tells clients to add a
statement concerning their wishes on artificial feeding to any proxy
statement.

"If you check yourself into a hospital or nursing home, it's [the
health care proxy] the document they want to see," said Kurre,
explaining it's more effective to have a health care proxy who can
make decisions for you in the event that unanticipated health care
questions arise.

By themselves, Kurre said, living wills are a "recipe for disaster."
Ira Calderon, a wholesale insurance broker who lives in Great Neck,
has followed Kurre's advice. Calderon, 43, said a family member urged
him to document his medical preferences and he now has both a living
will and a health care proxy.

"I just want to make sure if I'm ever disabled and unable to make a
decision myself, I want to make sure these wishes are taken care of,"
Calderon said.

Kurre said some lawyers with general practices still counsel clients
that living wills are enough - advice that he considers mistaken.

Carolyn Reinach Wolf, another Great Neck attorney, represents a
number of hospitals and nursing homes, which, she said, have had
repeated problems interpreting living wills.

"I always talk about not doing living wills because they are very
narrow, inflexible legal documents," Wolf said. "With health care
proxies, at least you're dealing with a person - a living, feeling
someone who cares about your preferences."

Birth of living will

The popularity of living wills grew out of the Missouri case of Nancy
Cruzan, who was 24 in 1983 when a car accident left her in a
persistent vegetative state. Cruzan's parents filed a lawsuit seeking
an end to the feeding tube that kept her alive.

After a long court battle, a Missouri judge who heard testimony from
people who knew Cruzan ruled she would not have wanted to be kept
alive in a vegetative state and ordered her feeding tube removed.
Cruzan died in December 1990, 12 days after her parents won the right
to remove the tube.

The Cruzan case led Congress to pass the Patient Self-Determination
Act, co-sponsored by then-Sen. Daniel Patrick Moynihan (D-N.Y.). The
law required hospitals and nursing homes to inform patients of their
right to prepare living wills and other advance directives concerning
health care.

Myra Christopher, president of the Kansas City, Mo., Midwest
Bioethics Center, agrees that living wills haven't lived up to
expectations. The Midwest Center consulted with both the Cruzan
family and Missouri state officials during the case.

"There's a mountain of data that show they do not do what we thought
they would do," Christopher said. "With the living wills, it was
thought who better than the person themselves to say what they
wanted. The reality is that hasn't been accomplished."

Charles Sabatino, an attorney and assistant director of the American
Bar Association's Commission on Law and Aging, uses this comparison
in advising clients to steer clear of living wills: "You can't
provide cookbook directions. Dying is too complicated, and none of us
have a crystal ball to tell us what we will encounter far down the
road."

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