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Living Wills Not the Best Choice, Study Says
May 11, 2004 - Living wills don’t work -- and can’t
work -- for their intended purpose of allowing people to say in advance
how they’d want to be treated if they became too sick to choose for
themselves, a new University of Michigan study says.
The failure of the living will is highlighted in an
article that will be published this week in the new issue of the
bioethics journal the Hastings Center Report by a U-M internal
medicine researcher and a professor of law and internal medicine.
What they find is provocative: The documents
designed to help people choose the treatments they would like when dying
fail to meet five key criteria for success. Worse, the evidence suggests
they don’t work. They base their conclusions on a comprehensive review
of hundreds of studies of living wills, end-of-life decisions and the
psychology of making choices.
The authors are taking on a document that has
become ingrained in American medical culture, that the law of almost
every state specifically recognizes, and that hospitals are required by
federal law to tell their patients about. It is a document that many
experts recommend to avoid the kind of problems raised by the Terry
Schiavo case in Florida, a case in which a patient’s husband and parents
have fought a long legal battle over whether she should be kept alive.
The U-M team can imagine circumstances where the
living wills may be useful for patients who are imminently facing death,
who know their medical circumstances and who have strong and specific
beliefs about them. But the researchers conclude that living wills offer
a false promise of control over end-of-life treatment.
The best patients can do, the researchers argue, is
to use a "durable power of attorney" to appoint someone to make
decisions for them when they can no longer make their own decisions.
"Our review shows that the evidence about living
wills demonstrates that they fail all five tests that would have to be
passed for them to work," says co-author Angela Fagerlin, Ph.D., a
research scientist with the U-M Medical School and VA Ann Arbor
Healthcare System.
"First, most people don’t even have living wills.
Second, those who do rarely know what care they would truly want in some
hypothetical future. Third, it’s surprisingly hard for people to state
their wishes accurately and understandably. Fourth, the document is
often unavailable when decisions need to be made. Fifth, even when it is
available, surrogate decision makers usually cannot reliably apply its
instructions to the patient’s current health condition."
Co-author Carl Schneider, a U-M Law School and
Medical School professor comments, "Living wills don’t fail for lack of
effort, education, intelligence, or good will. They fail because of
basic traits of human psychology."
For instance, studies show that people have great
trouble predicting their own preferences about even simple, everyday
things, like what snacks they will want or what groceries they will buy
next week. "If they have trouble predicting what is familiar," asks
Schneider, "why should we expect them to succeed when they are
predicting what they will want in circumstances they have never
experienced and can’t foretell?"
The living will, Fagerlin explains, was designed by
bioethicists who wanted to give patients a chance to spell out what
treatment they would want and what treatment they would reject if they
became unconscious or unable to make their own decisions for some other
reason. The idea of the living will is to allow people to maintain
control even at the end of life.
Often, the living will starts as a blank form for
patients to fill out in writing, stating their individual preferences.
The instructions might suggest that patients write down whether they’d
want to be kept on life-support machines if they had a catastrophic
accident or were terminally ill.
For instance, according to the instructions for the
form on the U-M Health System Web site, a patient could write, "Do
whatever is necessary for my comfort, but nothing further," or, "I
authorize all measures be taken to prolong my life." Patients can also
write about their wishes regarding specific medical interventions, such
as respirators, cardiopulmonary resuscitation (CPR), surgery and blood
transfusions. And they could say how they feel about receiving food and
water administered through "feeding tubes."
The functional illiteracy of many Americans, and
the difficulty even for skilled writers of expressing their wishes well,
add to the problem, Fagerlin notes. And, people’s preferences often
change as their situations or medical technology changes.
For most people, Fagerlin and Schneider say, a durable power of attorney
for health care may be adequate. DPA’s allow people to name someone whom
they would want to make decisions about their care. That person is
usually the patient’s spouse or child, but it can be any trusted
individual.
"DPA’s only require a few simple choices, and they
don’t differ significantly from the existing system of allowing family
members to make medical decisions about incompetent patients," says
Schneider. "They also allow the decision-maker to use the information
about the patient’s condition that’s available at the time a decision is
needed, rather than asking the patient to guess about something far in
the future. And they’re inexpensive."
If living wills were free, perhaps their failure
wouldn’t matter. But living wills cost money. Patients must take time to
write them, and doctors and lawyers must be paid for their help in
writing them. What is more, the federal Patient Self-Determination Act,
which requires hospitals to tell patients about living wills and other
"advance directives," cost an estimated $101.5 million to start up
nationwide and demands untold time and effort from hospital
administrators and clinicians each year. In addition, the authors find,
here is no convincing evidence that living wills save money by reducing
the cost of end-of-life care. |
