As a lawyer, Beverly knows that living
wills don't work. But she still drafted the documents for her parents,
allowing them to say what types of treatment they would and wouldn't
want if they became incapacitated.
"So much of what lawyers do doesn't
have a lot of legal force," said Beverly, a prosecutor who asked
that her last name be withheld to protect her family's privacy, "but
it makes people feel better to have it done."
The notion that living wills aren't ironclad
is a shock to many lay people, who hear the Living Will touted when
end-of-life disputes make headlines. One of the latest cases, that
of Terri Schiavo in Florida, has prompted a host of "don't let
this happen to you" articles and broadcasts that prescribe living
wills as insurance against long, painful court battles.
(Schiavo, 40, has been severely brain
damaged since heart failure 14 years ago. Her husband wants to remove
the feeding tube that's keeping her alive, and her parents are fighting
him in court. Schiavo did not have a living will.)
The reality, according to some legal
experts and researchers, is that Living Wills don't ensure a person’s
wishes will be respected.
THEY'RE TOO VAGUE
Most people imagine a fairly straightforward situation: They're unconscious,
hooked to a respirator and never expected to recover. The reality
is that most end-of-life decisions aren't that black and white:
· You might be conscious, at least
intermittently.
· You might have some functions, but not others. Schiavo, for
example, can breathe but cannot eat or move much on her own. Robert
Wendland, a brain-damaged California man at the center of another
spouse-versus-parent battle, was able to catch a ball and perform
other tasks.
You might suffer a condition that doesn't have a clear prognosis.
Even in Schiavo's case, the parents’ doctors have argued that
some recovery is possible (while other doctors consulted in the case
disagree).
You also might suffer an entirely treatable
ailment and have many months if not years of possible life ahead of
you. Mary Dyer’s husband, for example, may have been able to
survive repeated bouts with pneumonia. But the Bend, Ore., woman said
10 years of slow decline from Alzheimer's and Parkinson's disease
had left her longtime spouse unable to recognize or communicate with
anyone -- "little more than a vacant-eyed vegetable buried alive
in a steel-fenced hospital bed."
"The toughest day of my life was
the Monday when I walked into the nursing home with written orders
to remove the tubes inserting high-tech antibiotics," Dyer said.
"I sat by his bedside from Monday to Friday . . . watching and
listening to him slowly drown in his own body fluids."
Others make different choices. One of
my relatives was dying of cancer when she began bleeding internally.
Although she had lodged a "do not resuscitate" order with
her physician, she opted for treatment, guessing -- correctly as it
turned out -- that she could live a few more months. Her quality of
life may not have been stellar, but she lived to see her son graduate
from college and managed to attend a celebration dinner a few weeks
before her death.
Even living wills that detail many different
scenarios can’t possibly include everything that might happen
to you, said attorney Ed Long, executive director of HELP, a Torrance,
California based nonprofit education service for older adults.
And most people are ill-equipped to imagine
even the most common scenarios, let alone how they'll feel in advance
about any particular choice. That was one of the conclusions of University
of Michigan researchers Angela Fagerlin and Carl Schneider, who reviewed
hundreds of studies of living wills, end-of-life decision-making and
psychological studies before concluding that living wills don't --
and can’t -- work as advertised.
THEY DON'T
GET USED
Sometimes family members don't know that a living will exists; at
other times, they can’t find it. Even if it’s in their
possession, your loved ones may disagree with your wishes or communicate
what they would want in your situation.
The hospital experiences of people with
and without the documents indicate that the existence of a living
will doesn't seem to change much. One study the Michigan researchers
reviewed showed no difference in the number of operations, invasive
procedures, diagnostic testing, length of hospital stays or cost of
treatment between patients who had living wills and those who didn't.
Often, the documents aren't even consulted
because both doctors and family are reluctant to acknowledge death
may be imminent, researchers Fagerlin and Schneider said.
"So by the time doctors and family
finally conclude the patient is dying," the researchers wrote
in their paper, "Enough: The Failure of the Living Will,"
"the patient’s condition is already so dire that treatment
looks pointless, quite apart from any living will."
They can’t shout down a contentious
family member
As Beverly noted, it’s naive to suppose a legal document such
as a living will can prevent a court challenge by a determined family
member or other interested party.
The dissenter can argue that you've changed your mind since writing
the document, or that the situation you face differs from the ones
the living will was designed to cover. While the dissenter might not
prevail in the end, it won’t prevent lots of money being spent
on lawyers.
And it may never get as far as a courtroom,
anyway. Lawsuit-wary physicians might placate the dissenter, and if
the person you named as decision-maker isn't a strong advocate for
you or the document, your wishes will not prevail.
3 STEPS TO TAKE
NOW
Does this mean living wills are useless? Absolutely not. If you already
have one, it can give your loved ones some indication of what you
might have wanted. But you shouldn't assume the living will is all
you need.
Everyone who wants some say in end-of-life
decisions should do three things:
1. Draft a durable power of attorney
for health care (known in some states as a health-care proxy). This
legal document designates who will make decisions for you if you can’t
make them for yourself. A lawyer can draft this for you, or you can
use the forms included in many will-making kits and software packages.
Choose your decision-maker carefully.
Although many people pick a spouse or a child, these may not be the
best choices, Long said. "They might not be willing to let you
go," he said. "You need an advocate . . . someone who can
fight off family who disagree and deal with the medical system."
Also, consider naming one or two alternates
if your first choice is unable to serve.
2. Explore your feelings about end-of-life
care. Long’s organization has a pamphlet called "Your Way"
that helps people think about the kinds of care they would want in
various situations.
He also suggests thinking about what
makes your life worth living. "My father-in-law loved sunshine,
loved to garden . . . and he loved to eat," said Long. When the
man fell ill, the family knew that he wouldn't have consented to a
feeding tube and were able to prevent one from being inserted.
3. Talk about what you want -- and keep
talking. Your family and your decision-maker need to know where you
stand on these issues. But you may not be able to settle it all with
one conversation, since your views on what is and isn't appropriate
care may change over time.
Someone who's a born fighter may be weary
of the battle and be willing to "let go" after a long or
painful illness.
Conversely, young people in great health
may be horrified at the thought of disability. As they grow older,
however, they may discover that disabilities can be accommodated and
that other things can make life worth living.
WHAT'S APPROPRIATE
FOR ONE PERSON MAY NOT BE FOR OTHERS
Beverly, for example, believes her family
made the right decision in taking her 77-year-old grandfather off
a respirator after pneumonia and heart failure rendered the once "hale
and hearty" man helpless. He was conscious off and on, but doctors
told the family he'd be on the machine for the rest of his life and
the family decided the "in control" patriarch wouldn't have
wanted to live that way.
A single mother, Beverly decided she
would prefer to remain alive if she were conscious and able to communicate
with her young son. She's told her family how she feels.
"Maybe it’s the lawyer in
me, that if I can talk or communicate, it can’t be that bad,"
Beverly said. "If I'm conscious, I want to be around."
Liz Pulliam Weston's column appears every
Monday and Thursday, exclusively on MSN Money. She also answers reader
questions in the Your Money message board.
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