|
Do I
have to have a living will? Last year, I had an
experience that gave me the distinct impression that if
I didn’t have one, my life was hardly worth, well,
living.
A
routine mammogram had revealed that I had early-stage
breast cancer. This kind of cancer is noninvasive and
thus not particularly life-threatening if promptly
attended to, and the required outpatient surgery isn’t
especially risky. Nonetheless, one of the shoals I had
to maneuver through at the hospital (which otherwise
afforded me excellent care) was a series of efforts to
persuade me to sign on to the currently fashionable
notion of a “good death.”
Those
efforts came in the form of a living will, one of those
advance directives on end-of-life care that are
currently urged upon us all by such high-minded
organizations as the American Medical Association, the
American Bar Association, state laws and an array of
policymakers, bioethicists and advice columnists. Even
this newspaper ran a long article in its business
section this year advancing the notion that you haven’t
got your life in order without a living will. Whether to
have a living will is presumably up to the patient. But
I’ve developed a sneaking suspicion that someone else
may be hoping to call the shots. After three attempts to
induce me either to sign up or to state my refusal to do
so in writing, I had to wonder how voluntary a living
will really is in many cases. In my case, I started to
feel ever-so-slightly harassed.
When I
showed up at the hospital for some pre-surgery medical
tests, one of the receptionist’s first questions was,
“Do you have a living will?” The form she gave me after
I shook my head was as complicated as a tax return.
There were numerous boxes for me to check specifying a
range of conditions under which I might like to have a
Do Not Resuscitate order hung over my hospital bed,
whether I would want to be denied “artificial” food and
water under some circumstances, what I thought about
being taken off a ventilator, and so forth.
Furthermore, I found something weasely in the way all
those options were presented, as though my only real
choice were between being dispatched into the hereafter
at the first sign of loss of consciousness or being
stuck with as many tubes as needles in a voodoo doll and
imprisoned inside a ventilator until global warming
melts the ice caps and the hospital washes out to sea. I
found the box on the form that said “I decline a living
will” and checked it. Right now, my husband is my living
will, and after we spent 13 days observing Terri Schiavo
exercise her “right to die” by being slowly dehydrated
to death after her feeding tube was removed in 2005, he
knows exactly how I feel about such matters.
A few
days later, when I returned to the hospital for the
surgery, a different receptionist handed me a second
living will. “I’ve already gone through this,” I said,
handing it back. After the operation, I was back to
begin six weeks of daily radiation. A third receptionist
pulled out the very same form and asked the very same
question: “Do you have a living will?” At least I knew
where to find the “I decline” box fast.
Now, I’m
sure that all three receptionists were just doing their
jobs. A 1991 federal law requires hospitals and other
health-care facilities to make their patients aware of
living wills. Yet the repeated experience of being given
30 seconds in a busy lobby to read and sign a complex
document that cast a negative pall upon positive efforts
to keep me alive did not inspire my confidence in the
living-will industry.
In fact,
when I contemplate the concept of “dying well,” I can’t
avoid the uneasy feeling that it actually means “dying
when we, the intellectual elite, think it is appropriate
for you to die.” Consider what’s happened in recent
years: The classic Hippocratic Oath and its prohibition
against physicians giving people a “deadly drug” has
collapsed with the growing acceptance of such notions as
physician-assisted suicide, the “right to die,” and even
giving some very sick, disabled or demented people a
little push over the edge, as seems to be the case in
the Netherlands. People facing end-of-life decisions may
well feel subtle pressure from the medical and
bioethical establishments to make the choice that will
save the most money, as well as spare their relatives
and society at large the burden of their continued
existence. A “good death”—that’s the English translation
of the Greek word that begins with an “e.” You know,
euthanasia.
Even the
hospice movement, which has historically opposed
anything that smacked of euthanasia, has become tainted
by this thinking. Hospices and home hospice care had
always sounded wonderful to me: providing a comfortable
place for the hopelessly ill to die with sufficient pain
medication and no burdensome and futile efforts to
prolong their lives.
Then,
seven years ago, I paid what I thought would be a last
visit to my 93-year-old father, who was dying of
prostate cancer at home with round-the-clock nursing
care. The phone rang, and I picked it up. On the other
end, a middle-aged male voice inquired about my dad’s
condition. “Sooner or later he’s going to go into a
coma,” said the voice, which never got around to
identifying its owner but was presumably a friend of my
parents’. “Then, what you have to do is take him to a
hospice. That’s what we did with my mother. They’ll put
him on a morphine drip, and he’ll be gone in a few days.
They know what to do.” I was too dumbfounded to ask the
obvious question: Why would someone in a coma need
morphine? (My father, by the way, died at home some five
months after that visit.)
Certainly not all hospices engage in practices that
deliberately hasten death. But in February the
American
Academy
of Hospice and Palliative Medicine reversed its
long-standing opposition to physician-assisted suicide
(which is legal in
Oregon and said to be quietly practiced by many doctors elsewhere)
and adopted a new set of rules that effectively endorsed
the practice. The academy even decided on a new
euphemism for the procedure: “physician-assisted death.”
Even where assisted suicide is illegal, many hospices
now endorse “terminal sedation,” the ethically murky
practice of anesthetizing terminal patients, then
cutting off their nutrition and liquids.
The
problem is that nowadays there is simply no societal
agreement on how people who are sick or disabled beyond
hope of cure ought to be treated. Many people,
especially highly educated, nonreligious people, think
that “physician-assisted death” is exactly the right way
to go—or to send off your unconscious mother. If you
think that bioethicists will erect safeguards against
this sort of thing, think again.
As far
as I can tell, bioethicists exist for the most part to
do some moral chin-pulling before giving the green light
to whatever consensus the rest of the elite have
reached. If you believe, as the Dutch do, that it’s fine
for a children’s hospital to euthanize severely disabled
infants, you can always find a bioethicist to give you a
stamp of approval. If you want to harvest the organs of
dying people without waiting for brain death to occur,
you can probably find a bioethicist to sign on to that,
too. Myself, I’m with Slate blogger Mickey Kaus. In
2003, as the Schiavo controversy was raging and Yale
surgeon Sherwin Nuland, author of “How We Die” and an
advocate of limited assisted suicide, was pontificating
on National Public Radio about her low quality of life,
Kaus wrote: “If I’m ever in Terri Schiavo’s situation,
and not in any pain, please follow these simple steps:
Keep the feeding tube in, and keep Dr. Nuland out.”
It’s not
surprising that many people have reservations about
theories of “dying well” that always seem to involve not
staying alive. In 2004, the Hastings Center Report, a
journal that focuses on bioethics, reported that despite
decades of aggressive promotion of living wills, only 18
percent of Americans of all races had them, including
only 35 percent of residents of nursing homes. Those
most suspicious of the talk about “dying well” are
African-Americans and members of other minority groups.
African-Americans are only one-third as likely as whites
to have a living will, and only one-fifth as many blacks
as whites sign DNR orders.
According to the article’s authors, it seems that people
talk a good game about living wills, especially when
they’re healthy, but when their health begins to fail,
they often have very different ideas about what they
would be willing to undergo to stave off death for a
little while. Furthermore, according to a 1990s study by
the National Institutes of Health, even when patients
have living wills, if those wills contain directives
with which doctors and hospitals disagree (such as, I
myself suspect, prolonging the patient’s life instead of
terminating it), many doctors simply ignore the
patient’s desires. Living wills, it would seem, are
effective only if they happen to comport with doctors’
and bioethicists’ own theories about what is best for
the patient anyway. For this reason, the authors of the
Hastings study propose that instead of filling out a
living will, people execute a durable power of attorney,
a simple document that entrusts decisions about
end-of-life care to a relative or friend who shares the
signer’s moral beliefs about death and dying. That
sounds about right to me.
A year
ago, I received the gentlest of shoulder-taps from the
man with the bony fingers, though he’ll inevitably be
back. I wish we lived in a different kind of society,
one with agreed ideas about what a “good death”
means—but we don’t, at least not now. So I say: Go ahead
and sign a living will if you want. Have your doctor
pull out your feeding tube or inject you with cyanide or
do whatever fulfills your idea of death with dignity.
But count me out. I don’t want to “die well”; I just
want to die in peace.
Charlotte F. Allen is the author of The Human Christ:
The Search for the Historical Jesus. |
