The English Patient

-From the May 30, 2005 issue: Leslie Burke wants to live;
the National Health Service has a second opinion.

By Wesley J. Smith
The Weekly Standard
May 30, 2005, Volume 010, Issue 35
London

THE MOST IMPORTANT BIOETHICS LITIGATION in the world
today involves a 45-year-old Englishman, Leslie Burke. He
isn't asking for very much. Burke has a progressive
neurological disease that may one day deprive him of the
ability to swallow. If that happens, Burke wants to
receive food and water through a tube. Knowing that
Britain's National Health Service (NHS) rations care,
Burke sued to ensure that he will not be forced to endure
death by dehydration against his wishes.

Burke's lawsuit is even more important to the future of
medical ethics than was the Terri Schiavo case. Schiavo
was dehydrated to death -- a bitter and profound
injustice -- because Judge George W. Greer ruled both
that Terri was in a persistent vegetative state and
(based on statements she allegedly made during casual
conversations some 20 years ago) that she would not want
to live under such circumstances. In other words, Terri
Schiavo lost her life in order to safeguard her personal
autonomy, though she never made the actual decision to
die.

But Burke, who is fully competent, worries that his
wishes will be ignored precisely because he wants food
and water even if he becomes totally paralyzed. Receiving
food and water when it is wanted certainly seems the
least each of us should be able to expect. But, it turns
out, whether Burke lives or dies by dehydration may not
be up to him. According to National Health Service
treatment guidelines, doctors, rather than patients or
their families, have the final say about providing or
withholding care.

Burke

won his case at the trial court level when a judge ruled
that denying the tube-supplied food and water a patient
wants "would be a breach of claimant's rights under . . .
the European Convention on Human Rights." This should be
uncontroversial. But the General Medical Council, the
medical licensing authority, appealed, joined by the
British government.

Why do Britain's medical establishment and government
insist that Burke be denied a right to decide whether he
receives tube-supplied food and water? It all boils down
to two concepts that are increasingly intertwined in
modern bioethics theory and practice. First is the so-
called quality-of-life ethic that presumes to judge the
worth of patients' lives according to their mental and
physical capacities. Under this view, doctors or
bioethicists may judge a life to be of such low quality
that it is not worth extending, irrespective of the
patient's wishes. The second issue is money -- an
especially potent factor for England's increasingly
strained socialized medical system.

Accordingly, the secretary of state for health argued
before the Court of Appeal that while patients have the
right to refuse life-sustaining treatment, they don't
have a corresponding right to receive it. Even though the
Burke case does not involve high tech medical procedures
-- he is not asking for a respirator or kidney dialysis,
after all -- the government claims that the trial court's
ruling undermines the authority of doctors to make the
"clinical judgment" about whether a patient's "treatment
would be of benefit," based at least in part on the
question of "the resources which are available." The
right of doctors to exercise such control is "absolutely
fundamental to the day-to-day functioning of the NHS."

In support of the government's position, the secretary of
state filed a statement by Elizabeth Woodeson, the head
of scientific development and bioethics at the Department
of Health. Her testimony demonstrates the threat that
contemporary bioethics poses to the lives of vulnerable
patients. As Woodeson explained, the National Health
Service established the National Institute for Health and
Clinical Excellence (given the creepily inappropriate
acronym NICE) to issue "clinical guidelines" that blend
efficacy of outcomes, quality of life judgments, and
economics:

  An assessment is made of the cost of the treatment per
  additional year of life which it brings, and per
  quality adjusted life year (QALY) . . . which takes
  into consideration the quality of life of the patient
  during any additional time for which their life will
  be prolonged. The clinical and cost effectiveness of
  the treatment under review is then used as the basis
  for a recommendation as to whether or not . . . the
  treatment should be provided in the NHS. . . . The
  Secretary of State believes that . . . clinicians
  should be able to follow NICE guidelines without being
  obliged to accede to patient demands. . . . If that
  principle were undermined, there would be considerable
  risk of inefficient use of NHS resources.

In other words, medical care is effectively rationed by
the National Health Service under guidelines set by
bioethicists based on their beliefs about the low quality
of life of patients whom they have never met. While the
views of patients and families are to be taken into
account when deciding whether to provide treatment, they
are not determinative.

This top-down approach is what Leslie Burke is rebelling
against. He knows that many bioethicists have a low
opinion of the quality of life of people with profound
disabilities. Burke doesn't trust doctors, much less
bioethicists, to judge whether his life is worth living.
"I feel strongly that my body and my being are mine,"
Burke insisted when I visited him recently at his
Lancaster home. "But my desire [to live] can be
overridden" based on prejudice against the disabled. "I
am no different than anybody else, but I am not seen that
way anymore."

Adding heft to Burke's concerns: When I privately
discussed his case with a prominent British physician who
I expected would sympathize with Burke's views, I was
taken aback when he told me crossly, "Burke is only
thinking of himself rather than looking at the bigger
picture." How thoughtless of him.

IT WOULD BE A MISTAKE to assume that Americans are safe
from having life-sustaining treatment rationed like this
just because we don't have a national health service.
Burke is fighting a broader movement in the bioethics
field, "Futile Care Theory," that is also gaining
traction here. Futile care theory is a one-way street
when it comes to patient autonomy and end-of-life care.
Futilitarians assert that patients have an absolute right
to refuse life-sustaining treatment but are not similarly
entitled to insist that their lives be maintained.
Indeed, under futile care theory, as under the NHS
rationing approach, whether a seriously ill or disabled
patient's request to be kept alive is granted depends on
whether doctors and bioethicists see the patient's life
as worth living and spending medical resources to
sustain.

For the last several years American hospitals have been
quietly promulgating futile care protocols that empower
their ethics committees to authorize doctors to
unilaterally refuse wanted care. These futile care
policies are beginning to be imposed on unwilling
patients and their families.

As is usually the case in such matters, the first victims
are on the far margins. Thus, in Houston, Sun Hudson, a
5-month-old infant born with a terminal disability, was
taken off a ventilator in March over his mother's
objections based on a Texas law that defers to futile
care theory. Under the law, once a hospital bioethics
committee determines that the treatment should not be
rendered, the patient or family has a mere 10 days to
transfer the patient's care to another hospital. This can
prove difficult in this era of managed care and HMOs,
since the affected patients are usually the most
expensive to treat. After 10 days without a transfer, the
outcome is usually death following the unilateral
withdrawal of treatment -- as occurred in Sun Hudson's
case.

In another Houston case, one with ironic echoes of Terri
Schiavo, the wife of Spiro Nikolouzos wants tube-feeding
for her persistently unconscious husband, based on his
previously stated desire to live. But unlike Schiavo's,
Nikolouzos's personal wishes are not deemed
determinative: A hospital ethics committee voted to
refuse to continue his tube-supplied food and water and
ventilator support. He would have died, but a San Antonio
hospital unexpectedly agreed to provide the care. Then
its ethics committee also decided to cut off care, but
Nikolouzos was transferred to a nursing home. For the
moment, Nikolouzos is being allowed to stay alive. But
the final decision about the matter isn't his wife's:
Under futilitarian Texas law, it belongs to committees of
bioethicists and doctors.

In this darkening atmosphere, the Leslie Burke case could
not be more important. If Burke loses on appeal, patients
in Britain will be stripped of the basic human right to
receive food and water through a feeding tube. Such a
ruling should send a cold shiver through disabled,
elderly, and dying patients everywhere.

Moreover, given the increasing propensity of some Supreme
Court justices to look overseas when deciding issues of
American law, a Burke loss could plausibly end up
reinforcing futile care laws in this country. There will
undoubtedly be protracted litigation on this issue in
coming years. How Leslie Burke fares may determine
whether futile care theory is allowed to metamorphose
from ad hoc health care rationing into an explicit -- and
expanding -- duty to die.

Wesley J. Smith, a senior fellow at the Discovery
Institute and an attorney and consultant for the
International Task Force on Euthanasia and Assisted
Suicide, is the author, most recently, of Consumer's
Guide to a Brave New World.

http://www.weeklystandard.com/Content/Public/Articles/000/000/005/645igjun.asp

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Posted on 5/21/2005 12:27:25 PM PDT by quidnunc

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