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Euthanasia and "Futile Care"
Imagine visiting your 85-year-old mother in the hospital after she has a debilitating stroke. You find out that, in order to survive, she requires a feeding tube and antibiotics to fight an infection. She once told you that no matter what happened, she wants to live. But the doctor refuses further life-sustaining treatment. When you ask why, you are told, in effect, "The time has come for your mother to die. All we will provide is comfort care."
Sound far-fetched? It's not. It's already happening.
Just as doctors once hooked people up to machines against their will, now
many bioethicists advocate that doctors be permitted to refuse
life-sustaining treatment that a patient wants but that they deem "futile"
Alarmingly, hospitals in California and throughout the country have begun
to implement these "futile-care" policies that state, in effect: "We
reserve the right to refuse service."
Medical and bioethics journals for several years kept up a drumbeat
advocating the implementation of medical futility policies that hospitals
-- for obvious reasons -- don't publicize. The mainstream news media have
generally ignored the threat.
As a consequence, members of the public and their elected representatives
remain in the dark as "futilitarians" become empowered to hand down
unilateral death sentences.
Indeed, futile-care policies are implemented so quietly that no one knows
their extent. No one has made a systematic study of how many patients'
lives have been lost or whether futile-care decisions were reached
according to hospital policies or the law.
The idea behind futile care goes like this: The patient wants life-
sustaining treatment; the physician does not believe the quality of the
patient's life justifies the costs to the health institution or the
physical and emotional burdens of care; therefore, the doctor is entitled
to refuse further treatment (other than comfort care) as "futile" or
Treatments withheld under this policy might include antibiotics to treat
infection, medicines for fever reduction, tube feeding and hydration,
kidney dialysis or ventilator support.
Of course, physicians have never been -- nor should they be -- required to
provide medical interventions that provide no medical benefit.
For example, if a patient demands chemotherapy to treat an ulcer, the
physician should refuse. Such a "treatment" would have no medical benefit.
But this kind of "physiological futility," as it is sometimes called, is
not what modern futile-care theory is all about.
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refused because they don't provide any medical benefit, as in the case of
chemotherapy to treat an ulcer. Rather, they are refused because they
actually sustain life -- such as a feeding tube does for a persistently
It isn't the treatment that is deemed futile but, in effect, the patient.
Early attempts to impose futile care upon unwilling patients and families
were often ad hoc. For example, a few years ago I received an urgent phone
call from a distraught woman who told me that her 92-year-old mother's
doctor was refusing to give the woman antibiotics for an infection.
When I asked why, she said, "He told me my mother was going to die of an
infection sooner or later, so it might as well be this one."
I advised the woman to get an attorney and threaten suit. That apparently
did the trick. She later called to tell me her mother was being treated
and was well on the way to recovery.
In 1994, the parents of a premature infant sued to prevent the imposition
of futile care upon their son, "Baby Ryan" Nguyen, after doctors told them
they were ending his kidney dialysis.
Ryan would have died, but the Nguyens' attorney obtained a temporary court
order forcing doctors to provide continued life-sustaining care pending a
The doctors and hospital did not take the Nguyens' defiance lying down.
They filed an affidavit requesting the right to refuse to provide
treatment, claiming that Ryan's condition was "universally fatal" and that
continuing life-sustaining treatment was a violation of their ethics and
Astonishingly, a hospital administrator even went so far as to report the
Nguyen family to Child Protective Services for "physical abuse and
physical neglect" of Ryan based on the parents' success in obtaining the
injunction to keep their child from death.
The case could have had a major legal impact on the entire futile care
debate. But the trial judge never decided who had the ultimate right to
determine Ryan's fate. The case ended when Ryan was transferred to a
Portland hospital, where a different physician successfully weaned him off
dialysis. Ryan lived four years, a happy if sickly child who gave
high-fives and was the delight of his parents' hearts.
Cases like Baby Ryan's led futilitarians to pursue a more sophisticated
approach to securing their agenda. Rather than have doctors act on their
own accord or file lawsuits seeking permission to refuse wanted care,
which had been attempted on several occasions with mixed results, many
futilitarians began to argue that hospitals adopt written futile-care
policies establishing formal procedures by which wanted life-sustaining
treatment could be refused.
Although given little attention in the news media, these policies have
been extensively described in medical and bioethical publications, such as
the Journal of the American Medical Association, the New England Journal
of Medicine and Health Progress.
Most policies set up internal hospital procedures that work like this:
-- If a patient wants life-sustaining treatment that the physician wishes
to refuse, social workers, chaplains and hospital staff attempt to mediate
-- If the patient and physician cannot resolve their differences
the matter is referred to the hospital ethics committee for adjudication.
-- If the ethics committee determines that the treatment is inappropriate,
a decision based on the institution's own futile-care standards, life-
sustaining treatments may be terminated even if the patient or family find
another doctor willing to provide the desired care at that hospital.
-- At that point, the patient or family have three options. Acquiesce,
which means the patient probably dies. Find another hospital -- not likely
in our managed-care environment, since life-sustaining treatment treatment
to continue, as did Baby Ryan's parents.
Futile-care protocols are designed to thwart legal action by patients or
their families. The strategy is to stack the deck by convincing judges
that they, mere lawyers, are ill-equipped to gainsay what doctors and
bioethicists have decided is best.
In the Cambridge Quarterly of Health Care Ethics, authors urging
implementation of futility policies wrote last year: "Hospitals are likely
to find the legal system willing (and even eager) to defer to well-defined
and procedurally scrupulous processes for internal resolution of futility
Considering that California legislators recently enacted a statute that
appears to authorize futile-care impositions upon the sickest patients,
that may be a winning strategy. Section 4735 of the California Probate
Code states that a doctor or hospital "may decline to comply with an
individual health care instruction" that runs contrary to "generally
accepted health care standards." This means that once futile care becomes
mainstream, the law will permit doctors to refuse wanted treatment that
runs contrary to their values -- even if such care is necessary to keep
the patient alive.
This little-noticed law raises an urgent question: How many California
hospitals have already promulgated futile-care policies? Unfortunately, no
one knows. But there is little doubt that the number is growing fast.
Authors of the Cambridge Quarterly article surveyed 26 California
hospitals, including UCSF, Kaiser Permanente, Stanford, UCLA and Cedars-Sinai.
Without identifying the hospitals, they reported 24 had protocols in place
that "defined nonobligatory treatment" in terms that were not "physiology
based" -- in other words, a treatment that has no medical benefit.
Of these, "nine policies assigned the final decision-making authority to
the responsible physician."
Other policies gave the power to hospital committees, the chief of staff
or the hospital administration. Tellingly, only seven protocols permitted
the patient or patient representative to have the final say.
As if this weren't enough cause for alarm, Sen. Arlen Specter, R-Pa., has
introduced federal legislation to let doctors deny life-sustaining
treatment against the will of the patient or the patient's family.
The Health Care Assurance Act (S24) is a 171-page bill with noble
ambitions to expand health coverage for children and disabled people.
Buried in the bill's bowels is a provision that permits hospitals to
withhold care that is determined to be "either futile or otherwise not
The bill would be a disaster for the most vulnerable, disabled and
defenseless among us -- patients who are too often dehumanized and
callously viewed as parasites on limited health care resources.
Then there is the very real potential that bigoted doctors would apply
futile-care policiesin a discriminatory fashion. Indeed, a 1996 study
published by the Mayo Clinic found that "CPR was more likely to be
considered futile if the patient was not white."
Implementing futile care to control health care costs doesn't add up.
Since only about 10 percent of the nation's entire health care budget goes
to end-of- life care, little would actually be saved.
But cost control isn't the ultimate point for futilitarians.
As many of them see it, if the nation were to swallow futile care theory,
it would establish the principle that health care can be explicitly
"rationed" -- a euphemism for discrimination against people who are
elderly, disabled, chronically ill, dying or otherwise "expensive to care
Seen in this light, medical futility is the foot in the door that would
begin the step-by-step descent from a health care system based on
Hippocratic principles -- "First, do no harm" -- to a system in which
access to medical care is restricted to some but open to others.
Futile care is not the finishing line of this important ethical and legal
struggle, but merely the starting gate of a far longer race.