In Copyright Since September 11, 2000
This web site is in no manner affiliated with any Kaiser entity and the for profit Permanente
Permission is granted to mirror this web site -
Please acknowledge where the material was obtained.
License to kill
Wesley J. Smith
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.
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 "inappropriate."
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
For example, if a
patient demands chemotherapy to treat an ulcer, the
physician should refuse. Such a "treatment" would
But this kind of "physiological futility," as it is sometimes called, is not what modern futile-care theory is all about. Treatments are not 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 unconscious patient.
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
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 autonomy.
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 the dispute.
-- If the patient and physician cannot resolve their differences informally, 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
are designed to thwart legal action by patients
or their families. The strategy is to stack the deck by
In the Cambridge
Quarterly of Health Care Ethics, authors urging implementation
of futility policies wrote last year:
California legislators recently enacted a statute that
appears to authorize futile-care impositions upon the
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
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
As if this weren't
enough cause for alarm, Sen. Arlen Specter, R-Pa.,
has introduced federal legislation to let doctors deny
The Health Care
Assurance Act (S24) is a 171-page bill with noble ambitions
to expand health coverage for children and
The bill would be a
disaster for the most vulnerable, disabled and defenseless
among us -- patients who are too often
Then there is the very
real potential that bigoted doctors would apply
futile-care policiesin a discriminatory fashion.
care to control health care costs doesn't add up.
Since only about 10 percent of the nation's entire
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
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.
Wesley J. Smith is the author of "Culture of Death: The Assault on Medical Ethics in America."