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License to kill 
Hospitals reserve the right to pull your plug

Wesley J. Smith 

Originally Published at:http://www.sfgate.com/chronicle

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" or "inappropriate." 

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 "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 
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. 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 
life-sustaining care pending a full trial. 

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 
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 disputes. " 

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 medically indicated." 

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 for." 

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.