Futile Care Theory and Medical Fascism

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Futile Care Theory and Medical Fascism

The Duty to Die

 

by Wesley J. Smith

 

" My mother’s doctor is refusing to give her antibiotics, " the woman caller told

me in an urgent voice.

 

" Why is he refusing to prescribe antibiotics? " I asked.

 

" He says that she’s 92 and an infection will kill her sooner or later. So, it

might as well be this infection. "

 

As disturbing as this call was, and as outrageous the doctor’s behavior, I

wasn’t particularly surprised. I have been receiving such calls with increasing

frequency over the last several years. Not every day. Not every week. But with

enough regularity to know that something frightening is happening to American

medical ethics.

 

There was the case of the Indiana teenager whose doctor refused to treat the

boy’s 107 degree fever because he was severely brain damaged from an auto

accident. Had the boy’s father not been a powerful corporate executive capable

of bringing great pressure to bear on the doctor, his son would have died.

Today, the young man is conscious, back home, and slowly recovering.

 

Then there was the Oregon woman whose nursing home doctor placed a DNR (Do Not

Resuscitate) order on her medical chart over her and her family’s objections.

Even though the patient was competent to decide for herself, it took a lawyer’s

threat of litigation to get the DNR removed from the chart.

 

Lawyers were also required by the brother of a Colorado woman with brain cancer.

When he insisted on continuing treatment after the disease went into remission—a

decision with which his sister agreed—the health insurer sued to disqualify him

as the surrogate decision-maker. Not only that, threats were made to charge the

family for the entire cost of treatment. The case ended when the woman died

after surgery to repair a severe bed sore.

 

These cases show that something is rotten in the state of our current medical

system and getting more rotten every day. Patients are entitled to make their

own health care decisions based on " informed consent, " that is, they may accept

or reject medical treatment based on information supplied by the doctor as to

its hoped-for benefits and potential risks. Instead they are being precipitously

shunted toward the " exit " sign and being urged to take early checkout from life.

 

Back when a lot of money could be made in medicine keeping people alive on

machines, some patients and families complained bitterly that their right to

reject unwanted medical treatment was violated by doctors who refused to

disconnect life support when it was no longer desired. This was seen, correctly,

as an unwarranted interference by doctors with the personal autonomy of their

patients. The problem was addressed by enacting laws protecting people’s right

to refuse unwanted medical treatment, even if the likely result was death. If

anything, we now err on the other side. The imperative for personal autonomy in

medicine has now grown so strong that the feeding tubes of cognitively disabled

people who are not terminally ill can (inappropriately in my view) be removed at

the request of surrogate decision-makers, with the explicit intention of causing

their death by dehydration.

 

If people can say no to life-saving medical treatment in the name of autonomy,

consistency requires that they also be allowed to say yes. But that is not how

things are working out. In the emerging brave new world of medicine, personal

autonomy applies strictly only when the " correct " end-of-life health care

decision is made. Patients or families who make treatment decisions disapproved

of by doctors, government bureaucrats, and health insurance executives—people

who choose, in Dylan Thomas’ famous words, to rage against the dying of the

light—frequently discover to their dismay that personal autonomy has its limits.

 

Futile Care Theory

 

While society and the media have focused primarily on the importance of personal

autonomy in the context of the " right to die, " little attention has been paid to

concurrent efforts to disregard autonomy when a dying or disabled patient wants

care that bioethicists, moral philosophers, doctors, and managed-care health

insurance executives deem " futile. " Futile Care Theory goes something like this:

When a patient reaches a certain predefined stage of age, illness, or injury,

any further treatment other than comfort care shall be deemed " futile " and shall

therefore be withheld, regardless of the desires of the patient or family. The

personal values and morals of the patient are no longer relevant. End of story,

and often, end of life.

 

If Futile Care Theory were an objective concept, this would not be cause for

alarm. Using an extreme example to illustrate the point: in simple objective

terms, a doctor would properly and ethically refuse a patient’s request that a

kidney be removed as treatment for an ear infection (even though this request

was an act of personal autonomy) because the requested " treatment " would have no

possible medical benefit to the patient. Indeed, it would be unethical to remove

the kidney since it would cause the patient very real harm.

 

But this objective approach is not what Futile Care Theory is all about. Rather,

as preached by the medical intelligentsia, the notion of futility is based on

the perceived subjective value—or better stated, the lack thereof—of the

patient’s life. In this context, futilitarianism becomes an exercise in raw

social Darwinism in that it views some patients’ lives as having so little

quality, value, or worth that the treatment they request is not worth the

investment of resources or emotion it would cost to provide.

 

The first group of patients attacked by futile care theorists were the

permanently unconscious. Unsatisfied with limiting the removal of feeding tubes

to those circumstances where dehydration is specifically requested,

futilitarians have begun to promote ethical policies that require food and

fluids be withheld from such patients regardless of the desires of patient or

family.

 

Advocacy of this position comes from the highest levels of the medical

establishment. For example, in May 1994, Dr. Marcia Angell, executive editor of

New England Journal of Medicine, wrote in the Journal that the legal presumption

in favor of life as applied to patients diagnosed with permanent unconsciousness

should be removed so that " demoralized " care givers won’t be forced to provide

care they believe is futile or which wastes " valuable resources. " How? One way

suggested by Dr. Angell would be to change the definition of " death " to include

a diagnosis of permanent unconsciousness. (A November 1, 1997, article in the

British medical journal Lancet, took the next logical step by urging that such

" dead " patients have their hearts stopped by injection so that organs could be

harvested.)

 

Realizing the PR difficulties inherent in declaring a breathing body a corpse,

Dr. Angell wrote that she would settle for mandatory time limits on providing

medical treatment for the unconscious or the creation of a legal presumption

forcing families with the " idiosyncratic view " that their loved ones should be

given life-sustaining treatment to prove in court that the patient would want

such care.

 

People with severe brain damage are not the only ones futilitarians want to push

out of the life boat. In 1993, Daniel Callahan, one of the world’s foremost

bioethicists, urged in The Troubled Dream of Life that health care be rationed

based on age. He has since gone further, arguing that treatment should be deemed

futile if " there is a likely, though not necessarily certain, downward course of

an illness, making death a strong probability, " or when " the available medical

treatments for a potentially fatal condition entail a significant likelihood of

extended pain or suffering, " or when care would " significantly increase the

likelihood of a bad death. "

 

These definitions are so vague that almost any serious life-threatening medical

condition potentially qualifies. Moreover, they beg the question: what if

patients want to assume such risks of treatment in order to save their lives?

 

All of this sounds suspiciously like the creation of a duty to die. Indeed, the

idea that people deemed done for by the medical intelligentsia have such a duty

is under active discussion within bioethical circles. A peer reviewed article,

" Is There A Duty to Die? " in the March-April 1997 Hastings Center Report—one of

the world’s most respected bioethical journals—is a case in point. According to

the author, John Hardwig, an East Tennessee State University medical ethics

professor, among those with a " duty to die " are the elderly above the age of 75

and people whose continued life will " impose significant burdens—emotional

burdens, extensive care giving, destruction of life plans. " Among others who are

expendable are people whose loved ones " have already made great

contributions—perhaps even sacrifices—to make their life a good one, " and people

whose illness or disability renders them " incapable of giving love. " People who

don’t accept this duty, according to Hardwig, suffer from " a

moral failing, the sign of a life out of touch with life’s basic realities. "

 

It is important to emphasize that these advocacy articles are not the ranting of

some fringe. They are being published in the most prestigious medical and

ethical journals in the world and insinuating their way into a status of

respectability. It is the beginning of the route to consensus which effectively

excludes public input. The " experts " argue among themselves in professional

publications and seminars about what a specific health care policy should be.

Agreement is eventually reached and then it is on to the courts and legislatures

to solidify these agreed upon policies into legal precedent and statutory law.

 

We have seen this routine before. Fifteen years ago, journals such as the New

England Journal of Medicine and the Hastings Center Report led the way in

molding an ethical consensus that tube-supplied food and fluids should be

considered medical treatment, leading directly to current laws and court

decisions permitting intentional dehydration of people—both conscious and

unconscious—suffering from severe cognitive disabilities. Ten years ago the

discussion concerned living wills. Five years ago (and continuing), the hot

topic was assisted suicide. In some sense, Jack Kervorkian is merely a battering

ram for those who follow him but never have to deal with the outrage his

activities occasion.

 

Pay close attention to this ongoing dialogue in the medical world today and it

becomes vividly clear that Futile Care theorists seek to create public policies

that promote death as the answer to the problems of old age, debilitating and

terminal illnesses, and dependency caused by cognitive disability. Futile Care

advocates view people who reach these stages of life as better off dead—for

their own benefit, for that of their families, and for society. If " choice "

achieves the death goal, thereby preserving the ideal of personal autonomy, all

well and good. But if the claims of personal autonomy are a hindrance, then

" choice " will be discarded as counterproductive and the decision will be made

for the patient and family.

 

From Theory to Practice

 

Futile Care Theory is not merely some ominous possibility lurking in the future.

It is already being imposed on some patients. In Michigan, when the parents of

the prematurely born infant, Baby Terry, refused doctors’ advice to turn off

their child’s life support, they were brought up on charges of child abuse and

stripped of their right to make medical decisions for their baby—solely because

they insisted on continuing medical treatment. (The child died before the trial

court’s decision could be appealed.)

 

In Massachusetts, a 71-year-old woman, Catherine Gilgunn, explicitly instructed

doctors and family that vigorous efforts be made to keep her alive. After she

became unconscious from a stroke, rather than obeying her instructions as

reiterated by Mrs. Gilgunn’s daughter, the doctor instead removed her from the

respirator, resulting in death. The family sued for malpractice but lost the

case when the judge instructed the jury that any treatment that did not promise

a cure was futile.

 

In the state of Washington, another family was turned in for child abuse by a

hospital administrator when they obtained a court injunction ordering kidney

dialysis to continue for their prematurely born son, known as Baby Ryan. Next,

the doctors and hospital administrators vigorously fought the parents in court

over who had the right to decide the level of Ryan’s care. Doctors even signed

sworn affidavits that the child had " no chance " of surviving, arguing that

continued treatment thereby violated their ethics. Happily, the doctors were

dead wrong. Baby Ryan survived when his care was transferred to another medical

team. Today, at age 5, Ryan struggles to overcome health problems associated

with his premature birth, but he no longer needs kidney dialysis. Had the

doctors’ " values " prevailed over the autonomy of the parents, Ryan would be but

a painful memory.

 

These legal cases are the first drops of a coming torrent. All over the country

and to an ever increasing degree, policies permitting the refusal of desired

care for the frail elderly, very prematurely born infants, those who are

diagnosed as permanently unconscious, the severely disabled, and the terminally

ill—the weakest and most vulnerable among us—are being formally implemented and

put into clinical practice.

 

In February 1997, the Alexian Brothers Hospital in San Jose, California,

instituted a formal Futile Care ( " Non-Beneficial Treatment " ) policy. Its stated

purpose: " to promote a positive atmosphere of comfort care for patients near the

end of life " and to insist that " the dying process must not be unnecessarily

prolonged. " Who decides what is unnecessary prolongation of dying? The hospital,

of course.

 

The Alexian Brothers policy presumes that requests for medical treatment or

testing, including CPR, is " inappropriate " for a person with any of the

following conditions:

 

• Irreversible coma, persistent vegetative state, or

 

anencephaly.

 

• Permanent dependence on intensive care to sus-

 

tain life.

 

• Terminal illness with neurological, renal, onco-

 

logical, or other devastating disease.

 

• Untreatable lethal congenital abnormality.

 

• Severe, irreversible dementia.

 

The only care such patients are entitled to receive is comfort care.

 

This is devastating to such people who want treatment. Under the policy, healthy

severely mentally retarded people could be denied CPR that their families want

for them as well as other medical treatments such as antibiotics to fight

infection and reduce fever. Dying people may be denied the extra weeks or months

of life that desired CPR might provide them. People who are deemed permanently

unconscious (a condition notoriously misdiagnosed) will have tube-supplied food

and fluids withheld whether their families agree or not.

 

Worse yet, doctors who violate this policy must " provide written justification "

for the treatment provided. Moreover, to ensure that doctors toe the line,

snitching is encouraged by nurses and others against physicians who provide

treatment or testing " such as antibiotics, dialysis, blood tests, or

monitoring, " that the hospital’s policy has declared inappropriate. The

punishment for deviation from the policy is unmentioned, but it can be presumed

that a doctor who consistently refuses to follow the hospital’s dictates would

be in jeopardy of losing staff privileges.

 

Patients and families are also subjected to pressures that are hard to

withstand. If the patient or family " insists on continuing treatment after

advisement that it is non-beneficial, " the matter is sent to the bioethics

committee, an anonymous group whose deliberations are held in private. " If the

recommendations of the bioethics committee are not accepted by the patient (or

surrogate), care should be transferred to another institution. " And if, as is

often the case, there is no other institution willing to take the patient? The

policy is silent, but one presumes the care will be refused despite patient and

family desires.

 

Toward Collective Medical Decision-Making

 

Futilitarians are working to replace the current medical system in which private

health care decision-making between patient and doctor is sacrosanct with a

legally enforceable collective standard of allowable—and disallowable—medical

care. So admits Dr. Donald J. Murphy who heads up the Colorado Collective for

Medical Decisions (CCMD), a futilitarian think tank that expects to distribute

futile-care guidelines throughout the nation by 1999.

 

In an interview given during my research for Forced Exit, Dr. Murphy described

the future he and other futilitarians envision: Health will be a community

concept as much as an individual one, and will include other community

considerations such as the need for " recreation and transportation. " Doctors’

duty to their patients will be subsumed by their overarching responsibility to

the collective. Consequently, the parameters of private health care

decision-making will be limited to those choices considered appropriate by the

community. (For example, according to Dr. Murphy, mammograms would be permitted

for women in middle age but not for women who are elderly.) And when people

reach certain predefined stages in life, in the infamous words about the elderly

by CCMD co-founder, former Governor Richard Lamm, they will have a " duty to die

and get out of the way. "

 

Futile Care Theory has already poisoned Oregon’s Medicaid Program, the first in

the nation to explicitly ration health care. The rationing program seeks to

expand eligibility for Medicaid by cutting costs through limiting certain

treatments. Here’s how the program works: A list was created consisting of 745

medical treatments. The lower the number, the more beneficial the treatment is

deemed. Every two years, a cut-off line is determined based upon budget

estimates. If the number of the treatment a poor person needs is below the cut

off line, it will be covered by Medicaid. If it is above the cut off line, it

will not be funded—which, of course, means that it will not be provided. In

1994, for instance, the cut-off number was 606. It is currently 578.

 

The number each treatment received in the rationing hierarchy was established,

in part, by the kind of futilitarian political determination advocated by CCMD.

The effect was to pit some poor, sick people against other poor, sick people.

Not surprisingly, those with political clout generally did well, while the

relatively powerless found their treatment needs excluded from coverage. For

example, as initially proposed, curative treatment for late stage AIDS would

have been excluded from coverage based on the futilitarian concept that such

treatment is " ineffective. " When the gay community learned of the plan, it

organized and successfully maintained coverage for AIDS treatment. At the same

time, lacking an organized political constituency, some late-stage cancer

patients were excluded from coverage.

 

Considering the philosophy behind Futile Care Theory, it should come as no

surprise that the Oregon Department of Health recently declared assisted suicide

to be a form of " comfort care, " a covered treatment in Oregon’s Medicaid

rationing scheme. Thus does the ultimate death agenda which underlies futile

care theory come full circle. Imagine the scenario: a poor Medicaid patient

wants treatment not covered by the rationing plan. Denied desired care by the

new bureaucratic rules, in desperation she turns to assisted suicide. No one

ever has to see this as a killing. The woman’s early death is seen by the

powers-that-be as best for her, her family, and the budgetary needs of Oregon’s

Medicaid plan.

 

CCMD’s Dr. Murphy sees the coming battle over Futile Care as the key to the

future ethics of American medicine. He is right. The 92 year-old woman mentioned

at the top of this story who was initially denied antibiotics was eventually

able to secure treatment that saved her life. But if Futile Care Theory is

imposed on the American people through formally enacted guidelines and

enforceable public policies, similar cases will not have equally happy endings.

For if Futile Care Theory becomes the law of the land, health care

decision-making will have little to do with personal autonomy—unless the choice

is the politically correct one of choosing to die—but will become primarily a

matter of " doctor knows best, " with available choices limited by the dictates of

the collective will. No problem for the young, healthy, and productive, but

devastating for everyone else.

 

There is a term that aptly describes the health care system that futilitarians

seek to impose upon us: medical fascism. Its implementation may be closer than

you think.

 

Wesley J. Smith is an attorney for the International Anti-Euthanasia Task Force

and author of Forced Exit: The Slippery Slope from Assisted Suicide to Legalized

Murder.

 

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