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Futile Care Theory: Assisted Suicide’s First Cousin

Original Article

When Samuel Golubchuk’s family told doctors at Winnipeg’s Grace General Hospital that they wanted his life support maintained, they were stunned to hear that his doctors intended to remove his life support—even though doing so would violate their patient’s religious beliefs. When the family took thehospital to court, Golubchuk’s doctors claimed that maintaining his life would violate their values by merely dragging out the 84-year-old’s death.1

When the court issued a temporary restraining order against removing treatment pending trial, hospital physicians were furious. Indeed, three physicians resigned from the hospital staff rather than comply with the family’s wishes regarding his care.2 The case only ended months later when Mr. Golubchuk died.3 The court never finally ruled who had the ultimate authority — the family or the hospital — to order the removal of life support.

Understand what was being argued here. The ultimate purpose of medicine used to be saving life (at least when that is what the patient or his family want); now many doctors and bioethicists argue that extending some patients’ lives is unethical, a form of harm in which medical professionals are entitled to refuse to participate.

The Hippocratic Oath sure isn’t what it used to be. Welcome to the surreal world of “medical futility,” also known as futile-care theory, in which bioethicists assert that doctors and/or bioethicists have the right to refuse to maintain life if they — not the patient or family — believe that the ill or injured person’s life is not worth saving. Indeed, futile-care theorists believe that hospitals should be permitted to unilaterally refuse wanted — emphasize wanted — life-sustaining treatment based on the institutional view about the“quality” of the patient’s life.

At this point, readers may be asking: Why should patients have the right to demand treatments that will not work? They shouldn’t. No one expects physicians to render care that is “physiologically futile,” that is, care that will not provide the benefit sought by the patient or surrogate decision maker. Indeed, if a patient or family requests a medical intervention that would provide no physiological benefit, the doctor should refuse as a matter of professional ethics. (To use a ridiculous example to illustrate the point: If a patient afflicted with a simple ear infection demanded an appendectomy to cure it, the doctor should refuse to perform the surgery because it would absolutely have no effect on the earache.)

But physiological futility is not the kind of “futile” or “inappropriate” treatment to which medical futility refers. Rather, futile-care theorists argue that doctors or bioethics committees should be able to refuse treatments based on “qualitative” decision making, meaning that the treatment isn’t stopped because it doesn’t or won’t work, but because it does or probably will. In this sense, it isn’t the treatment that is really being declared futile, but the patient. Or to put it more kindly, futile-care theory is about value—rather than medical—judgments.

Needless to say, medical futility turns the traditional ethics of medicine on its head. Under this view, sustaining life is no longer considered a necessary good for the patient — even if the patient wants to live. What matters instead are the prospects for improvement, the potential for a cure, and — bluntly stated — the values of the medical team or institutional bioethics-committee members trumping those of patients and/or their families if their “choice” is to go on living.

Non-Voluntary Euthanasia and Futile-Care Theory

Two Sides of the Same Coin

What is ironic is that futile-care theory is being pushed at the same time as assisted suicide. At first blush it would seem these two bioethics agendas are mutually inconsistent. After all, assisted-suicide ideology is undergirded by a fervent embrace of radical individualism, a belief system that considers body ownership to be sacrosanct, meaning that, when we want life to end assisted suicide becomes the “ultimate civil right.”4 Former Washington Democratic governor Booth Gardner, who is fronting—and abundantly financing—an initiative (I-1000) to legalize assisted suicide in Washington State, expressed this idea quite succinctly: “My life; my death; my control.”5

But “choice” is not the only value that propels the culture of death. A second—and more potent and dangerous—ideological belief holds that killing (intentionally ending life) is a valid answer to the problem of human suffering. Once this meme is accepted, it even subsumes “choice.” Thus, in the Netherlands, non-voluntary euthanasia is rampant, with hundreds, perhaps thousands, of patients killed by doctors each year even though they have never asked for euthanasia (the practice is known as “termination without request or consent”).6 Moreover, Dutch doctors commit eugenic infanticide—sometimes even without parental consent—to the point that two studies in the medical journal The Lancet have found that 8 percent of all infants who die in the Netherlands are euthanized by doctors—about 80 per year.7

The same rationale (that there is such a thing as a life not worthy to be lived) that is used to justify Dutch non-voluntary euthanasia and infanticide also drives support for futile-care theory. Consider the “Groningen Protocol,” published by Groningen University Medical Center as the guidelines under which hospital doctors carried out the infanticides of 15 to 20 disabled newborns.8 The Protocol was published in the New England Journal of Medicine—which thereby gave the venerable journal’s imprimatur to infanticide. It posited three categories of killable infants: those “with no chance of survival,” those with a “poor prognosis who are dependent on intensive care,” and babies “with a hopeless prognosis,” including those “not depending on intensive medical treatment but for whom a very poor quality of life . . . is predicted.”9

Predictably, mainstream bioethicists have been generally—albeit not universally—supportive of the Protocol. For example, an article published in one of the world’s most prestigious bioethics journals, the Hastings Center Report, stated: “Critics charge that the protocol does not successfully identify which babies will die. But it is precisely those babies who could continue to live, but whose lives would be wretched in the extreme, who stand in most need of the interventions for which the protocol offers guidance.”10

And that quote brings us to the nub of the issue: Infanticide, non-voluntary euthanasia, and futile-care theory all create a disposable caste of patients upon whom a duty to die can be imposed. To see this more clearly, try this thought experiment. Look again at the quote, only substitute the word “patients” for the word “babies”; the phrase “removal of wanted life-sustaining treatment” for the word “interventions” (a euphemism for killing); and the words “futile-care theory” for “the protocol.” Voilà, we now have a vivid description of the ethical rationalization usually given for imposing futile-care treatment terminations on unwilling patients and their families: “It is precisely those patients who could continue to live, but whose lives would be wretched in the extreme, who stand in most need of the removal of life-sustaining treatment for which futile-care theory offers guidance.”

And now we can see clearly the same discriminatory mindset that undergirds both the Groningen Protocol and futile-care theory: the belief that here is such a thing as a life of such low quality that it is not worthy to be lived.

Follow the Money

Now add in the final source of the intellectual wind behind medical futility’s sails: the desire to conserve scarce medical resources. Case in point: As early as 1997, when medical-futility advocacy was still in its infancy, the American Thoracic Society urged hospitals to ration access to intensive care using futility-based institutional protocols, arguing that “marginally beneficial ICU care can be restricted on the basis of high cost relative to benefit.”11

That same year, the Consensus Statement of the Society of Critical Care Medicine’s Ethics Committee regarding futile care, among other issues, specifically addressed the role money plays in the futility debate. The statement read, in part:

It will not be possible for communities or institutions to set limits on treatments, unless there is legal recognition that communities have a legitimate need to allocate resources. Thus, when communities develop such policies in consultation with interested parties, the standards established in these policies should be recognized by the courts. Organizations controlling payment have a profound influence on treatment decisions and should share moral and legal accountability for the outcome of those decisions. . . . Given finite resources, institutional providers should define what constitutes inadvisable treatment and determine when such treatment will not be sustained.12

In other words, futility is fundamentally about dollars and cents. That being so, it represents a (perhaps) well-intentioned subterfuge to hide the reality of what the movement really represents: the beginning of the drive to impose health-care rationing founded upon the discriminatory values inherent in the quality-of-life ethic.

When confronted with this charge, advocates generally fall back on the obvious verity that society cannot afford to provideevery patient with every medical intervention they might ever want. Dr. Stephen Miles, an early proponent of futile-care theory, put it to me this way in an interview several years ago: “If you come to me and describe for me a tension headache and say, ‘I want a CT scan to rule out the possibility of a brain tumor,’ should the patient have the right to demand the test? Because I can’t state with one hundred percent certainty that you do not have a brain tumor. But I can make a probabilistic judgment based on the pattern of symptoms you have and how they have evolved that a CT scan is not warranted [because it is highly unlikely that the headaches are symptoms of a tumor].”13

This argument is worth exploring. It is true that physicians have a professional responsibility to use medical resources judiciously and efficiently—but not at the expense of their patients. No such harm is in factdone to patients when physicians refuse expensive tests or treatments that their professional training and expertise indicate are not warranted from a medical standpoint. Similarly, health-insurance companies do not act wrongfully if they deny coverage for procedures that are not reasonably necessary to treat the patient’s condition based on medical criteria. Ditto hospitals refusing patients access to intensive care when a less expensive level of support will do the job.

But the denial of “futile” treatment is different: It refuses care that is medically warranted—care that is unquestionably necessary to maintain the patient’s existence. Or to put it another way, futile-care theory would permit the refusal of wanted life-sustaining treatment precisely because it keeps the patient alive, and is thus the reverse of the examples listed above. At this point, to prevent discriminatory “quality of life” judgments from being imposed on helpless patients, the economics of medicine must take a back seat to protecting lives.

It’s Already Here

Futile-care theory has already moved beyond the purely theoretical into law and early, if sporadic, application. Texas, for example, has a statute that explicitly permits futile-care impositions to be forced on patients and their families via hospital-ethics-committee quasi-judicial decision making.14

Here’s how the system works: If a patient or family wishes to continue life-sustaining treatment that a doctor does not wish to provide, either the doctor or the relatives can call a meeting of the hospital ethics committee. The committee will hear from the physician, the family, and perhaps nurses or other care givers. At that point a decision is made. If the committee agrees with the patient or family, the treatment continues. But if it agrees that the treatment is futile or inappropriate, a very important clock begins ticking. From then, the family has a mere ten days to find another institution willing to provide the care. If they fail, the treatment can be withdrawn over family objections after the ten-day period is up.

The family of Andrea Clarke felt the full weight of the Texas law when the bioethics committee at St. Luke’s Episcopal Hospital in Houston decreed that she should die. Indeed, after a closed-door hearing, it ordered all further medical efforts to sustain her life while at St. Luke’s to cease. As a consequence, Clarke’s life support—required because of a heart condition and bleeding on the brain—was ordered removed unilaterally, even though she was not unconscious and her family wanted treatment to continue.

Clarke’s family refused to acquiesce to what they considered to be medical tyranny. They went to the media and the story became widely discussed in Texas and throughout the country.15 They sued and began a long effort to either reverse the futile-care decision or find another institution to care for Andrea. As if to illustrate how desperate the Clarke family became, they even agreed to a St. Luke’s plan to move Andrea to a facility in Illinois that would provide the care.16 Appearing to react to a public-relation’s backlash, St. Luke’s agreed to continue Clarke’s care, and she eventually died in the hospital without being forced off of treatment.17

Some hospitals aren’t even waiting for explicit legal authority in trying to impose futile-care theory on their most vulnerable patients. An early case in this regard was “Baby Ryan” in Spokane, Washington. Baby Ryan Nguyen was born in Spokane’s Sacred Heart Hospital on October 27, 1994. He was very premature, at just 23 weeks of gestation. His kidneys were not working well so doctors put him on dialysis. But when the doctors determined that Ryan was not a good candidate for kidney transplantation, they decreed that continuing his treatment was futile.

Facing the prospect of their child being taken off life support, Ryan’s parents retained an attorney, who quickly obtained a temporary court order compelling Ryan’s treatment to continue. Unhappy that their will had been thwarted, hospital administrators reported Ryan’s parents to child protective services, accusing the Nguyens of “physical abuse” and “physical neglect”18 for obtaining the injunction. When that tactic didn’t fly, administrators and doctors fought the parents in court. Despite the fact that there “are few statements made in medicine based on flat certainty,” only probabilities,19 Ryan’s physicians swore under oath that “Ryan’s condition is universally fatal,” that the infant had “no chance” for survival, and that treatment could not “serve as a bridge to future care.” Based on these contentions, Ryan’s doctors urged the judge to permit them to cease his continued treatment as futile and a violation of their integrity, values, and ethics.20

The court never decided who had ultimate say over Ryan’s care—his parents or medical professionals—because his treatment was transferred to Emanuel Children’s Hospital in Portland, Oregon, under the care of a different doctor who did not view the child as a futile patient. The new doctor, not the original physicians, had it right: Ryan was soon weaned off dialysis and survived for more than four years—a time in which he was a generally happy, if sickly, child who liked to give “high fives.” Had his original doctors successfully imposed their futile-care philosophy on their patient and hisparents, Ryan would have died before he had a chance to live.

In another futility case, this time in England, the courts sided with doctors over the parents of David Glass, a 12-year-old developmentally disabled boy, who was also blind and quadriplegic. David’s parents cherished their boy as an integral part of the family and were stunned when, in October 1998, after David was admitted to St. Mary’s Hospital in Portsmouth with a respiratory failure, his doctors unilaterally withdrew curative treatment and injected him with a palliative agent, telling the parents their son was dying and that nature should be allowed to take its course.

The Glass family refused to stand by and watch their son die because doctors did not perceive his life to be worth living. They instituted resuscitation on their own and saved David’s life. One doctor later testified that he objected strenuously to the parents’ actions because their action “had prevented him from dying.”21 Clearly, if family members could save David without the expertise of formal treatment, the refusal of care was more a matter of physician bias than the “compassionate” allowing of nature to takea sad but inevitable course.

David’s parents sued to prevent such an awful abandonment from being repeated. Unexpectedly, they lost. The trial and appeals courts all ruled that doctors, not parents, have the ultimate say over David’s life and death. This ruling is in line with a recent ethics opinion published by the British Medical Association, which established an ethical protocol granting doctors the ultimate power to determine when and if treatment will be terminated. These decisions were eventually overturned by the European Court of Human Rights, in a decision ruling that the doctors were wrong for forcing treatment on David—e.g., the palliative care—but did not decide that they had violated David’s right to life.22

Creating a Duty to Die

Futile-care theory is ad hoc health-care rationing that would pave the way for explicit health-care rationing, perhaps based on age, quality-of-life values, or other discriminatory approaches. Indeed, serious proposals for explicit health-care rationing have already been made by some of America’s most prominent bioethicists, such as Daniel Callahan.23 Meanwhile, in the United Kingdom, rationing is already a reality for people who rely on the National Health Service for their medical care.

But even rationing may not be the end game of an agenda fronted by assisted-suicide and futile-care advocacy. The real goal may well be the idea of a “duty to die,” proposed by some in bioethics to ease the financial and emotional “burdens” of caring for elderly, disabled, and chronically ill and dying people.

The premier advocate for the “duty to die” is an East Tennessee University philosophy professor, John Hardwig. Hardwig takes the ongoing deconstruction of the Hippocratic tradition to a new level, asserting “it is sometimes the moral thing to do for a physician to sacrifice the interests ofher patient to those of non-patients—specifically to those of the other members of the family.”24 According to Hardwig, there are “many cases [when] . . . the interest of family members often ought to overridethose of the patient. . . . Only when the lives of family members will not be importantly affected can one rightly make exclusively or even predominantly self-regarding decisions.”25 (Emphasis within the text.)

Hardwig’s approach is explicitly utilitarian. He worries that some members of families will decide to sacrifice their own interests to help another needy member, thereby reducing overall happiness. He writes:

If a newborn has been saved by aggressive treatment but is severely handicapped, the parents may simply not be emotionally capable of abandoning the child to institutional care. A man whose wife is suffering from multiple sclerosis may simply not be willing or able to go on with his own life until he sees her through to the end. A woman whose husband is being maintained in a vegetative state may not feel free to marry or even to see other men again, regardless of what some revised law might say about her marital status.26

Hardwig says it hurts society when people “lose their concern” for loved ones “as soon as continuing to care [begins] to diminish the quality of their own lives.” To prevent this, Hardwig urges that doctors refuse treatment when it would harm the interests of the family. “Physicians would no longer be agents of their patients and would not strive to be advocates for their patients’ interests,” Hardwig writes. “Instead, the physician would aspire tobe an impartial adviser who would stand knowledgeably but sympathetically by . . . and discern the treatment that would best harmonize or balance the interests of all concerned.”27

A Hardwig essay, featured on the cover of the Hastings Center Report in 1997, was entitled, aptly, “Is There a Duty to Die?” Not surprisingly, Hardwig concluded that there probably is, if continuing to live will constitute a burden upon one’s family. Hardwig proposes specific circumstances when the duty might arise:

A duty to die is more likely when continuing to live will impose significant burdens—emotional burdens, extensive caregiving, destruction of life plans, and yes, financial hardship—on your family and loved ones. This is the fundamental insight underlying a duty to die.
A duty to die becomes greater as you grow older. . . . To have reached the age of say, seventy-five or eighty without being ready to die is itself a moral failing, the sign of a life out of touch with life’s basic realities.28

It is important to point out that Hardwig is not a fringe thinker. The articles quoted above appeared in the Hastings Center Report, one of the foremost bioethics journals in the world.

So how do we resolve the apparent paradox between the “choice” ethic that drives assisted-suicide advocacy and the interference with patient autonomy reflected by futile-care theory? It is simple, really. The real agenda isn’t about patient choice. Rather, putting certain people out of their—and our collective—misery is the point. If “choice” gets us there, great. If not, other ways will be devised to impose the agenda, first through futile-care theory—which is just beginning now—and later, perhaps, with the imposition of health-care rationing and the explicit duty to die. (For those who may be skeptical: In a story clearly relevant to this discussion, Oregon recently told two cancer patients that its Medicaid plan would not pay for life-extending chemotherapy, but would pay for their assisted suicides.)29

To be sure, we are not yet close to imposing the explicit duty to die. But unless we act now to head things off at the futile-care pass, we could well reach that point. The good news is that there remains time to prevent the threat that this way comes. But this means we cannot be passive. If a loved one is threatened with a futile-care imposition, we have to fight in the courts, if necessary, to protect their lives, rather than surrender—to doctors or faceless bioethics committees—the intimate decision about when to struggle on and when to let nature take its course. And by all means, as free men and women we must not surrender the creation of health-care public policies to the so-called “experts” whose values may be dramatically different from our own.


Notes

1. Bryn Weese, “Poll Backs Kin: Let Dad Live,” Toronto Sun, December 13, 2007.

2. Canadian Broadcasting Corporation News, “2 More Winnipeg Doctors Resign in Dispute over Elderly Man’s Treatment,” June 16, 2008.

3. Aldo Santin, “Golubchuk Dies While on Life Support,” Winnipeg Free Press, June 25, 2008.

4. See, for example, “The Future of the Right to Die Movement,” Speech by Derek Humphry delivered to 15th World Conference of the World Federation of Right to Die Societies, September 2004, published online at http://www.assistedsuicide.org/future_of_right-to-die_movement.html.

5. As quoted in Daniel Bergner, “Death in the Family,” New York Times Magazine, December 2, 2007.

6. See Wesley J. Smith, Forced Exit: Euthanasia, Assisted Suicide and the New Duty to Die (New York, Encounter Books, 2006), pp. 107-116.

7. Agnes van der Heide, et al., “Medical End-of-Life Decisions Made for Neonates and Infants in the Netherlands,” The Lancet, Vol. 350, pp. 251-55, July 26, 1997, Astrid M. Vrakiing, et al.,“Medical End-of-Life Decisions Made for Neonates and Infants in the Netherlands, 1995-2001,” The Lancet, Vol. 365, April 9, 2005.

8. “No Prosecution for Dutch Baby Euthanasia,” Reuters, January 22, 2005.

9. Eduard Verhagen and Peter J. J. Sauer, “The Groningen Protocol—Euthanasia in Severely Ill Newborns,” New England Journal of Medicine, Volume 352:959-962, March 10, 2005, Number 10.

10. Hilde Lindemann, Marian Verkerk, “Ending the Life of a Newborn: The Groningen Protocol,” Hastings Center Report, Volume 38, Number 1, January-February 2008, pp. 42-51, 43.

11. John M. Luce, “Making Decisions About Foregoing Life-sustaining Therapy,” American Journal of Respiratory and Critical Care Medicine, Vol. 156, 1997, p. 1717.

12. “Consensus Statement of the Society of Critical Care Medicine’s Ethics Committee Regarding Futile and Other Possible Inadvisable Treatments,” Critical Care Medicine, Vol. 25, No. 5, 1997, p. 890.

13. Steven Miles author interview, February 9, 1999.

14. Texas Health and Safety Code, Chapter 166.046.

15. See, for example, Wesley J. Smith, “Death by Ethics Committee,” National Review Online, April 27, 2006.

16. Todd Ackerman, “Woman Will Stay on Life Support/Family Agrees to St. Luke’s Offer of Chicago Transfer,” Houston Chronicle, April 28, 2006.

17. Todd Ackerman, “Family Vows to Fight Futile-Care Law/Woman Dies After Battle to Stay on Life Support,” Houston Chronicle, May 9, 2006.

18. Washington Department of Child Protective Services, Intake Summary Report for Referral, dated November 23, 1994.

19. Miles interview, Supra.

20. In re Ryan Nguyen, Case No. 94-06074-5. State of Washington Superior Court, Sacred Heart Medical Center Brief.

21. Dominic Lawson, “The Death of Medicine,” Sunday London Telegraph, April 25, 1999.

22. Chamber Judgment in the Case of Glass v. The United Kingdom, March 9, 2004, European Court of Human Rights, http://www.tinyurl.com/5ey63y.

23. Daniel Callahan, Setting Limits: Medical Goals in an Aging Society (Washington, D.C, Georgetown University Press, 1995).

24. John Hardwig, “What About the Family,” Hastings Center Report, March/April 1990, p. 5.

25. Id. pp. 5-6.

26. Id. p. 7.

27. Id. p. 8.

28. John Hardwig, “Is There a Duty to Die?” Hastings Center Report, March-April 1997, pp. 37-38.

29. Susan Donaldson James, “Death Drugs Cause Uproar in Oregon,” ABC News, August 6, 2008.