We reserve the right to refuse service: Most people have seen these signs at restaurants and retail shops. But now, metaphorically, some hospitals are hanging such notices over their entryways by promulgating "futile care" protocols that grant doctors the right to say no to wanted life-extending medical treatment to patients whose lives they consider lacking in sufficient quality to justify the cost of care.
Unnoticed by the mainstream press, a disturbing study published in the Fall 2000 issue of the Cambridge Quarterly of Health Care Ethics reveals how far the futile-care movement in reality, the opening salvo in a planned campaign among medical elites to impose health-care rationing upon us has already advanced. The authors reviewed futility policies currently in effect in 26 California hospitals. Of these, only one policy provided that "doctors should act to support the patient's life" when life-extending care is wanted. All but two of the hospital policies "defined circumstances in which treatments should be considered nonobligatory even if requested by the patient or patient representative." In other words, 24 of the 26 hospitals permit doctors to unilaterally deny wanted life-supporting care.
How is such medical abandonment justified? Advocates of futile-care theory cleverly shift the focus away from the physiological effect provided to the patient and toward whether the patient has the "potential for appreciating the benefit of the treatment." Thus, the Cambridge Quarterly reports that 12 of the 26 hospitals surveyed prohibit treating people diagnosed with permanent unconsciousness (other than comfort care) based on these patients' supposed inability to know they are being treated. Never mind that several medical studies demonstrate that this condition is often wrongly diagnosed (40 percent misdiagnosis according to one British report). And never mind that such patients sometimes awaken unexpectedly, as recent headlines attest.
What is most disturbing is that these policies, if enforced, would prevent profoundly brain-damaged and dementia patients from receiving tube-supplied food and water because such care is considered medical treatment. That means futile-care protocols that prohibit doctors from treating the unconscious doom these defenseless people to intentionally caused deaths by dehydration even if they had previously signed an advance medical directive stating that they would want their lives maintained.
This is all very ironic. It wasn't much more than 20 years ago that withdrawing tube-supplied food and water from a patient due to cognitive disability was virtually unthinkable in clinical medicine. Indeed, it would have been a crime in many jurisdictions. However, by the early 1990s, in the wake of the Nancy Cruzan case, virtually all states permitted families to decide to withdraw tube-supplied nutrition and hydration as a matter of the "right to die." Today, throughout the country, conscious and unconscious cognitively disabled people are intentionally dehydrated to death almost as a matter of medical routine when families consent.
The bioethical principle justifying the ending of profoundly brain-damaged people's lives by dehydration, until now, has been autonomy: Patients and their families should be able to make this difficult and "intimate" decision free from having the values of others imposed upon them. But proponents of futile care often the same bioethicists who argued for allowing families to refuse tube feeding are now telling us that doctors should be allowed to refuse tube feeding based on their personal values even if families want the care continued. This makes no logical sense unless the goal all along has actually been to make sure that profoundly brain-damaged people die. Seen in this light, the seeming paradox disappears. If "choice" gets the dying done, great. However, if the "wrong" decision is made, futile-care theory will be imposed. Either way, in the culture of death it is heads we win, tails you lose.
While brain-damaged patients receive most of the attention in discussions of futile-care theory, they are not the only ones being refused treatment. In the 26 futile-care policies reviewed by the Cambridge Quarterly, treatment of patients who have a permanent dependence on life support only available in the ICU is denied in eight, treatment for end-stage illnesses in six, and treatment for severe dementia patients in four. Some futile care policies don't even identify the maladies for which treatment will be refused but leave it to doctors to decide on a case-by-case basis.
But what happens if the patients or families object to the denial of care? Many futile-care policies establish review procedures under which hospital ethics committees, originally established as mediating bodies to help families and physicians negotiate the proper approaches in difficult cases, are given adjudicatory authority to determine whether patients receive treatment or have it terminated. This is the approach adopted in 1997 by the Alexian Brothers Hospital of San Jose (which has since been sold to Columbia HCA), those currently in effect in many Houston hospitals (as described in the Journal of the American Medical Association), and at the Mercy hospitals based in Philadelphia, whose futile-care policy was reproduced in the July-August 2000 edition of Health Progress, the official journal of the Catholic Health Association. Under each of these protocols, once the committee decrees that the desired treatment is "futile" or "inappropriate" the case is closed. Thereafter, the treatment can never be provided in the hospital even if the family or patient finds a doctor who wants to provide the care.
Once the committees have issued death decrees, patients have three options: acquiesce, find another hospital (a highly unlikely enterprise), or sue. As to litigation, stacking the legal deck in favor of doctors and hospitals is a primary purpose for crafting formal futile-care protocols. As the Cambridge Quarterly article points out, "physicians are likely to get better results" in court if they follow hospital bureaucratic dispute-resolution mechanisms prior to terminating care. Of course, this is little more than blatant bootstrapping: Like Napoleon crowning himself emperor, hospitals proclaim the right to refuse wanted treatment because they themselves said that they could. Unfortunately, considering that judges and juries are often loath to gainsay doctors, it is likely to be effective bootstrapping, leaving desperate patients and families literally nowhere to turn.
Even though lives are literally at stake, the media have generally ignored the futile-care issue, viewing it as too arcane to be of interest to the general public. As a result, most people are very feet. But forewarned is forearmed. Patients and families need to be prepared to fight for wanted care if they are to surmount the barriers that the purveyors of the new medicine are increasingly erecting between defenseless patients and wanted life-sustaining treatment. They may even want to have a lawyer on call. (Yes, it really is coming to that.) At the very least, patients should obtain assurances from their physicians that their own medical decision making will be respected and that "Doctor Knows Best" futile-care protocols will never be imposed upon them.