Limits on Care at the End of Life

Until recently in this country, we have not been concerned about the issue of physician-imposed limits on patient care. Discussion has focused instead on the right of the patient to refuse care. Over the past few decades, we have witnessed a steady evolution of society's attitude toward the care of the terminally ill, an evolution that has supported patients' negative freedom. The limits of patient autonomy, the role of the family's substituted judgment, and the prerogatives of physicians have been openly debated. Courts have endorsed the notion that patients' decisions to limit care should be respected. These cases have largely been based on respect for the patient's autonomy, and are consistent with decisions on informed consent.

The details of this evolution are revealing. In the decision In re Quinlan, the New Jersey Supreme Court became the first court to allow withdrawal of lift support from an incompetent person.30 Since Karen Quinlan's own views on continued life support were somewhat unclear, the court recognized that a substituted judgment could be made on her behalf by a family member, in this case her father.31 Many other courts have followed the Quinlan precedent with regard to withdrawal of a variety of medical therapies.32 Most recently this right of refusal has been applied to such "ordinary" supports as feeding tubes.33 Other courts have reiterated that competent patients should be able to refuse therapy, and that an incompetent patient's previously stated wishes involving life support should be honored.34

These court decisions have tended to reassure physicians that the law countenances withdrawal of care, especially after the Massachusetts

Supreme Judicial Court, and several legal academics, clarified the intention of that court's ruling in Saikewicz.35 Again, it is quite clear that the courts in most of these cases were basing their decisions on the patient's autonomy, not on the prerogatives of the medical profession. In other words, concerns about the negative freedom of the patient not reiterations of the positive freedom of the physicians, led the law as integrity to endorse patient desires for limits on care. Thus the liberal state permits self-assumed limits on care for individual citizens. Physicians were able to accept these rulings because, in theory, they were committed above all to the patient.

There are, however, strains within this apparent consensus. Although the judges' opinions in court cases clearly indicated that it was the patient's liberty, not the physician's paternalism, which drove the decisions, it appears that physicians may have misinterpreted the message. The clear intention of the courts notwithstanding, physicians have begun discussing guidelines for terminating such care as ventilators36 and renal dialysis without emphasizing the importance of the patient's wishes.37 There are now articles that suggest that physicians need not consult patients about treatment for "no code" status if the physician deems such therapy to lack medical benefit.38 Some physicians argue that doctors should consider not "offering" patients cardiopulmonary resuscitation and, by implication, other life support measures when such therapy seems to them inappropriate for the patient.39

Physicians have also begun to report on their clinical experience with decisions to overrule patients', or their families', wishes for continued "full care." One group of doctors acknowledge that they have issued unofficial orders not to revive dying patients that violate the patients' and families' express wishes.40 I, myself, have reviewed cases in which a hospital ethics committee limited patients care against their, or their families, stated preference.41

The reasoning that underlies decisions by doctors to overrule patients or their families is explicitly ethical and emphasizes the principle of beneficence.42 Physicians believe, quite reasonably, that patients have no right to demand medical care that is without benefit.43 They also argue that care should be limited when it is futile.44 Thus they argue that it is in the patient's best interest to limit care at times, no matter what the patient, or the incompetent patient's family, says. As in informed consent, this line of reasoning demonstrates how beneficence theories of medical ethics can lead to great disrespect for patient

autonomy. The "physician knows best" attitude leads to replacement of patient negative freedom with doctor positive freedom.

Courts have now begun to reiterate that decisions about limitations on care are a matter of patient autonomy. As such, they are nontransferable. Thus a New York court has recently required previously made explicit statements reflecting a firm commitment of the patient him- or herself before allowing termination of life support for an incompetent individual.45 More importantly, the Supreme Court has recently ruled that the federal constitutional privacy rights cannot be used to justify withdrawal of support for a patient in a persistent vegetative state unless the patient's wishes were clearly stated.46

These decisions should provide some warning to physicians that limits on care for individual patients are a matter of individual autonomy. Rationing based on an individual physician's judgment that further care has little likelihood of increasing the patient's potential for survival, or of increasing the number of "quality" days the patient will live, is not explicitly linked to a concern for scarce medical resources, and should not be allowed. The law will step forward to restrict physician's prerogative through decisions like Cruzan. It is hoped that such decisions will also prompt more health professionals to discuss with patients their desires for "heroic measures" and crystallize these desires in "living wills."47

Nonetheless, the concept of limits on care for the elderly should be a part of society's concern about scarce resources.48 Over the past decade, several studies have shown that persons who are dying tend to consume a disproportionate amount of scarce medical resources.49 For instance, one study showed that 5.9 percent of Medicare beneficiaries who died in 1978 required nearly 28 percent of all Medicare reimbursement for that year. Moreover, many individuals who receive intensive care in hospitals, that is very expensive care, die soon after their discharge from the hospital.50 Recent research suggests that increased hospital use does not, in aggregate, lead to greater life expectancy.51 Thus the provision of hospital care for the elderly is a likely target for those who would try to decrease the overall costs of medical care by rationing resources.

As we discussed, this sort of reallocation is strictly within the bounds of the liberal state. Limiting care for the elderly will create more funds, presumably, for health care for others. Moreover, we might be able to provide better preventive and primary care to a larger group of individuals by limiting intensive care for elderly patients.

Thus limits on care demonstrate equal concern and respect for all individuals in that the resources now used disproportionately by some, the elderly, are redistributed to others.

But, this kind of reallocation raises a serious question: should the individual physician be able to make this kind of decision? Do we as a society want physicians making controversial decisions about terminating care? Should we continue to allow the erosion of the once widely accepted notion that a competent patient or the family of an incompetent patient determines the nature of limits on care?52

I believe that the answer must be no, for at least two reasons. First, we must recognize that the doctor-patient relationship does not occur in a world ruled only by ideals of justice and ethics. Rather, it operates in a much more emotionally charged environment. The intellectual and physical weaknesses of human beings, both doctor and patient, are constant companions of medical care.53

Second, as we discussed in chapter 5, doctors have not in general demonstrated their willingness to communicate openly with patients. This is especially true in the cases of patients who are critically ill. Several studies have demonstrated how little discussion there is with patients about "life and death" issues.54 Perhaps some of the most striking findings of my review of an ethics committee's experience were those situations in which the treating physicians had assumed that their patients were incompetent, while the ethics committee found the patients rational and reasonable in their requests for "full care."

All of this indicates that the isolated doctor-patient relationship lacks a basis for decisions about limiting care without patient or family consent. Physicians can too easily fail to understand the irrational impulses that contribute to their actions; they assume they are certain even when they cannot be. Therefore it seems a very bad idea to grant physicians greater authority in decisions to limit care by leaving allocation decisions totally within the doctor-patient relationship.

If not the physician alone, then who else should decide when scarce resources demand cutbacks in care? Rationing of care for the elderly involves issues that all concerned about medical ethics, indeed all citizens of the liberal state, must now address. It seems to me that physician decisions must be made within guidelines developed by a broad social consensus.

Given the gravity of the decisions to limit care, and the importance of this issue to all members of society, it follows that there should be general social participation in the development of a rationing program.

The effort to limit care for the elderly will generate controversies of great importance to the liberal state, because that effort strikes at the heart of liberalism—the trade-offs between negative freedom and equal concern and respect for each citizen. Limits on care will mean that some individuals will be denied care, even care they can afford (and might have saved for) so that others can receive more care in the future. Developing guidelines acceptable to the democratic majority, will require broad input, especially from patients and their advocates. The wider the participation, the more readily acceptable will be the results. Therefore, efforts will have to be made to submit such issues to the public at large, or at least to their representatives in legislatures. This process will be critical to the just resolution of rationing.

The development of just guidelines is not an easy task. While an across-the-board prohibition on intensive care for those over the age of eighty, such as that proposed by Daniel Callahan, makes great sense in terms of being simple and just, this alternative may not be efficient.55 For example, some eighty year olds are still very vigorous, and some people under the age of sixty-five may be quite debilitated. This means that intensive care for debilitated individuals under the age of sixty-five will save fewer days of enjoyable life than would intensive care for abler patients over the age of seventy-five (that is, assuming we can define what is enjoyable about one's life). Thus the physically vigorous elderly person may be someone we want to support with life-extending treatment whereas we would not do so for many younger but debilitated people. All these issues must be studied and debated.56

In a book concerned primarily with medical ethics, we must ask again, what should the role of physicians be in the debate on the rationing of care? On the one hand, I have argued that it is foolish to think that physicians will not play a role in cost cutting. Specifically, I have asserted that prospective payment mechanisms will influence physicians' decision making and that it is important for them to be aware of such influences. On the other hand, I have said it is not a good idea to allow physicians to make ad hoc decisions about limits on care for elderly patients, for this gives them far too much authority. These seemingly contradictory arguments are really two sides of the same coin. In issues of rationing—whether we are talking about prospective payment plans or the limitation of care for the elderly—there should be guidelines for the physician to follow.

For the practice of medicine in a prospective payment program,

those guidelines are fairly clear-cut. The physician must provide good quality care, despite incentives for discharging patients earlier than might be done under other reimbursement arrangements. To fail to meet the standard of care would be to violate ethical imperatives as well as to open the physician to charges of malpractice.

In the case of the physician's decision to limit care, however, the guidelines are far from clear. A physician using her clinical judgment is on familiar ground when faced with decisions on standard of care for illnesses. She is much less prepared when trying to decide about futility of care, even less so when trying to integrate considerations of quality of life and costs of therapy. Therefore, physicians' prerogatives to ration care (in the form of decisions to limit care for the elderly against their wishes) should be restricted. Just doctors need the support of social consensus before becoming involved in this form of rationing.

While we want to curtail physician decision making in this area, physicians should still be involved in the policy debate. Indeed, physician viewpoints will be particularly valuable in the process of developing a consensus. More to the point, physicians have an ethical duty, as just doctors, to help society develop fair guidelines. Physicians are committed to protecting patients and to maintaining the status of health care as a cooperative sphere within the liberal state. In addition, however, physicians as just doctors realize that there are social limits on the expenditure of funds for health care. Allocation decisions will have an impact on both individual patients and the health care industry. Physicians must therefore address such decisions and help society reach the most just allocation. As L. Churchill suggests, then, physicians should play an active role in the "macro" allocation decisions, and then honestly apply the guidelines developed to particular decisions on rationing.57 They should also invite the oversight of non-physicians, Perhaps using ethics committees to review a sample of the bedside allocation decisions. Openness and honesty, are critical. Just physicians must be willing to separate their role in the larger debate on rationing from the decisions they make for each patient.

What form will the larger debate take? This is very difficult to say with regard to rationing based on age. Discussions in this area have only begun, and there are clearly many problems to be resolved.58 Rather than try to specify the nature of allocation decisions based on age, it is perhaps easier to move to an area in which we have had more explicit and detailed discussions of rationing. That area is organ trans-

plantation. A brief review of the history of organ transplantation in this country can help define the role of just doctoring in the development of rationing guidelines.