Most patients' decisions about life-sustaining therapy involve the use of societal resources and thus have conse- quences for many other people. How a n d to what extent should the decisionmaking process take this into account?
Life-sustaining therapies can be very expensive. Even when a therapy itself is not expensive (such a s antibiotic therapy for a n infection or temporary intravenous feeding), the total expense of maintaining a patient who would not survive without the therapy can be substantial. Very few patients pay directly for heaith care. Instead, costs are routinely spread over large groups cf peopie through public a n d private mechanisms, including private health insurance, government financing programs such a s Medicare and Medicaid, and the
96 Foregoing Life-Sustaining Treatment: Chapter 3 provision of free care by governmental and charitable institu- t i o n s .9
The equity issues raised by public and private cost- spreading often seem to differ. A person with private insurance purchased a contract to be reimbursed for the costs of care if the need arises. Since premiums are based on probable use (plus profits and administrative costs), at least for the group of insured persons as a whole, a policyholder can be said to bear the expected cost through payment of premiums. Public programs, however, are supported by taxes that are unrelated to each person's probable use. In fact, these programs are usually explicitly redistributive (wealthier citizens contribute more than the poor, who are often the major beneficiaries).
Thus, in public programs it is clearer that others have a reason to be concerned about an individual patient's decision.
In both public payment programs and private insurance, however, an individual's decision about the use of care does have significant effects on the costs borne-: by others. The resultant potential for conflict of interests could be avoided if people were made to bear all costs directly. But people buy health insurance and support government health care programs partly because they fear that some day they will need clearly beneficial care and be unable to afford it-and because their hearts go out to others who find themselves in that position.
Making everyone bear the cost directly is unacceptable because it would deprive people of highly valued personal security and because people do not want a society in which individuals die or suffer substantial harm because they cannot afford necessary health care.
On the other hand, allowing decisions about life-sustaining care to be made with total disregard for the costs they impose on others has equally serious implications. Enormous expendi- tures may be made for very limited benefits, such as sustaining a painful and burdened life for an individual who has little or no capacity to enjoy it. When medical resources are used without concern for cost, the pattern of expenditures that results does not accurately reflect societal values because the pursuit of other goals remains constrained by costs.
Are there ethically acceptable alternatives to these ex- tremes? The concept of access to an adequate level of health care without excessive burdens set forth in the Commission's President's Commission for the Study of Ethical Problems in Medi- cine and Biomedical and Behavioral Research, SECURING ACCESS TO
HEALTH CARE, U.S. Government Printing Office, Washington (1983) at 90-108.
Constraints on a Patient's Decision 97 report on equity in access to health care provides a framework for responsibly resolving this difficult question.10 The Commis- sion held it appropriate to take both the significance of the care to the individual and its cost into account in deciding what constitutes adequate care and what burdens are excessive.
Society is not obligated to provide every intervention that the patient or provider believe might be beneficial.
Undeniably, the role that health care plays in sustaining life is very important, but the fact that a therapy is life- sustaining does not automatically create a n obligation to provide it. Rather, the therapy must offer benefits proportion- ate to the costs-financial and otherwisen--and the benefit provided must be comparable to that provided other patients in similar circumstances. For example, care for chronic conditions that interfere with the enjoyment of life (for example, arthritis) might be given greater importance than care that merely sustains a very limited existence (such a s artificial support of major organ systems for patients who are already bedridden a n d in pain).
Though it is acceptable in principle-and probably un- avoidable in practice-to consider cost in deciding about health care, explicitly restricting treatment decisions on finan- cial grounds poses significant dangers. Because people vary greatly in the value they attach to particular forms of life- extension, uniform rules based on objective measures of disease would create unacceptable consequences in some cases. For example, people differ in their attitudes about life on a respirator- some treasure each additional minute of life, whereas others find the treatment intolerable. And individual views change with time and circumstances; a patient may want very vigorous treatment until a family member who lives far a w a y arrives or a grandchild is born, while finding the same treatment unwarranted thereafter.12
10 Id. at 11-47. See also Testimonies of Norman Daniels and David Gautier, transcript of 13th meeting of the President's Commission (Oct.
22,1981) at 27-30, 35-37.
11The Catholic Church, for example, explicitly includes expense a s part of the assessment of whether a treatment is "disproportionate"
and thus not obligatory. Sacred Congregation for the Doctrine of the Faith, Declaration on Euthanasia, Vatican City (1980), reprinted in Appendix C, pp. 300-07 infra.
12 Private financial arrangements might reasonably encourage consid- eration of cost while allowing for individual values. For example, the provision of contracts (by insurance companies or other prepayment arrangements) that have different kinds of exclusions and limits might be one way of letting people make their own trade-offs between lower premiums, better coverage of conditions that are not life-threatening, and coverage of certain life-sustaining therapies. In advance, how- ever, it is difficult for people to make such trade-offs reasonably.
Decisions about such contracts are often uninformed or severely
98 Foregoing Life-Sustaining Treatment: Chapter 3 Beyond the unfairness of inappropriate application of the rules, there is a danger that rules that denied access to life- prolonging care would be seen to pass a value judgment about the patients as individuals and about their social worth. This is a particular problem in public programs for the poor and the handicapped; if the measures to sustain life under programs like Medicare and Medicaid are much more severely con- strained than those available to citizens generally, perceptions of unjustified discrimination and a "devaluation" of the lives of those affected might arise.
Finally, the judgment and cooperation of physicians are crucial for the functioning of a system in which such con- straints are imposed. But physicians have Yew incentives to adopt any role other than that of strong advocates on behalf of each patient. Both their professional ethos and the legal constraints within which they work provide powerful disincen- tives for a role a s allocator of resources. Thus cost constraints that are externally imposed-rather than arising from the profession's ongoing reevaluation of the appropriateness of certain attitudes and practices-are more likely to induce circumvention than compliance on the part of physicians.
There are few instances in which there is a strong societal consensus that cost is so high that care should not be given, even when patients greatly desire it. In many societies, these issues must be faced head-on. Hard choices must be made about the level of life-sustaining care to provide, given the very limited resources available in those societies. In this country, however, discussions of the need to control health care costs--which are occurring with increasing frequency-often are stymied because they first turn to examples involving life- sustaining treatment in which the care does provide significant benefit to the patient but is very costly. The suggestion seems to be that any serious attempt at cost-containment must begin with restrictions on this sort of care. Actually, this would seem to be a poor place to begin. The limitations on access to life- sustaining care that are acceptable in other societies would constrained by a person's financial or employment situation or by the limited range of alternatives offered. The difficulties are even more severe in the case of public programs in which there is even greater tension between the need for similar treatment of similar cases, for the sake of fairness, and the need to allow for individual variations to reflect differing deeply held values.
Constraints on a Patient's Decision 99 probably b e found unacceptable in this country. The United States can reasonably afford to include many forms of labor-- intensive a n d high-technology life-support in its definition of adequate care.
In addition, a myriad of "small-ticket" tests a n d treat- ments probably account for more expenditures with dispropor- tionately small payoffs than more dramatic forms of treatment do.13 If cost-control incentives could be increased throughout the existing health care system, a substantial amount of care could be eliminated without substantial consequences for health or life. Reports by the Food and Drug Administration suggest, for example, that about one-third of the 75 million chest X-rays done in 1980 (at a cost of nearly $2 billion) were unnecessary in that before they were taken it was clear that they were unlikely either to detect disease or affect its outcome.14 Similarly, although cardiac pacemakers can make the difference between life and death, a recent study suggests that their use in cases in which they are not medically indicated may be adding a s much a s $280 million annually to the nation's health care expenditures.15 At least 25% of
"respiratory care" (treatments and tests for breathing n o w costing $5 billion annually) is reportedly unnecessary.16 Numer- ous other examples of questionable health care expenditures have been documented.17
Even when treatment is life-sustaining, in many cases patients a n d physicians agree that the patient's prognosis makes the treatment of so little benefit that it is not worth pursuing. If decisionmaking about life-saving treatment could be improved along the lines in this Report-by being freed from misunderstanding about the dictates of law and morality-considerable savings might also result, not from explicit limitations on costs but a s a consequence of better decision-making that took individual facts and values into account in each case.
13Thomas W. Moloney and David E. Rogers, Medical Technology-A Different View of the Contentious Debate Over Costs, 301, New Eng. J.
MED. 1413 (1979).
14 Jeanne Kassler, Routine Use of Chest X-Roy is Under Attack, N.Y.
TIMES, Aug. 10,1982, a t C-1.
15 Howie Kurtz,25% of Pacemakers Unnecessary, WASH. POST, July 8, 1982, a t A-6 (reporting joint study by the Health Research Group a n d
Dr. Peter R. Kowey); Philip J. Hilts, Probe Finds Kickback on Pacemakers, WASH. POST, Sept. 5,1982, a t A-1 (describing investiga- tion into pacemaker industry by Department of Health a n d Human Services).
16 Victor Cohn, Health Insurers Would Stifle Some Respiratory Outlays, WASH. POST, Oct. 21, 1982, a t A-3 (quoting Dr. Marvin Shapirc, Chairman of the Board of Blue Cross/Blue Shield).
17Securing AcCESS TO HEALTH CARE, supra note 9, at 185-90.
100 Foregoing Life-Sustaining Treatment: Chapter 3
Although society might be justified in limiting access for some very costly forms of life-sustaining treatment, the Com- mission does not believe that it would now be wise to focus decisions about such therapy on the issue of cost-containment.
Nor should discussions of cost-containment begin with consid- eration of life-sustaining treatments.18 If potential benefits must be foregone, they should first be in areas that allow more dispassionate reflection a n d opportunity to rectify errors.
Where resource allocation policies do limit the availability of life-sustaining therapies, steps should be taken to help patients understand these policies and the reasons they were enacted.
This will help patients accept the policies or see the need to seek alternative ways to obtain the desired care. More stringent constraints on the availability of life-sustaining therapies should not be imposed on those who are dependent on public programs than would be found acceptable by Americans who pay for their health care through private insurance coverage.19
Meanwhile, efforts should certainly be made to educate the public about the connection between reasonable limits on the use of care, freedom from the fear of overwhelming health care costs, a n d the ability to obtain care that is of great importance to personal well-being. In the long run, a societal consensus about access to health care, including life-sustaining care, is needed. Rather than beginning with restrictions on life- sustaining care, however, it would b e better to develop principles for equitable and acceptable limits on the use of health care generally, a n d then to apply those principles to issues a t the end of life.20