International Association of Physicians in AIDS Care, Journal: April 1998 - Volume 4, Number 4
José Zuniga

The following article was originally presented at IAPAC's First International Conference on Healthcare Resource Allocation for HIV/AIDS and Other Life-Threatening Illnesses, November 10-11, 1997, in Washington, DC.

The ethical principles that underlie healthcare resource allocation include the principles of beneficence and distributive justice. In most societies, the moral foundations of beneficence countenance a duty to aid those who cannot help themselves. However, this obligation is not always fulfilled. Thus, often against prevailing political attitudes, we must work to ensure that society fulfills its obligation to address the needs of its citizens. Within the realm of healthcare, this means that acknowledging limited available resources and within the principles of distributive justice, society must fulfill its obligation to finance a healthcare safety net for the medically indigent.

We do not now pay for the healthcare of every person who requires care primarily because we have avoided making the difficult determination of who can and who cannot access scarce healthcare resources. Indeed, the reason most often given to explain this policy is that we lack the resources that would allow us to use all available technologies. Implicit rationing has always been with us, and most likely it will continue to be with us. Its result is often an arbitrary "First come, first served" handout of care that leaves the most vulnerable at terrible risk of receiving nothing.

This afternoon we will examine explicit rationing of healthcare resources, which, of course, has direct implications for people living with HIV/AIDS and other life-threatening illnesses. Like many of you, I find it difficult to discuss rationing as a solution for providing healthcare to all citizens while containing spiraling costs. But the choices we face are quite clear: If we wish to cover everyone for every illness, costs will rise whatever system we devise. If we attempt to keep a lid on costs, some of the sick will be denied. Assuming that rationing healthcare is unavoidable, and that it requires moral reasoning, the question is how should we allocate limited healthcare resources?¹

Before examining the concept of explicit rationing, we must first determine what contributes to escalating healthcare costs. Health economists and public health officials posit interesting notions on this topic. Some believe that high-dollar items are not responsible for the high cost of healthcare, but rather the overutilization of less costly forms of technology. Proponents of this theory argue that if costs are to be controlled, physicians must be educated not to overutilize technologies.² Former Secretary of Health and Human Services Joseph Califano has argued that the US healthcare system is mired in a sea of waste. From excess capacity in hospitals, to billing wars between the insurance industry and physicians, he contends that billions of dollars are being used to the advantage of the few at the expense of the many.³ He and others believe that universal health coverage is attainable if only we spend and allocate our existing resources more wisely.

The other, more provocative theory is referred to as the "no-fat" view, which maintains that all of the technology developed in the past thirty years is useful and beneficial.⁴ While it may be possible to slow the cost increase by correcting the overuse of technology, rapidly increasing costs will continue as long as basic biomedical research produces useful discoveries. And, eliminating waste in the medical system, while helpful in alleviating short-term resource pressures, does nothing to control spiraling costs in the long-term.

Some proponents of the "no-fat" theory argue that the only way to cope with the escalating costs of healthcare is to explicitly ration access if our countries are to remain financially solvent. They offer as examples the various European countries, such as the United Kingdom, that use criteria such as age, prognosis, waiting periods, and regional availability to choose who receives scarce resources. The grim message these countries have understood is that only by limiting access to medical technology can we ever hope to afford it.⁵

Enthusiasm for the validity of this view has grown in recent years, especially as our society has realized that, given competing interests, individuals and societies will use some, not all, of what modern medicine offers.⁶ Having set aside funds for some, but not all, medical interventions, we will need to live with two outcomes. First, people will die because resources were not set aside to avoid some risks of death and disability. Second, those who have sufficient funds may still be able to purchase additional medical interventions and survive while others die.

The United States has had opportunities in past years to fundamentally alter the nature of allocation of scarce health resources. In the early 1970s and again in the early 1990s, ethical debate was dominated by the question of whether the United States ought to institute some form of comprehensive national health insurance. Sadly, the issue was viewed then as an exercise in liberal utopianism and, subsequently, soundly defeated. History will record that our nation missed an opportunity to create an affordable, comprehensive healthcare system, and chose instead to maintain a status quo.

In this country, we are living in a time of budget retrenchment. Funding for healthcare services, especially services for those who cannot afford to obtain healthcare, is in jeopardy. Drug assistance programs are bursting at the seams. The Medicaid, Medicare and welfare programs are targets for budget cuts. Especially as we continue to see radiant news about the latest drug advance or continued declines in death rates or in rates of incidence, we will find it increasingly difficult to lobby for the funding increases that many programs, including those for HIV disease, have enjoyed in past years. The situation is similar, if not worse in other countries.

And, while there may be a great deal of fat in the healthcare system, eliminating administrative waste and nonbeneficial services does not eliminate the reality that healthcare resources remain scarce. Nor does it eliminate the reality that hard choices have to be made about who will and will not have access to these resources when not everyone can do so. For those reasons, we cannot shrink from formulating ethically acceptable criteria for rationing access to healthcare.

George Bernard Shaw considered similar issues in his play, The Doctor's Dilemma. In the play, Sir Colenso Ridgeon discovers a vaccine against active tuberculosis. His supply is limited. The Doctor's Dilemma is whether to give the last remaining doses to an aging fellow practitioner, Dr. Blenkinsop, or to a young artist, Louis Dubedat.

Shaw anticipated a situation in which the cost-benefit ratios of various treatments are tabulated and care is denied to people--the elderly or terminally ill--whose costs might sink the proverbial raft:

RIDGEON: I have at the hospital ten tuberculosis patients whose lives I believe I can save.

DUBEDAT: Thank God!

RIDGEON: Wait a moment. Try to think those ten patients as ten shipwrecked men on a raft Ba raft that is barely large enough to save them--that will not support one more. Another head bobs up through the waves at the side. Another man begs to be taken aboard. He implores the captain of the raft to save him. But the captain can only do that by pushing one of his ten off the raft and drowning him to make room for the new comer. That is what you are asking me to do.

DUBEDAT: But how can that be? I don't understand.

RIDGEON: You must take my word for it that it is so. We are doing our utmost. The treatment is a new one. It takes time, means and skill; and there is not enough for another case. Our ten cases are already chosen cases. Do you understand what I mean by chosen?

In The Doctor's Dilemma, Ridgeon finally decides to treat Blenkinsop and to keep Dubedat off the raft. Whatever the solution to the dilemma we face today, it is inevitable that we must keep someone off an inadequate raft while the ocean liners of affluence steam by in the distance.⁷

There is a growing school of thought which runs, "Our nation is in a tough situation. We must be prepared to eject some of our fellow citizens from the healthcare raft, or lifeboat. They are draining us of resources that we need to continue our economically sound voyage in competing in the world marketplace."⁸

Many of our nations have been in a situation of lifeboat ethics with respect to healthcare longer than we choose to admit. The moral question is, "What rules can we agree upon to guide us in answering the question of whom to toss over the side?"

Rationing is, from a moral point of view, a distinct subset of allocation issues. It is a dire instance of what is permitted in responding to scarcity.⁸ Rationing describes choices, not about marginal utility or incremental benefits, but rather choices that require excluding some persons from lifesaving benefits. The clearest paradigm is that which Shaw writes about in The Doctor's Dilemma.

Some people in the United States believe we have to look to Canada or to Europe to find real cases of healthcare rationing. The Canadian and European systems of universal coverage ration care by limiting the availability of services. In the British National Health Care Service, the supply of resources, for instance the number of beds, is fixed as a matter of public policy.⁹

But in the United States, rationing policies have been instituted in many areas of healthcare over the years. When confronted with scarcity of such dimensions that rationing is required, the American response generally has centered around four factors: We use the ability to pay to ration access. We also look very carefully at age. Transplant centers and transplant surgeons who say that 55 is too old for a liver transplant, or 65 is the age at which we will not give access to a heart transplant, are doing so on more than purely medical grounds.⁸ Although more than 100 times as many adults as children die from vaccine-preventable disease, the federal government allocates the vast majority of federal immunization funds to childhood programs.¹⁰ These responses are in reaction to a situation in which lifesaving resources or the funding with which to purchase a lifesaving resource is scarce.

In making rationing decisions, the degree to which medical technology is known to work is an important consideration. There is a tendency to discourage access to high-dollar technologies when patients have a poor chance of surviving. The health of patients is a factor much in evidence in rationing access to new medical treatments. Those making healthcare resource rationing decisions today also apply additional criteria having to do with psychological, social, and familial attributes of potential recipients.

The Oregon Health Plan was developed in response to state budgetary constraints and federal government restrictions that amplified the defects in the American healthcare system.¹¹ John Kitzhaber, MD, was president of Oregon's State Senate and an emergency room physician. He was so impressed by the triage system that he applied its principles to a plan that would extend Medicaid benefits to all Oregonians with incomes below the poverty level. By switching from implicit to explicit rationing, Kitzhaber believed that Oregon could offer greater access to basic benefits rather than more expensive and less effective procedures to those already covered.

The Oregon Health Plan proposed to ration healthcare according to a priority list of 709 disorders. Of the 709, Oregon's legislators predicted that the lowest-ranking 122 diagnostic and treatment categories would not be covered in the first year. Among these were Parkinson's disease, acne, and terminal AIDS with less than 10 percent chance of survival.

Traditionalists argue that whereas legislative bodies ration the money available for healthcare every time they approve appropriation bills, they have no business setting healthcare priorities. Traditionalists further argue that we do not elect public officials to choose between an elderly individual with Alzheimer's disease or a young person who needs a polio shot. Many of us may have issues with the particulars in Oregon's rationing experiment. The fact remains, however, that Oregon, and many more states since, attempted to resolve the seemingly intractable dilemma of reducing costs while increasing access.

On behalf of the International Association of Physicians in AIDS Care, I offer the following challenges to those of us--government and public health officials, community and public health advocates--who are responsible for the healthcare of our fellow citizens:

1. As unpopular as it may be, we must use the "R" word. We must call the consequences of a system that cannot provide adequate healthcare to those who will die without such care exactly what it is--rationing. The first step in providing better equity to healthcare access is to face the problem head-on. We will never gain public support to meet the challenge of access to scarce healthcare resources if we continue to avoid the reality of the problem we face.
2. Those who have accepted the responsibilities of making difficult decisions on funding healthcare for the poor, also have the responsibility to approve the guidelines for equitable rationing of healthcare services and lifesaving drugs in limited supply. While our association believes that bioethicists are best equipped to play a primary role in recommending appropriate guidelines for explicit rationing, the drafting of proposed guidelines must also include physicians, communities of faith, healthcare officials, and members of the communities affected by such rationing guidelines.

The challenges to approve guidelines are different in less industrialized countries than in industrialized countries. In industrialized countries the challenge may be primarily one of distributive justice and a determination of how much money can be allocated to healthcare services and lifesaving drugs versus education, highways, or public safety.

In less industrialized countries that lack the resources to address this need there will be far greater challenges. For example, the UNAIDS program that Joseph Saba, MD, discussed earlier today targets Chile, Vietnam, Côte d'Ivoire, and Kenya with only a small fraction of the drugs necessary to meet the public need, but it is better than offering the citizens of those countries nothing at all. We know that the challenges of establishing rationing guidelines will be monumental. However, our responsibility cannot be shirked.

3. We must not confuse ethical values with cultural values. A recent New England Journal of Medicine editorial labeled as "unethical" ongoing maternal-fetal antiviral trials in Africa. As Doctors Saba and Arthur Ammann so eloquently responded in a recent New York Times editorial, "In declaring the trials unethical, critics are saying that American biomedical judgments should supersede those of experts in other nations. Local health experts, bioethicists, and affected groups are best qualified to judge the risks and benefits of any medical research."
4. The responsibility of developing more equitable guidelines for rationing requires us to ask difficult questions. Some of the questions that need to be asked are related to:

1. Age. How does age factor into a rationing formula? Do the young have a greater right to life than adults? Do the elderly have less of a right to healthcare services and lifesaving drugs than young people?
2. Health status. When healthcare services and lifesaving drugs are in limited supply how does a patient's health status affect his or her right to access scarce healthcare resources? For example, is there a greater obligation to provide new drugs in limited supply to patients who are resistant to other drugs in the antiviral armamentarium?
3. Healthcare expertise. Does the healthcare expertise support the most appropriate use of scarce healthcare resources? How knowledgeable are the physicians about the intricacies of drug management? In HIV/AIDS there is growing anecdotal evidence that the failure rate of some antiviral regimens may be due to the inappropriate use of these regimens. We continue to encounter situations in the United States and in other industrialized countries where monotherapy is still a standard of care used by some physicians. One of the more disturbing incidents at ICAAC this year involved a physician bragging to one of his colleagues about how much money he was saving by alternating protease inhibitor therapy every other week.
4. Compliance. With reference to antiviral drugs in limited supply, is there a responsibility to evaluate potential compliance of patients in using drugs in which noncompliance can result in resistance and cross-resistance? This issue applies to HIV and other diseases, such as tuberculosis.

Opponents of rationing say that the stakes are so high--life and death, in most cases--that every effort must be made to resist or at least delay the implementation of rationing policies. It is certainly ethically imperative to craft public policy solutions to address some of the inequities in access to healthcare. For instance, our association supports efforts to extend Medicaid eligibility to all people with HIV and AIDS. Our association also favors a requirement that states match federal AIDS Drug Assistance Program (ADAP) funding, and we advocate for the creation of a national ADAP formulary. But crafting short-term solutions in lieu of developing equitable rationing guidelines is a disservice to those whom we represent and to ourselves as a global advocacy community. Medicaid expansion and ADAP restructuring ultimately do not control spiraling healthcare costs. The reality of scarce resources eventually forces us to ration.

Of course, the global healthcare crisis should not be viewed in isolation, but must be considered within a broader social context.¹² Economic troubles, the emergence of costly new medical technology, intractable poverty and growing homelessness are all part of the crisis, and must be addressed by any solution. Ultimately, we know that decisions on healthcare resource allocation will be made on a political level. Furthermore, we also accept that we must do all we can collectively to secure the most resources possible for healthcare, so that as many needs as possible are met cost-effectively. But we must also understand that we have a collective responsibility to society to acknowledge and participate in the rationing process. I believe that our association's motto, a Dag Hammarksjöld quote, should be our guiding principle as we move forward: "To let oneself be guided by a duty from the moment you see it approaching is part of the integrity that alone justifies responsibility."

References

1. Gould S. Allocating health care: cost-utility analysis, informed democratic decision making, or the veil of ignorance? Journal of Health Politics, Policy, and Law 1996;21:69-98.

2. Moloney T, Rogers D. Medical technology--a different view of the contentious debate over costs. N Engl J Med 1979;301:1413-19.

3. Califano J. Rationing health care: America's self-inflicted wound. Stanford Law and Policy Review 1991:3;36-41

4. Schwartz W, Aaron H. The Painful Prescription. Washington, DC: Brookings Institution; 1984.

5. Johnson D. Life, death, and the dollar sign. JAMA 1984;252(2):223-24.

6. Strosberg MA, et al. Rationing America's Medical Care: The Oregon Plan and Beyond. Washington, DC: Brookings Institution; 1992.

7. Weissmann G. The Doctor Dilemma. Knoxville, Tenn: Whittle Direct Books; 1992.

8. Caplan A. Hard data on efficacy: the prerequisite to hard choices in health care. Mount Sinai Journal of Medicine 1989;56(3):185-190.

9. Landry L. Rationing of Healthcare. South Africa: Medical Association of South Africa; 1993.

10. Lee J. Adult immunization priorities in the United States. Milbank Q 1996;74(2):285-308.

11. Kitzhaber J, Gibson M. The crisis in health care: the Oregon health plan as a strategy for change. Stanford Law and Policy Review 1991;3:64-72.

12. Grumet G. America's health care crisis: an overview from the trenches. Stanford Law and Policy Review 1991;3:42-53.

José Zuniga is political editor of the Journal and deputy director of IAPAC.

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