NOTE: The UW Dept. of Bioethics & Humanities is in the process of updating all Ethics in Medicine articles for attentiveness to the issues of equity, diversity, and inclusion. Please check back soon for updates!
Authors:
Albert R. Jonsen, PhD, Emeritus Professor (deceased), UW Dept. of Bioethics & Humanities
Kelly A. Edwards, PhD, Affiliate Professor, UW Dept. of Bioethics & Humanities
Core clerkship material for: Otolaryngology | Surgery | Rehabilitation Medicine | Trauma / Emergency Medicine
Topics addressed:
- What rules guide rationing decisions?
- Are there ethical criteria for making triage decisions?
- Can I make allocation decisions based on judgments about "quality of life"?
- What about "macro-allocation" concerns?
- Can we ethically qualify a "right to health care"?
"Physicians should merit the confidence of the patients entrusted to their care, rendering to each a full measure of service and devotion." This is the first statement in the Principles of Ethics of the American Medical Association. Often scarcity of resources, such as equipment, beds, drugs, time or excessive numbers of persons in need make it difficult, if not impossible, to provide “the full measure of service and devotion.” When these conditions of scarcity occur, what considerations should guide decisions for painful tradeoffs in a fair and compassionate manner. This topic page raises some issues to consider when facing these difficult allocation decisions.
What rules guide rationing decisions?
Often scarcity can be alleviated by improved efficiency or expanded investment. However, if these practical solutions cannot solve the problem, a “rationing” decision must be made. Rationing means the distribution of any needed thing or procedure that is in short supply to those who need it in accord with a set of rules that assure fair distribution. The reasons for shortage can be many. For example, there are many more patients with end stage cardiac disease or liver disease than there are cadaver organs available; expensive equipment may be lacking in a particular region; tertiary care hospital beds may be limited; a particular medication may be extremely costly; few personnel might be trained for a certain technical procedure, insurance coverage is unavailable or of prohibitive cost.
Every physician rations his or her own time available to provide medical services. For the most part, this personal rationing is done by rules of common sense: I will take only as many patients as I can care for competently; I will assure that my attendance is sufficient to guarantee high quality medical care to my patients, etc. For other kinds of rationing, for instance rationing of ICU beds, these rules of thumb are not enough. More articulate principles are required.
In one highly publicized instance of resource allocation, the Seattle Artificial Kidney Center appointed a committee to decide who would receive dialysis treatments, in 1962 a rare and expensive resource. "Likelihood of medical benefit" was the first criteria used to determine eligibility. Even so, many more patients required dialysis than there were machines available. The committee turned to "social worth" criteria that is, they tried to weigh the anticipated contributions the patients would make to society were their lives saved. This sort of evaluation proved very difficult and troubling, since it led to highly discriminatory judgments, such as “Popular” people over unpopular, school graduates over the uneducated, devout over unreligious, etc. Many bioethicists argued that a lottery or a "first-come, first-served" criteria would have been more equitable and ethically justifiable.
One of the most serious medical shortages, organs for transplantation, has been organized into a national system with criteria that strive for fairness. The criteria attempt to match available organs with recipients on presumed "objective" grounds, such as tissue type, body size, time on waiting list, seriousness of need. However, even in this system, it is obvious that such a criterion as "serious need" can be used in a manipulative way. Still, this system is preferable to the subjective use of criteria of social worth and status that would unfairly skew the distribution of organs.
Are there ethical criteria for making triage decisions?
One common medical situation in which specific principles must be applied is called “triage.” Triage (which means "choice" or "selection") is required when many patients simultaneously need medical attention and medical personnel cannot attend to all at the same time, such as in a disaster or in the crowded emergency department of an urban hospital. Again, the common sense rule is to serve persons whose condition requires immediate attention and, if this attention is not given, will progress to a more serious state. Others, whose condition is not as serious and who are stable, may be deferred.
A second sort of triage is indicated in disasters, such as earthquakes, or in military action. The rules of military triage, developed centuries ago, direct the physician to attend first to those who can be quickly and successfully treated in view of a speedy return to the battlefield, or to treat commanders before troops in order to assure leadership. This sort of disaster triage is applied to civilian disasters by treating persons, such as firefighters or public safety officers, who can quickly return to duty and help others. Disaster triage implies that the most seriously injured may be relegated to the end of the line and left untreated, even at risk of death, if their care would absorb so much time and attention that the work of rescue would be compromised. This is one of the few places where a "utilitarian rule" governs medicine: the greater good of the greater number rather than the particular good of the patient at hand. This rule is justified only because of the clear necessity of general public welfare in a crisis.
Can I make allocation decisions based on judgments about "quality of life"?
Under conditions of scarcity, the question may arise whether a patient's quality of life seems so poor that use of extensive medical intervention appears unwarranted. When this question is raised, it is important to ask a few questions. First, who is making this quality of life judgment, the care team, the patient, or the patient's family? Several studies have shown that physicians often rate the patient's quality of life much lower than the patient himself does. If the patient is able to communicate, you should engage her in a discussion about her own assessment of her condition.
When considering quality of life, you should also ask: What criteria are being used to make the judgment that the quality of life is unacceptable? These criteria are often unspoken and can be influenced by bias or prejudice. A dialogue between care givers and the patient can surface some underlying concerns that may be addressed in other ways. For example, residents on a medical floor in an urban public hospital may get discouraged with the return visits of a few chronically ill alcoholic patients and suggest that money is being wasted that could be used for prenatal care or other medically beneficial projects. While the residents' frustration is understandable, it would be helpful to consider other ways they might interrupt this vicious cycle of repeat admissions. How could this patient population be supported in ways that might improve health?
Quality of life judgments based on prejudices against age, ethnicity, mental status, socioeconomic status, or sexual orientation generally are not relevant to considerations of diagnosis and treatment. Furthermore, they should not be used, explicitly or implicitly, as the basis for rationing medical services.
What about "macro-allocation" concerns?
Some situations involve what is called "macro-allocation," that is, broad policies to distribute resources across populations, as distinguished from "micro-allocation" decisions, such as in the above triage examples, to give priority to one patient over another.
Many of these reasons for shortage are the result of deliberate decisions to ration. Even such shortages as vital organs result from social policies that favor voluntary donation over routine salvaging or a commercial market in organs. Other shortages result from broad social and cultural institutions: our country has left health care largely in the private sphere and the availability of care for individuals is conditioned by their ability to pay or their employment status, the scarcity of flu vaccine in a given year may result from budgetary decisions rather than an estimate of need in the population. The social "safety net" that acknowledges a moral duty to assure health care to those unable to pay is strengthened or weakened according to prevailing societal commitments.
The theoretical ethical question is: can a fair and just way of allocating health care resources be devised? The practical ethical question is: can a fair and just allocation be actually implemented in a particular social, economic and medical climate?
Can we ethically qualify a "right to health care"?
Several ethical theories have been elaborated to formulate criteria for fair and just distribution and to examine the arguments for a "right to health care." At present, little agreement exists on any of these issues. Ideally, all persons should have access to a "decent minimum" of health care necessary to sustain life, prevent illness, relieve distress and disability, so that, in the words of one bioethicist, "each person may enjoy his or her fair share of the normal opportunity range for individuals in his or her society."
Debates over this issue have been lengthy and serious. Many policy proposals have been considered: some implemented and others rejected. However, in the systems of managed health care now so common in American medicine, the question of fair and just allocation of resources must be raised and the various policies and criteria for allocating resources must be reviewed for their fairness and equitability.
Some specific examples of public policy in devising an allocation system concentrate on the criteria of efficiency and cost-effectiveness. The state of Oregon is unique in having such a system for its Medicaid patients: a long list of medical procedures, ranked in terms of their cost/benefit ratio, determines the reimbursement policy. Even with such a system, ethical criteria must also be considered: what is to be done if life-saving and life-sustaining interventions rank low on cost-effectiveness? Is it ethical to omit the rescue of a person from death because their rescue by, say, bone marrow transplantation is less cost-effective than some preventive measures? How is cost-effectiveness to be applied to persons with shorter natural life expectancy, such as the elderly? These questions are not easily answered but they must be consistently raised whenever allocation systems are proposed. Some forms of allocation are obviously unethical in any society that values justice. For example, making the ability to pay the only way of obtaining medical care or distributing medical resources to the friends or political colleagues of those in power. Many other problems are less obviously unethical but still need to be evaluated and debated.