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Health Care Justice and Hospice Care

By Daniel P. Sulmasy

Most theories of health care justice account inadequately for hospice. They tend to regard death as an external force rather than as something to be integrated into an overall theory of care. They tend to be very individualistic. And they tend to assume relationships of equal power among independent agents whose conception of justice is the delineation of fair rules.

Yet for most of health care, and especially for the care of the dying, these assumptions make no sense. First, as hospice workers know well, death can be a friend. Second, health care is consummately about relationships. Hospice workers also understand this clearly. Third, health care relationships, especially in attending to the dying, are characterized by profound inequality, dependence, and loss of control. And in the face of sickness and death, the ultimate question is whether life itself, not any rules, is really fair.

To account for these clinical realities, an adequate theory of health care justice must have something substantive to say about human beings. Here, I will merely assert that human beings are characterized by three features that are especially relevant. First, as Aristotle insists, human beings are naturally social. This is sometimes referred to as a principle of social solidarity. Second, human beings are finite. Death is an intrinsic element of our humanity. Theories of health care justice must take human finitude seriously. Third, human beings have a radically equal intrinsic worth or dignity that commands the respect of others, independent of our preferences.

A human need many be defined as something required for human flourishing. Indisputably, the finitude of the body of each and every human being is both the limiting term of all possible individual human flourishing and also precisely the need that medicine, nursing, and the other health care professions serve. Health care professionals all profess publicly to serve the needs of those whose bodily finitude renders them vulnerable, diminished in power and control, and unable to help themselves. Health care professionals recognize the claims made on them by the dignity of the sick and by their own solidarity with them.

The finitude that the health professions address manifests itself in three ways - death, disease or injury, and symptoms. These correspond (roughly) to the traditional medieval aphorism about the goals of medicine - "To cure sometimes, to relieve often, and to comfort always."

Meeting these needs requires resources. But the resources human beings may use to serve each other in their unequal bodily finitude and their equal human dignity are always scarce. By what criteria can one judge how best to apportion scarce health care resources in order to promote human flourishing? This is a question of justice, and justice requires criteria by which to make such judgments. I suggest six material considerations. The first five are commonly involved in discussions of scarce medical resources, but are not usually considered in the context of human finitude, dignity, and solidarity. The sixth is almost never considered except as the sum of the other five. These material considerations are (1) individual need, (2) prevalence, (3) prospect of success, (4) alternatives, (5) cost, and (6) contribution to the common good. For the sake of illustration, let us compare flu shots, liver transplants, and hospice according to these material considerations.

NeedThe need for hospice care is very high. Symptoms diminish human flourishing, not just death. The dignity of the dying is never less than that of the surviving. Relieving an agonizing death is as much a part of medicine as is preventing a serious illness or preventing a premature one.
PrevalenceAs many as 70 percent of Americans will have needs that could be addressed by hospice. By contrast, only about 1 percent of vaccinated persons individually benefit from vaccines, and fewer than 0.1 percent of persons will ever be eligible to benefit from a liver transplant.
SuccessThe prospect of success for hospice is extremely high. Well over 90 percent of persons achieve satisfactory symptom relief with appropriate palliative care. By contrast, even excellent flu vaccination programs achieve only about 75 percent success. And liver transplants carry a 50 percent five-year mortality rate.
AlternativesThe alternative to hospice is grim - the prospect of dying an agonizing death. By contrast, the alternative to flu vaccines is reasonable - treating influenza cases as they arise - either symptomatically or even with anti-viral drugs. But what is the alternative to liver transplant? A rational person would hope that it would be hospice. Many who need a liver will not receive one, and those who are transplanted will still die. And they could all benefit from hospice. In other words, it may actually be unjust to offer liver transplantation unless one can offer a program like hospice.
CostThe cost of transplant is extremely high, the cost of flu shots very low, and the cost of hospice low to moderate.
Common GoodThe common good is clearly served by flu vaccines. But hospice arguably not only serves a prevalent human need, but also accomplishes much on the interpersonal level that enhances the common good. The opportunities for interpersonal reconciliation, caring, and solidarity that are afforded by hospice rebound quite substantially to the common good. In a robust understanding of the common good, the flourishing of each person is partly constituted by the flouring of others. This means that we all benefit when the dying are treated well. By contrast, liver transplantation helps very few persons and contributes minimally to the common good.

This exercise suggests that, weighing all these material considerations, hospice compares well with prevention and high-tech medicine. Hospice can claim, in justice, significant medical resources vis-à-vis other medical interventions. Human flourishing is well served if people do not die miserable deaths, both for the individuals themselves and the community with which those individuals are in solidarity.

As evidence, one need only look to the poorest of poor nations. Those with no resources palliate, as best they can, their dying kinspeople. Ask any clinician what he or she would take to a desert island. I suspect the list might include aspirin, morphine, two antibiotics, a few vaccines, and a textbook of surgery. These are the fundamentals. To palliate the dying is to give them their due. This is what we owe each other, out of mutual respect for our common dignity and in solidarity with each other as fellow mortals. As a matter of justice, hospice is the least we can do.

Daniel P. Sulmasy

Daniel Sulmasy is Sisters of Charity Chair in Ethics at St. Vincent's Hospital Manhattan and director of the Bioethics Institute of New York Medical College.

This essay appears in the report Access to Hospice Care: Expanding Boundaries, Overcoming Barriers.

Cite As: Daniel P. Sulmasy, "Health Care Justice and Hospice Care," Hastings Center Report Special Supplement 33, no. 2 (2003), pp S14-S15.