March 1981 II/7
END STAGE RENAL DISEASE (ESRD): AN ETHICAL EVALUATION
A resume of a paper presented at the Missouri Renal Dialysis Conference, March 31, 1981.
I. The Program
In 1972 the federal government passed legislation to assume the costs for transplantation and dialysis for anyone with severe renal disease (ESRD). The purpose of this program was to sustain life for those who suffered kidney disease, to make life more beneficial for those suffering from this disease and above all to make this life-saving treatment available to all, no matter what their level of income or place in society.
In the first year of the program, 1974, about 5,000 patients were treated and the cost was $172 million. According to the latest figures, in 1981 the cost for the ESRD program is estimated at $1.5 billion and about 50,000 people will be cared for; about 4,200 will receive kidney transplants.
What are the results of this program? Surely the lives of many people have been prolonged through transplants and dialysis; moreover, the lives of many people, patients and family members who share life with patients, have benefitted from the longer and healthier life and presence of people who otherwise would have died. Sustaining life through transplantation or dialysis, however, does not lead to a problem-free existence. Even for those who have successful transplantations, there are physiological and psychological problems that are more or less debilitating.
The type of burden that afflicts those with transplants is summed up: in the words of a transplant patient: "The dramatic character of transplantation surgery diverts attention from social problems inherent in the medical procedures, such as failure of the operation to meet expectations of the patient and family, disruption of family equilibrium, and investment of public funds to meet these costs. Renal failure and transplantation precipitates a crisis that may be defined differently by the patient and family. The crisis situation may mobilize or it may incapacitate them."
For those who remain on dialysis, the problems seem to be more serious. A recent survey (1) of men and women patients in several dialysis centers found that among diabetic patients, over 50 percent were not able to care for themselves completely. In contrast, only about 20 percent of the non-diabetic patients were judged to be unable to care for themselves completely. Overall, the results of this survey suggest that at least 40 percent of dialysis patients have not achieved successful occupational rehabilitation and that at least one of five patients is unable to live an independent existence. The survey indicated that in 1879, 44 percent of the patients observed were not working and more than 50 percent were probably too sick to work, irrespective of the level of education and previous employment status. Although hemodialysis alleviates the uremic syndrome and the patient generally feels better, there are diet restrictions, problems with blood pressure, feelings of weakness, impotence, periodical hospitalization and shunt complications, any of which may prevent participation in living activities.
II. Ethical Evaluation
Given the main purpose and objectives of the ESRD program, it seems that the renal dialysis program has been an outstanding success because it fulfills the ethical values of medicine and the goals of a compassionate society. The lives of thousands have been prolonged, no question is asked about the income, social standing, or productivity of the people who receive therapy. Moreover, the families of renal dialysis patients are able to share life more abundantly with their loved ones. However, there are those who believe the ESRD program has been a disaster. Usually, when people evaluate this ESRD program they start out by computing the cost and decrying the fact that the cost has escalated considerably over the years. In addition to decrying the cost, subtle hints are given that we are keeping alive the "useless" members of society because we are prolonging life for those who cannot old a job and are therefore nonproductive.
For example, the aforementioned study (1) concludes: "The results of this survey suggest that a much larger number of American dialysis patients are severely debilitated than has been previously anticipated or reported." The implication of this study is that because many people on dialysis do not lead "productive lives" the program is flawed. The assumption seems to be that only those who are "productive" are worthwhile. I find this attitude ethically unsound, and inhumane as well. We have to be very careful about evaluating persons solely on the basis of productivity else we affirm a materialistic and pragmatic ethic; an ethic which history demonstrates, eliminates the weak, the infirm, and the socially undesirable under the guise of efficiency, financial need, or social progress.
For many people, the only evaluation of health care programs is a financial evaluation. But let us realize that making or saving money is not the goal of a compassionate society. The gross national product is not the standard of ethical activity. Rather, we should realize that our financial considerations should he at the service of our ethical standards. Our budgets, our financial planning should be the expression of our ethical philosophy.
I realize that one billion dollars is a large sum of money, but the overall decision as to whether or not we can afford this program has to be worked out with a view to the total assets of the country, the amount of public funds that should be devoted to health care needs, and the priorities that should be developed for public and private health care funds. In other words, we cannot ignore how much our health care programs cost, but we must put the cost in perspective. We can only do this rationally and consistently if we develop national health care priorities for a humane, ethical and just society, We must realize that we have limited means and plan our life-prolonging programs of the future within those means.
The call for priorities and planning within the national health care program is nothing new, Fifteen years ago, when medicare was introduced, such a statement of priorities was called for. To date, no consensus in regard to priorities has been developed and this is one of the principal reasons why an adversarial relationship has developed between the federal government and health care professionals.
Kevin O'Rourke, OP
1. Gutman et al., "Physical Activity and Employment Status of Patients on Maintenance Dialysis," NJEM, Vol. 304, n.6, Feb. 5, 1981,
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