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Just Caring: Health Care Rationing, Terminal Illness, and the Medically Least Well off

Published online by Cambridge University Press:  01 January 2021


What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? This is the question that will be the focus of this essay. Another way of asking our question would be the following: Relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? Should any of the health care needs of the terminally ill be assigned very low priority? Or should all their health care needs be assigned the highest priority? If we reflect a bit, we will find ourselves greatly internally conflicted. On the one hand, the “caring” side of our moral self might see terminally ill individuals as being among the “medically least well off,” and therefore, deserving virtually any medical resources that will yield any degree of good for them.

Copyright © American Society of Law, Medicine and Ethics 2011

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Fleck, L. M., Just Caring: Health Care Rationing and Democratic Deliberation (New York: Oxford University Press, 2009).Google Scholar
Daniel Callahan has made the insightful point that what we regard today as health care needs are tied very directly to emerging medical technologies. Thus, prior to 1970 we could not say that anyone needed bypass surgery for their clogged coronary arteries or an implantable cardioverter defibrillator (ICD) to reverse the potentially fatal effects of a cardiac arrhythmia. But in 2009 in the U.S. about 500,000 coronary bypass surgeries were performed at a cost of about $65,000 each. Another 1.2 million coronary angioplasties were performed at a cost of about $35,000 each and about 200,000 ICDs were implanted at a cost of $40,000 each. These three interventions alone represented aggregate health costs of about $80 billion in 2009, thereby illustrating nicely how these new medical technologies have become the primary drivers of escalating health care costs over the past 40 years. See Callahan, D., What Kind of Life: The Limits of Medical Progress (New York: Simon and Schuster, 1990): At 31–68. The statistics regarding heart disease may be found in American Heart Association, Heart Disease and Stroke Statistics – 2009 Update, Dallas, TX.Google Scholar
Truffer, C. J., Keehan, S., and Smith, S. et al., “Health Spending Projections through 2019: The Recession's Impact Continues,” Health Affairs 29, no. 3 (2010): 522–29.CrossRefGoogle Scholar
See Fleck, , supra note 1, at chap. 2; Ubel, P., Pricing Human Life: Why It's Time for Health Care Rationing (Cambridge, MA: MIT Press, 2000); Aaron, H. J., Schwartz, W. B., and Cox, M., Can We Say No? The Challenge of Rationing Health Care (Washington, D.C.: Brookings, 2005); Menzel, P. T., Strong Medicine: The Ethical Rationing of Health Care (New York: Oxford University Press, 1990); Daniels, N. and Sabin, J. E., Setting Limits Fairly: Learning to Share Resources for Health (New York: Oxford University Press, 2002); Wutscher, F., Breyer, F., Kliemt, H., and Thiele, F., eds., Rationing in Medicine: Ethical, Legal, and Practical Aspects (Berlin: Springer-Verlag, 2001); Butler, J. A., The Ethics of Health Care Rationing: Principles and Practices (London: Cassell, 1999); Singer, P., “Why We Must Ration Health Care,” New York Times Magazine, July 19, 2009. This list could get extremely long. What it is intended to illustrate is that the inescapability of the need for health care rationing has been defended for more than 20 years, and that it is a problem that confronts Europe as well as the U.S. The common denominators in this latter case are costly emerging medical technologies.Google Scholar
More recently we have seen a similar phenomenon in Arizona where state government is trying to cope with large deficits. Almost 100 individuals needing either major organ transplants or bone marrow transplants were removed from Medicaid coverage for those transplants by the state legislature and the governor. All these individuals will die prematurely as a result of this decision. The argument of the governor and legislative representatives was that these interventions were “bad buys” with limited state funds that yielded too little benefit at too high a cost. Morally speaking, however, this is a specious argument, given that these same interventions would continue to be funded by insurance for state employees and officials. If these interventions were such a bad buy for Medicaid recipients, then they are an equally bad buy for state employees and officials, such as the governor herself. See Lacey, M., “Transplants Cut, Arizona Is Challenged by Survivors,” New York Times, December 18, 2010.Google Scholar
For the various dialysis statistics refd here please see U.S. Renal Data System 2008, USRDS Annual Data Report: Atlas of End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD.Google Scholar
See Kurella, M., Covinsky, K. E., Collins, A. J., and Chertow, G. M., “Octogenarians and Nonagenerians Starting Dialysis in the United States,” Annals of Internal Medicine 146, no. 3 (2007): 177183. Among other things the authors point out that from 1996–2003 in the U.S. 78 419 octogenarians and 5577 nonagenarians initiated dialysis. The one-year mortality rate for individuals in this cohort starting dialysis was 46%. The annual increase in size in this cohort was about 9%, or 57% for the seven-year period. About 36% of these patients had four or more comorbid conditions such as heart disease, cancer, COPD, cerebrovascular disease, and diabetes, etc. See also Himmelfarb, J. and Ikizler, T. A., “Hemodialysis,” New England Journal of Medicine 363, no. 19 (2010): 1833–1845. They write, “The demographics of the dialysis population have also changed dramatically over time. Less stringent selection of patients has led to treatment of an increasing proportion of elderly patients, patients with diabetes, and patients who are frail and have complex coexisting conditions…. Among elderly nursing home residents, the initiation of dialysis is associated with a substantial decline in functional status and high mortality” (at 1838). This last sentence is supported by the following citation: Kurella Tamura, M., Covinsky, K. E., and Chertow, G. M. et al., “Functional Status of Elderly Adults Before and After Initiation of Dialysis,” New England Journal of Medicine 361, no. 16 (2009): 1539–1547.CrossRefGoogle Scholar
Hemophilia has very high costs but those costs yield an acceptable quality of life and something close to a normal life expectancy for many of these patients. For patients with a moderate form of hemophilia the annual costs are very close to the annual costs of dialysis. Patients with the most severe form of the disease will incur annual costs between $150,000 and $225,000. The vast majority of those costs are associated with recombinant Factor VIII. The current debates (medical, ethical, and policy) around hemophilia center around two issues: The use of Factor VIII prophylactically (as opposed to when a bleeding episode occurs) and what is called “immune tolerance therapy” for hemophiliacs who develop a resistance to Factor VIII. In both cases the question raised is whether the very high costs in both these regards is worth the achieved benefit from the perspective of limited resources. Prophylactic therapy is supposed to improve quality of life by minimizing the damage done by bleeds treated after the fact, but the annual cost per person can be $300,000. Hemophiliacs who are Factor VIII resistant will be faced with a greatly diminished life expectancy (less than 30 years); the cost of immune tolerance therapy will often reach $2 million dollars per person. With regard to the first issue, see Feldman, B. M., Aledort, L., and Bullinger, M. et al., “The Economics of Hemophilia Prophylaxis: Governmental and Insurer Perspectives,” Proceedings of the Second International Prophylaxis Study Group Symposium, Haemophilia 13, no. 6 (2007): 745–749. With regard to the latter issue see Ullman, M. and Hoots, W. K., “Assessing the Costs for Clinical Care of Patients with High-Responding Factor VIII and IX Inhibitors,” Haemophilia 12, Supp. 6 (2006): 7480.Google Scholar
I make this comparison with debilitated patients over age seventy-five given dialysis because this group has been the focus of significant medical and policy attention. Dialysis can be successful at prolonging reasonable quality of life in the very old who have minimal co-morbid conditions. But it has been used increasingly to sustain severely debilitated lives, or, more accurately, to sustain the process of dying something less than a good death. A better alternative to dialysis in such circumstances for both fiscal and fiduciary reasons would be palliative care. See Arnold, R. M. and Zeidel, M. L., “Dialysis in Frail Elders – A Role for Palliative Care,” New England Journal of Medicine 361, no. 16 (2009): 15971598. See also Brunori, G., Viola, B. F., Maiorca, P., and Cancarini, G., “How to Manage Elderly Patients with Chronic Renal Failure: Conservative Management versus Dialysis,” Blood Purification 26, no. 1 (2008): 36–40; and Fassett, R. G., Robertson, I. K., Mace, R., and Youl, L. et al., “Palliative Care in End-Stage Kidney Disease,” Nephrology 16, no. 1 (2011): 4–12.CrossRefGoogle Scholar
See American Heart Association, supra note 2, at 2, 20. The actual figures represent 2005 data.Google Scholar
As noted earlier we will distinguish patients who are “imminently” terminally ill from those who are “remotely” terminally ill. Patients are “imminently” terminally ill when they have a medically predicted life expectancy of less than a year. This is nothing more than a pragmatic bureaucratic decision that determines when a patient is eligible for hospice benefits through Medicare or some other insurance company. In this essay much of my attention is focused on the health care justice issues raised by those who are more remotely terminally ill. These are individuals who have been diagnosed with an incurable illness (heart disease, various cancers, COPD, HIV, etc.) whose actual life expectancy will be a function of the degree to which they can access various expensive life-prolonging medical interventions. Does this status entitle any of these individuals to special moral status, i.e., give them stronger just claims to needed health care than patients whose health needs are not linked to a terminal illness? This question does not have a simple answer because these emerging life-prolonging medical technologies have varying degrees of effectiveness depending upon the clinical circumstances of patients.Google Scholar
A persisting problem with the versions of the artificial heart currently being tested is the development of blood clots that go to the brain and trigger strokes.Google Scholar
See, for example, Goldstein, L. J., Halpern, J. A., and Rezayat, C. et al., “Endovascular Aneurysm Repair in Nonagenarians Is Safe and Effective,” Journal of Vascular Surgery 52, no. 5 (2010): 11401146; Pasic, M., Unbehaun, A., and Dreysse, S. et al., “Transapical Aortic Valve Replacement Implantation in 175 Consecutive Patients: Excellent Outcome in Very High-Risk Patients,” Journal of the American College of Cardiology 56, no. 10 (2010): 813–820. The average of patients in this study was 80 +/- 9 years. Huber, C. H., Goeber, V., and Berdat, P. et al., “Benefits of Cardiac Surgery in Octogenarians: A Postoperative Quality of Life Assessment,” European Journal of Cardio-Thoracic Surgery 31, no. 6 (2007): 1099–1105. An insightful sociological discussion of these trends may be found in Shim, J. K., Russ, A. J., and Kaufman, S. R., “Risk, Life Extension, and the Pursuit of Medical Possibility,” Sociology of Health and Illness 28, no. 4 (2006): 479–502. See also the case of Hazel Homer who, at age 99, received an advanced pacemaker and defibrillator to assist a failing heart. She was alive in 2008 at age 104. Reported by Hartocollis, A., “Rise Seen in Medical Efforts to Treat the Very Old,” New York Times, July 18, 2008.CrossRefGoogle Scholar
Id. (Goldstein, et al.).Google Scholar
See Blackhouse, G., Hopkins, R., Bowen, J. et al., “A Cost-Effectiveness Model Comparing Endovascular Repair to Open Surgical Repair of Abdominal Aortic Aneurysms in Canada,” Value in Health 12, no. 2 (2009): 245252.CrossRefGoogle Scholar
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See Malin, J. L., “Wrestling with the High Price of Cancer Care: Should We Control Costs by Individuals' Ability to Pay or Society's Willingness to Pay?” Journal of Clinical Oncology 28, no. 20 (2010): 32123214; Fojo, T. and Grady, C., “How Much is Life Worth: Cetuximab, Non-Small Cell Lung Cancer, and the $440 Billion Question,” Journal of the National Cancer Institute 101, no. 15 (2009): 1044–1048. The cost of cancer care is expected to increase in real terms by 66% between now and 2020. See Mariotto, A. B., Yabroff, K. R., and Shao, Y. et al., “Projections of the Cost of Cancer Care in the United States: 2010–2020,” Journal of the National Cancer Institute 103, no. 2 (2011): 1–12.CrossRefGoogle Scholar
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Schneider, B. P., Wang, M., and Radovich, M. et al., “Association of Vascular Endothelial Growth Factor and Vascular Endothelial Growth Factor Receptor-2 Genetic Polymorphisms with Outcome in a Trial of Paclitaxel Compared with Paclitaxel Plus Bevacizumab in Advanced Breast Cancer: ECOG 2100,” Journal of Clinical Oncology 26, no. 28 (2008): 46724678. The reader should know that this article is representative of hundreds of such articles now appearing in a broad range of medical journals, all aimed at identifying connections between genotypes and responsiveness to these expensive cancer drugs. For another example see, Karapetis, C. S., Khambata-Ford, S., and Jonker, D. J. et al., “K-ras Mutations and Benefit from Cetuximab in Advanced Colorectal Cancer,” New England Journal of Medicine 359, no. 17 (2008): 1757–1765.CrossRefGoogle Scholar
See Harris, J., “QALYfying the Value of Life,” Journal of Medical Ethics 13, no. 3 (1987): 117123. Harris is a critic of using QALYs as a mechanism for assessing the value of various life-years that might be saved. He sees this as discriminating against the legitimate moral interests of persons with disabilities. But he also seems averse to respecting health budget limits when it comes to meeting health care needs. He writes, “We should be very clear that the obligation to save as many lives as possible is not the obligation to save as many lives as we can cheaply or economically save. Among the sorts of disasters that force us to choose between lives is not the disaster of overspending a limited health care budget” (at 122).CrossRefGoogle Scholar
See my earlier essay, “The Costs of Caring: Who Pays? Who Profits? Who Panders?” Hastings Center Report 36, no. 3 (2006): 1317.Google Scholar
Credit for introducing this phrase into the literature goes to Jonsen, A., “Bentham in a Box: Technology Assessment and Health Care Allocation,” Journal of Law, Medicine, and Health Care 14, no. 3–4 (1986): 172174. A critical assessment of the Rule of Rescue is offered by McKie, J. and Richardson, J., “The Rule of Rescue,” Social Science and Medicine 56, no. 12 (2003): 2407–2419. See also Cookson, R., McCabe, C., and Tsuchiya, A., “Public Healthcare Resource Allocation and the Rule of Rescue,” Journal of Medical Ethics 34, no. 7 (2008): 540–544.CrossRefGoogle Scholar
Space does not permit a complete description of the democratic deliberative process as I imagine it or of the moral and political arguments that would justify this mechanism as a fair and “just enough” approach to making health care rationing decisions. The interested reader should consult chapter five of my book (2009) referenced above in note 1. In brief, we cannot, as a practical matter, have 310 million deliberators. But the deliberative process ought to be transparent to our 310 million citizens. We could have a broadly representative deliberative group in every congressional district, perhaps with 50 members. These would be enduring groups, working for years into the indefinite future, as opposed to one-time community forums or commission-like groups that might work for a year. This is a “rational” or “informed” deliberative process. That means balanced, accurate, fair-minded information must be fed into these groups relative to specific rationing or priority-setting decisions. Likewise, facilitators of these deliberations must be scrupulously fair-minded. Further, we have to imagine that the work of these 435 deliberative groups would be fed into a top-level independent decision making body entirely distinct from congressional control, immune to deliberative corruption, whose decisions could not be revised through interest group politics in Congress. The closest analogue in the real world with which I am familiar is NICE, the National Institute of Clinical Excellence in Great Britain. They make recommendations to the National Health Service about whether or not, for example, these very expensive cancer drugs ought to be available to cancer patients in Great Britain and paid for by the NHS. For more information about NICE, see Rawlins, M. D. and Culyer, A. J., “National Institute for Clinical Excellence and Its Value Judgments,” BMJ 329, no. 7459 (2004): 224227. See also Maynard, A., Bloor, K., and Freemantle, N., “Challenges for the National Institute for Clinical Excellence,” BMJ 329, no. 7459 (2004): 227–229. For evaluating the quality of democratic deliberative processes see my essay Fleck, L. M., “Creating Public Conversation about Behavioral Genetics,” in Parens, E., Chapman, A., and Press, N., eds., Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation (Baltimore: Johns Hopkins University Press, 2006): 257–285.CrossRefGoogle Scholar
See Fleck, , supra note 1, at 184–195 where I explain in some detail the role and nature of these constitutional principles of health care justice that constrain the deliberative process. One of the roles of philosophers is to take responsibility for articulating these principles and proposing appropriate balancing among these principles when they conflict in specific circumstances.Google Scholar
Knaus, William is the researcher who invented the APACHE (Acute Physiology and Chronic Health Evaluation) prognostic tool, now in its fourth iteration. See Knaus, W. A., Draper, E. A., and Wagner, D. P. et al., “APACHE II: A Severity of Disease Classification System,” Critical Care Medicine 13, no. 10 (1985): 818829. Some recent assessments of the tool in a clinical context and in relation to other such prognostic tools may be found in the following articles: Wheeler, M. M., “APACHE: An Evaluation,” Critical Care Nursing Quarterly 32, no. 1 (2009): 46–48; Schaffer, R., Shrope-Mok, S. R., Probst, K. A., and Iyengar, R., “APACHE IV versus PPI for Predicting Community Hospital ICU Mortality,” American Journal of Hospice and Palliative Medicine 27, no. 4 (2010): 243–247; Zimmerman, J. E. and Kramer, A. A., “Outcome Prediction in Critical Care: The Acute Physiology and Chronic Health Evaluation Models,” Anesthesia and Critical Care Medicine 14, no. 5 (2008): 491–497; Brinkman, S., Bakhshi-Raiez, F., and Abu-Hanna, A. et al., “External Validation of Acute Physiology and Chronic Health Evaluation IV in Dutch Intensive Care Units and Comparison with Acute Physiology and Chronic Health Evaluation II and Simplified Acute Physiology Score II,” Journal of Critical Care 26, no. 1 (2011): 105.e11–105.e18.CrossRefGoogle Scholar
See Fleck, , supra note 1, at chap. five. In this essay I can only offer a very succinct sketch of what rational democratic deliberation ought to look like in practice and what its moral justification is. But I offer an extensive argument in defense of democratic deliberation as the key to a fair rationing process in the entire fifth chapter of my book. The alternative rationing approaches I reject include reliance on market mechanisms, bureaucratic mechanisms of various kinds, and physicians (either individually or as groups), though certainly the expertise of physicians and medical researchers must be part of the deliberative process.Google Scholar
See Daniels, N., Just Health Care (Cambridge, UK: Cambridge University Press, 1985): at 36–58.CrossRefGoogle ScholarPubMed
The research that supports the claim that ABMT with high-dose chemotherapy for metastatic breast cancer is no better than conventional chemotherapy relative to overall survical is presented in: Farquhar, C., Majoribanks, J., and Basser, R. et al., “High Dose Chemotherapy and Autologous Bone Marrow or Stem Cell Transplantation versus Conventional Chemotherapy for Women with Metastatic Breast Cancer,” Cochrane Database Systematic Review 3 (2005): 003142.CrossRefGoogle Scholar
This latter point is essential to emphasize. Cost-effectiveness criteria alone are not sufficient to determine just rationing protocols or just health care priorities. There may be lots of life-prolonging cost-effective interventions that can be provided to end-stage Alzheimer patients but those interventions would rightly be assigned very low priority when relevant considerations of health care justice are taken into account.Google Scholar
The figure refd most often is 18,000 excess premature deaths per year for uninsured individuals between the ages of 18 and 64. If each death represented on average 20 lost life-years, that would be 360,000 life-years lost as a result of being uninsured or underinsured. See Institute of Medicine, Care Without Coverage: Too Little, Too Late (Washington, D.C.: National Academy Press, 2002): At 161–65, Table D1.Google Scholar
I explain my reasoning around this issue more fully in my essay: Fleck, L. M., “Just Caring: In Defense of Limited Age-Based Healthcare Rationing,” Cambridge Quarterly of Healthcare Ethics 19, no. 1 (2010): 2737.CrossRefGoogle Scholar
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Just Caring: Health Care Rationing, Terminal Illness, and the Medically Least Well off
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