What does a just and caring society owe in the way of meeting health needs to those who are medically least well off? One answer that might be given is that we owe them anything and everything that might yield medical benefit for them simply because they are the medically least well off. How, the argument goes, can anyone with a shred of decency or compassion not be responsive to the needs of those who are suffering greatly and/ or are faced with the risk of death in the near future? Think of the victims of Hurricane Katrina. Many of them have literally lost everything but the clothes on their back. Can we imagine anyone having a serious moral discussion about whether or not we (the fortunate many) really had a moral obligation to come to the rescue of these individuals and provide them with food and shelter and health care and other basic life necessities? However, I will argue in this essay that the analogy with the victims of Hurricane Katrina is an inapt moral analogy that very badly skews our moral judgment with respect to our moral obligations to the medically least well off. More generally, I will argue that we do have justice-based obligations to meet some of the health needs of some of the medically least well off. But the medically least well off as a generic class do not have automatic top priority for having their health needs met, most especially in a world with only limited resources for meeting virtually unlimited health needs.
The cost of undoing the damage done by Katrina is currently estimated to be more than $200 billion. This is the most expensive natural disaster the US has ever experienced. Given an $11 trillion economy, these are costs that are manageable and that we are morally obligated to meet. A major morally relevant consideration is that we can effectively undo most of the harm that victims of Katrina have endured. Also morally relevant is the fact that this is an extraordinarily rare sort of event. If we were faced with one hundred of these disasters every year, then we would be faced with the impossible task of generating $20 trillion worth of aid out of an $11 trillion economy. In the matter of meeting the health needs of the medically least well off we are closer to this latter state of affairs rather than the former.
Who are the medically least well off? There is no simple answer to this question. They represent an extremely heterogeneous group of patients, both in terms of medical conditions and medical prospects. We might say that individuals faced with a terminal outcome in the next few weeks or months are surely among the medically least well off, and we might also say the same of those whose quality of life has been severely diminished by disease or accident, i.e., someone who has suffered a major stroke with permanent cognitive and physical disabilities. This, however, is precisely where our moral problem begins. Is the point of putting all these patients under the single rubric of the “medically least well off” that they are equally entitled to anything and everything in the way of medical resources that might yield anything at all in the way of benefit? Is this what a just health care policy would require of our society?
Imagine two patients who both go into total kidney failure. Both are faced with imminent death in two weeks if nothing is done. One patient is 45 years old and can easily live an additional fifteen years with renal dialysis at a cost of $54K per year. The other patient is 86 years old and in the advanced stages of Alzheimer disease with a probable life expectancy of two years on dialysis. Does justice require that we provide both individuals with dialysis because they are both among the “medically least well off”? This, I argue, is one point at which the analogy with the victims of Katrina breaks down. Providing needed aid to the victims of Katrina will remove virtually all of them from the category of those who are “least well off.” That is, the aid will be effective; and this is a matter of substantial moral significance. Dialysis will also have this effect in the case of the 45-year old patient but it will not in the case of the Alzheimer patient. So I conclude that it would be morally permissible (not unjust) to deny dialysis to the Alzheimer patient, even though dialysis represents two extra years of life for that patient.
My critic might argue that there is a Duty to Rescue (even at great cost) that should govern our behavior in the case of Katrina, and the same duty applies to those who are medically least well off. However, what makes that Duty to Rescue a feasible and actual moral obligation in practice is that such costly rescue events are rare occurrences for a tiny portion of our population who, if the rescue effort is successful, go on to live well the rest of their lives. But if this same Duty to Rescue is applied without qualification to health care, then virtually our entire population will be in need of medical rescue at one time or another given our advanced life-sustaining medical technology (and frequently medical rescue will be necessary multiple times for individuals who are afflicted with several chronically degenerative medical conditions). Further, unlike the whole lives that will be restored in New Orleans the lives “rescued” through medicine today are very often extremely attenuated lives both in terms of length and quality. For example, how morally proud ought we feel about “rescuing” Terri Schiavo from death for fourteen years at a cost of $100,000 per year?
Further still, many of our very costly medical rescue efforts have a very low probability of actually “making a difference” in terms of medical outcomes, and as a consequence, it is becoming more common to spend more than a million dollars per life-year saved. (See the discussion below of Implantable Cardiac Defibrillators [ICDs].) If we had infinite financial resources, then this discussion would have no point. But the fact is that our financial resources are limited. We cannot afford to “rescue” all the life-years that in principle our advanced medical technologies would allow us to rescue. Hence, we have to make choices among lives to be saved, most especially the lives of those who are medically least well off and medically most costly. And we must do this in accord with shared understandings of health care justice
In 2004 we spent about $1.8 trillion on health care in the US, about 15.3 % of our GDP, compared to 5.2% in 1960. Enormous advances in medical technology in virtually every area of medicine have been the primary cause of these cost increases. Many of these advances are very expensive at both the individual level and in the aggregate. If there were a medical intervention that cost $1 million and only ten patients per year needed that intervention, we could not plead poverty as a reason for denying that intervention to those individuals. But bypass surgery costs about $65K and we did about 500,000 of these procedures in 2004. That represents a cost of more than $30 billion per year. We also did more than a million angioplasty procedures at a cost of about $35K each, which yields an aggregate cost of more than $35 billion per year. If each of these interventions represented five to ten extra years of life that were gained for these individuals, that would be a strong morally relevant consideration in support of these costly interventions. But all we know for certain is that these interventions improve the quality of life for these individuals. There may be no more than a very marginal gain in life expectancy for the vast majority of these patients.
I do not believe that the above cardiac patients should be thought of as being among the medically least well off. Here are some other candidates that illustrate the moral concerns I have. Patients in the end-stages of COPD now have the option of lung reduction surgery. This surgery has costs of about $70K and represents a potential extra year of life. We could do 200,000 of these procedures per year. Is a just and caring society morally obligated to provide that? Likewise, patients in end-stage heart failure now have the option of the left ventricular assist device [LVAD] at a cost of about $180K for an extra year of life, maybe slightly more. We could do 200,000 of these procedures as well per year. Is a just and caring society morally obligated to provide that? These are interventions for individuals who are very near to death’s door. They certainly look like candidates for inclusion among the “medically least well off.” Still, I do not believe that is sufficient to generate just claims to the expensive, marginally beneficial health interventions they need.
What about individuals who are at risk of sudden death from a cardiac arrhythmia because of flaws that had developed in the electrophysiology of the heart as a result of medical insults of some kind? An Implantable Cardiac Defibrillator [ICD] can prevent that sudden death at a cost of about $40K each. We will implant 200,000 of these devices in the US this year. In the next four years we could be implanting as many as 600,000 per year. The problem is, according to a recent article in the Annals of Internal Medicine ( 4/19/05) that we ought only be doing about 50,000 per year. These are the patients who are most likely to be saved by this device from an otherwise fatal arrhythmia. At the 600,000 level the vast majority of those individuals will die of something other than a fatal arrhythmia. That is, the device will have done no good at all, which is why at that level the cost per life-year saved is about $1.4 million. At that level total social costs for this device are about $24 billion, as opposed to $2 billion at the 50,000 level. If we funded ICDs only at that lower level, some relatively small number of lives would be lost for lack of that device. But such a loss, I claim, would be unfortunate, not unjust. Again, if we had unlimited resources for meeting unlimited health needs, there would be no point to this essay.
All of the above types of cases represent individuals who might be thought of as being among the “medically least well off.” But, for moral purposes, they are not at all like the victims of Katrina who are “least well off.” By way of contrast, imagine a 25-year old in a terrible automobile accident left as a vent-dependent quadriplegic. The cost of giving him his next year of life will be about $1.4 million. The cost of his next 24 years will be about one million dollars. I contend that individuals like this are clearly among the medically least well off, that they have a strong just claim to $2.4 million worth of care, and that they “fit” the Katrina victim analogy because we have the capacity to restore them to a life they will find worth living. Likewise, imagine individuals who have the most severe and crippling forms of arthritis such that their quality of life would be at the .2 level. Imagine a drug that costs $500 per month that can increase their quality of life to the .8 level. I contend that from the perspective of health care justice we ought to fund such a drug for twelve individuals with severe arthritis before we would buy an extra year of life through lung reduction surgery for the individual with end-stage COPD. My assumption is that we are only adding to the quality of life for these individuals with arthritis, not prolonging their lives at all. My point is that we must make distinctions among the just claims to needed health care for those who are properly thought of as being among the medically least well off.
Consider individuals who are HIV+ whose immune systems have been substantially compromised. They will be faced with the end-stages of AIDS unless they have access to protease inhibitors at a cost of $20K per person per year. Roughly 700,000 US citizens are on these drugs now at a cost of about $14 billion. HIV will mutate around these drugs after several years and require the use of fusion inhibitors, thereby boosting per person per year drug costs to about $35K. High quality extra years of life are thereby gained. It can be argued that these patients are not among the medically least well off, though end-stage AIDS patients would be. Nevertheless, it is not unreasonable to assert that these HIV+ patients in relatively better health have a stronger just claim to limited health resources that will prevent them from progressing to end-stage AIDS than those who are already there who might require $100K worth of care to eke out one extra year of life. In other words, a just and caring and prudent society can rightly choose to invest more resources in prolonging length and quality of life in relatively earlier stages of a degenerative disease process by taking resources away from very costly, merely marginally beneficial life-prolongation interventions in the end-stages of such disease processes even though such individuals are correctly thought of as being among the medically least well off.
I cannot offer in this brief essay the somewhat complex mix of arguments that would provide good reasons that would justify my more controversial claims. What I have tried to show through well-chosen examples is that individuals who are among the medically least well off do not have unlimited just claims to all the medical resources they might need to sustain their lives. Some “quality of life” health needs justly trump “prolonging lives” health needs. I have also tried to show that, among the medically least well off, the just claims to life-prolonging health care are highly differentiated. Some such needs deserve the highest level of priority in the entire universe of health needs while others deserve the lowest priority. That such needs are attached to individuals who are “medically least well off” provides little in the way of morally relevant information for making sound priority judgments.
Finally, as I have argued in many of my essays, this whole discussion is about health care rationing. Often there are no dominant moral arguments that make perfectly clear what is the “most just” rationing choice we ought to make. Under such circumstances we need to appeal to careful processes of rational democratic deliberation aimed at legitimating specific rationing protocols and priorities in specific concrete circumstances. Such conversations should generally occur when we are in essentially good health, when we are generally ignorant of our own future health needs, and when we know that we are likely at some point in the future to be among the medically least well off without knowing the precise details of that future medically impaired version of ourselves. The goal of such public conversation is to achieve fair enough and reasonable enough agreement regarding rationing decisions for our future possible selves, given that we have only limited resources for meeting virtually limitless health needs. That we are making such choices for our own future possible selves minimizes the risk that we would endorse invidiously discriminatory choices against persons with disabilities.