Surprisingly, even to me, what I often feel is a certain level of guilt--perhaps because I have been conditioned to be somewhat altruistic--because I know that my levels of income and education, as well as the cultivation of a certain practical intelligence about healthcare, have allowed me to navigate the existing American healthcare system with a certain degree of success. Because I know that my socioeconomic status is the biggest factor in my level of success in obtaining what Robert needs, I feel a sense of responsibility to others who have not been as fortunate.
But then I stop in my tracks and wonder whether, when all is said and done, healthcare reform will really value the lives of disabled children at all. As a friend once noted, Robert is an outlier. As an outlier, his condition and needs will always be dismissed as irrelevant to the vast number of cases. Thus, my reluctance to say anything at all about healthcare reform. To what ends or goals are my thoughts and opinions valuable?
Along with several hundred thousand other persons, I, too, read the Peter Singer article in the NY Times magazine, "Why We Must Ration Health Care." I don't have the time or space to fully replicate his arguments here while I discuss some of his major points, so I've provided the link for those who want to read exactly what he wrote.
Singer makes an excellent argument for placing the topic of rationing on the table by analyzing the ways in which healthcare is already rationed by socioeconomic factors. But the space is too short, and his work (on which this piece is based) too complex for the development of the sub-arguments he attempts.
I find myself nit-picking at statements like this: "If two drugs offer the same benefits and have similar risks of side effects, but one is much more expensive than the other, only the cheaper one should be provided by the public health care program." The problem with the first part of this statement is that it is not universally true. On paper, two drugs may offer the same benefits to a patient, and work on the same pathways, but, human biochemistry being what it is, one drug may be less effective (or not effective at all) in one patient and fully effective in another. If only the cheaper one is paid for by a public health care program, then there will be a subset of people who continue to suffer (or die) due to socioeconomic factors because they cannot afford to purchase the other drug.
Case in point: Prilosec and Prevacid. Both are proton pump inhibitors--that is, both purport to act on the body in the same way. Yet most gastroenterologists will tell you that often, particularly in children, only one is effective. As I've described in earlier posts on this blog, severe acid reflux can cause death in children afflicted with the disorder. Robert has taken both. At one point in his early years, Prevacid was completely ineffective. Without Prilosec, he would have died.
The benefits of our wild west, expansive, complicated health care system and its satellite systems is that research offers horizons almost without limits on cures and hopes into the foreseeable future. To live in a system like this, with your nose pressed to the glass and see a treatment you may not have because, in the majority of cases, it is not cost-effective, is to suffer.
Singer's analysis ultimately rests on the premise that a life has a value--and he offers examples of how American society assigns value in various ways. But his exegesis of how one might assign value to the lives of people with disabilities seems overly simplistic, at the very least. He chooses only one category of disability: quadriplegia, a category of accidental, rather than innate, disability, and proceeds along a nearly incoherent line of argument. The upshot of this, the climax, appears to be the following statement: "we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar."
My response to this is that if two quadriplegics could be restored to a non-disabled life, life expectancies being similar, then two people are restored to full productivity. So how do two lives equal only one in value? Because this statement isn't predicated on the idea that the costs involved in such a transformation are at issue--what's at issue for Singer here, apparently, is the baseline value of a life.
I've tried to read up on Singer on a few websites, just to try to put his statements about the disabled into some sort of context. I had remembered, but cannot find a solid reference, that he believes that it is OK to euthanize disabled children. Wikipedia seems to clarify this (as much as a wiki can be trusted to provide clarity) by stating that Singer argues that certain types of disability can be so severe in children that their parents should have the right to decide that, the quality of the child's life being close to zero, the child could be allowed to die. However, that Singer also believes that if parents decided a child's life is worth preserving, everything should be done to enhance the quality of that life.
So I don't know how to parse his arguments. On their very surface, they run counter to the sort of moral framework in which I have been raised. On the other hand, it can be helpful to have your most fundamental beliefs challenged.
But trying to make parallel the cases of the terminally ill and the disabled seems intellectually inconsistent. And simplistic renderings of Singer's ethics, unfortunately, throw open the barn door to bias and discrimination. His theory of 'interests,' for example, requires an ethical consideration of the disabled. But, if from the outside, from your own personal perspective, you believe that the development of persons with disabilities is not worthwhile, it's easy to manipulate his theories to other ends.
And the ethics of terminal illness and aging, though difficult, are somewhat less fraught than those of the disabled with normative life expectancies. One of the many things that bothers me about Singer's efforts to apply the macrocosm of very broad principles to the microcosm of the individual in the space of a few thousand words, is that the scope of a popular magazine article cannot take into consideration the other societal frameworks and cost frameworks in which the disabled also reside. To assert that one person's life is not worthy of somewhat expensive treatments or any treatments at all is, quite possibly, to throw the cost burden over to a social services infrastructure. So you're just transferring one cost to another bucket. Or failing to measure the impact of the financial care of a single individual on other family members, especially women, who are the primary caretakers of people with disabilities, and siblings. Reducing quality of life for a disabled individual also reduces quality of life for multiple family members.
All of these lives have value, and the simple QALY equation that Singer proposes is simply not sophisticated enough to measure the relative worth of such lives. If it were mathematically possible to measure these things on an absolute scale, a much more sophisticated algorithm would be required.
At the bottom rung of this ladder, at the level of cost-effectiveness, which was Singer's starting point, costs do not simply disappear when it comes to the disabled. And suggesting that euthanasia is the solution to these problems is not morally tenable for most Americans, including myself.
Having embarked upon life, Robert wants to live. Of that, I am sure. I know from observing him all of this time. He has aspirations. He has goals. He has a life expectancy of many years. And yet I know that his life requires multiple, expensive supports. His disability is the result of DNA accidentals. He's an outlier. If my husband and I continue to pay for most of his care, or if healthcare reform creates a situation in which further cost burden is shifted to us because he falls into some eddy of cost "ineffectiveness" and our desire to allow him to have a decent quality of life is considered one of our economic choices, we will face personal bankruptcy, the dissolution of all of our life goals, the cratering of our daughter's quality of life, and, essentially, the substitution of his life for three of ours. Under a purely capitalist system, these are my choices--a capitalist system that would assign a raw value to Robert's life.
Is that cost effective? No. Is it moral? Yes. Under what moral or ethical framework can I abandon him? In this sense, Singer's arguments appear to be the ultimate realization of capitalistic economies--and yet he's flying a socialist flag? Ethically distributed health care for all? Through rationing?
An ethical consideration of cost effectiveness would seem not to try to fit all lives into the same evaluative measure, but to determine a model of procedure for the mainstream, and then alternative add-ons for the outliers.
I don't know that I've arrived anywhere at all today.