Health care is back in the news in a big way. Yesterday President Obama characterized the GOP budget as a thinly veiled form of social Darwinism. Strong rhetoric for sure but also accurate. Republicans are slashing budgets and hurting the people with the least amount of power--people such as the elderly and disabled. Through Paul Ryan the Republicans are waging an all out war against people that are dependent upon Medicare. Republicans want to partially privatize Medicare into a voucher system. Many Americans rely on Medicare, Medicaid and Social Security Disability payments. By rely I mean use this to help pay for prescription medication and wheelchairs. We are not talking about luxuries but rather people's life and ability to function. People like Ryan are playing a dangerous game. The Social safety net is too expensive and poorly run by Washington he cries. Let the states handle it via a voucher system. What Ryan is not stating is that many states are broke. Moreover states can use the money any way they want.
After I read the President's speech I came across an article by Daniel Callahan, "Must We Ration Health Care for the Elderly" in the Journal of Law, Medicine and Ethics. Bear with me as I will get to the connection. Callahan is a major figure in bioethics. He helped found the Hastings Center and is a prolific author. He is also a kind and generous man as I have been fortunate enough to meet him. I have read much of his work and cannot make heads or tails of what he wants. Sometimes I shake my head in wonder and think he wants me and other people with a disability to be dead. We are a serious drain on the economy. Yet, there are other times when he is spot on and I agree with much of what he writes. For instance his views on technology in medicine are thought provoking and I agree with much of what he wrote in his book Taming the Beast. No doubt the health care system is overly reliant on expensive technology. For example, I think we can surely pass on expensive exoskeletons and invest heavily in wheelchair technology.
So what did Callahan have to say about rationing and the elderly? First he considers rationing to be "an organized effort by a public or private institutions (e.g., Medicare or a private insurer) to equitably limit the availability of some desired or needed medical treatments in the name of preserving the economic sustainability of the institution as a whole or equitably distributing a scarce resource." Obviously the key word here is "equitably". Callahan goes on to state:
"First, rationing should be done by policy, not by individual doctors and patients at the bedside. There would otherwise be too much variation in decision making, discrepancies between doctor and patient values, and the possibility of physician bias. Rationing must, that is, be removed from the ordinary doctor-patient relationship and shifted to the policy level. Second, policy must be set by democratic process (which could be accomplished by Congress delegating responsibility to a federal agency). Third, the policy must be carried out in a transparent way. Fourth, there should always be a provision for appeal."
I agree with his first point. I have been subjected to physician bias and it is not only wrong but dangerous. I depart from Callahan on his other points. For example, point two. The democratic process is far from equitable and people with a disability are not part of the discussion that takes place in congress. With regard to points three and four, at a theoretical level I agree. But I do not live in a world of theories. I do not believe any policy will be transparent--well maybe to law makers and lawyers but not to your average person and especially not your average person with a disability. As for appeals, great. Let me just ask how long and involved will they be? Let's say you are turned down for a high end wheelchair cushion and need to use a cheaper alternative that was considered to be adequate. You get a skin breakdown, a bad one. The skin that heals will never be the same. Never.
Callahan also advocates the use of QALY used in Britain. Quality Adjusted Life Years are economically proven to save money. Callahan stated QALY "is a leading means of assessing the cost effectiveness of a treatment. Its use requires careful evidence-based research, which in the U.S. could be provided by a federal agency. Instead of contending as I did in my book that an age would have to be specified for setting limits, I would now use QALYs to determine (but not solely) what they would be, thus using a methodological tool applicable to all age groups." Great but using QALY would establish my life has far less value than a person that can walk. Yes, my life is not as valuable as a person my age who can walk. So who gets treated? Not my crippled ass.
Ryan and Callahan are thinking at a national level. I am not such a thinker or politician. I am a grass roots sort of person. I study culture and how it affects people's every day life. From this microcosm I make observations about the lives of the people I study and where they fit in culturally. There is no doubt in my mind if Ryan's GOP budget is enacted the elderly and disabled will suffer. I am equally certain if we follow Callahan's suggestion on rationing I fear what will happen to the elderly and disabled. Most troubling is Callahan's desire to use QALY. Yes QALY will save a significant amount of money. No doubt about the savings. But at what cost are we saving? I for one do not accept the fact my life has less value than a person who is not paralyzed. Why there is even a law that states this--that pesky legislation know as the ADA. Ryan and Callahan make me shake my head in wonder. What ever happened to equality?