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?
7 comments:
It comes right down to the fact that people do not like to subsidize other people in ways and to the extent they are not directly and currently being subsidized themselves. The problem with disability is not the disability itself but that too many of the disabled cannot support themselves. People do not want to support them. I run into this all of the time. If a loving family member want to pay and take the time to care for a disabled loved one, that's up to that member. Others do not want to pay or have part in it by being inconvenienced in the least. We are a very selfish species that way.
Health care is already being rationed but not in a systematic way. It's a matter of how wise you are in terms of getting the most appropriate care and how connected you are to someone who is savvy in this that determines what you get. Those who are savvy do not want a level playing field because it would make it more difficult for them to get the care they are getting for self and loved ones. Those who are not, just don't want to pay for others. They feel they are "taxed" enough. That is really the way it works right now.
In the UK, QALYs are used by NICE (the National Institute for Health and Clinical Excellence) to ration the use of expensive drugs according to what is most cost-effective in terms of prolonging life and the quality of life that will be afforded, not to discriminate against already physically disabled patients (this would cause outrage, particularly if it were policy - there is a risk of neglect for some disabled patients, but these are mainly those with intellectual disabilities, mental health problems or certain chronic diseases).
Generally, drug rationing becomes controversial when they refuse to license a new and expensive cancer drug which is not a cure, but will prolong the life of a terminally ill patient by a few months, and this will use money which could be used to save lives, or improve them on a long-term basis (this was the source of the "NHS death panel" nonsense spouted by Sarah Palin a few years ago). The NHS actually provides wheelchairs and funding for patients to buy their own, something it might not be able to do if it did away with QALYS and bowed to media pressure to provide every cancer drug ever invented.
Catherine, I agree health care is already being rationed. In the USA this is left up to the individual. I have rationed my health care for a long time as do many others with and without a disability. As for your comments r.e. "subsidizing", I would remark most people do not care about families with a disabled member. Indeed, most people do not care about the lives of people with a disability. They are seen as costly burdens. I find it ironic that people will howl in protest if a parent is paid (subsidized) to care for their child. The alternative, paying a stranger of greatly varying quality, costs a small fortune.
Matthew, Always delighted when you comment on a UK based issue. A native viewpoint is greatly appreciated. I should know more about QALY. It is a polarizing issue in the Sates--think Palin's simplistic reference to death panels. I do not doubt your observations about QALY being related to expensive cancer treatments and such. However, I find it highly unlikely that a man or woman with a SCI is treated equally as a man or woman without such an injury. It does not happen in the USA nor in Britain. QALY filters into the culture of health care. As for wheelchairs, I have no doubt they are provided for people that need them. But what sort of quality are we talking about? I can buy a wheelchair for $200 or $35,000 for an motorized chair. The range and needs range wildly. I doubt most get the wheelchair that really suits their needs.
To be honest I don't know if discrimination against patients with SCI ever happens, but it's certainly not a matter of policy. Most of the disabled people I know have chronic illnesses such as ME and Ehlers-Danlos Syndrome, a connective-tissue disorder which affects people to varying degrees, sometimes being extremely painful and very disabling (requiring wheelchairs, ventilation and tube feeding). They report a lot of dismissive and abusive treatment and a struggle to get their condition accepted and appropriate treatment offered. Often their condition (particularly ME, and EDS pre-diagnosis) is dismissed as psychological. An articulate adult with SCI or something like muscular dystrophy - uncontroversial and easily testable physical disabilities - is at much less risk. It also depends on the attitudes of individual consultants and the culture in a particular hospital.
As for what types of wheelchairs are provided, again, it depends on the person's disability and where they live. There is a voucher scheme in which the NHS will pay part of the cost if the disabled person wants to buy a more expensive wheelchair than the NHS can provide, but in that case, the owner is responsible for any maintenance. The NHS is unlikely to pay for a top-flight wheelchair, particularly a power-chair, but they will provide things like appropriate seating. Also, you have to be unable to walk, so if someone can just about walk but it will cause them extreme pain and fatigue (as with one lady I know with MS), they are on their own.
Matthew, I would suggest any person with a disability is at risk when accessing health care. I know that is exactly how I feel. Many I know express serious reservations about hospitalization. All I know consider the health care system to be hostile to people with a disability. I do not know enough about the British or Canadian health car systems. Hence, I really appreciate your comments. I do know I admire the UK based disability rights movement. I think it is more active than US based groups. I may be wrong about this as this is a gut feeling. Wheelchairs are crazy expensive. A good manual wheelchair is about $5,000 and does not last long when used rigorously. The power wheelchair cost as much as a new car. Was very interested in your comment about seating. Seating clinics in the US have long waiting lists and insurance is loath to pay for anything beyond the most basic cushion. Frustrating in the extreme. I know of only one company that does high end customized seating in the USA. It is where the leading paraolympic athletes go.
William,
In reference to Cathrine's comment, I would say that the reasons most PWD "cannot support themselves" are many and far reaching.
In addition, those of us who access SSI and Medicaid supports are at this time effectively cut off from the means to do much in the way of saving to pay for supports privately, due to Draconian restrictions placed upon how much we can legally save.
Nessie
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