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Sunday, September 1, 2013

Bioethics and American Society Has Lost It's Way

I have spent much of the weekend reading Tom Koch's book Thieves of Virtue. Koch is about as cranky a scholar as humanly possible. His crankiness holds great appeal to me. I am after all a bit on the cranky side myself--not much of a shock given my moniker is bad cripple.  While I am by no means an insider when it comes to bioethics, I suspect when Koch shows up at an academic conference and speaks I bet there are some scholars that likely inwardly groan. By itself, this makes me like Koch as I find the formulaic politeness many bioethicists practice unsettling. Koch's crankiness is evident on every page of his new book. I get why Koch is cranky. In fact he has every right to be.

There are passages in Koch's book I find remarkable and thought provoking. For instance, the Introduction begins with the following: Bioethics was supposed to be about you and me, about people and the medicine they receive, or desire. It was to be a tool with which individuals and the societies they inhabit could answer questions of medical practice and the research that sometimes puts those politely called human subjects at risk... it was to be a public service that brought a specific kind of analytic, moral philosophy to questions of medical care and delivery... The result would be, its progenitors promised, a set of generally applicable, universally accepted ethical guidelines at once intellectually and morally robust.  The realities of patient care and treatment (or nontreatment) were the medium of that experiment... Medicine is about how to do things; bioethics was forged to decide whether we should do them and if so, when and to whom. Well that plan did not work out as expected. And I will put it even more bluntly than Koch--bioethics has been hijacked. Like Koch, I am disillusioned in that somewhere between the 1960s and the present bioethics began to consider medical care to be a commodity. Our health care system many bioethicists correctly state does not have infinite resources. Here is where bioethics goes off the rails. Medical care is expensive and its practice cannot be based on human compassion but rather on economic efficiency. Koch calls this "life boat ethics.  Scarcity is a given requiring ethical triage. In this door enters scholars such as Peter Singer and a parade of utilitarian philosophers.

Way back when I went through the medical mill (1969 to 1978) I cannot recall a single person bemoaning the cost of health care. Of course I am looking back through the eyes of a young boy so my statement must be taken with a grain of salt. Yet even as a boy I was acutely aware of the fact I was morbidly ill. Pediatric neurology as a field was established a mere two years before I showed obvious signs of profound neurological deficits. There was not much to be done. Modern imaging and diagnostic testing did not exist. In the absence of modern technology we take for granted I would speculate I was among the last generation of people (patients) who were shown great compassion.  Compassion still exists (or I hope it does) but things are different. Technology, expensive technology, rules medical care. I am not at all sure how progress is perceived now. Likely it is the introduction of some sort of new technological gadget  that improves a profit margin. Do not get me wrong--cool gadgets such the wound vacuum and air fluidized beds, ultra light wheelchairs, etc are nothing short of awesome. I am a direct beneficiary. But as any anthropologist will tell you there is always a down side to technological innovation.  This is where I think bioethics has failed spectacularly. A history lesson is needed.

Between 1951 and 1953 polio pandemics swept the world. Parents of young children were terrified of the disease. In one year amore than 60,0000 people contracted polio in the United States alone. Our health care and social systems were mobilized to care for those that got polio. School gyms were turned into wards. Negative pressure ventilation machines, iron lungs, were invented. These machines were considered a great advance in health care. Everyone knew the iron lung was not a cure to polio. Everyone knew the iron lung would not return a person that had polio to normal.  Everyone knew people with polio might need life long care. Hospitals and rehabilitation centers for crippled children sprung up in every corner of America the most famous of which was Warm Springs.  Koch insightfully observed:

Nobody asked about the cost of new technologies that permitted patient survival. No one warned that the continuing care and rehabilitation for those left with withered limbs would be economically unsustainable. Nobody suggested that the folks saved by these extraordinary interventions would be a social burden whose public cost of care could never be recovered. Nor did anyone whisper that the long-term severity of even the best-anticipated outcomes would leave the afflicted with a quality of life so intolerable that... they would be better off dead. Medical and social ethics demanded society and its physicians do all that was possible to save and, after saving to help rehabilitate polio's fragile survivors... Cost was not an issue because to not spend the monies, to not save the poliomyelitis patient, was unthinkable.

Wow. Unthinkable.  To not do our level best to care and rehabilitate the ill, ill in larger numbers, was unthinkable. Money was not a consideration.  Insurance companies did not dictate care. This line of logic no longer exists. We do the unthinkable every day. We discharge patients from hospitals as quickly as humanly possible. The men and women charged to do this are called hospitalists who are ethically compromised. They answer not to the patient but the institution where they work. For those seriously ill and in need of rehabilitation had better recover quickly as a few weeks of rehabilitation is the best one can hope for. The elderly who have a stroke have mere weeks to recover and then are sent to a nursing home. A young person who experiences a traumatic spinal cord injury gets a few weeks of rehabilitation and are then sent to live with their parents or a nursing home. To me, these scenarios that play out every day and coast to coast are unthinkable. To me, this is a social failure that costs the lives of a multitude of vulnerable people. People very much like me.

I find it ethically unacceptable that the traditional goals of medical care (medical care in the best interests of the patient) has been abandoned. In its place we as a society have embraced a faustian bargain in the form of socially acceptable utilitarianism. Again, enter Peter Singer and insurance company bean counters. Grandma is dying, what difference does a few weeks make? The amount we could spend on her care is better spent paying her grandchildren's tuition bills. A man experiences an upper level SCI rendering him a quadriplegic--who wants to live a life like that? Let's let nature take its course. A woman gets a prenatal diagnosis of Down Syndrome and at the same time is given a date to terminate her pregnancy. Is this a choice? I think not. I surely know what is wrong with our health care system but I have no idea how to fix the problem. Koch's final chapter offers a way to proceed via complex ethics and presents some interesting alternatives. I have no idea if Koch's forward thinking final chapter is a way out of the unacceptable situation our nation is in when it comes to health care. Perhaps the Affordable Health Care is a step in the right direction. I do know the ACA can not in the long term make how we deliver health care any worse than it is today. Maybe I am perfect for the field of bioethics. I have just written a post and failed to  present a single possible solution.  Now this thought bothers me and believe me it does.


Dr. Dan's Daffy Deliberations said...

Your commentary on the tectonic shift in bioethics from a primarily caring paradigm to a purely economic orientation focused on risk/benefit ratio of the use of increasingly expensive technology, is right on point & mirrors my thinking and experience as a person with a congenital disability! I downloaded that reference in iBookstore & am beginning to read it. Thanks for showcasing it. Even if there are no ready answers, the best one can do is to simply frame the right questions.

Eric Fischer said...
This comment has been removed by the author.
Eric Fischer said...

I think in the example of the down syndrome diagnosis you don’t go far enough, surely it will soon become practice, if not in the USA then in European countries like Denmark, that a couple refusing to abort will be penalized in some way, perhaps even denied certain services.

I do think that the view that the “unthinkable” paradigm has not disappeared as much as you might think. It seems to me to be have undergone a shift. Rehabilitative care may no longer take months in Hospital simply because specialized rehabilitation hospitals/institutes were established to take their place, this is at least the case in western Europe, perhaps excluding Great Britain where the situation for the disabled has become dire indeed. Although you might think, that is all good and well but you, Bill, are concerned with the USA and so it isn’t all that relevant what happens in countries such as France or Holland. After all the model in Europe is universal healthcare.

So then the question becomes, why can’t that work in America?
The second point here is that those specialized centers or nursing homes have been quite in the news the last few years as being directly and indirectly responsible for patient deaths. Rehabilitation centers may provide quality direction for the short time people are there but then doesn’t the problem lie with the private insurance carriers? A shift to universal healthcare would at least make an attempt to solve that problem. I have seen that Americans seem on the whole to think that universal healthcare was thought up by one of the devil’s minions, but how much has it been studied? I’d like to know your impression of that particular concept because I don’t know if the Affordable Health Care act is the same thing.

Finally I didn’t understand the number of polio cases, 60,0000. Is it 60,000 or 600,000?

william Peace said...

Dr. Dan, The economic paradigm has evolved and become increasingly entrenched with the ever increasing complexity of health care. I honestly do not know what to suggest. I suspect you will really enjoy Koch's book.
Ercic, With regard to the example of Down Syndrome. 93% of women terminate a pregnancy when they get a positive prenatal test result. If a woman chooses to continue a pregnancy or refuses to have prenatal testing done she is stigmatized by health care professionals. She is likely to be perceived as selfish or a religious nut who is more concerned with religion than common sense.
I am very much an Americanist in part because cultures respond very differently to disability as you know. I am not suggesting a return to eight or nine month or over year long rehabilitation stays. I think some people with a new SCI can figure things out quickly and thrive shortly after injury. But this is not the norm. Longer stays can only increase wone's knowledge base. And the fact is paralyzed people learn far more than their peers than any MD, PT or OT. The reason we are currently failing to prepare people post injury is money. Insurance will not cover longer admissions. And this will in the end prove more costly as the odds of being re admitted are vey high now post rehab. People do not have the knowledge or experience to care for a disabled body. This takes time. A commodity that is quite rare.

Julie H. Rose said...

I haven't read Koch's book and I've just ordered it from interlibrary loan. I have a different take on this, not that I see any flaws in what I've read here:

I recently went through a series of medical mishaps (nothing new, just more life threatening this time). It could have easily avoided. I realized that if a simple G.P. had done an old fashioned physical exam (cost effective! Ding! Ding! Ding!) on me, I could have avoided the costly MRI, 3 EMTS, ambulance, who knows how many doctors, nurses, and whatnot in the ER. But, the docs are trained to send people to the Big Expensive Machines. This profits big corporations. It's just like the war machine. It has nothing to do with cost effectiveness. That's a ruse. The bioethicists don't see out of their specialty far enough to see this is simply a problem of capitalism.