Medical Ethics are Doomed to Fail and We all Suffer

This weekend was great--I got my kayak out on the water for the first time Saturday. I had a fun and the highlight was seeing a bald eagle. I wanted to kayak on Sunday but it was too windy. Instead I went for a drive to scope out where I can access to the Hudson River (getting to the water is the hardest part of kayaking). While I was out I decided to figure out where the Hastings Center was located as I knew it was near the Hudson River. For quite some time I have been reading the Hastings Center Report. The Hastings Center is one of the foremost centers for medical ethics and has an outstanding reputation in academia. While I disagree with much of what is produced by the scholars in residence, I cannot dispute their reasoning. The work published is top notch and thought provoking. Earlier this year I was inspired to apply for a short term visiting scholar position. Much to my chagrin I was accepted. I had thought my strident views and support of disability rights as well as comments about Ashley X over the last two years would preclude my acceptance. I was wrong and look forward to next January when I will start my work at the Hastings Center.

At lunch time I found a great place to eat that overlooked the Hudson river and spent my meal finishing up a book I thoroughly enjoyed. The book in question, A life Worth Living, by Robert Martensen, a physician, historian, and bioethicist is worth reading multiple times. Martensen is a wonderful writer. He has the ability to take a complex subject, provide a specific case study, and analyze the larger ramifications of the medical decisions made. He obviously cares deeply about the patients he treats, those he works with, and is by no means a hack for what we call the health care industry. What Martensen did, what I suspect is his gift, was to make me think and evaluate the cultural implications of high tech medicine. In the olden days when I was sick high tech medicine did not exist. Children and adults with neurological conditions died at an alarming rate. Neurology was in its infancy, pun intended, and the ethical conundrums we are faced with today did not exist. Thus Martensen reinforced something anthropologists have known and written about for a long time: culture change always lags behind technological change. This is particularly evident in hospitals today where ethical issues pertaining to life with a disability are becoming increasingly common and difficult to entangle.

Like Martensen, I think our health care system is profoundly flawed and that people needlessly suffer and die. Those most vulnerable include people with a disability, children, and the elderly. The fact is being young, old or disabled is costly. Only one group of this troika is valued--children. The elderly and disabled are not valued and too often shipped off to a nursing home or rehab center. This undoubtedly saves lots of money but can also needlessly hasten the death of people sent to what Harriet McBryde Johnson called the disability gulag. Organizations like ADPAT, Not Dead Yet, and the Disability Education Rights and Defense Fund work hard to insure the elderly are not encouraged to take advantage of assisted suicide laws that have passed in some states. ADAPT champions the Community Choice Act and seeks to eliminate the nursing home bias. What these organizations do not advocate is the the rights of children. This is the job of parents and the vast majority do a good job when confronted with caring for a profoundly ill child. Parents are given an exceedingly wide latitude in medical settings. But some parents do not excel when confronted with a sick child, one who will have life long disabilities. A case in point is the Ashley X whose story I have followed and written about for two years.

What struck me about Ashley X is the bewildered initial response of the doctors that performed what Ashley's parents dubbed the "Ashley Treatment". People were outraged by what was done to Ashley X--myself included. I wondered how parents and doctors could device such an elaborate and medically unnecessary protocol. Two things have remained at the forefront of my mind: first, the Ashley Treatment would not be considered for any other human except children that have profound physical and cognitive deficits. What does this say about our culture and people with physical and cognitive disabilities? Second, how could the men and women that formed a medical ethics committee approve such a radical treatment? Surely someone must have pointed out there are social and practical answers to the parents concerns about Ashley X. The first point is fodder for debate while the second is not. The medical ethics committee failed Ashley X. They were in my opinion swayed by Ashley X's powerful father who advocates on behalf of other "Pillow Angels" via a highly public blog. This is, of course, easy for me to write. I was not confronted with two determined parents and peers who came up with the idea of attenuating the growth of a child not to mention giving her hormones and removing her uterus and breasts. As I have written before this was a radical intervention to solve a problem that is social.

The question remains: why, why didn't the medical ethics committee say no? This question gets me back to Martensen's book and his discussion of how the most vulnerable people are treated. Martensen details his experience as a "chief ethics officer" at a major hospital. It was not a job he wanted but rather one that was added onto his existing responsibilities. The position was in his estimation created to help the hospital recover from a previous ethics scandal. Much to Martensen's surprise the position came with no power or clout. There was not a system in place to prevent future transgressions. Moreover, no one, doctors and administrators in particular, wanted a committee evaluating their morals and ethics. Why then do these commitees exist? According to Martensen

"Unless something goes seriously wrong--or rather, unless something serious goes wrong that the public might find out about--an ethicist's actual functions tend to be ornamental and cosmetic. During the two years I held the post of chief ethics officer... I lived with the expectation that if something from the organization's murk should bubble into public view, I would at best be charged with cleaning it up, at worst be the designated fall guy".

This revelation is deeply distressing. It also makes me wonder about the value of informed consent and internal review boards. Do they exist to insure ethical decisions are carefully considered or do they merely legally protect an institution from potential scandal. If Martensen is correct, the actions or lack of action taken by the ethics committee in Seattle that approved the Ashley Treatment was understandable. It also makes me wonder if the agreement the hospital reached with the WPAS was designed to protect children like Ashley or simply cover the institution's legal liability. These are the sort of issues I look forward to tackling when I am at the Hastings Center. It is also why I feel a little bit like a Christian about to be thrown in with the lions.