Death By Bedsores

Late last month I read an article by Art Caplan on Medscape: "Patients Have the Right to Choose Death From Bedsores". Caplan's article has been discussed in some detail within bioethics. Caplan's article is about an elderly man in his 80s who lived in a  rural area, had one daughter, and lived an independent life until he had a series of strokes. At some point during his hospitalization this man was told he could not return to his home and formerly independent life. He was going to be admitted to a long term care facility. Not surprisingly the man in question balked at this idea. Controversy erupted when he refused to be turned. He knew that if he were not turned severe wounds would develop, grow in size, and eventially become infected. Death was inevitable. According to Caplan the man died in the hospital, with huge ulcers. Basically, his body fell apart, the nursing staff was in an uproar, doctors fighting about whether or not it was right to let this happen. It was quite divisive for the staff morale, and indeed they were investigated about how a person in their hospital could die from infected skin ulcers.

Caplan concluded the elderly man had the right to refuse to be touched and moved even if it would result in death. Caplan thought the refusal to be turned was akin to a patient that refuses a feeding tube or dialysis. This is an interesting point no doubt. However, Caplan really goes off the rails at the end of his essay when he wrote that this man's decision started to affect nursing and staff morale and began to become a problem in the delivery of care for others, then I believe that is a factor that has to be considered when deciding whether to honor what he says. The nurses cannot work if the unit becomes a smelly, untenable mess, and although this man had his rights, other people have their rights too. If I thought the care of others was being compromised by these morale issues and staff problems, I might override a patient's wishes. I might not honor his request in the name of other people's rights. In my opinion, there may be limits to what you can request when it affects the care that others can receive. That is a tradeoff that has to be weighed at all times. As tough as this case was, it provides lessons to take home. Autonomy and patient rights may have some limits when they begin to affect others and the care that others can get. It may be important to think about this kind of dilemma in advance, and be ready to say as soon as a request comes that this is the patient's right, but it is not something we can accept at this facility.

Caplan's conclusion left me shaking my head in disbelief.  Caplan should know better than to pen such a sloppy anaysis. In my estimation Caplan's scholrship is undermined by his penchant for shooting from the hip and pumping out opinions that clearly need to be considered much more carefully. When I read Caplan's conclusion I immediately thought of Susan Schweik's book the Ugly Laws that masterfully details how people with a disability were prevented from begging because their mere presence in public was objectionable. Historically, people with disabling conditions were overrepresented in the ranks of beggars. This undoubtedly distressed those without a disability in the past and present. One word comes to mind when I think about the end of Caplan's essay: outmoded. I find it distressing Caplan is willing to overide a patient's wishes if this person affected the moral of the staff or care of others. This is no mere "tradeoff|" as Caplan asserts. I can readily imagine the implications for disenfranchised populations, people with a disability included. These thoughts bring forth words we now deem antiquated like feebleminded, lame, epileptic, retarded, idiot, insane and many others. And what about the present? Will the presence of a person with Alzheimer's disease affect the moral of the staff? Will such a person who yells out cause distress to other patients? Will this person be chemically restrained to improve moral? And what about a person such as myself who is paralyzed? Could my presence alone cause staff members to be depressed? Could other patients fear my condition is  contagious? Yes, I am using a slipperly slope argument here--something I do not ordinarily utilize.

Caplan's article was likely written to prompt debate. Afterall, he is a larger than life character in bioethics and recently took up a position in the Division of Medical Ethics at the NYU Langone Medical Center in New York. When I heard about this I thought one thing: Caplan wants to live in the media capital of the country. This is not such a bad thing--bioethics as afield is devoted to critically important issues in healthcare. Caplan has positioned himself to be the go to guy when any ethically questionable issue arises. I simply wish he would think before he speaks.

Holiday Cheer? Bahumbug

The Holiday season puts me on edge. Many people act out of character during the season of good cheer. I try to limit my social interactions and avoid any mall like the plague. One thing I cannot avoid is the Salvation Army. The fact is I hate the Salvation Army and the people that ring bells outside grocery stores all December.  Every time I hear those bells I get annoyed and it instantly puts me in a bad mood.  The bells remind this is a bad time of year to be a person with a disability. Charities are out in force and by extension people seem to have an inner urge to help the handicapped. Where I wonder are all these do gooders in the spring, summer and fall? Where are these do gooders when the school budget is cut and the first line items eliminated are for so called special education? Where were the do gooders in the Senate when the UN treaty on disability rights I wrote about was not ratified?  Where were these do gooders when Mayor Bloomberg selected the taxi of tomorrow that is not accessible? Where were these do gooders when I encounter yet another broken elevator or bus lift?

Spare me pity and a charity model of disability.  Charity at the macro level is a form of social repression. The charity model awards power to the giver and suppresses the recipient. If we think of people with a disability as needy this undermines the civil rights model of disability. This is exactly what I was thinking when I was grocery shopping. Yesterday I stopped by the supermarket and as I was roaming the aisles I heard an announcement over the public address system: “A car with plate number XYZ is blocking the handicapped ramp. The car must be moved immediately. The police have been called”.  I would suggest that sort of announcement will only occur in December on the days leading up to Christmas. Ramps are blocked on a regular basis at the supermarket and elsewhere.  Shopping carts often occupy handicapped parking.  This issue is never addressed much less resolved. The sort of sudden interest based on a feeling of doing good for the handicapped is a one shot deal and categorically fails to address the fundamental problem that is ignored by the majority of Americans: disability rights are civil rights.  This depressing assessment reminds me of the slogan piss on pity.  Perhaps I should dig out my t-shirt  with these words and wear it as a shield from do gooders.