Comfort Care: Killing a Bad Cripple

Last friday an article I have alluded to was made available on line.  Here I refer to "Comfort Care as a Denial of Personhood". My essay can be read on line at: http://onlinelibrary.wiley.com/doi/10.1002/hast.38/full. Please note Wiley, the publisher of the Hastings Center Report where my essay will appear in print later this summer has a very impressive pay wall. To access my essay you must subscribe. I cannot even access what I wrote!  However, I can post some quotes. The essay pertains to the severe wound I had in 2010 and in particular one experience I had late at night.  Let me be clear: I was very sick, critically ill. This is what transpired, an event that has haunted me. I was asked:


"if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.
This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people. The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.
His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live."


I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult. People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be. Harriet McBryde Johnson and Kenny Fries are two exceptions--others exist I am sure. Doctors usually chalk this up to misunderstandings on the part of the patient and sweep such incidents under the carpet.  But as many people with a disability know critical care hospitals are a hostile environment.  I wrote:

"Hospitals and diagnostic equipment are often grossly inaccessible. Staff members can be rude, condescending, and unwilling to listen or adapt to any person who falls outside the norm. We people with a disability represent extra work for them. We are a burden. We also need expensive, high-tech equipment that the hospital probably does not own. In my case, a Clinitron bed, which provides air fluidized therapy, had to be rented while I was hospitalized. Complicating matters further is the widespread use of hospitalists—generally an internist who works exclusively in the hospital and directs inpatient care. The hospitalist model of care is undoubtedly efficient and saves hospitals billions of dollars a year. However, there is a jarring disconnect between inpatient and outpatient care, which can represent a serious risk to people with a disability. My experience certainly demonstrates this, as no physician who knew me would have suggested withholding lifesaving treatment."

When I showed my essay to a friend he was deeply annoyed. He thought what I wrote was counter productive. I was exaggerating the situation. He told me no one is out to get you and you are going to scare people. I replied people with a disability have every right to be scared. While no one wakes up in the morning and thinks I will discriminate against people with a disability, that does not mean discrimination is non existent. I am sure when I saw the film Million Dollar Baby and the audience cheered when the main character, Maggie, was killed I doubt anyone clapping thought they were bigots. But I was shaken to the core--the assumption clearly was one is better off dead than disabled. What exactly does that mean about the quality of my life? The belief one is better off dead than disabled has real life consequences I wrote about:

"people with a disability who publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest. Ironically, who is discriminated against? Those people with a disability who choose to live. We face a great challenge in that society refuses to provide the necessary social supports that would empower us to live rich, full, and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly “patient-centered”—buzzwords I often heard in the hospital. It made me wonder, how do physicians perceive “patient-centered” care? Is it possible that patient-centered health care would allow, justify, and encourage paralyzed people to die? Is patient- centered care a euphemism that makes people in the health care system feel better? When hospitalized, not once did I feel well cared for".

I went on to note:

"What I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it."

When I was stuck in bed at the end of 2010 and for much of 2011 I often thought of my mentor at Columbia University, Robert Murphy whose book The Body Silent changed my life. I had found myself socially isolated and miserable. I did not handle the situation well--my family can vouch for this assessment. Looking back, I realize now I was deeply depressed.  I am far from a social butterfly but being stuck in one's living room for a year will test the inner fortitude of any human being. But the point I am trying to stress is that one phrase from Murphy's book resonated in my head. Those that know me would likely guess liminality but they would be wrong. I realized one important thing when I was in bed. We people with a disability are no longer liminal beings--the ADA has seen to that and this is evidence of hard fought social change. We people with a disability can have a place in society--we are no longer on the outside looking in. We can force others to make "reasonable accommodations".  This is a battle but the law is on our side. However we are far from equal and I would maintain are "ambiguous people", our existence acknowledged but not necessarily valued or wanted. Thus I am convinced the next step in the evolution of disability rights will entail a social battle for recognition. The law is on our side but society is not. We have an ambiguous identity but that by itself is a sign of major progress. I absolutely look forward to what is to come. And today I am thinking life is sweet.