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Monday, April 30, 2012

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.  

8 comments:

A said...

Ambiguous identity---that strikes me as very accurate indeed. And the account of the hospitalist in the middle of the night is truly horrifying.

william Peace said...

A. I am sure the hospitalist would argue he was informing me about all possible treatment options. Given how sick I was this could be a viable line of reasoning. He was effective in that he prescribed a medication that relieved the vomiting. To me what took place illustrates a two tiered system exists, one tier for those that can walk and another tier for those that cannot. I was rereading Murphy's book yet again and came across reference to "ambiguous" identity. He used it in reference to liminality which I think no longer holds true.

A said...

I can imagine a very similar conversation taking place in the middle of the night with an (unaccompanied) elderly person who could walk. And I can imagine that conversation not happening at all in the case of, say, a US senator who was wheelchair bound.

william Peace said...

A. I beg to differ with your example of an elderly person having a comparable discussion. That discussion might take place but not with the elderly person. Instead the family or spouse would be consulted. Please do not use the phrase "wheelchair bound". I find it offensive. I am as bound to my wheelchair as bipedal people are bound to their feet.

A said...

Sorry, it was not my intention to offend.

william Peace said...

A. I have no doubt you did not intend to offend. It is an antiquated term that will not go away. I wrote a post about wheelchair bound a while ago. It is one of the most read posts I have put up if the stats are to be believed.

Erica said...

Well, this makes my dalliance with pneumonia look like a cakewalk (pardon the pun). In March of 2000, I ended up in hospital with a case of pneumonia that completely wiped me out. I was not yet in a wheelchair at that point, but using a walker. The hospital bed was so high off the floor, that even at the lowest setting, I could not get in or out of it. The nurses said they could not help me get in and out of bed every time I needed to go to the bathroom so they placed a commode by my bedside. But that was useless to me, as I couldn’t even get to the commode. One nurse said, “You’re 30 years old. You can get in and out of bed yourself.” I said, “Do you see that walker? That is not a decoration. I can barely walk and now I’m weakened by pneumonia.”

I asked to be catheterized but they said that was only for patients who were bed-bound. Hello! I was left with only one option—to urinate in the bed all night. I lay in bed for eight hours soaked in my own urine two nights in a row. During the day, I just sat on the commode. It was too exhausting to transfer continuously from the chair to the commode. That is how I spent two and a half days in hospital.

I had excruciating back pain, something I already frequently suffered from. I asked for a heating pad. A physiotherapist came to see me and told me I had back pain because of spending so much time in bed and that I just needed to go for a stroll. He helped me down off the bed. I took about four steps leaning on my walker and collapsed. I never got the heating pad.

I was told that I was complaining too much so I was discharged from the hospital a few hours later despite the fact that a four-day stay is standard for pneumonia.

It was a nightmarish ordeal that traumatized me. But reading what you went through has sobered me up and made me realize two things: what I went through was a picnic and what I might face in the future could be the real nightmare.

My greatest fear is to be at the mercy of strangers in a medical setting. What the disabled go through when they are deathly ill makes horror films look like fairy tales.

Sorry for the long comment.

Carla said...

William,

I can only imagine the terror of your experience and being so critically ill! As I read your post, several terms popped into my head that have been a recurrent theme for me over the past several months. Those terms are "fractured care" and "unnatural selection". Your experience highlights the shift I have observed as a healthcare practitioner over the past thirty years and the source of my growing dissatisfaction during my past few years of active practice.

Healthcare today is driven by insurance providers and the corporate bottom line of both hospitals and insurance companies. In my opinion, the hospitalist role is much more than the purported provision of another specialist most versed in the care of the hospitalized person. Development of this specialty is also money driven and, in the process, disrupts continuity of care, as you noted the “Marcus Welby” of the past.

As you so aptly point out, hospitalists are disconnected from the people they treat. It is more important than ever that people make their wishes known in prior to need through advanced directives and clear communication with friends and family members in the event of critical illness. As with other areas of care, we have to be our own advocates to protect ourselves from the introjection of others perception of our value in society. The most scary thought is being alone or unable to communicate!

I am angry that you were ever even put in such a situation!!!

Carla