Bill Peace wrote the following article and published it on his blog on July 31, 2013.
By Bill Peace - Link to the original article.
I was paralyzed in 1978. As my son would say that was a long time ago--the olden days in his estimation. Without him around my summer has seemed disjointed. Nothing has worked out quite like I had hoped and I have been preoccupied with the Fall. I start teaching August 26 and I will hold two classes before Labor Day, the unofficial end of the summer. I am nervous too. I will be teaching honors students at Syracuse University. My class, "From Prenatal Testing to Alzheimer's: Issues in Bioethics and Disability" is new and my first firmly rooted in bioethics. I veered head long into bioethics in 2006 when I heard about the Ashley Treatment or what has become known as growth attenuation. I was stunned in 2006 and remain stunned in 2013 that such a procedure could be performed. How I wonder could an ethics committee allow this to happen? My interest in growth attenuation led me to delve deeply into assisted suicide legislation and this has rekindled a long dormant interest in what happens to people after they become paralyzed. I am now troubled not only about the larger cultural push to accept assisted suicide but also the severely limited amount of time people who experience a sudden spinal cord injury are given to adapt to paralysis. Add to this a rapidly expanding elderly population and increasing reliance on medical technology to prolong life, an absolute lack of care about vulnerable populations, and a toxic social situation has been created.
The noted bioethicist Daniel Callahan has written about our over reliance on medical technology in Taming the Beast, a book I highly recommend. Callahan notes that many directly benefit from advances in medical technology but there is a down side--something anthropologists and archaeologists have often observed about many societies, complex and simple. High tech medical care is not cheap and is in fact highly profitable. One corporation that has created a cash cow is the wound vacuum. 7 million people world wide have used the wound vacuum. There are 42,000 units in service, and KCI, a company I quickly learned to despise when I used a wound vacuum, has a 1,000 member clinical sales team. There is no question my wound healed more quickly because of the wound vacuum. What KCI and other corporations that produce high tech medical products do not want consumers to think about is cost and what happens when a company like KCI owns a virtual monopoly on wound care. Yes I benefited from the wound vacuum. It is a spectacular invention, has saved many lives, and revolutionized wound care. But I was also ground down emotionally and financially from the use of the wound vacuum for an extended period of time. What keeps me up at night, what makes me worried about elderly people, the terminally ill, chronically ill, and disabled is the impact high tech medical care has on a human being. This was a hard lesson I learned in 2010 into 2011. I received outstanding medical care, saw superb wound care specialists, met a skilled surgeon who followed my wound care from beginning to end, and am deeply indebted to my family who were more supportive than a person could possibly hope.
So here I sit at my desk fully healed and I can safely say 2010/2011 was the worst period of my life. I am a fundamentally different person as a result. Bodily my life was saved by the wound vacuum. My confidence however was shattered in the process. My body took a year to heal but my mind is still very much a work in progress. Always interested in marginalized populations as many anthropologists are, my resolve to inject a dose of humanism in medical care and bioethics has reached new heights. I am deeply disturbed by how vulnerable people are treated. I am not suggesting the medical system, even a for profit system that exists in the United States, is designed to grind up and knowingly kill vulnerable people. KCI wanted my wound to heal as did I but at what cost? More generally, how do we frame illness for the poor, elderly, and disabled? Are we as a culture willing to empower such people and help them heal? Are we willing to seek the best possible care for all people? In a word no. Surely I am exaggerating the situation. Sorry but no. The medical industrial complex is a hostile place for those that are different and costly. Of course no institution or person will admit to such hostility. It is always framed in socially acceptable language. For example, the buzz word "patient centered care" is often used in and outside of a clinical setting. To me the true meaning of the words "patient centered care" are sorry but you are on your own. Enter stage left a supposedly informed and objective health care provider who will explain your options and let you make your own decision. This I am sure sounds great in an office, a corporate boardroom, or at an academic conference. The clinical realty is quite different. For instance, does a paralyzed person really have a choice about using a wound vacuum if its use is not covered by health insurance. Last I checked a wound vacuum costs $130 to rent per day and this does not include the cost of nursing or wound dressings which are significant.
Further complicating "patient centered care" is the concept of "joint decision making". In theory it is easy for a physician to suggest the best possible care for a patient. In theory such decision making strategies should be reached with equal input. The physician acts as expert guide and the patient is empowered to put plans jointly decided into practice. I am sure a flow chart exists somewhere that beautifully illustrates this mythic equality. Excluded from this supposedly joint decision making process is the biases and preconceived notions the physician and patient may or may not have. The reality of joint decisions often falls far short of ideal. For instance, physician and patient agree that a person with a SCI and recently healed wound should relieve pressure throughout the day. This is sound advice. But what happens if the person with a recently healed wound is required to work all day and care for a family. Will an employer be willing to provide a reasonable accommodation under the ADA by letting the person in question lay down on a futon at work? Not likely--a point made by Lenny Davis in his essay "Bending Over Backwards". Let me expand on this example. The person in question decides he or she must work. They push their body knowing their skin will breakdown. And let's say their skin does in fact breakdown. This person returns to the local wound care department. The physician and staff are not happy to see this person return. It is reasonable to assume this patient will be deemed a non-compliant patient. What will not be charted is why the person has fallen into the stigmatized category of noncompliance.
When I express my views about how people with a recent SCI are set up to fail people are shocked. When I express my views about end of life issues and how vulnerable populations are at risk I am accused of being an alarmist. The cartoon above however is not too far from the truth. When it comes to disability those I know who have successfully navigated life all were willing to adapt and be creative. Society's unwillingness to negotiate difference could be considered a failure of imagination as my friend and poet Stephen Kuusisto puts it. He is being too kind. Powerful forces exist that grind people down at a glacial pace lowering and lowering their expectations, hopes and dreams. The spirit of people with a disability and those nearing the end of their life, two different but vulnerable populations, are being crushed by an at times cruel health care system. How does this play out int he real world? Well people with a SCI are not given the time or skills needed to survive a hostile social environment. Instead, they are encouraged to use an exoskeleton, think about stem cell treatments that virtually no one can afford and are not proven to be successful, and participate in various clinical trials. Yes, money has perverted traditional rehabilitation efforts--basic hard work that helped one refine their ADLs. The result is a person suddenly finds their living situation intolerable years later. No job, no work, and no quality of life. This is a social failure of epic proportions and hence the reason the above cartoon made me laugh is because it reflects a reality that exists.