Despite following wound care recommendations to the letter I am in worse shape today than I was six months ago. Sacrificing my quality of life has resulted in negative results. As of today, I have wounds on both hips, my butt and tailbone. I have no where to go to relieve pressure (lying on my stomach is impossible). For 40+ years I have known exactly how dangerous skin woes can be. I have always had a visceral fear of wounds and been exceedingly cautious. Even the most minor wound can send me into a tailspin of depression and fear because I know a minor wound can blossom into a life threatening wound in days. Sepsis can set in and one can die very quickly. I learned all about sepsis in 2010 when a wound almost ended my life. I also learned just how uncaring wound care specialists are. The lack of empathy is shocking to me especially given my work in bioethics where the academic literature about empathy, beneficence, and autonomy abounds. Empathy as a term was first used in 1908 by social scientists. It was not until after World War II and the atrocities committed during global warfare that the term empathy took on great importance. Bioethicists have been researching empathy and theorizing about it's importance for over 50 years now. In my estimation, bioethics as a field has failed to make a practical impact on health care. Worse, we Americans seem to be turning against empathy. For me and many others, empathy is different from sentimentality and pity--these are delivered from a position of superiority and fear. This absolves us from making systemic changes the would benefit all people. Write a check at the end of the year to your favorite charity and one need not worry about the cause you are dedicated to. One's conscious is clear for an entire year.
Empathy in my estimation is the ability to acknowledge and identify the similarity of the human condition and create a foundation of mutual respect. Here I think of Eva Kittay and her new book Learning From My Daughter: The Value and Care of Disabled Minds. Within the confines of our health care system in general and wound care in particular empathy is absent. When I go to wound care I expect nothing--human emotion of any type is not expressed. What is seen is a wound not a human being. When I enter the hospital I feel as though I am entering an iron cage of highly skilled health care professionals who cannot see beyond what is and is not covered by insurance. I get it. To be truly empathic requires hard work, deep thought, and rigorous self examination. No wound care professional has ever done the hard work empathy requires. Thus when I see the wound care doctor I am on an uncomfortable examination table covered with a sheet. Prior to seeing the doctor a nurse removes the wound dressings and leaves the room. My wound is examined by the doctor. Conversation about the wound ensues. My chart is rigorously maintained and everything that takes place is documented in detail. Any discussion of dressings and future care is discussed when I am on the examination room table covered with a sheet. The examination table is uncomfortable in the extreme. I find this unethical but efficient and dare I saw a profitable practice. In some deep dark cubby an actuary is smiling at the efficiency. The wound care doctor can spin rooms at warp speed. What they do not do is express one iota of empathy. No encouragement is offered. No time table given for when one might be healed. I can think of no other medical specialization that is as distant and uncaring as wound care. Every other specialist I have seen wraps up the meeting by talking to you in an office when you are dressed and comfortable--in equal and mutually respectful positions. Wound care does not deem this necessary.
Empathy in health care is now selective. It is reserved for those deemed worthy. No wound care patients are not worthy. Indeed, we are made to feel like the enemy and silently and sometimes directly blamed for our skin woes. We are viewed as uniformly non compliant. Selective empathy when disability and health care collide are a deadly force. I have been bed bound for about six months. Three of the wounds I have are a result of being bed bound. Insurance does not cover anything bed related that would relieve pressure. Insurance covers gauze pads and no other dressing. In the last few months I have spent well in excess of $10,000 on copays, wound care dressings, and various tests. When I bring this up with wound care there is an uncomfortable silence and vague suggestions are made about possible programs I could benefit from. Nothing ever comes to fruition. If I point out the practical flaws involved in wound care the response is silence. The wound care doctor knows I am screwed. I know I am screwed. With four wounds I have no where to go. No matter what I do I cannot relive pressure on all four wounds. This is a lethal problem. The solution is obvious but unaffordable. A clinitron bed or air fluidized therapy would relieve all pressure. To purchase or rent such a bed would cost well into six figures and no insurance company will cover such treatment. For me to access a Clinton bed I would need to become septic. If septic I would be hospitalized and placed in a clinitron bed. Once sepsis is cleared I would be sent home and to the same bed that caused my wounds. An obvious pattern would emerge. Bouts of sepsis, an increasing number of wounds and hospitalizations. Over the period of time my body will weaken, sepsis will become increasingly difficult to treat and recover from. I will likely catch a very bad infection in the hospital and succumb to infection. This is a miserable way to die. It is a human rights disaster that has befallen many a paralyzed person.
If I have learned anything in dealing with wound care it is that disability itself is part of the human condition and doctors are ill prepared to deal with a body such as mine or any person with a disability. The lack of value placed on my care, in this case wound care, is a miscarriage of justice. I feel as though I am an indicator species for our health care system. I serve as a measure of the environmental conditions that exist in our health care system. And believe me when I say our health care system is rotten to the core. Scores of people die needlessly.
My skin woes have made me think a lot about Carrie Ann Lucas the famous disability rights activist who recently died. Her death received a lot of attention in part because she was vocal about what led to the end of her life. An arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities that eventually caused her death. I am going to the same hospital as Carrie Ann Lucas. I have the same insurance company. I assume at some point an arbitrary insurance denial may lead to my death as well. This is a huge problem no one seems to care about. Indeed, Forbes article about Lucas's death was titled "Carrie Ann Lucas Dies at Age 47: You Haven't Heard of Her and That's a Problem". Link: https://www.forbes.com/sites/sarahkim/2019/02/25/carrie-ann-lucas-dies/#37210ca8119e I am certain my concerns about health care, wound care in particular, are not under consideration. Ethics, empathy, beneficence and autonomy, variables that should be of central importance, are utterly absent from wound care programs. And if I note people with disabilities are needlessly dying wound care specialists would deem me hysterical or an alarmist. I get this. All they see is a wound.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Wednesday, April 24, 2019
Worse Wound Care Woes
Posted by william Peace at 2:43 PM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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I'm sorry you are (still) not receiving an appropriate level of care, both for your wound and emotionally. You are definitely more than worthy of warmth, empathy and a proper standard of care. Can we help your voice reach the right people to get you a Clinitron bed at least? You are more than capable and resourceful enough to fight your own battles but when you are in a low spot and feeling vulnerable it's not always easy to be tenacious and relentless. Please do not hesitate to reach out for any kind of support you need with this. You shouldn't have to fight at all to get medical essentials but you certainly don't have to fight alone. I am very willing to help you beat the beauracracy involved, or just be a sounding board, or whatever else you need to help you fight this. Just say the word. Truly.
Posts from September 2010 indicate you purchased a Clinitron bed
Mgabla, I did. When I no longer needed it I sold it. In 2010 I had family support. That is no longer the case.
The lack of empathy in your story, and in the country in general, is frightening. Disability apparently makes us great targets for insurance companies and politicians both. I'm not sure how I might help but let me know if there might be a way.
I don't like even suggesting it but ... fundraise/donations for a Clinitron? There are used ones on the market. I feel like we could raise it easy.
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