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Wednesday, July 31, 2013

Assisted Suicide and Medical Technology: A Social Failure

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 noncompliant 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.


Unknown said...

There is no doubt that disabled people are being mistreated on a daily basis in the hospitals.

Your last comment made me think of two things that I would have never thought would co-exist in the same sentence from me. The ridiculous notion that people with SCI should benefit from either the absurd contraption, known as the ‘exoskeleton’ or from stem cell research made me think. It’s the American dream – no, no, it’s Karl Marx’s idea of “opium for the people”!

And honestly, it’s both. It’s the American dream in the sense that it purports ‘everyone can get a lucky break’ but guess what, 99.99% never do. They are stuck with their shitty situation till they become worm food. And the lucky break that people believe in is the proverbial ‘opium for the people’. The American dream of ‘making it great’ is what holds us enthralled and absorbed while we spin the hamster wheel of the daily grind. It is what keeps us asleep.

It’s people like Badcripple who cry out that might help us all wake up one day and say enough is enough.

Sorry for the lack of disability related content in this comment. I just wanted to frame the issues in a larger perspective. I see no problem in making money from health care, but when companies are actual or virtual monopolies their sense of ethics becomes vaporous at best.

TokenGimp said...

I used KCI's wound vac for 6 months and still required surgery.

I wonder how long it would take for better treatment if cures were rewarded verses continuing care?

Unknown said...

POWERFUL stuff!! Thanks so much for some impassioned and honest words, and as an SCI injured for 22 years I couldn't agree more. Also in 2010, I experienced an issue with a pressure sore. It was actually my first experience ever, which I've felt very lucky about, but had me really worried. After weeks of no improvement just using traditional methods a wound vac was recommended. I was adamant to the surgeon that he didn't understand..I have to sit potentially the rest of my life. A wound vac (a more invasive procesure) was going to affect me maybe for years to come. I soon after discovered a change in my seating that was causing the sore, and after correcting it began to see the sore improve and eventually go away, with no problems since. It was the first time a surgeon or Doctor of any kind had looked me in the eyes and said "Wow, you were right. Thank God we didn't do that wound vac." That moment further instilled this sensibility that we have to take ownership over our own health, as it's us who know's our bodies the best, and everyone's is different. Anyway, just a story i wanted to share. Thanks again for bringing this reality out in the open! Anyone w/ a disability who's feeling challenged, and even family members of those with disabilities, feel free to reach out to me for any guidance or just an open ear :) - Benedict

william Peace said...

Token Gimp, You are correct the wound vacuum does not work for all and sometimes even many months later surgery (flap?) is required. I struggled with tunneling that persisted for a long time.
Benedict, The most common wound for a man 20+ years post SCI with no history of wounds is a massive stage 4 wound. I find this fascinating. In my case despite daily skin checks my wound presented itself in less than 48 hours.
You are correct the implications for care are significant and has the potential to affect one for many years.
On the wound vacuum: it is not the answer for all. I suspect placement of wound is critically important. My wound was on the fleshy part of my hip--a flat surface that was easy to work with. A wound on one's heal or other bony part would be very difficult. Also there is giant difference between a diabetes related wound and a SCI wound. Age and acess to skilled wound care is important asa well. There is as much art as there is science to wound care.
Henning, Your larger points are well taken. I think as the disparity between rich and poor has become increasingly stark in the USA. As a result, the chances for a poor person working their way into the middle class grows increasingly difficult if not impossible. A walk down Park Avenue in NYC will demonstrate this. Great wealth and great poverty exist within blocks of one another.

P said...

"They also believe that without secondary sexual characteristics, Ashley will be less vulnerable to sexual abuse[8] by future caregivers when her parents will no longer be able to care for her"

Okay Wikipedia isn't a great source but you are flipping KIDDING ME that this statement was a reason that ANY HUMaN thinks is VALID?????

P said...

I am heartened by the existence of your new class; I love to see a start of change in a judgemental disability = bad world. Much success to you

P said...

Failure of imagination:

See the fourth card Imagining World

william Peace said...

P. The parents of Ashley were very clear--without breasts they believed Ashley would be less likely to be sexually abused in an institutional setting. You can read more about the parental thinking by going to
I am eager to start teaching.

ChrisDar said...
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Aaron Agassi said...

Even trying to put growth attenuation in the best possible light, I agree that growth attenuation simply does not seem to fit any conventional criteria defining 'therapy.' 'Intervention' may serve only for wont of better appellation for anything so seemingly Draconian. Most charitably, growth attenuation is Draconian, indeed desperate in suffering as suicide. I do not know if the best response is truly moral outrage or compassion. And if we don't care for acts of desperation, then we must advocate for better options. All easier said than done, of course.

You express interest in problems of social marginalization of disability. But social marginalization is scarcely exclusive to any kind of disability. My website approaches many facets of social marginalization differently than anyone else I know of.