Search This Blog

Friday, April 9, 2010

Fear of the Medical Industrial Complex

In spite of the newly enacted health care reform bill I believe our health care system remains hopelessly fragmented. In my estimation most Americans figure into one of two groups: those with and those without adequate health insurance. Exceptions exist, myself for example. I have health insurance, hospitalization only, that does not do me or my wallet much good when I get sick. Yet I consider myself lucky to have inadequate insurance because most paralyzed people I know have no insurance. The reasons for this is simple: health insurance companies consider people with a disability to be a poor or costly investment. The stigma and obstacles accessing health care for people with a disability does not end with insurance. Like it or not, within a medical setting people with a disability, especially those that use a wheelchair, symbolically represent failure or the limits of medical science. Doctors, nurses, therapists and all those dedicated to healing people do not like to be reminded of such limitations or failures. This belief is not directly addressed and festers below the surface of many interactions I have had. The negative perception of disability also affects the sort of health care people with a disability receive. When one thinks about serious or life threatening illness most people assume everything will be done to save their life and every possible procedure will be performed. For many this is a given. I do not share this belief. I have a very different set of worries: I worry I will not be treated. I worry I will be allowed to die--to end my suffering. The fact is my life is not valued--it is thought by many to be some a tragedy and that I have endured and suffered. If seriously ill why pull out all or any of the stops for such a person. This is not science, supposedly objective, but opinion--a deadly opinion. To me this proof that medical science deems some lives worth living while others lack value.

Surely this bad cripple is being paranoid. Sorry but I think not. Why just the other day I was out to lunch and the person I was eating with went to the rest room. The person at the table next to where I was sitting leaned over and handed me a business card. He stated "if you ever want to pray for a cure and end your suffering give me call". While this encounter was not an ordinary experience it highlights the fact many people think death is preferable to disability. I have been told countless times "I could never accept using a wheelchair" or "I would rather die than be paralyzed". The prevalence of this belief is far more common than I would like to think much less accept. This thought has been at the forefront of my mind in part because of my encounter at lunch mentioned above. But I was inspired to write about my concerns after reading an interview with Michael de Ridder, head of the emergency ward at Berlin Hospital and author of a new book on dying in Spiegal. In Ridder's estimation death has become complex, people are needlessly suffering, and patients should be allowed to die with greater dignity. Ridder states that a doctors primary mandate is to heal but "to allow someone to die well is equally important in terms of ethics". In Ridder's estimation doctors are not well equipped to handle the ethical conundrums they often face when dealing with end of life issues. Thus Ridder believes we need a concept for the treatment of "hopeless cases". What I wonder is exactly a "hopeless case"? According to Ridder decisions on hopeless case can be on empirical grounds. That may make Ridder feel like a highly ethical being but such logic scares me. Worse yet, is an example Ridder provides. Over a year and a half Ridder got to know a patient very well. The person in question, a woman, was "a brilliant scientist, who since an accident two years ago, has been paralyzed from the head down and is completely without feeling. She wanted the artificial respiration shut off but she was refused, as this is clearly illegal. She was literally reproached for being the only patient in the ward who didn't want to live. She is breathing on her own again. But she says that she can't touch anyone anymore, she can't do her work anymore, she can't even lift a pebble. She doesn't want to live like this. Mind you, it's a life that wouldn't even exist without advanced medical procedures and it's one that she can no longer end on her own. In that situation, I can't exactly order that the woman should be turned so-and-so-many times a day, that she be fed and that she should lie there for another 40 years, just because we have the technological know-how and want to satisfy our ethical standards."

Ridder may think he is basing his views on empirical observations but in my estimation a value judgement is being made. The life of the woman discussed is not worth living. The fact that the overwhelming majority of people faced with the same situation choose to live is conveniently ignored. Compassion and care has been perverted. Ethics has been stood on its head in the guise of physician assisted suicide. At issue is not how to live but how to die. And this line of thought that is sweeping health care here and abroad scares my crippled ass. What happens to the next paralyzed person who comes under the care of Ridder or another physician that holds similar thoughts. Will such a patient be treated equally? In a word, no. Will I be treated equally when I enter a hospital with a serious illness? Sadly, I think not. I know I will have to fight for my rights and assert myself. Now this is an ethical violation worth discussing. It is also against that pesky law known as the ADA.


Becs said...

I have noticed that medical ethicists are like modern suburban subdivisions - named for something they aren't."Wood Glen" devoid of woods. "Rolling Hills" bulldozed flat. And so on...

FridaWrites said...

I consider you a very level-headed man for not laying a finger on Mr. Cure at lunch. *That* guy needs prayer.

In terms of suffering, getting that woman up and around (in a wheelchair), meeting with her intellectual peers, contributing productively and in meaningful ways would make a big difference. Anyone would be depressed to be institutionalized, but few will take the steps to alleviate the real problems rather than the perceived ones.

Matthew Smith said...

I noticed the bit where he says that PEG tubes don't prolong life or enhance its quality. Excuse me?! If someone can't swallow, it's either a tube up the nose, an intravenous feed or a PEG. They make sure that people get fed - that does prolong life, doesn't it?

They are also preferred to a nasal-gastric tube by some people who can't swallow; I read a comment on a blog somewhere by Lynn Gilderdale, who was in that position due to ME and was fed mostly through a nasal tube, that although hospitals in cities had home TPN teams (TPN is total pareneral nutrition, administered through a PEG), rural hospitals didn't (she lived in a small village) and so she had to be fed through a tube, which wasn't ideal as she had persistent problems with nausea.

What's not acceptable is fitting a PEG to an elderly dementia patient just to make the nursing home staff's life easier, as is known to go on in some places. You might as well fit one to every toddler!

FridaWrites said...

That's true--doesn't Ebert the movie critic have a peg tube now? He tires out but still seems to enjoy life very well.

Peace Man said...

Becs, Medical ethicists are a breed apart from humanity. Most are smart but their thinking often borders on dangerous.

Frida, I held my tongue and was proud of this in retrospect. This person was not capable of learning.

Matthew, PEG tubes have a central place in health care. And like all other aspects of health care they can be abused or placed in a patient for dubious reasons.

Ann Neumann said...

If the guy had still been there when I returned from the bathroom, I might have had a hard time not getting punchy! I think there's a fascinating religious aspect to the interaction that you haven't addressed. All that, "pain holds the meaning of life," and "the misery of our lives is the foundation of our integrity" stuff.

It's easy to criticize ethicists. Their job is to examine the contested spaces in medicine and human existence. But saying that they make assumptions about suffering does not negate one's own assumptions about suffering. What is your limit? Is it being fully bed-bound? Is it chronic pain and a 2 month diagnosis? Is it the degeneration of your mental faculties via Alzheimers? Is it withstanding the onslaught of multiple sclerosis for 12 years? Who tells you how bad your pain is? Who decides what you deem worth living for and what artificial, aggressive treatments you are willing to pursue? These are issues of personal autonomy first.

I despise the discrimination in the medical industry (and society) that Bill describes. Yet, I can't quite see how preventing others from exercising their autonomy changes those perceptions for the disabled.

Matthew Smith said...

Just a correction to my earlier comment: TPN (total parenteral nutrition, parenteral meaning by-passing the digestive system) is intravenous feeding, not delivered through a PEG which goes into the stomach. Intravenous feeding is what Lynn Gilderdale was complaining about being unavailable.