I am disgusted. Ashamed really of American society. Timothy Bowers is dead. Few will recognize the name even though his death has gone viral. The mainstream press refers to him as “a deer hunter”. His death is a tragedy. I can see in three or four years a made for TV movie—a real tear jerker. Average man, on an average day, with a newlywed wife and baby on the way goes out to hunt. He has done this many times. He is an avid outdoors man. But tragedy strikes. He falls 16 feet and crushes his C-3/4 vertebra. Imaging suggests he will most likely be a vent dependent quad. Not to worry though, he will be heroic. He will die. And he does indeed seemingly choose to die. The story is full of emotion and short of logic. In fact the story I have just told is utter bull shit.
Bowers needlessly died. In fact when I first read the story my first thought was this man was murdered. Legally killed by his family and physicians. Bioethicists are providing the post mortem cheer squad. Patients rights reign supreme. This is what happens when health care is a commodity. This is what happens when people see a paralyzed person and the first thought is about the expense of keeping such a person alive. So the heart broken physician enters the picture with long white coat flowing and perhaps blue scrubs, the very representation of human compassion, and paints a grim picture of a sudden spinal cord injury. The man is heavily sedated. Imaging depicts a devastating wound at C-3/4. He will likely be a respirator dependent quad. Tears flow. A grim reality is explained—medical costs will be staggering. Life in an institution is a reality. Bankruptcy a real possibility. Framed in this manner death seems preferable. But wait! We must be ethical. We cannot just end this man’s life—he wife is pregnant for goodness sake. Sedation is lessened and the man is told the gravity of his situation. He wants to die. His family wants him to die. His wife recalls they were at a charity event helping paralyzed people and he was clear life using a wheelchair was not what he wanted. The respirator is turned off. The man dies.
What is missing? Stephen Hawking. Jean Dominique Bauby. Stephen Gleason. More than one board member of the grass roots group Not Dead Yet. The very real and significant possibilities of life as a vent dependent quad are never mentioned. No effort is made to contact anyone with a comparable disability. This is a one sided rush to a death. This man was not given a legitimate choice. Worse yet, this man’s autonomy is praised by those in bioethics. We were ethical. No, you were not. Bioethicists support the easy, simple idea death is preferable to life with a disability. I get it. I have been in a bed when under different circumstances I got similar advice from so called compassionate care giver. Let me tell you it is easy to die when you are paralyzed. When one expresses such sentiments a veritable cheering squad supports you. The opposite side of this reality, the decision to live as paralyzed man is frowned upon. The worse the paralysis the more narcissistic you are thought to be. A selfish and costly existence, a social burden, the representation of the limits of medical science. I suggest bioethicists, hell any bipedal person, talk to a few paralyzed people. This will not happen because somewhere along the line dissent became unpatriotic. Advocacy in the realm of bioethics and politics is a dirty word.
6 comments:
Bill,
Thanks for picking this story up. I have gotten more hits on my blog than ever after having written about it yesterday. But I know you get lots more hits than I do. This is a tragedy beyond belief and it should be known to the world that this sort of treatment of our fellow human beings is inhumane and makes some of us think of times in history that everyone find appalling. I have a small hope this story can start a discussion even though I doubt it, being the old cynic that I have become with age.
Bill,
Thank you for picking up this important story. I got more hits than ever before when I wrote about it on my blog. But I know that you get way more hits than I do. And since you say many of the same things as I do I am really happy to know that it will be known to a larger audience how people in the disabled community feels about this action that I have no qualms about calling murder - I just fail to see it any other way.
I am really torn by this mess.
On the one hand, what you said. People make assumptions about what life is like when you have a disability. Many people are fairly shallow and have close to zero empathy for anything that is not what they think "normal" is. Remember there was once a poll where some absurdly high number of people said they would abort a baby if they knew it would become a fat person. You can't get more shallow than that. (For the record, I'm pro-choice, so this is not some abortion rant.)
On the other hand I am, for lack of a better term, pro-suicide. I believe that people should have the right to do themselves in when they feel it is fit. Most of the argument against suicide is circular logic: You cannot want it unless you are mentally ill, therefore we must "fix" your mental illness wanting you to want suicide. (Yes, there are people who attempt or commit suicide for a "look what you made me do!" 'reason' but I view them with a "I do not negotiate with terrorists" attitude.) Needless to say I'm also highly pro-euthanasia.
I think my biggest problem with the Bowers mess is how quickly it happened. He never had a chance to see just how severe the changes to his life might be. He never had a chance to see what kind of adaptability is available. He never had the chance to really examine choices. And, while I rail against the "suicide is solely a mental health problem" attitude, I have to seriously question the mental health of a parent who would choose death over watching his new child grow up.
Also: While I agree that dying is easy, and living is the hard part, I think that this is something to be cautious of. This is how Disability Inspiration Porn gets started. This is how disabled people get propped up on pedestals. "See this amazing disabled person? He chose life instead of killing himself despite his disabilities, isn't he *awesome*?"
Most people choose to live every single day. It's what is supposed to be "normal." It's neither heroic nor cowardice, it is, and should be, just what it is.
A few thoughts about this case...
1. Was Mr. Bowers' decisional capacity scrupulously assessed and re-verified before presenting him with this life-or-death decision?
2. Was Mr. Bowers or his family offered the opportunity to delay his decision and/or to talk to someone who has first-hand experience with quadriplegia?
As a hospital ethicist, I believe that informed consent in this scenario minimally requires these two safeguards, and I fully acknowledge the possibility that from a disability rights perspective, these safeguards may not go far enough. Legally, I don't know how much further a hospital could go without risking a battery charge.
For what its worth, I personally don't know many clinicians or bioethicists who would 'applaud' or encourage the decision Mr. Bowers made. Individual autonomy has become a largely unquestioned and unchallenged ethos in American culture, regardless of context. The prevailing mindset among physicians is that they don't have the moral right to impose their values on others - even in times of extreme crisis and acute vulnerability. I'm not defending this perspective; merely pointing out that it exists.
Moose, I am not torn one bit about about this story. Browers is an extreme case that illustrates how deep the stigma associated with disability is rooted. It is a graphic illustration of how unwanted people like me are. It is easy to try and ignore this. It is esy to lead a seemingly normal existence. But I will bet at some point during the day I will pass by a stranger who thinks my life as a paralyzed man has no value. Some may think I am exaggerating. I have thought about this a great deal and come across enough bigots who freely admit their bias. I cannot logically come to any other conclusion. And if assisted suicide becomes legal I have no doubt the most vulnerable will die.
Ronn, Glad you left a comment.
1. How a person within 24 hours of a severe spinal cord injury could be considered lucid and aware enough to assert his or her autonomy is laughable. I would like to see the medical records and know what sort of medication he had been given. I assume he was in an ICU. Had he ever been in an ICU before as a patient or visitor? If not the lights and sounds alone would have been disorienting.
2. I doubt there was ay effort made to delay. Based on news reports it sounds like his sister, a nurse, took the lead and was supported by his pregnant wife. I cannot see how a spouse, male or female, pregnant or not, could make such a fast decision. I am stunned by the speed. Was he even in an appropriate hospital for care given the severity of his injury? In the olden days men with high cervical injuries were not treated and families were instructed to let nature take its course. I had hoped we had advanced as a society to have a more nuanced view of disability. Obviously this is not the case.
r.e. Your final comment about not knowing clinicians or bioethicists who would applaud Bowers decision. I would suggest none of the clinicians or bioethicists you know would be willing to verbalize such thoughts. Behind closed doors and in a private setting I would venture to say many if not most would support Bower. In fact I would go as far as to suggest Bowers will be perceived as being braver than a person such as myself who wants to live. Do not take my word for this. Strangers have openly told me this. A hospitalist I met once thought this easy when I was at my worst.
It makes me sick to my stomach how we are manipulated - how many people would tell my husband that in his place they would rather have died...or tell me how bloody hard it must be for me - what was hard was their attitudes and words - we were okay - how many must now have been pushed to be killed - not let die, but killed
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