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Thursday, June 18, 2009

Scary Thoughts: How Many with SCI Needlessly Die

Yesterday I described myself as "an old time crip". It never ceases to amaze me how things have changed since i was first paralyzed. My first wheelchair was a piece of crap manufactured by Everest and Jennings. It weighed 50 pounds, was poorly made, and came in one color and fell apart in 6 months. What did I do to this wheelchair? I went up and down curbs, played basketball, and led an active life. For this, the "lifetime" warranty was voided and in the next two years went through at least four other wheelchairs until I found one of the first rigid frame wheelchairs ever made. I happily parted ways with E&J and did a little dance years later when they went out of business.

Technology has changed dramatically. People with SCI can expect to live a rich and full life post injury. This should not be subject to question. However, I have no doubt questions about the quality of life post SCI is still subject to intense discussion. I am sure people with high level SCI injuries are given a crystal clear image of life post injury that is far from positive. The focus is on respirators, a total lack of independence, pressure sores, nursing home care, chronic infection and worse. No doubt some people will hear all this and read between the lines: life with a high level SCI injury is not worth living. The message can be delivered subtly or bluntly. We can make your loved one comfortable and they will expire from secondary complications associated with their injury. Does this take place today? You're damn right it does. I saw this 30 years ago and sadly we have not progressed that much socially. I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied "think about it". Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. "They were allowed to die with dignity" she told me. I lost a lot of sleep that night wondering about the so called "quality of my life", what doctors and other medical professionals thought of my existence and shuddered to think of the many who would die not of a high level SCI but a social assumption that their life was not worth living.

These thoughts flooded back to me yesterday when I read "How I Didn't Die" by Terrie Lincoln, Systems Advocate, at the Center for Disability Rights and cross posted at Not Dead Yet. Apparently the Center for Disability Rights and Not Dead Yet share some office space in the same building. Stephen Drake, one of my favorite people in the fight for disability rights, had been contacted by someone from "How We Die, a website and TV series devoted to "end of life decisions". Drake was able to convince the people at this show to include the stories of people who were supposed to die--indeed were pushed to die by doctors. Ms. Lincoln's story is among the first to be discussed. I encourage you to all read her story. It did not happen thirty years ago but a mere twelve. Twelve years ago! Twelve years ago a person with a SCI was pushed to die! When I read her story all I could think of was the disparity between her life and mine. I was the father of a 5 year old boy living the good life in suburbia. Ms. Lincoln was being pressured by doctors to die, that her life was not worth living. What Ms. Lincoln and I shared was a supportive family. Her mother refused to listen to doctors and fought back. Likewise, my parents never questioned my ability. I was going to live a rich and full life like my siblings. I may be paralyzed but the most important part of my body, my brain, worked perfectly and it was up to me to use it. My parents did not give a damn whether I was paralyzed or not. They loved me for who I was.

Ms. Lincoln's story deeply depressed me. Surely we have come far technologically but the social lag, the stigma attached to life after SCI has not abated. It should not be up to a strong and supportive family to encourage a person with a SCI to continue to live. This should be a given no matter the level of injury. But this sort of thinking was naive thirty years ago and as Ms. Lincoln demonstrated was equally naive twelve years ago. I suspect it is naive thinking today. And it makes me wonder just how many people today will die of complications associated with SCI that need not die. How many doctors exist that are wiling to make this decision for a patient? How many people have died over the years? I suspect the numbers are staggering. These sorts of thought kept me awake thirty years and I wonder if the problem, needless deaths--is worse not better. How many people die today as a result of a value judgment made by doctors? I think of Daniel James and his "loving" parents that received a tidal wave of support when they escorted him to Dignitas shortly after his SCI where he died, a result of assisted suicide. More generally, I wonder about the elderly and all those that have had extended hospitalizations and are given a choice between assisted suicide and continued care? Are people such as this, surely depressed, given a real choice? What about the elderly who are visited by well funded right to die groups? Are these people really being a given choice or being told to die? I do not have answers to the questions I pose but I am convinced of one thing: good people, young and old alike, die needlessly everyday. These needless deaths have less to with medicine than the value judgments made by those that work in a supposedly hard science we call medicine.


Jackie said...

I also did not realize that this was an issue. Ms. Lincoln's story is sad, and I would have not believed it was only 12 years ago. Thought provoking post.

FridaWrites said...

Indeed sad and shocking. I hear pressure sores are now called "never events" and insurance/govt. won't pay for their treatment if they occur in hospitals or nursing homes; while they can be partly prevented, I don't know that they can be 100% prevented.

Stephen Drake said...


I just did a quick check and the revised CMS rules treat pressure sores discovered at stages III and IV as "never events." The reasoning seems to be that this will encourage what many hospitals and other facilities *don't* do - check for pressure sores in vulnerable patients and address the problem early.

william Peace said...

Jackie, What I worry about is not the past but the present. Do people with SCI still encounter MDs that push death over disability? I see no reason to doubt this still takes place. I doubt it is the norm or so I have been told. I especially worry about some with a SCI that is already disenfranchised who arrives at an inner city hospital unprepared to handle a complex SCI injury. Is this poor, perhaps black young man, going to get the same treatment and advice as a person that is treated in the wealthy suburbs?

Frida, Pressure sores lead to an untold number of deaths in this country that are easily prevented. Remember Barry Corbet, editor of New Mobility. He wrote about his experience in a nursing home where all agreed a pressure sore needs to be prevented before it occurs. This is great but the staffing needed to move people who cannot do so independently is not present.

Claire, Change must come from within and outside the medical community. Great pressure must be placed on the health care system to provide long term care. Baby Boomers are the tip of the ice berg and woefully unprepared for what awaits in old age.

FridaWrites said...

Thanks for the clarification, Stephen and William. I had them when I was young--no precautions were taken.

DaisyDeadhead said...

Great post.

Ralph said...

Hello Bill,

Really good post. It is truly sad to hear that these type of stories really happen but sadly enough they do. I too have experienced somewhat of a similar situation. It was not as extreme as pushing me to die but still very unsympathetic. I shared this story with Carwile Leroy, MD. and he asked me to share my experience on your blog. So here it goes...

I suffered a spinal cord injury
(c6-c7 incomplete fracture) 13 years ago. Three weeks after my SCI, I remember the MD walking into my rehab room and explaining my situation and how my life had changed forever. I remember he bruntly stating "Ralph, get used to being in that chair, because you are going to be in it for the rest of your life." I really didn't think about then too much - of course I being in a state of denial and shock at the time. But as the weeks and months passed by, I couldn't help but think how cold and sad it was for him to say those things. I guess in his defense, he felt obligated as a man of science and medicine to state the facts and leave no room for false hopes. But yet for someone who had just suffered a devastating injury and just beginning rehab, it was a hard pill to swallow.

Fortunately, I did not let those words defeat me. I was able to regain my function back through effective rehab, family support, personal will and determination.

Today, I am happy to say that I am able to walk with the use of Lofstrand crutches. I still use my wheelchair for long distances but I walk when I'm at home and whenever I can.

I strongly agree with you and the other bloggers that the medical community needs to be more compassionate to the disabled of all degrees and show more empathy and hope... Because after my personal experience, it is hope that got me to where I am today.

william Peace said...

Ralph, Glad Carwile inspired you to write. He is a great guy. I tend to think rehab for MDs is considered a career dead end. Too often MDs see a disabled person and at some level consider them a failure or a symbol of the limits of medical science. Thus defeating comments such as what you recall are well within the norm. For some they can be taken as a challenge yet can also just as easily kill the human spirit at a vulnerable time. I tend to think rehab in the old days had less to offer in terms of recovery but made up for this lack with passion in care and treatment. Today I see little care put into care and much thought and energy to the technology involved in rehab. When you combine this with the fact insurance dictates the quality of care I am glad I was paralyzed long ago.