Has the End of Life Been Hijacked?

I regularly find myself puzzled by advocates for assisted suicide.  There is a fervor for death I find unsettling. That fervor is palatable in some people. Here I think of Thaddeus Pope, a legal scholar I respect but a man I do not understand. Why I wonder do advocates for assisted suicide get so excited when they engage me and others who are opposed to assisted suicide? I also wonder what do they really think of me? Am I respected as a scholar and activist? I simply do not know. In fact I sometimes feel like a speed bump in the road--a warning to slow down that can and is often ignored.  What I do know is that far too many people in this country die badly. Alone, often scared, and almost always in a hospital. This is not good. This is the common ground advocates and opponents share--we want the end of life to be as humane as possible. We are profoundly different in the way we approach this fundamental dilemma.

As I drove up to Syracuse early this morning I was thinking about end of life issues and how it feels nearly impossible to change other people minds. I find this frustrating in the extreme. I also feel there is a core problem I am missing. So as I pumped gas into my car I was dumbstruck to read an article in the Vancouver Sun. The Canadians I feel have a more nuanced approach to end of life care. I could be wrong but long ago a Canadian Border Guard told me "Unlike you Americans we still value dissent". As I read "Death with Dignity Isn't About Euthanasia, Says Palliative Care Expert". See: http://www.vancouversun.com/health/Death+with+dignity+about+euthanasia+says+palliative+care/9801618/story.html In this article Harvey Chochinov. Here is an excerpt from an otherwise mundane article:

While palliative care — in which patients are kept comfortable, clean and pain free — is a growing part of the public conversation about death, Chochinov says Canada lacks national guidelines for the humane treatment of a dying person.

Instead, he says, the very notion of dying with dignity has been “hijacked” by the right-to-die movement.

“I think we’re going entirely in the wrong direction by saying the way to deal with our inadequacies in end-of-life care is by a euthanasia policy. I think we need to do something much more constructive, such as giving doctors good training in pain management.”

Even where doctor-assisted death is legal, a small fraction of the population requests it, he notes.

The right to die movement? When death become a right? We are all going to die. Death is a biological certainty.  Death is not a right but part of the life cycle. Like Chochinov I believe we need to have a vibrant national debate about how we deal with the end of life. I agree we need to foster a constructive discussion. Jack Kevorkian put this discussion on the front page of every newspaper in the nation in the 1990s.  Kevorkian, unknown to many young college students, was a polarizing figure--a ghoul really.  He was a polarizing influence. Who I wonder can bridge the gap between people such as myself who oppose assisted suicide and those that fiercely advocate for it in the form of state laws and the push for VSED as a viable final solution.  Is it even possible to build a bridge between two mutually antagonistic groups? When I read the rhetoric on both sides I think any sort of common ground will never be found. I hope I am wrong. I am however convinced of one thing: framing end of life, death itself, as a right and forming a right to die movement is inherently wrong.  In short, I second Chochinov's call for better medical training and pain management and more--more as in teaching physicians to be kind and compassionate to the patients they treat who are approaching the end of their life or are mere hours from death.  This is hard work. Emotional labor too few physicians are willing to engage in. Now that is subject worthy of sinking our collective teeth into.

Life is Not Fair: Moving Past a Trite Old Line

At some point in life I think every human bemoans their lot in life. Some might wish they had more money. Some may desire a better body--taller, skinnier, more muscular, less or more hair, etc. Many associate the line "life is not fair" with typical teenage angst. Most parents I suspect have had their teen yell at them "I did not ask to be born" or "Life is not fair". My son never invoked the line "I did not ask to be born" but more than once stated "life is not fair".  When he told me this I look him in the eye and said one word: "correct". This was not helpful as my one word reply enraged him. The teen that stated this is now a young man about to graduate from Hofstra University. I am worried about him in an abstract sense. I worry about his ability to get a job. I worry about him dropping off the grid. I worry if life post graduation, his start of adult life, will be "fair" to him. This of course is well beyond my control. My hope is I taught him the important life lessons needed to survive and thrive. Part of me envies him--his entire life is ahead of him. Part of me is fearful: mistakes as you get older only increase in their magnitude.

Life lesson number one is life is not fair. Get over it and do so fast. I learned this lesson when I was a little boy. I vividly recall the initial stages of being morbidly sick. I was scared and in intense pain.  When my parents brought me to Columbia Presbyterian famous Babies hospital in a desperate attempt to figure out what was wrong I quickly learned life was not fair. I was in fact lucky. I had the best parents a child could wish for. I had a great doctor--Arnold Gold--who would become akin to a second father care for me. My peers were not so lucky. The vast majority died. Even as I child I could figure out which kids were not not going to live. I avoided them. I played with my army guys in bed and kept my head down. Life was not fair for sure but I was smart enough to look around and see almost all the other kids were in much worse condition than me. I also spent hours looking out the window at Broadway and the San Juan theatre across the street. Homeless and poor people abounded. All I saw at night were poor and cold people wandering the street some of whom, desperate to get warm for a few hours, paid to see a movie they did not care about. I saw physicians running in the street too. They were ghost like apparitions flowing in a blur of white and blue. I feared them.  They gave me nightmares. They were the men and women who would cause me great pain. Spinal taps, surgery, and the dreaded sub basement of the Neurological Institute where the most horrific diagnostic tests were performed. To this day if I am in an elevator and see the letters SB lit up I break out in a cold sweat and shake violently.

Life is indeed not fair. I am grateful to have had that concept drummed into me before I was ten years old. My inner child, as I recently told a friend, died long ago. Life is not fair. Got it. I thus quickly transitioned to an interest in social justice. Why were people poor? This to me was really not acceptable. Why did I live in a gorgeous house in the wealthy suburbs when I saw poor people every day.  Poverty appalled me. Lousy parents shocked me. I thought poverty was a mother that worked and was not home with a house full of kids. I learned everything I experienced and was taught was a fairy tail. Wealth is rare. Poor people abound. Life itself is never a given. I assumed like all my peers I would die. Dying was the norm. Poverty was the norm. Injustice was the norm. Pain was the norm. In fact pain was my best friend for a decade. If I could think and experience pain, severe debilitating pain, I was alive. I clung to my parents and Arnold Gold like they were a life preserver. Most of all I survived and endured. My bodily condition and deteriorating neurological condition was the price paid for life. This was not such a bad deal. I never felt sorry for myself. All I needed to do was look to my right or left and see a friend in much worse shape. Eventually I learned not to look around at all. Think Lord of the Flies.

Life is not fair. I find adults that state this baffling. This thought was reinforced today when I read Rolling Around in My Head, a wonderful blog maintained by Dave Hingsburger. See: http://davehingsburger.blogspot.com/2014/05/fair-whos-fair-would-that-be.html This morning he wrote about a person whose cancer returned and the reaction it caused. Life is not fair was invoked and then directed at Hingsburger. He was deemed unworthy of life by comparison to the person with cancer. He wrote:

I deserve death.
She deserves life.
That's how it breaks down. My fat, disabled body moves me from the category of one who has the same right to life and to love and to purpose to the category of person who is simply expendable. I can easily imagine a group of students given the exercise of choosing which one of the passengers would be thrown off the boat to save the others. I'm that guy. I had suspected all along that I'd be that guy - but now I know, for certain, that I am.
I have always been terrified by the slow crawl our society is making towards embracing the idea that it's OK to kill someone for their own good and for the good of the tribe. I am terrified even more now.

This is the life boat ethics Tom Koch wrote about in his book Thieves of Virtue. Welcome to a brave new world of bioethics perhaps more accurately described as biopolitics. The world has become a scary place for those that dare to live with a different body; a fact graphically illustrated by Sheri Fink in her book Five Days at Memorial. Of all the horrors she wrote about in the days that followed the Katrina disaster in New Orleans was the story of Emmet Everett. Mr. Everett was a Honduran born blue collar worker who had a freak spinal cord stroke. He was in the hospital awaiting colostomy surgery. He was medically stable. He did not survive Katrina because having dark skin, being paralyzed, poor, and over weight was a lethal condition. The behavior of the health care professionals involved in his care was disgraceful if not shameful and likely illegal. As my friend Steve Kuusisto asserted last month the staff at Memorial hospital were cowards. Everrett needlessly died as did many others. 

Back to Dave Hingsburger who wrote:

I imagine myself ill.
I imagine people deciding that I need, not repair but elimination. That I need medicine but not the kind that eradicates disease or illness but the kind that eradicates the 'likes of me... one person letting another know that in a fair world - my life would be taken, swapped for someone more worthy.
In a fair world.
I'd get what I deserved.
Yet people tell me, those who support the kind killing of disabled people, that I have to trust that it would be done in a fair and compassionate way.
Well, I guess, I wonder 'whose' fair would that be?
And, I guess, I wonder 'whose' compassion would that be?
I love my life. That may not be fair. But I do.

I do not need to imagine the scenario Hingsburger described. I experienced it. Many people with a disability have experienced it. Many elderly have experienced it. This makes me shudder. The work of Thadeus Pope, an appropriately respected scholar, makes me shudder. The push for assisted suicide on the part of groups such as Compassion and Choices, makes me shudder. The death of Christina Symanski who died via VSED and with family support makes me shudder. The death of Tim Bowers with 24 hours of a devastating spinal cord injury makes me shudder for he too had family support. The chill and shudders I feel this morning has transformed me back in time. I feel like a sick little boy looking at the window of a neurological ward. It is late at night. It is quiet. It is cold. I can feel the cold against the aged window pane. I look down and see a tidal wave of poverty moving about. Poor men and women shuffle along. I do not fear these people. They like me know life is not fair. I fear the blue and white apparitions that quickly flow by outside and inside the hospital. I shudder to think I knew who to be afraid of when I was 10 years old. I am still shuddering decades later. 

A Swelled Head

Two nights ago I went out to dinner in the Syracuse, NY Armory distric with two good friends--the astute Lance Manion and noted poet Stephen Kuusisto. Blind man with guide dog, crippled me in my wheelchair, and wonky bipedal man with a cain. Sound like the start of a bad joke. One of the friendly critiques I get is that I am to consistently bad. Come on I am told the world is hard but surely you can tell a good or happy story once in a while. Okay, here is my happy story, a story that made me feel far too smart for my own good.

I drove to down town Syracuse and planned to meet Lance and Steve. The snow has finally melted away and no longer plowed into handicapped parking spots--the preferred place all snow plow drivers aim for. I find a spot near the well known Irish bar Kitty Hoynes where we plan to eat. Remember this is Syracuse. The weather is nasty. Windy, about 40 f. and raining. Really hard cold rain. I navigate the chopped up streets and see a massive mess near Kitty Hoynes. Massive as in major street repair. I might get into the restaurant but will need the assistance of a few Sherpa or maybe the local fire department to carry me in. On to plan B. Given the heavy rain I look for a restaurant nearby. Only one option exists for our motley crew of three men, one guide dog, wheelchair, and cain--a pasta place. I do not like pasta but the restaurant has the room for us. Wet and hungry we are escorted to our table. We are about to chat and  when a guy at the table next to us leans over and asks me "Are you the guy that gave the brilliant talk about assisted suicide and the Walking Dead at the crip con?" Now that was a first. A stranger recognize me and deemed me brilliant. I immediately asked this man if I could get that in writing. To say his was gratifying is a giant understatement. I had great fun preparing my talk, getting made up to look like a zombie, and delivering my paper. I am a hard working man but not the most creative person. On that day I let my freak fly.

So there you have it a happy story. But please be forewarned do not ever call a scholar brilliant. My ego is healthy enough. In fact on the way home I struggled to get my swelled head into the car.

Abuse of People with a Disability: Those that Dare to be Assertive

I  have not posted much this month. I have had a hectic schedule and this week students have emerged worried and stressed out. Time is a commodity that is in short supply for me and many others who work in academia.  The end of the academic year also puts me in a retrospective mood. The academic year at Syracuse has been wonderful--tremendously rewarding--and without question one of the best academic experiences I have ever had. In fact if were not for debilitating personal angst last Fall I would characterize my year at Syracuse as the best experience I ever had. The symposium I organized, Lives Worth Living, was rewarding in the extreme. And when I use the word I here it is grossly misleading. The spectacular staff of the Syracuse Honors program did all the heavy lifting in terms of labor and organizing. The event could not have taken place without their professionalism and dedication to insuring the day went well. I owe each and every staff person a debt of gratitude.  It was not just this event--the honors staff helped consistently and always with a smile. They have been a continual source of assistance; an amazing group of people.

While I am always retrospective at the end of the academic year two major life events have heightened my feelings: First, after nearly two decades in the same home I will be moving this summer. Second, my son is graduating from Hofstra University. We are a family in transition my son and I. He is about to embark on his adult life. Such an exciting and stressful time for him. I am very proud of him and I often shake my head in wonder--I spawned an adult. He will find his way and like all others have his share of ups and downs. As for me, my travel schedule will be significantly reduced this summer. I have two more events of significance. Since last August I have not been home for more than eight consecutive days. I am physically and mentally tired. I am focused on finding a new place to live. My overwhelming desire is to be a rolling stone for an unspecified time period. I will not tie myself down. I want to remain a man on the move.

As I think and worry about moving I have spent much time thinking about my life in the New York City area. This morning I saw an image that instantly transformed me back to the early 1980s. I was young. I was cocky. I was in graduate school and ambitious. Oh what an obnoxious cock sure person I was. I knew all the answers to life and was not afraid to share my depth of knowledge! Ugh, embarrassing to look back now as an adult. What I am not embarrassed about was my activity in the fight to insure NYC buses had wheelchair lifts. The Mayor of New York was fiercely opposed to putting wheelchair lifts on buses--as were most mayors of major cities. The para transit system politicians yelled worked just fine. Yes they worked just fine for people who were devalued and dependent upon inferior service that had to be planned days in advance. This made me angry and I forced myself on the bus one day. Within a few weeks I suddenly became a bus buddy. I volunteered for what was then the EPVA.  I am not a veteran but they organized events and found people willing to help others get on the bus. I was quickly deemed an expert because I successfully got on a bus--likely once or twice. The opposition to wheelchair lifts on MTA buses was extreme.  I recall the only sure way to get on the bus was to hide near the bus stop with another person using a wheelchair. Once the bus stopped one of us would pop off the curb and grab the front bumper of the bus. With no where to go the bus driver had no choice but to lower the bus lift. This promoted a chorus of boos from passengers--on a good day. On a bad day I would be screamed at and on very bad days I was spit on.  So when I saw the below image I was not at all surprised.

The image depicts member of the National Solidarity for Ending Discrimination Against the Disabled being sprayed with tear gas by the police at a bus terminal in Seoul South Korea. The people in question were gassed on South Korea's Day of the Disabled. I love the irony. The activists were like me in the 1980s. They were trying to something very ordinary--get on a bus. I was never tear gassed but I was certainly verbally abused. And yes as already stated I was spit on. I had beer dumped on my head and once had an egg thrown at me. I heard passengers chant "go, go, go" encouraging the bus driver not to stop for me. I saw bus drivers purposely break the lift key in the off position so they could not use the lift. More than one driver did this with nasty smile on their face. Many drivers lied and said the lift was broken.  I cannot  recall a single bipedal person offering words of support. Not one. I was hard. I wrote down bus numbers and called in complaints daily.  I even go friends to call in as well. I was a man on mission and better yet was not alone.

Times have changed. New York City bus drivers do not bat an eye when I get on a bus. My fellow passengers do not look up. The lifts on virtually all buses work perfectly fine. Bias is rare. Is this proof I now live in a city akin to Criptopia? In a word no. I am looking for a place to live. I called a dozen apartment buildings over the last few weeks and quickly learned the stock answer to my question about a wheelchair accessible unit is no. None are available, the waiting list is 3 to 5 years and they are not taking any more names to add to the list. The message is not subtle--my crippled ass is not welcome.  Essentially 99% of the apartments are not accessible. It is these basic forms of exclusion that are deeply problematic and can and do ruin lives. By basic I refer to accessible housing and accessible mass transportation. This remains a formidable challenge in my life and the lives of others that use a wheelchair to navigate the world. Yes, I can get on a NYC bus and many other buses in major urban cities across the nation. But the vast majority of homes and buildings remain grossly inaccessible. So as I prepare to move I  am reminded my existence is still not valued.

Zombie: Walking Dead and Assisted Suicide

I gave the key note address at the 2014"Cripping" the Comic Con at Syracuse University today. I throughly enjoyed. My talk was well received. Discussing the Walking Dead television program and assisted suicide was not easy. I had to gear my talk to these that know the how in passing as well as those that are obsessed with the show. I truly enjoyed as I was well outside my comfort zoom of typical academic audiences and delivery of my ideas. I got to poke fun of a host of bioethicists and even show a photograph of Jeremy Bentham. A win win situation.

And yes that is me made up like a zombie.  The best part of the day was the zombie walk from the Syracuse student center to the quad. I led the way with Diane Wiener who organized the event. A large contingent of people made their way to the quad most of whom were dressed up as zombies. Moans and groans emanated from one and all. People were staring at us for good reason. It is not every day you see a bunch of crippled people, actors, performers, presenters and the university photographer dancing around. There were era formal events being held on the quad. Most professional zombies were young men and women who were lets say wee rambunctious. So much fun to see some of these young men terrorize students. My favorites were a slender young woman who accosted some men playing soccer. She stole their ball and threatened to bite them! Another favorite as a tall large man in surgical garb.

Really off beat day. Not a typical conference thats of sure. I can honestly say I let my freak fly today.  

JL on Tim Bowers

The best part of writing this blog are the comments I receive. I am often taken to task and beyond but once in a while I get a comment that reaffirms my writing is important. To this end below is a comment I received from JL that warmed my soul. Bowers has been on my mind as I prepare for my talk on Friday. As I reread the material published to date I grow increasingly disturbed by what took place. JL's long comment highlights why Bowers case is important and needs to be discussed in detail.

JL wrote:

          It’s a crisp fall day in an Indiana farm town.  A young hunter sits in a tree stand some sixteen feet in the air awaiting his prize buck.  His view is tranquil as he enjoys a brisk breeze.  As time passes, images of his expectant wife drift through his mind.  Business is good, his family is growing, and life is as it should be…….simple, secure, and peacefully predictable.   Eventually, as the day progresses, the sun begins to set.  He gathers up his gear and begins his descent, maneuvering down the tree stand as he’s done so many times before.  However, on this particular day, the young man’s life deviates far away from everything familiar.   On his downward climb, he abruptly finds himself flailing through chilly air.   With brutal force, his sixteen foot fall comes to a crushing halt as his body smashes into the cold November ground.  He is stunned, breathless, and confused.  Disoriented and fearful, he tries to reach for his cell phone only to find his desires met by motionless arms.  Trepidation and panic overcome his paralyzed body.  He lay silently and lifelessly for hours.  His flustered mind races as his body begins to fight the trauma it has endured.  The damage to his spine slows his heart rate, lowers his blood pressure, and robs him of his ability to shiver in attempts to warm his body.   Breathing becomes ever so difficult as he struggles to willfully fill his lungs.  The man lays awkwardly positioned on frigid ground, his body broken, and his mind lost in disbelief.  After enduring several horrifying hours alone, help arrives.  Met by a fury of doctors, nurses and terrified family members, he works hard to process his surroundings through a curtain of confusion.  Bright lights, unnerving voices, and white coats rush around him making the graveness of the situation overwhelmingly real.  Quickly, a tangled mass of tubing surrounds and infiltrates his body.  A large hose is thrust down his throat with imposing force.  He bites down in logical opposition to such a barbaric act.  He is so exhausted, so utterly and soulfully exhausted.  His mind and body is overcome by fatigue, bewilderment, and trauma.  He begins to drift off……..finally, finally, it appears he can rest.  At long last, his body finds peace as he enters a medically induced state of sedation.   The process of healing can now begin as his broken body finds reprieve. But, no! Suddenly, the young man finds himself awake again.  His mind is foggy as he tries to fight through the heavy haze of sedation.  He struggles to gain his bearings and make sense of his overwhelming circumstance.  Weeping family members overcome with anguish hover over him.  They talk of his life in a wheelchair and his inability to breathe independently.  He is told of the baby he will never hold, and the hugs he will never give.  Grief saturates the man’s body to its very core.  He is exhausted, hopeless and besieged with uncertainty.  And so it is, at this intensely susceptible moment within hours of injury, that medical professionals present the young man with an option to die.  Hence, with his family in support, and a nod of his head, an emotionally and physically battered man surrenders his gift of life and succumbs to death.                                                                                               

With this turn of events, the family of Timothy Bowers, a 32 year-old husband and father-to-be, grieve his loss and try to move forward.  Meanwhile, the hospital and health care team involved in his case tout their prompt and unwavering endorsement of patient autonomy.  News spreads of the proceedings and support grows for the “courageous” deer hunter that selflessly chose to die and the medical staff that boldly gave him a choice.  And I, as a physical therapist and patient advocate, sit in horror and disbelief over the flagrant miscarriage of events.  

Does one truly believe that Tim Bowers was of sound mind and in complete understanding of his condition at the time he was given an option to die?  Could any human being demonstrate logical reasoning and exercise keen judgment after suffering such emotional and physical trauma?  Of course not.  Tim Bower’s was a shattered and confused young man just as any of us would be after enduring such a nightmarish ordeal.  Furthermore, there is no way Mr. Bowers could have fully understood his plight in light of the fact that medical doctors cannot even detail prognosis at such an early stage.  Traumatic spinal cord injuries are exceedingly unpredictable which make adequate assessment especially in the first hours following injury arduous at best.                                                                                                                                         

All of this raises the next question: why was Tim Bowers’ case handled with such blatant haste?  Has human life lost its value?  After all, Mr. Bowers was not in a vegetative state.  He did not suffer a brain injury.  He could have expressed his wishes at any time in the days or weeks to follow.  Why not slow down, wait a few days, let the patient rest, get his bearings, and reassess options after the situation gains stability?   In fact, it is widely known among the medical community that a progressive loss of function will occur during the initial 24 hour period following spinal trauma.  After this time, edema in the region of injury begins to subside as some areas may even reestablish circulation.  After a 72 hour period, the American Spinal Injury Association guide is followed as initial sensory and motor function is assessed and documented.  In addition, radiology can attain new images that may offer more information to doctors and patient regarding functional outcome.  Also, with additional time, the rehabilitation department can be consulted whereas individuals can gain a better understanding of daily life given persistent paralysis.  In accordance, psychiatric services can assess the individual’s mental state and aid in his or her understanding of the situation.  In lieu of all this, it is clear, that given even just a few days, Tim Bowers could have been equipped with crucial pragmatic knowledge to apply to his life and death decision.                                                                 

Put simply, Timothy Bowers was neither courageous nor cowardice in his accordance with death.   Instead, he was a broken young man inundated with emotional and physical exhaustion brought on by the horrific events of his nightmarish day.  He was, no doubt, plagued by sedation-induced brain fog, total confusion, and immeasurable grief at the time he was approached with an option to die.  Tim Bowers was the beneficiary of the perfect storm:  a family, so adamant they knew his wishes from past conversations based on the hypothetical, they chose to wake him from his medically induced resting state; and doctors, so exceedingly eager to give the illusion of patient autonomy, they lost all medical judgment.  The health care system failed Mr. Bowers and his family.  Physicians put Tim Bowers in a position to end his life despite understanding the distressing physiological aspects of acute spinal trauma and the adverse cognitive effects of sedation.  To appreciate just how senseless this was consider the fact that doctors routinely advise patients to avoid driving a motor vehicle due to impaired judgment, thinking and motors skills following medical sedation alone.  However, doctors allowed Tim Bowers to “decide” if he wanted to live or die. This practice was not only careless, but by many standards, it was criminal.                     

Advocating and granting patient autonomy within our healthcare system is vitally important.  All of us, as human beings, should possess the right to determine the course of our medical treatment.  However, the concept of patient autonomy only works in the best interest of the individual when he or she is of sound mind and well informed.  Tim Bowers, the young father-to-be, was neither.  The actions of the hospital and physicians involved in his case were, at the very least, impulsive, irrational and reprehensible. They effectively committed a fatal injustice by disguising such careless practice as championing patient autonomy.   This type of deception has no place in a compassionate and ethical health care system.

Tim Bowers and Lethal Language

This Friday I am giving a talk about the death of Tim Bowers. Bowers died within 24 hours of a devastating cervical spinal cord injury. Bowers death was highly unusual and controversial. The day after his injury at the family's request Bowers was taken out of heavy sedation and told of his condition. In emotionally laden language Bowers was told he would be a vent dependent quad. Bowers pregnant wife told him he would never be able to hold their child. In all likelihood Bowers would live in a nursing home totally dependent on others. Given this prognosis, Bowers chose to die and the vent that kept him alive was removed. He died shortly afterwards. 

Bioethicists such as Art Caplan, praised the family and physicians involved. A prefect case of a patient asserting his autonomy. I read this statement and shake my head in wonder. What if Bowers had been severely burned? Would he have been given the same "choice"? I think not. What disturbs me is the unquestioned assumption that life as a vent dependent quad lacks any value. When I think of Bowers I am taken back in time to the first year I was paralyzed. There were no high level quads. One night I asked why were there no upper level quads. I was told to think about it. Puzzled I could not come up with a logical answer. Think about it I was told. Would you want to live as a C-3 quad instead of being a T-3 para. Of course not. Nature I was told was allowed to take its course. The logic apparently was any injury above C-8 was not worth living. At C-8 the thinking was one could still transfer independently with a sliding board. Any injury above C-8 created a life of physical dependence that was not worth living. Not much has changed in 30 years. A C-8 SCI has been replaced by being vent dependent. The lethal logic circa 1978 has not changed. Being paralyzed leads to diminished quality of life. Expectations, typical life experiences, are believed to be impossible to obtain or achieve. This belief is deeply ingrained in the American psyche. Lethal thoughts can and do lead to lethal actions. 

If readers happen to be in the Syracuse are information about my talk is below. 

Consortium for Culture and Medicine Seminar 
 Friday, March 28, 2014 
4 to 5 pm 
Room 1507/1508 Setnor Academic Building 
766 Irving Ave 
                 
“Does Lethal Language lead to Lethal Treatment? End-of-Life Issues”

          
William J. Peace, PhD
Renee Crown Honors Program, Syracuse University 
                  
We will discuss the decision-making strategies that take place
immediately after devastating injuries, focusing in particular on
decisions to remove patients from life-sustaining treatment. Of
particular interest are patient autonomy, the notion of dignity,
terminal sedation, and VSED (voluntary suspension of eating and
drinking).  The story of Timothy Bowers, the hunter who was taken off
life-sustaining treatment twenty-four hours after experiencing a
devastating spinal cord injury, will serve as a test case. 
         
Free and open to the public