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Wednesday, March 26, 2014

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.


Lynn said...

This is excellent. The author does a brilliant job of articulating the context that gets stripped away in the packaging of this story as an example of patient choice and autonomy. What was done to Mr. Bowers was cruel, and I agree that "criminal" is not too strong a word.

Like JL, I am a physical therapist and have spent time with many people who have experienced devastating injuries. The thought that this could have been done to them in their most vulnerable moments - it makes me ill to imagine it. And the fact that this one case somehow became a public event creates the illusion that it was an isolated incident, but surely it was not; how often do similar situations play out, with outsiders told only a simple and believable narrative that the injury was too severe for the person to survive?

There is another ugly side to this story too - that of what people with disabling injuries can expect in the US health care system today. No statement was ever made about what insurance Mr. Bowers had, if any. It is naive to think that financial considerations did not play a part in what occurred. And what is reprehensible on a broad scale is that, while telling Mr. Bowers that he would likely spend his life in a nursing home was cruel and unnecessary, the fact long-term institutionalization IS a reality for many people with disabilities in this country is equally cruel and unnecessary. Independent living is not only possible, but more cost-effective than nursing home care; but the nursing home industry is powerful, and thus the resources to keep people in institutions are easier to come by than the resources that allow people to live full, self-directed lives in the community. Rehabilitation stays have become shorter and shorter, and people with significant injuries are not being adequately equipped to succeed, but rather are being railroaded into institutional settings with no clear path back out. The fact that mentioning a nursing home to Tim Bowers was not purely a malicious lie is, in its own way, every bit as criminal as what was done to him. So much that the pioneers of the Independent Living movement fought for is slipping away, and tragedies like this are the result.

william Peace said...

JL Response.

Thank you for weighing into the discussion with such useful insight. You are absolutely right. The lack of long term resources available to those incurring disabilities is indeed criminal. Our healthcare system is heading down a disgraceful and deadly path as quality of life is forfeited in the name of cost effectiveness. I believe we, as physical therapists and healthcare providers, must come forward and expose the many injustices endured by disabled individuals. There is no room for passiveness. We must be willing to take on doctors, insurance providers and any other entity that stands between us and the quality of care our patients deserve. Thank you for obviously understanding this very core concept. We can make a difference!

Lynn said...

Thanks, JL. I agree that, within the context of the medical system, we have to fight tooth and nail for the services and resources that people need. The problem is that, as daunting as that kind of advocacy has become, it isn't even half the battle. So much of the penny-wise/pound-foolish "cost containment" that is shutting people with disabilities out of the lives they deserve is happening outside the boundaries of the medical system. Resources that depend on a rationale based in a *social* model of disability are even more vulnerable than those rooted in the medical model. If the world beyond "rehab" is going to make it impossible for people to access affordable & accessible housing, attendant care, equipment, transportation, education, and employment... what are our "rehab goals" to be??

Here is a case study that touches on many of the same issues as the Tim Bowers case: (Bill, I may have cited this case in your comments before; sorry if I'm being redundant.) This young man, Albert, also sustained an injury that rendered him quadriplegic and vent dependent. And indeed, his mother's remarks make clear that the possibility of letting him die was raised during the acute phase.

She says: They said he wouldn't be able to move; it was like he was gonna be a vegetable. It was almost saying, "You guys need to make a decision whether or not you're gonna take him off the machine," and we said "No, no."

(So already, we've equated not being able to move with being a "vegetable," and we've established that Albert was kept alive only at his parents' insistence.)

Albert was ALREADY IN A NURSING HOME when the Ranken Jordan doctors came to evaluate him. He would have remained there, had not the Ranken Jordan doctors decided that he had "rehab potential." Why did they deem that he had "rehab potential"...? Because they discovered that his injury was IMCOMPLETE. In the words of the video:

"Doctor Evra was the one who recognized right away that he had an incomplete spinal cord injury. That makes all the difference. He has sensation. He has muscle strength in legs and his arms and his hands. It's the difference between lying in bed staring at the ceiling for the rest of your life and being a part of the community, being a part of this family, being back in his life again."

Now, these words come from a well-regarded pediatric rehab facility that clearly has the best interests of young people with disabilities at heart. And yet... look at what they're saying! If Albert had an COMPLETE injury, then it would be ACCEPTABLE for him to spend the rest of his life in a nursing home, "staring at the ceiling." If he had a COMPLETE injury, then we should NOT expect him to be a part of the community and a part of his family. A person with a COMPLETE injury should NOT expect ever to "be back in his life again." These people represent the views of rehab professionals, and they say this things WITHOUT SHAME.

THIS is what we're up against. There is such bigotry against people with severe disabilities that even those who are supposed to be advocates are willing to write them off in this way. And it is self fulfilling prophecy, because when people are written off, the assumption that their lives are not worth living very quickly becomes true. Their future is bleak, not inevitably, but because we are willing to relegate them to that bleak future. And we are willing to paint a picture of that bleak future to people like Tim Bowers, and then call it their choice when they would rather die. That's a "choice" in the way that leaping from a burning building is a choice; the real choice was made by those who set the building on fire in the first place.

william Peace said...

More from JL

Great point, Lynn. Very well expressed. You are right. Quality of life resources for the severely disabled are virtually absent outside the realm of health care. As a result, taking on the medical system is as you said "only half the battle.” I truly believe it to be a societal issue. We live in a self-serving, and self –absorbed culture. It is not “our” problem but rather “theirs” type of ideology. This individual-centered way of thinking spills over to the broader community. This matters because accessible housing, transportation, education, employment, etc. are all community issues. However, when these services are viewed by the larger population as “disabled” concerns, they receive little to no consideration. And, of course, this means little to no funding. I assume this is why I tend to center my focus on the limitations within the health care system. But, you are absolutely correct, community resources available to the severely disabled are grossly inadequate and the bigotry toward those living with significant functional limitations is inexcusable. Tim Bowers’ death serves as an example of this prejudice. Support grew for his prompt demise because, after all, he would have been disabled. Get him out here. Problem solved.

william Peace said...

Lynn and JL,

The problem is that no one believes bigotry against the disabled exists. Bigotry is perceived only in terms of racism. My civil rights approach to disability is an affront to many. The "problems" I encounter are just that--isolated "problems" or "mistakes" that affect an individual. This when I am outraged I am dismissed as a narcissist. Frustrating in the extreme.

GirlWithTheCane said...

I hadn't heard about this case.

How terrible...just awful.

I may blog on this.

CuseGuy said...

Mr. Peace Not responding to anyone article, I just found your blog.

I found you on Syracuse University's Daily Orange newspaper. If only I knew you were speaking.

My story is somewhat different as I was born with epilepsy and trouble speaking.

My first thoughts are that I don't label myself handicap or disable. My second thoughts are that I have never participated or shared my thoughts in a forum or in any like manner.

I need to read some of your blog, my first impression is my story/situation is different.
As I am now looking for blog or website of those similar to my situation.