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Friday, October 7, 2016

Rights Come to Mind

I was supposed to be in Washington DC today. For a multitude of reasons, I was unable to travel. I was supposed to say a few words about Joseph Fins new book Rights Come to Mind at the American Society for Bioethics and Humanities annual conference. Below is what I was prepared to present. It is longer than most blog posts as Fins work is nothing short of brilliant.

In 2012 I sent Joseph Fins an angry email. At the time, Fins was the President of the American Society of Bioethics and Humanities and I was furious. I planned to attend the upcoming meeting of the ASBH and I had gotten the run around. No one at the ASBH had any information about wheelchair access. A blizzard of emails were exchanged and I was no closer to accessing basic information about wheelchair access at the conference. My inquiries were met with shorter and shorter replies from conference organizers. Based on past experience I knew academic conferences are rarely inviting to scholars with a disability but the ASBH appeared to be openly hostile. When I got a dismissive email that stated “call the hotel” I could not control my fury. My wrath was directed at one man—Fins. I got an instant reply. Fins asked me to call him immediately. I did so and he instantly apologized. I was not the first scholar to complain about the lack of access for scholars with a disability. He told me he knew two other scholars one of whom was blind and the other deaf that had encountered significant barriers at the meetings. Fins also informed me that a ASBH presidential task on disability had been formed years ago and that concrete suggestions had not been enacted. He was clearly as frustrated as I was. Taken aback, I knew I had an ally.

Fins had quietly been working to make the ASBH meetings far more accessible. He suggested we meet in person to strategize—he wanted to work together and make the meetings not just physically accessible but welcoming to scholars with a disability. Fins response was highly unusual. Emails such as the one I sent are typically forwarded multiple times in search of an unlucky individual who is willing to write a reply. Fins and I did meet. He is an easy man to gravitate to. He is gregarious and if he is in a room you know it. What you do not see is how deeply he cares. He cares about people others in the health care system do not want to want to even think about. More than any other scholar I have met who works in bioethics, Fins gets disability. However he gets it in a unique way as physician without a disability. I have only met two physicians in my life that I can say this about—Fins and Arnold Gold.

Fins frustration is readily apparent in his book Rights Come to Mind. Fins marvelously sees a world of possibility among those who are in a minimally conscious state. Fins has no definitive answers. In fact, he raises more questions than answers. His work is deeply unsettling. Regardless of whether a person agrees or disagrees with his conclusions his nuanced discussion forces the reader to think long and hard. I consider Fins book to be the Triste Tropic of neuroscience. While Claude Levi-Strauss went to the Brazilian rain forest in search of humanity Fins delved into the lives of those in a minimally conscious state.  

Fins writing is a griping and wildly evocative. I felt like I was with Fins when he describes meeting the families of those who had a loved one experience a devastating traumatic brain injury. Thanks to remarkable advances in medical technology people survive severe trauma to the brain. The same can be said about spinal cord injuries. Rehabilitation treatment post acute care for those who experience a traumatic brain injury or spinal cord injury is cursory at best. If one does not rapidly improve, in mere weeks by health insurance standards, a person with a traumatic brain injury or spinal cord injury can find themselves in a nursing home before they have begun to grasp the implications of their injury. The subsequent familial, social, and economic implications post injury can and do devastate families. The families that were able to meet Fins are the tip of a much larger population that are carefully and dare I say knowingly hidden away.

Reading Fins book I kept thinking of a single word--disenfranchised. This word describes my life and all those who have experienced a severe spinal cord injury or traumatic brain injury. Disenfranchised describes we survivors. We are the other. Symbolically and practically we are feared, isolated, and marginalized. Our mere presence is upsetting to normates to use RoseMarie Garland Thomsen’s awkward phrase. Yet what I experience as a man with a disability who uses a wheelchair to navigate the world pales in comparison to the people Fins has studied. Fins is focused on a new class of people that have existed since 2002; that year minimally conscious state (MCS) became a diagnostic category. Simply put these people have been written off despite the fact 40% of those thought to be permanent vegetative state after a traumatic brain injury are in a minimally conscious state.

The idea that traumatic brain injuries and spinal cord injuries are static after an undetermined time period is false. What is observed clinically are significant and profound deficits. This is as obvious as it is devastating. The lived experience, however, is radically different. There is a failure of imagination that is astounding to those who go on to live for decades post spinal cord injury and post traumatic brain injury. From a clinical perspective we are medically stabilized, given a few weeks of rehabilitation and never observed again. This process is deadly. Medicine has collectively ignored the class of people Fins wants to help. Fins idea of help is tied to a civil and disability rights framework. This is why Fins book has been repeatedly referred to as quietly revolutionary. Fins work should be mandatory reading for all people concerned with social justice issues foremost among them disability rights. Elegantly written, Fins forces the reader to think the unthinkable. A persons life is saved after a devastating brain injury. After weeks or maybe a few months, a person is deemed to be in a vegetative state. Here the names are well known—Karen Ann Quinlan, Nancy Cruzon, and Terri Schiavo. Family members however see flashes of awareness and cognition. This is quickly dismissed as denial or delusional hope. Fins subtle but revolutionary point is that there is hope for those in a MCS. A damaged brain can and does evolve. The brain can change just as my spinal cord has since I was paralyzed in 1978. Yes, I remain paralyzed but not in the way I once was. Age and time has changed my body and this includes my spinal cord and the same can be said for those who have a traumatic spinal cord injury. This has been observed by parents who care for a child that has had a profound traumatic brain injury and whose cognition was severely damaged. (Peace and Roy 2012; Kittay 2002). Like me, these survivors change as they age. This change is part of life with a disability and modern medicine is ignoring a fundamental aspect of science. Adaptation and human variation is critical to our survival as a species. What we deem normal or even ideal is ever changing and subject to a multitude of forces. Enter Fins and his belief that over long periods of time the brain can evolve and recover to one degree or another. Fins is looking past the deficit and imagining what is possible. Can we reach people in a MCS? Is there hope in what most see as nothing more than tragedy. At Weill Cornell Medical College Fins characterized those that come to see him in the following way:

When they arrive, most are worn out. They are like refugees, having been cast aside by an indifferent health care system that provided brilliant emergency care only to abandon them thereafter. Irrespective of difference in race, ethnicity, class, or state of origin, a stereotypic pattern of neglect emerges… The overall story becomes rather predictable. Families face pervasive nihilism with practitioners assuming a static notion of brain injury. Despite stunning scientific evidence to the contrary, the prevailing view in the clinic is that all brain injuries are immutable. From this perspective, it is preordained that the injured brain cannot recover and that the humane course is to pursue palliative care, to let nature take its course.

The message here is far from subtle. Go away. You are wasting your time caring for such a loved one. Let nature take its course is a euphemism for the life in question is not worth living. Efforts to enhance the life of those who experienced a severe brain injury is a waste of limited health care resources. Devotion of family is perceived to be a problem. I understand both health care workers and family perspectives. A physician is being tasked to treat a person that has experienced a devastating brain injury. Here Fins brilliantly uses the experience of the Worthen family. Maggie Worthen was a senior at Smith College who experienced a brain stem stroke. Maggie survived her stroke and her mother, Nancy, did not believe her daughter was in a permanent vegetative state. After a battery of tests, Fins conformed Nancy Worthen’s belief; her daughter was at times conscious. Over time Maggie was able to communicate via a prosthetic device called My Tobii that tracked her eye movements. Maggie’s life and her mother’s effort to communicate with her is made all the more personal when Fins reveals she died shortly before his book went to press. Nancy Worthen’s quest was deeply personal and this forces the reader to think of Maggie as not a tragic life lost in its prime but rather the death of a human being that had human rights even in a MCS. If the reader does not become misty eyed when reading Fins book they have no heart. Essentially Maggie is the symbolic representation of all the families that sought out Fins who saw hope for their loved ones in a MCS. These families were not in denial. They did not have unrealistic hopes of a full recovery. The families Fins described simply could not give up hope a degree of recovery and communication was possible. Indeed, Fins amply demonstrated familial expectations were modest.   

Fins people, those with disorders of consciousness—especially those in a minimally conscious state—are at the edge of our understanding of what life means. Fins goal, is to give voice to these people and their families. Littered throughout the text are devastating and insightful critiques of society and our health care system. One sentence stood out to me though and I vividly recall pumping my fist after reading the following sentence: “The paradox is striking: the promise of neuroscience and the challenge of reimbursement schema that truncates the potential for recovery. Brains recover by biological standards, not reimbursement criteria”.

The Worthen family narrative is the heart and soul of Fins book.  Lest one doubt Fins, the text is based on exhaustive research. Fins details how we have failed those who are in a minimally conscious state via extended interviews with 53 families. Fins also conducted nearly ninety hours of interviews and produced 2,750 pages of transcripts. The conclusion is as inescapable as it is devastating. Fins “depicts a landscape of clinical neglect”. In essence Fins has penned the first ethnography of those in a MCS. As the custodian of 53 carefully crafted narratives, Fins “seeks to give voice to their struggles and to explain why the scientific study of brain injury, whose mysteries constitute the holy grail of science, has had so little impact on the lived experience of patients who have a tenuous grip on consciousness. Brilliant science and rather indifferent care. It is a paradox worthy of a book, and one ripe for denial”.

There is no question the American health care system has failed the families Fins interviewed. In 2015 Fins spoke at the Society for Neuroscience in Chicago and said the neglect of people with brain injury is “a question of depriving a highly vulnerable group of patients their civil rights”. This is a story people with a disability know all too well. Fins knows he is fighting an uphill battle. Those that understand civil rights and disability rights are one in the same could be characterized as crusaders or a social justice advocates. A few renegades are well known to people with a disability; Ed Roberts, for instance who is considered the father of the independent living movement. I thought of Roberts at the end of Rights Come to Mind because I found his short chapter—“A Call for Advocacy” nothing short of inspiring. Fins wrote:

We must build upon the disability rights movement with its deep debt to its predecessor movements and affirm consciousness as a right that must be recognized, respected, and enabled. It will foster productive science and rectify societal deficiencies that remain untenable, if not inhumane. The goal is a nascent social movement that will place the needs of these patients and families on the legislative agenda, so that in bipartisan fashion they can be fully protected under the law and receive the care and support that they need. To begin we need our generation of Freedom riders, those who won’t wait for the times to change but make them their own. These advocates will join in the long march of a new civil and disability rights struggle.

Where do we start such a movement that Fins calls for? In a word education. In an article about Fins book in the Houston Chronicle Star Fins made a provocative suggestion I want to expand upon. Fins stated “Why not think of rehabilitation as education?”  I would suggest rehabilitation was once educational and the best interests of the patient came first and foremost. In the late 1970s and early 1980s rehabilitation was primitive by contemporary standards. What it lacked in modern technology it more than made up for in its length and intensity. I am not suggesting we return to out dated ideas about paralysis and traumatic brain injury. I am however suggesting modern rehabilitation is horrifically flawed and fails to address the needs of people who experience significant neurological deficits. As I already quoted Fins: “reimbursement schema truncates the potential for recovery. Brains recover by biological standards, not reimbursement criteria”.  People who experience a significant neurological deficit such as a stroke, spinal cord injury or traumatic brain injury are simply not given nearly enough time to recover much less adapt to life post injury. Without question critical care most people receive is outstanding. But the rehabilitation process is swift and cursory. We are setting up people to fail. Worse, for those who Fins writes about they have been given no chance. This failure is not about the limits of modern medical care and rehabilitation efforts but rather a profound statement on the degree to which the lives of people with profound disabilities are not valued.

My suggestion is to add an additional step to the rehabilitation process in the form of an educational rehabilitation center. Borrowing from mental health care, I suggest educational rehabilitation centers be formed in a style much like halfway houses for those recovering from addiction. People post injury need time, support, peer mentoring, job training, communication development, and most of all time to adapt to an injured body. Among those I know who have lived for decades with a profound disability we laugh among ourselves that physicians consider our injuries are static. Our bodies change for better and worse. We adapt to those changes with grace and dignity. It is unfortunate clinicians are unaware and perhaps have no interest in what we might have to say about our quality of life. It gives me great solice and energy to know a man like Fins who is among the most distinguished bioethicists in the nation is advocating for my people. 


Erin said...

I have a neurological condition which in 2012 significantly deteriorated to the point of me going from using a manual chair to being bedridden 24/7 hardly any attenpt was made to get me back into a seated position and due to extreme fatigue from the intensity of the rehab and the speed at which they were attempting it my body crashed even though I'd repeatedly said this is too much too faat too long etc anyways this was only in an acute hospital (in Australia ) where we have a totally different health care system but the flaws are the same they didnt listen to me and instead of improving i deteriorated to the pount where i could no longer do what they wanted so i said sorry this isnt working and just couldn5 go on this left me totally bedridden apatt from an hour a week whwn mu husband took me next door to the botanic gardens in a princess or cloud chair where i was alnost lying flat. During the period where they were doing the so called rehab i was shouted at abuaed and told i was no good by the physical therapist i was told tell me how you think you can sit up well i had no idea how to get that to happen and atill dont 5 years latwr! I was assessed by the actual rehab hospital as being no good for rehab due to being inconsistent during the time i was assessed i was unable to speak wvwry time i sat above 10 degrees! I was told no you cant go to rehab at all why? Well apparently if you dont improve quickly enough you're no good for rehab which I think is disgusting and similar to what you said thet wanted to place me into a group home which is a home in a community which has 2 to 10 people with disabilities in it often with 24/7 care procided like a nursing home
I told them no i fought hard anf between me my husband friends and eventually the media i came home now since then i have deteriorated further i cannot go in the cloud chsir at all and it is a struggle sometimes! But at least i ak home and i am not separate from my husband of 13 years and our cats
I thibk what you have written is so true and the silly thing is that I waa stuck in the acute hospital for 8 months longer than i needed to be so 10 months in total and the gov paid 500000 au dollars for me to stay unnecessarily in the hospital all cos they couldnt afford to pay for help at home which is less than 1/5 of that cost per year!
They said it was impossible to be at home bedridden they said i couldn't manage thet said it would never work yet here i am and i do nanage quite well it is a crazy system and i wish it would change

JJ said...

american medical system is nothing short of corrupt, I am 27 & have had most of my teens & 20's taken because of improper medical treatment. Everytime I get worse & end up in a hospital, they do not address symptoms & tell me to address it outpatient, when it is not possible because I am too sick to do so, & usually if I do have enough energy to get to an appointment the falsely called specialist as usual does not help at all. I am absolutely done tolerating the corruption of american society towards those with disabilities, I nearly cant contain my rage boiling beneath the surface any longer. What you're doing with this blog is Good, Will, I told you this before but it cant be said enough, keep doing what you do.

Dave said...

And the rich get richer, while they disable us more (or disenfranchise). The resources are there to cure spinal injury, to cure brain injury, to make a real difference! Ahhh but who would fund the lifestyles of the rich and powerful if all the money was spent on the petty cripples?