I read "A Life-or-Death Situation" by Robin Marantz Henig early this morning. It was not a good way to start my day. See http://www.nytimes.com/2013/07/21/magazine/a-life-or-death-situation.html?pagewanted=all&_r=0 In fact it has taken me all day to calm down. Henig's characterization of the life and body of Brooke Hopkins is disturbing and the title of her article is misleading. Brooke Hopkins and his wife Margaret Battin live in Utah and were a typical academic couple until 2008. Their life changed in an instant when Hopkins had a bike accident and became an upper level quadriplegic. Hopkins, recently retired, was a professor of English at the University of Utah. Battin is described as being an "international leader in bioethics" whose work has focused on suffering, suicide, and dignified death. While never explicitly stated, Hopkins and Battin are supposedly ideal people to discuss end of life issues. Battin has published widely on the matter and her husband is a learned man who post injury is the embodiment of end of life issues (by itself this is misleading). Henig obviously loved the irony involved and used Hopkins and Battin to personalize end of life care. In short, Hopkins and Battin are the perfect hook to lure in readers.
Within a few paragraphs I knew the article would be hopelessly distorted and anti disability. The descriptions of Hopkins body are deeply offensive. The not so subtle sub text is that life with a disability, especially for a vent dependent quad, is filled with pain and suffering. Such a life is terrible for Hopkins and by extension his wife. This point is made with the subtlety of a brick thrown through a plate glass window. Prior to his injury Henig makes it clear that Hopkins was a virile man who traveled the world. He was a larger than life figure and to be rendered a quadriplegic is a fate worse than death and his only saving grace is his powerful intellect. Of course Henig does not express this so bluntly. Instead she peppers her essay with the following:
By the time Battin saw her husband post injury he was "ensnared in the life sustaining machinery he hoped to avoid, the decisions about intervention already had been made".
Henig plays up the irony of Battin's scholarly work and how suddenly "they turned unbearably personal. Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality--and would discover just how messy, raw and muddled the end of life can be".
In the weeks after Hopkins injury Battin's effort to support self determination in dying was called into question by "her husband, a plugged-in mannequin in the I.C.U., the very embodiment of a right-to-die case study".
Hopkins was "physically devastated but still free" and capable of making a decision "that would cause anguish". The implied choice was death over disability.
A vibrant energetic man prior to injury, "all that energy went absolutely still at the moment of his collision.
Hopkins and Battin lived the life of scholars but they "learned that no mind can fly free if a useless body's incessant needs".
Hopkins, a month before his 71st birthday, "was dressed as usual: a pullover, polyester pants that snap open all the way sown each leg, a diaper and green crocs".
For Hopkins, "what elevates his life beyond the day-to-ay slog of maintaining it--the vast team effort required to keep his inert sack of a body fed and dressed and clean and functioning--is his continuing ability to teach part time through the University of Utah's adult education program."
"A man who had always taken great joy in preparing, sharing and savoring food decided to give up his final sensory pleasure in order to go on living". (Hopkins had a feeding tube inserted to avoid aspirating food into his lungs.)
I am truly stunned by the descriptions of Hopkins body. He is a plugged in mannequin whose useless body has incessant needs. A dignified man has been reduced to wearing polyester pants and a diaper. When I read passages such as this in the supposedly venerable New York Times I wonder first what was the editor thinking and secondly it is no wonder people have such a skewed concept of disability. Articles such as Henig's perpetuate an overwhelming negative perception of disability. While I find much of what Henig wrote objectionable what bothers me the most is the lost opportunity. Henig mentions Battin does not shy away from fringe groups who push for "self deliverance" at the end of life. When I read this I wondered does Battin shy away from those opposed to assisted suicide and euthanasia? I have no idea because a group such as Not Dead Yet is not even mentioned. In fact no mention is even made of the serious concerns many have with legalizing assisted suicide.
Henig maintains the core principal in Battin's work is autonomy. Common sense indicates a competent person should be free to make an autonomous decision about the end of life. In theory this is logical. However, as I have pointed out many times, we do not live in a world of theories. We live in a flawed world and no human being dies in social isolation. Larger cultural factors exist and profoundly affect how we perceive end of life care. For example, Hopkins was paralyzed much later in life. He had a well established career as did Battin. They have extensive health care insurance and a learned and detailed discussions about end of life issues is well within their realm of ability. But what about others who live a dramatically different life. What if Hopkins was 22 years old and was a day laborer? What if he had no health insurance, no known family, and lived on a third floor walk up apartment in Brooklyn. Does such a man have the same ability to be as autonomous as Hopkins? I think not. Even from a privileged position Battin and Hopkins struggled. They had excellent health insurance through the university and Medicare. This is great but getting an appropriate wheelchair at the cost of $45,000 was a battle. This says nothing of the fact they spend $250,000 on health care workers. These numbers do not surprise me one iota. What people with no exposure to disability fail to realize is that the best insurance in the world cannot empower people with a disability. And disabled people with health insurance are the lucky ones. Battin and Hopkins embody the failure of the best our health care system offers people with a disability. We people with a disability are in short set up to fail and die.
It is one thing to discuss lofty ideals of autonomy but another to live in a hostile world that deems people with a disability as an economic drain. Battin and Hopkins are lucky--hard to imagine this I know. The man I described above who experiences a SCI injury is screwed. He is doomed to fail despite the fact he enjoys the same civil rights as Hopkins. Who will advocate for him? No one. Maybe a bored social worker will make an effort but the fact is nationwide resources for people with a disability are grossly inadequate. Talk about patient centered care and autonomy do not mean much when you are a young man facing life in a nursing home. Suicidal thoughts for this man are a logical reaction to an impossible situation. Forget about suicide prevention--his desire to die is logical.
People who advocate for assisted suicide legislation do not want to enter into a discussion about social inequities and a corrupt for profit health insurance industry. Compassion and Choices and other advocacy groups that push for legalizing assisted suicide rely on gruesome end of life stories. As recently noted by Marilyn Golden in the Sacramento Bee, no one wants to discuss Barbara Wagner, Kate Cheney, or Randy Stroup (for those that never heard these names a simple google search is suggested). No one wants to talk about Don Mackay in Australia whose death was tragic. I urge people to read Theresa Mackay's Without Due Care. One could also read Barbara Farlow's work about her daughter Annie who died needlessly. Gripping reading can be found in the work of parents with children and adults with a profound disabilities--these are the most vulnerable and socially isolated individuals in our world. These parents struggle to get adequate care for their children. Abuse is rampant among the profoundly disabled and lead to ethically questionable treatments such as growth attenuation.
I fear my words will fail to resonate. I am preaching to the choir here. The comments that follow Henig's article in the NYT are largely supportive if not effusive in praise. I expected this. Whenever a person with a disability expresses a desire to die the collective response is supportive. People with a disability that express a desire to die are brave. They are heros. Of course you want to die. This is a logical response to disability. Those that want to live are a problem and quickly deemed bitter. I urge people not to be swayed by emotion. Take a hard look at end of life issues, assisted suicide legislation, and how the elderly, terminally ill and people with a disability struggle financially and socially. Put yourself in the position of a person with a disability. What happens when a person with a disability becomes seriously ill? Diagnostic equipment and hospitals rooms are notoriously inaccessible. Worse, disabled bodies require more labor and expensive technology. In a for profit health care system we are an economic drain. But do not stop there. How many families are willing to support a person, an elderly terminally ill parent for instance, until all finances have been spent? The point I am trying to get at is the social pressures are crushing. Some people are forced to decide between health care and a child's tuition payments. In short, my reaction to Henig's article is different. I see the ethical conundrums at the end of life as being messy, complex and inherently flawed. Assisted suicide is not the answer. We as human beings can do much better.
