Rachel Cohen-Rottenberg of http://www.disabilityandrepresentation.com/ alerted True Dignity to an article in the July-August issue of the Hastings Report detailing the horrifying hospitalization experience of a man with disabilities. We hope to print it, and the excellent commentary on it by disability rights activists Stephen Drake and Diane Coleman; but have found that doing so requires the publisher’s permission, which will take an unknown amount of time to arrive, if it does. The article and commentary, however, are available for no charge right now at http://networkedblogs.com/zM029. The commentary comes up first and contains a link to the original article; the link leads to an abstract, but the full article is available by clicking on links for either an html or PDF version.
Both the article and the commentary are enlightening reading for people seeking to understand why disability rights groups are leading the opposition to legalizing assisted suicide. Substitute “terminal illness”, “serious illness”, or “old age” for “disabilities”, and it is easy to understand why we should all oppose legalization.
William Peace has been paralyzed from the waist down since 1978. The incident related in the article occurred in 2010.
Hospitalized with his first life-threatening infection since becoming paralyzed, with a very high fever, vomiting uncontrollably, Peace received a middle of the night visit from a doctor he did not know, a hospitalist. Hospitalists, usually trained as internists or family practitioners, are hospital employees who take over the care of hospitalized patients from their primary care doctors or from the specialists who sent them to the hospital (http://www.medicinenet.com/script/main/art.asp?articlekey=93946). The use of hospitalists is a new phenomenon. In the past a patient’s own doctor would visit him in the hospital and retain control over his care. Peace believes that what happened next would never have happened had he been under the care of his own doctor.
After examining Peace in what he perceived to be a “coldly efficient” way, this doctor, who had never before met him, asked the nurse who had accompanied him to leave the room. This is how Peace describes what happened and his reaction to it:
What transpired after the nurse exited the room has haunted me. Paralyzed me with fear. The hospitalist asked me if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.
This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people. The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA (which Peace did not have) was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.
His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully.
Peace told the hospitalist the he wanted treatment, wanted to live. Though his wishes were honored, the fear spawned by that night’s encounter has never left him. Not only was much of what the physician told him true (the long recovery, the dependency, the expense beyond insurance coverage, though the article itself is proof that all this was temporary), but he continues to have to cope with something he had not understood before: “…my existence as a person with a disability was not valued. Many people—the physician I met that fateful night included—assume disability is a fate worse than death.”
Peace contends that the health profession’s stereotyping of people with disabilities is widespread and “…the ultimate insult. A highly educated person who should be free of bias and bigotry deems your very existence, your life, unworthy of living.” He knows that many people with disabilities live in fear of doctors and hospitals. To prove it he offers anecdotes from memoirs, including one in which a doctor appears to offer pro-active assistance in suicide, rather than simply comfort care as an alternative to life-saving treatment.
Diane Coleman and Stephen Drake’s commentary offers more anecdotal evidence of how the attitudes of medical professionals threaten the lives of people with disabilities even if only the withdrawal of life sustaining care would render their illnesses terminal. They postulate a “best case scenario” in which the doctor’s remarks were either “innocent and well-meaning” or the result of a NY law requiring physicians to give patients information about end of life options.
A couple of years ago such a law was considered but not adopted by the Vermont legislature. The current political climate, however, makes it very easy to envision a nightmare future time in Vermont. In that nightmare, the government would have become everyone’s mandatory insurance provider, cost-cutting would have become the marker of medical success, doctors would be required to list end of life options, and assisted suicide would be legal. In that time, every person facing serious illness would be justified in feeling the paralyzing fear people with disabilities feel now and would feel even more strongly then. The reality is that no one whose continued existence requires care is safe in our culture. It would be less safe if assisted suicide were legal.
Coleman and Drake’s commentary explains the fact that the bioethics community has conducted little public discussion of the medical bias against people with disabilities with the following chilling statement: “For a story, of course, you need a survivor who is able and willing to tell it.”
This is the same reason True Dignity believes we don’t have more anecdotes to counter assertions that Oregon’s experience with assisted suicide has proven it to be “safe”, though the ones we do have are horrifying. Dead people tell no tales, whether they are people with traditional disabilities or people disabled by serious illness and either murdered by criminals clever enough to recognize the impunity offered by assisted suicide or who committed suicide with assistance because they felt social or familial pressure, even if unintentional, to spare everyone the emotional and financial cost of their care. In either case, we will simply never know.
True Dignity hopes that Vermonters, and people anywhere the legalization of assisted suicide is being considered, will take charge of their own futures and insist that better care and more safety, both during and at the end of life, be the hallmarks of our future health care system, not subtle or not so subtle pressure toward suicide.