A powerful essay in the July-August Hastings Center Report describes a chilling encounter between a physician and a seriously ill disabled patient. The author, William J. Peace, who has been paralyzed from the waist down since 1978, was hospitalized two years ago with a large, grossly infected stage four wound. While he had no illusions about the gravity of his condition – he would be bedbound for at least six months, dependent on others, and saddled with staggering unreimbursed medical bills – he was unprepared for what a hospital physician said to him. “He informed me I had the right to forego any medication, including the lifesaving antibiotics,” Peace writes. “Although not explicitly stated, the message was loud and clear. I can help you die peacefully.”
Peace concludes that his experience was not an isolated case, but instead was evidence of pervasive discrimination against people with disabilities. “Many people – the physician I met that fateful night included – assume disability is a fate worse than death,” he writes.
Was Peace’s experience unique? Is his assessment accurate? We invited commentaries from leaders in disability rights scholarship and advocacy and a physician recognized for exemplary care of patients at the end of life. Commentaries will appear over the next week or so, with response from Peace. We welcome comments and additional posts from readers. Here is the first commentary, by Diane Coleman and Stephen Drake, of Not Dead Yet.
It's difficult for us to believe that Bill Peace's story would really surprise anyone entrenched in bioethics and “end of life” issues. Anyone paying close attention to various news stories and occasional journal articles would be pretty sure there are more stories – some arguably worse – just waiting to be told. For a story, of course, you need a survivor who is able and willing to tell it. And of course, the storyteller needs a venue – we owe Bill Peace and The Hastings Center our thanks for making those elements come together.
The most surprising thing about Bill Peace's article concerning his experience with the hospitalist is that it appeared in a bioethics journal at all. The second surprising aspect of his experience is that we're having a publicly accessible discussion about it. The many ways that medical professionals push disabled people toward death are absent from journals – or masked in jargon and euphemisms. Subjects like Bill Peace's story are certainly absent in venues in which bioethicists engage the public – as though there are discussions that the professional class would prefer we (the public) not be a part of. Recently, however, the wall of silence shows signs of cracking.
Three years ago an online series of articles about dying featured an entry by a young quadriplegic woman who did not die. At age 19, Terrie Lincoln was in a coma from an automobile accident when doctors repeatedly urged her parents to withdraw life support and spare her a future life with serious disability. When she awoke they approached her with the promise that they could make her dying comfortable. She and her family resisted and over a decade later she is now raising her young daughter and living happily using a motorized wheelchair and receiving daily personal care services.
That's only one case but there are indications that it represents a pattern. Prominent neurologist Dr. Joseph Fins, who is also a Hastings Center board member and Fellow, has made some major statements that should have gotten a response from the bioethics community but have not. In a December 2011 New York Times Magazine interview, Dr. Fins stated that the families of people with new brain injuries were too often wrongly urged to withdraw life-support leading to the patient's death before enough time had elapsed to enable a reasonable prognosis about their future recovery. In a March 2012 article in Virtual Mentor, the American Medical Association’s journal of ethics, Dr. Fins stated that he felt he needed to resign from the board of an organ procurement organization because of its aggressive and “predatory” approaches to families of individuals in intensive care units. Families whose relatives survived reported that they had been pressured to withdraw life support and make their relative’s organs available for transplant.
The National Disability Rights Network, an association of organizations charged with safeguarding the rights of disabled people, issued a report in May condemning decisions to withhold life-sustaining treatment from people with disabilities who were neither terminally ill nor diagnosed in a permanent vegetative state, pointing out that these practices violate constitutional and civil rights. One case of this nature occurred in Pennsylvania beginning in 2007 when the parents of a man with developmental disabilities went to court seeking to withdraw life support when he temporarily needed a ventilator due to aspiration pneumonia. When the court denied the parents this option and the man survived and returned to the group home in which he resided, his parents pursued an appeal to the state Supreme Court in case the opportunity to withhold treatment should arise again. Fortunately the state Supreme Court denied the appeal in a 2010 ruling. Not even Art Caplan, who writes columns on bioethics, wrote about this major legal decision in what was then his own backyard.
So against this backdrop, the unusual thing about Bill Peace's story is that it is being discussed in a bioethics journal.
Regarding the story itself one can envision a best-case scenario in which the doctor’s outrageous words and behavior could be explained as innocent and well-meaning. His laundry list of horrors facing Bill, which go far beyond the medical prognosis to include extreme financial and lifestyle losses, could have been informed by actual experiences of his patients. The doctor might also have been aware of the palliative care information law passed in New York, where Bill was treated, in 2010. Though the provisions did not go into effect until 2011, they were on the horizon in 2010 and require doctors to disclose end-of-life care options under circumstances that could reasonably include the kind of life-threatening condition that Bill faced. Perhaps the doctor came to Bill in the middle of the night because for him it was simply the end of a long day at work, with other appointments finished and finally with time to have a more lengthy discussion of an important subject. Best case scenario.
Whatever motivated the doctor, it should be clear that the doctor's words were the last thing that Bill needed to hear at that point. The disability community opposes the type of palliative care information bill that forces doctors, with no discretion as to timing, to discuss so-called "end-of-life" options with people who have just been given a new diagnosis of a potentially terminal or severely disabling condition or are fighting for survival in the midst of a medical crisis with an uncertain outcome. Such laws invite the kinds of mistakes that this doctor made in speaking with Bill in the middle of the night and should be amended with language that allows flexibility in the timing of palliative care disclosures, requires an interdisciplinary team approach to the individual and family, and affirms the core value of providing emotional as well as physical support.
Diane Coleman is the president and CEO and Stephen Drake is a research analyst of Not Dead Yet, a national disability rights organization.