Bioethics Forum Essay
Disability Discrimination: Risky Business for “Consenting” Adults
This is the second commentary about “Comfort Care as Denial of Personhood,” a powerful essay in the July-August Hastings Center Report that 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. Read the first commentaryhere. We welcome comments and additional posts from readers.
Peace’s story stirs a familiar feeling of fear in me.
I’ve not yet believed myself to be fighting for my life against professional health-care providers, as Peace apparently did. But from childhood I’ve had to battle health care providers to retain effective functionality despite my physical impairment.
Narratives of such struggles – Peace’s, Harriet McBryde Johnson’s, my own – share a distinctive thread. The protagonists present with three significant markers: our physiological circumstance is atypical, our experiences with the health care system are long-term, and our intentions likely do not conform to what normal or typical patients might be expected to want. While individuals with disabilities, and especially those who have been disabled from youth on (as is true of all three of us), often fit this description, so do others who are not disabled but have similar narratives to relate. Addressing this larger group suggests that a diagnosis other than disability discrimination is needed to get to the source of the difficulty.
What tipped Peace into such profound fear that the experience continues to haunt him? It cannot be encountering disability discrimination, which he himself characterizes as a general societal trouble manifest beyond hospital walls as cruelly as within them. Surely having to deal with disability discrimination has been a frequent activity of his daily living throughout the majority of his life. Nor was his terror likely to have been triggered merely by comfort care’s being mentioned as one among several alternative courses from which the patient is free to choose.
Peace’s narrative spotlights the terror’s source. It’s no accident that he chooses “litany” – which means a prolonged or tedious account – to characterize the “consenting” to which he was subjected. What he had to listen to while being “consented,” or at least what I hear in the story he relates, are words prompted by a health care professional’s compulsion to relieve his own discomfort about the dubiousness of success. Thus the physician’s lengthy recitation and pessimistic prognosis, which to my ear as well as to Peace’s forecasts barriers he will encounter in obtaining the medical services he is sure he needs.
The two have profoundly different perspectives on the risks involved. The hospitalist measures the risk of a bad outcome, and the degree of badness this potential outcome bears, against his experience of patients generally. But Peace’s attitude and assessment differ from the usual patient’s. His life’s history is one of overcoming intimidating odds, often painfully. He is expert at picking up and functioning even if treatment outcomes fall far short of being optimal. To succeed, he knows, calls not only for determination but for the kind of hope the physician’s litany seems aimed to destroy.
The ethical question is about which view of Peace’s future should prevail. It’s hard to see why the prognosis should not be Peace’s hopeful one, as it is epistemologically superior; his intentions not only best serve his interest but are better informed about achievable gain as the actual outcome – his recovery – shows. Peace and other disabled people like him (not all disabled people are like him, of course) are knowledgeable about themselves, are responsive to their specific physiological situation rather than to that of the typical patient, and are well informed about health dangers that might befall them as well as medical services they might need.
As well, people like us are experienced at being functional under adverse health conditions and thus have developed not only knowledge, but also adaptive skills, capacity to maintain morale, and endurance that surpass those of the “normal” patient. These are strengths that everyone, and not just health care professionals, should learn to appreciate. And that, if cultivated generally in the young as they are educated to navigate the health care system, could become typical of patients rather than rare. When health care professionals encounter more such individuals, disabled or not, they will better shape their “consenting” speeches so their outlooks on risk do not appear to be further barriers patients must overcome.
Anita Silvers is Professor and Chair of the Philosophy Department of San Francisco State University.
Posted by Susan Gilbert at 07/16/2012 10:33:07 AM |