It may be more than just discrimination at work.
As is to be expected, once people start reflecting on an essay as important and provocative as Bill Peace's “Comfort Care as Denial of Personhood,” it seems there are ever more layers and aspects that beg exploration, discussion, and illumination.
Theresa Soriano is probably the third physician either one of us has witnessed apologizing for the behavior of another doctor toward an individual. Much of what she had to say about a physician's duty to listen is a constant theme in The Best Care Possible, a new book by Ira Byock.
I am left wishing that there were more physicians like Ira Byock and Theresa Soriano; not only are few doctors proficient at listening – an alarming minority are outright hostile to patient input.
Bill's ordeal offers a prime example of why we almost always put scare quotes around the term “end of life.” It's clear that the physician was steering Bill toward making “end-of-life” choices, which in this case would be defined as “decisions that will end your life.” This is an increasingly common use of the term – to deceptively describe the assignation of a disabled person to “end-of-life” status by virtue of decisions (chosen or imposed) that will end the person's life, although the person may not, or even definitely would not, die if the decision were different.
And as Anita Silvers says, fear of the medical system figures prominently in narratives produced by disabled people. The trouble with narratives is that the very professionals we'd like to reach label them as “anecdotes” and, therefore, subjective accounts. The narratives of medical professionals (aka case studies) are contrastingly treated as more authoritative, objective, and representative of the overall picture than those of the individuals who survive the sometimes none-too-tender mercies of the system.
We tend to think that the situation for people with disabilities is getting worse rather than better. Not only are people with disabilities devalued in the medical setting (and those with cognitive disabilities most of all), but increasingly we are seen as potentially valuable resources for our body parts. This, at least, seems to be where Dr. Joseph Fins is going when he talks about the aggressiveness of organ procurement organization representatives as felt by families whose loved ones survived a stint in an intensive care unit, as we noted in our previous post.
For some time, we have seen news stories crop up about so-called “miraculous” cases involving comatose individuals who were diagnosed to be in an irreversible “vegetative state” and suddenly woke up. But they’re not at all miraculous if the appropriate neurological waiting period had not yet passed to enable a statistically reasonable prognosis. We’re calling these “rush to judgment” cases. Unfortunately, we only hear of these cases when a family dispute arises about whether to withdraw life support so early after injury. How many others die because no one had the knowledge or will to fight for more time?
The sad conclusion one might draw is that when an individual's parts are seen as more valuable than the individual, that individual's survival is in grave peril.
Diane Coleman is the president and CEO and Stephen Drake is a research analyst of Not Dead Yet, a national disability rights organization.