We lost someone this summer. The worst part is that he knew it would happen. The worst part is that his medical “care” both anticipated and allowed for his death. The worst part is that we needed him. The worst part is that he was wonderful. The worst part is that if we turned back the clock it feels like it would happen again, in a hideous repetition. The worst part is that more will be lost in just the same way.
Last December, I sat down and hand-wrote a letter on a couple sheets of paper for the first time in many, many years. I found myself wondering, looking at the paper, in a way that never happens with emails or other communications, how the recipient would experience it. I tucked it into a card and mailed it to the new address I had weaseled out of a mutual friend. Bill Peace, whom I first met in person in early 2013, had posted online about his deep despair, and that he felt alone and – for the first time – suicidal. Yes, for the first time, despite the fact that a physician assigned to his care had once “invited” him to consider suicide. I didn’t know what to do except write him a letter, and the fact that I didn’t know what to do makes me angry.
None of his many, many friends, who immediately and continuously for the next several weeks deluged him with notes, affirmation, and long messages, knew how to intervene in the one crucial issue that led to this point. This issue was not a lack of friendship, not a lack of love, not a lack of companionship, or meaning, or direction. It was simple but devastating. Bill had a wound, this wound was life threatening, and even though he knew how menacing it was and that he absolutely needed to receive the right care, he did not receive the right care. He could not afford what he needed. His wound care specialist did not give him what he needed. He could not relieve pressure. He developed more wounds. He died of sepsis. This is despite the fact that, as he wrote earlier this year, “I am not the average wound patient. I am highly educated and articulate. I am compliant in the extreme.” Bill wrote about wounds dozens of times on his blog, Bad Cripple. Bill knew how he was going to die.
On April 24, three months before he died, Bill wrote: “For 40+ years I have known exactly how dangerous skin woes can be. I have always had a visceral fear of wounds and been exceedingly cautious. Even the most minor wound can send me into a tailspin of depression and fear because I know a minor wound can blossom into a life threatening wound in days. Sepsis can set in and one can die very quickly. I learned all about sepsis in 2010 when a wound almost ended my life. I also learned just how uncaring wound care specialists are. The lack of empathy is shocking to me especially given my work in bioethics where the academic literature about empathy, beneficence, and autonomy abounds.”
He wrote, “Selective empathy when disability and health care collide are a deadly force.”
He wrote: “Insurance does not cover anything bed related that would relieve pressure. Insurance covers gauze pads and no other dressing. In the last few months I have spent well in excess of $10,000 on copays, wound care dressings, and various tests. When I bring this up with wound care there is an uncomfortable silence and vague suggestions are made about possible programs I could benefit from.”
Bill knew what he needed: “The solution is obvious but unaffordable. A clinitron bed or air fluidized therapy would relieve all pressure.”
Bill was angry, and resplendent in his anger. Let’s do him the justice of being angry, too, and continuing in anger at the fatal ableism in and inaccessibility of medicine.
A Selected Bibliography
Peace, William J. 2012. “Comfort Care as Denial of Personhood.” Hastings Center Report 42, No. 4: 14-17.