My local newspaper (the handling of which is deemed a low-risk vector for infection) interviewed a medical ethicist (whose work I know and respect) about the allocation of resources in a time of scarcity.
In other words, if there aren’t enough ventilators to go around, who gets one? How do we decide? I suddenly feel old. My mind totes up the score. I’m over 65. That’s bad. I rode my bike across the country at 65. That’s good. I have asthma. That’s bad. My asthma is well-controlled; requiring no medication in years except for once last month. That’s good. I work in health care. That’s good, for being someone who should be saved. That’s bad, for being someone who can stay home and stay well. I’m not just resting on my laurels as someone who rode across the country a couple of years ago. I rode the Horribly Hilly Hundreds last last year and am scheduled to ride the Death Ride this year. That’s good, isn’t it?
In other words, I don’t want to die yet. Most of us don’t. While I accept death as part of life and as something that will happen to me, not just everybody else, I don’t want it to be now, as part of this pandemic.
But this keeping score is scary. I don’t want to think about whether I deserve to live more than someone else. What’s the difference between a person with diabetes, coronary artery disease, and COPD; and a healthy person with no chronic diseases, but paraplegia? What about someone with quadriplegia who already uses a ventilator? Disability is not the same as chronic illness. Living with one or the other is not the same as dying.
There is a disability rights movement called Not Dead Yet. They have grappled with these questions for years. Their website contains a link to a paper from the Disability Rights and Education Fund addressing the question of rationing care. Not Dead Yet lists two primary goals: 1) opposing the legalization of assisted suicide and; 2) ensuring that withholding or withdrawal of life-support is truly voluntary.
On the other side of the assisted suicide debate are Death With Dignity and the Hemlock Society (which no longer exists. The death of the organization is chronicled by its founder here). They look at the notion of being able to choose the time and manner of our own death if we have a terminal condition. Not Dead Yet is concerned about the slippery slope of assisted suicide becoming euthanasia, and about the idea that some have more right to live than others.
While these questions are separate, they are often seen as intertwined. By “these questions”, I mean: 1) prioritizing care, 2) assisted suicide, and 3) euthanasia. Peter Ralston talks about the word “confused” as “fused with” (“con” from the Latin word for “with”, and “fuse” “to blend as if by melting together”). While I find no evidence that this is the literal root of the word, it is useful, when we are confused, to see if we are melting together things that we could tease apart and look at separately.
Some questions are easy to answer. If the disease has a choice between taking me or taking one of my kids, take me. I may have more to offer the world, but not as much as they do, with potentially 40 more years to do it in than I have.
Some questions already have rubrics. We have a scoring system in place to decide who gets a new liver when one becomes available. We may not always like the outcome, but it seems to work. In the same way, ethicists can design a rubric to decide who gets the ICU bed or the ventilator. We just don’t have the luxury of time in which to figure it out.
Since I had trouble finding his name, I want it out there: J-L Cauvin.
My wife works from home. As her work is confidential and involves talking, I am exiled for the day. I was forced to go for a long bike ride. A popular route since I was on training wheels is to the town park in Paoli. Usually I refill my water bottles there. Not today. I wasn’t going to since I didn’t have a way to disinfect the handle, but that wasn’t an option.
Social distancing was easy. There was no one out there. I rode past a bunch of loons out on the lake. They are also adept at social distancing. Ducks hang out in groups, but loons are introverts. Only once did I see two close enough to get them in the same frame. After the ride, I went home to get the “real” camera and went back to take pictures. Loons are wily. They dive to hunt and may pop up anywhere. They tended to stay away from me when I had the camera out. If I quietly moved down the path to get closer, one would pop up in the spot I just left. If I focused on one in the distance, another would pop up right below me. After I put the camera away, I swear one popped up directly below me and looked me in the eye.