Note: Some profanity will be required.
Among a number of expressions that have gained prominence with COVID19 is along the lines of, “the treatment cannot be worse than the problem.” As a matter of *personal* choice, this a 100% valid decision for health care. As a matter of public policy or in the situation of someone having to make decisions on behalf of someone else, this is profoundly problematic. How you decide for yourself is totally your right, and make sure that everyone who may be involved in your care if you should ever become incapacitated knows what you want. How you decide on behalf of others should be informed by what THEY want or would want if they were able to express for themselves. This may result in conversations that are difficult, and I am very willing to support you/them in whatever ways I can.
I strongly believe that these conversations benefit from the structure offered by the four questions framed by Dr. Atul Gawande in “Being Mortal”, and an additional one included from Arthur Frank’s “Wounded Storyteller.” Essentially, as follows:
1. Do I understand what is happening?
2. What am I willing to do for a chance at staying alive?
3. What level of being alive is meaningful to me?
4. Could it get worse?
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying?
Can the response be worse than the problem and still be worth pursuing? YES. I was absolutely unaware of my kidney failure until my physician had a piece of paper with numbers on it and said I had to be hospitalized immediately. The level of mindfuckery around trying to reconcile how I thought I understood my own body and how dialysis felt remains a source of intense anxiety to this day — am I as ‘well’ as I think I am, or am I actually desperately ‘sick’ on the precipice of dying in front of my family and don’t even know it? My son was uncomfortable with appendicitis, but it presented in an ‘atypical’ way which meant that he was wholly unprepared for the pain following surgery. They removed the ‘bad’ thing, so it was irreconcilable and reality- or trust-breaking for him to wake up in excruciating delirium (that passed, in time). Enduring digestive crisis with magnesium supplements, which support the health of my heart, is worth it, I think. I could go on, but it comes down to: Would I make decisions about what happens to my BodySelf for the sole reason of being a relief to others? Yes. I would endure nuisance, discomfort, boredom, loneliness, amIstillaworthyperson anxiety, and whothefuckamI pain. If you do not know from direct experience how each of those impact health care responses, you have been fortunate to avoid significant illness and perhaps should listen to many more stories from many more people before weighing in on this as a crisis for society.
Can the response be worse than the problem and still be worth pursuing? Well, YOU be you and tell everyone what you want for yourself. From the stance of a National and International response, we need to think carefully about what that means medically, ethically, and socially.
End blip.