One of the first take aways from this journey, for me, in a mid-career directional change from emergency medicine to palliative care was a move away from the golden rule and towards the platinum rule. Treat patients the way they want to be treated, not the way we want to be treated.
It is so simple, it allows people to exist in their own context, with their own histories and their own wishes. And, we, as caretakers, take the kind of care of them that they want. Where had that idea been during the past 20 years of my career? How many situations had I judged, wrongly, based on my own preferences, not the preferences of the patient.
In the past few months, as I have begun the clinical portion of re-training my brain, I have been gaining a new perspective on how to see patients for who they are and what they wish for and separating that from what I think I would wish for in their shoes. I have been trying to check myself when I step into the old, well worn, golden rule pathways.
Two patients, in particular, stand out. They each have been in our 10 bed ICU every day I have been there. Palliative care has been consulted on each, signed off, re-consulted time and again. One, just reached his one-year hospital anniversary, the other, his second anniversary. One is a 57-year-old with ALS, vent dependent with a trach, tube fed. Turns out, he is living his best life, now, in a way I do not believe I would want to live. He is fed, bathed, interacted with and cared for, day in and day out. Prior to this hospitalization he lived alone in a tent in the woods,
was isolated from all family and social connections. Apparently, when he first was admitted, his children tried to get back involved, but have subsequently cut off all communication. He continues to have capacity to make his own decisions, there are no long-term care facilities in our state that accept vent dependent patients. He will remain in our unit until he dies. He is okay with that, maybe even more than okay with that.
The second is a 95-year-old man with a doting family. He is vent dependent, has a trach. He defers all decisions to his daughter now, and has for the past many years. His daughter has a strong religious faith that she feels warrants relishing every possible moment one can be alive, in whatever state. Her daughter, the grand-daughter, does not agree and feels her grand-father is being tortured. The daughter is the medical POA. She sits at his bedside 12 hours a day chatting, praying, watching television and reading aloud to him, hoping for a miracle. She will not allow him to be transferred to a facility out of state. Again, there are no facilities in our state that care for vent-dependent patients. I would not wish this on anyone.
It's not about my wishes.
May 7, 2024