“Well, if I am able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I am willing to go through a lot of pain if I have a shot at that.”

Jack Block PHD father of Susan Block MD regarding his goals of care as retold in Being Mortal by Atul Gawande.

I remember this passage in Atul Gawande’s book as Susan Block tells her story of being her father’s surrogate and realizing she had not asked him what she needed to know; his values and what was a successful outcome for a high risk procedure. She turns around and goes back to the hospital and learns that her father, a Professor Emeritus at Berkley, now loves to watch football on TV. Not what we call soccer, but good old fashion American Football. I think it is the football that is the most shocking part of the story for her. Well people change; their goals change; what is acceptable changes. Goals of Care are a work in progress.

We are seeing a patient in ICU, in his 80’s and he has been in remarkably good health. He exercises daily and is always, always dressed, with coat and tie and dances at the club at least two nights a week. Now after two weeks on the vent his COVID is improving. The oxygen requirements and PEEP are coming down, but it will still be a week before we can do weaning trials. He has necrotic fingertips and toes and will, if he lives long enough, probably auto-amputate some digits. We wonder what else might not have gotten enough blood. His brain, his kidneys, his heart? His family is hoping for a full recovery and the more they tell us about his remarkable life the bigger the chasm between where he is and where he/they hope to be.

We hope for the best, I embrace what they are hoping for. Then share what I fear. “He might die, still” “More than half of COVID patients who need a vent don’t survive.” If he does survive, we are looking at months of medical care. Probably first in a LTAC (Long Term Acute Care) Hospital to get off the vent and dialysis. If the kidneys get better. It means getting a PEG and Trach in the coming days.

It means rehab if he wakes up enough to participate, long-term nursing home care.

It probably does not mean wearing a coat and ties again or going to the gym or being the most desirable dance partner.

We decide together now fully informed go forward with the trach and PEG and this uncertain future.

Maybe, watching baseball on TV and talking with family, seeing grand and great-grandchildren grow for a few more years will be enough.

We do need to stay involved because someday this will likely all become too much and stopping this domino cascade, we are embarking on will be the right thing.

And that will be hard.