Thread by @TNREthx

Two days before the end of 2019, my dad collapsed suddenly, purple by the time he hit the floor. His partner, mere seconds away, is an experienced nurse, and she—and eventually EMS—did CPR for more than 20 mins. They shocked his heart back into rhythm, and that’s when it started.

He is a pretty standard ICU patient: 70 year old male, comatose after sudden cardiac arrest, almost certainly some degree of anoxic brain injury, but the real question is how much. I wasn’t at all sure he’d still be alive by the time I got to him 1600 miles away. But he was.

So the waiting and slow, complex diagnostic and prognostic progress began. My sister is a nurse. I’m a bioethicist. And my experience so far is of never-ending days of utter confusion, while different teams of clinicians tell us pieces of sometimes-relevant information.

I teach end-of-life cases that look like my dad’s all the time. They’re the fundamental stuff of classical medical ethics. But boy do they leave out a lot of difficult details. My dad doesn’t want to “be a vegetable,” “be dependent,” or “not be himself.” But what does that mean?

Coming out of a coma is a long, slow, difficult process, with uncertain outcomes. If the EEG shows that his brain injury isn’t catastrophic, does that mean he’d be happy with whatever recovery is possible? Of course not. He might lose much of what he valued.

When he expressed his wishes, he probably had in mind various extremes, as we did: if he couldn’t wake up as he was, he would wake up totally incapacitated, destined for round-the-clock nursing. But what if waking up means months or years of working toward modest capacity?

I had never thought about this, and I doubt he did either. His children are in close to as good a position to deal with this situation as anyone would be, and it’s devastatingly hard. I’m filled with uncertainty, fear, guilt, and good old-fashioned sadness for my daddy.

I am absolutely certain that we—medicine, and society—don’t do this as well as we should. I don’t know what exactly is wrong or how to fix it, but something is. As I continue to try to do what is best for my dad, I really hope I’ll learn something.

Because this sucks. It’s terrible. My heart goes out to all the people who already knew that, because they also lived it. I never understood—not really—what cases like my dad’s look like. I certainly won’t be teaching end of life cases the same after this.

Warm wishes for my dad and family are appreciated, but mostly I’m writing to encourage everyone to have hard, scary conversations with people you love. Talk about your values and what kind of medical care you’d want if things go badly, and get uncomfortably detailed.

Because the details matter. A lot. Without details, it’s pretty easy to think you know what someone you love wants. Or what you want. I thought I did, but my picture was radically incomplete. I know I’ll be having some hard conversations with my family soon.

***
EPILOGUE:
I wrote this thread a couple weeks ago, when dad was still in a coma, and I was trying to process the difficulty of being a surrogate decision maker. Since then, some rather dramatic things have happened.

Likr, firstly: he woke up.

The first week after coming out of the coma was its own special nightmare of delirium and withdrawal, but that’s for another time. Now, he’s home and he’s largely—shockingly—okay. He’s my same goofy dad, and I’m SO GRATEFUL.

But... that means I got to ask if we did okay by him.

Once he recovered enough to have a complex, difficult conversation, I made sure he knew how bad the odds had been for him. He understood.

Then I made sure he understood that there was no obvious place for us to withdrawal support, once treatment had been started. He understood.

So I asked: did we do the right thing? “I don’t know,” he said. He’s grateful to be alive. But no one expected him to do this well, and he didn’t want to wake up doing less well. So we happened to have won the gamble, but that doesn’t mean gambling was right.

Given that aggressive resuscitation was begun, we’re all made peace with our decision to give him a chance to recover. But it’s hard to know how much that peace is colored by the fact of a good outcome.

Even getting my dad back hasn’t made clear what one should do.

/Fin

UPDATE: I’m really overwhelmed by the response to this thread. Thank you all for your thoughts and well wishes, and for sharing your own stories. I tried to keep up with comments and shares, but I’m admitting defeat.

I’m excited to tell dad how much his story touched people.