DNR

[Dad survived another STEMI on Wednesday.]

The US medical system is both one of the best in the world at acute care, and (in my opinion) completely malfunctioning in its conduct of acute care.

In the wake of dad’s first STEMI, he, my brother and I had a discussion and decided a few weeks ago to sign a “DNR” order (also known as “no code”). We agreed that if he became seriously ill again, we were ready (although not happy) to say goodbye to him. A DNR means that no measures should be taken to revive him in the case of further severe health distress: he should (per the terms of his first advance care directive, signed over twenty years ago) be kept warm and comfortable and no additional steps taken. I signed one, in addition to paperwork submitted repeatedly in the last twenty years that substantiated this decision. In every case I asked, “is there anything else I need to do?”

Answer: we needed to equip dad with a white bracelet signed by a doctor that also stated he was not to be revived. We also should have proliferated that order more fully.

He didn’t have a bracelet, and so when he suffered a STEMI while receiving an echocardiogram in his GP’s office (long story) on Wednesday, he was revived by CPR against his, and our, wishes. The GP’s office claimed they couldn’t even find my activated power of attorney. The emergency room found the power of attorney, but “didn’t find” the DNR order.

You have these discussions over and over again for years, and they are excruciating discussions. They never get any easier. But every time you sign a form, you think you’ve made the decision and so in a crisis, the decision you’ve made in sober times with careful deliberations should stand despite the roiling emotions you feel when you’re confronted with the event itself. You should be able to focus on your loved one, and not on combative discussions with professionals who seem to think that keeping people alive at all costs is the ultima ratio.

Not so. Which put me (and my brother, once he arrived) in the position of having to affirm loudly and forcefully that we did not want the professionals to take any more measures beyond oxygen and morphine (if necessary). We were put in dad’s ER room with a chaplain, two nurses, and three doctors, and had to affirm the same thing. Then a discussion with dad and some of those people, where dad affirmed the same thing (although it would be fair to say that he might no longer really understand exactly what is happening — but that’s why he has us). When we refused a trip to the cath lab for the third time, the doctors slunk away in disappointment, as if sad that they weren’t going to be able to use their gadgets.

As if that wasn’t enough: we kept being asked the question even after he was in a hospital room for observation and had the white bracelet on, an additional one for the floor he was on, and a sign on his room door saying “no code.” The next morning, when his heart rate fell and they called me at 3:45 to tell me, I had to answer it again, twice, on the phone and when I arrived.

No, I don’t want my father to die. Yes, I want his and our wishes to be respected and followed. Yes, I am aware that the second may lead to the first.

It’s hard for me to express how much I hate this — how much I hate that doing what my dad wants involves constant arguments with medical workers in which I come across as a heartless bitch. How much I hate that the US acute care system puts us in this position. How much I despise the naive questions from nurses who think that after four hours observing my father they know more about the situation than I do. How much it seemed like in a situation where he was clearly going to die, they wanted to pull my attention away from him in the last minutes I might have with him.

And it didn’t stop there. The next day, we were subjected to a visit from a hospice specialist who had the right to approve whether or not we we fully understood what we were doing when we asked that he be discharged to the assisted living facility with hospice support. So we had yet another meeting with all the same people from the previous meeting where someone who had never met us — a total stranger — had the right to decide whether dad and we had the right to follow what by then was approaching a dozen documents from two decades, all of which affirmed the same decision.

The assisted living and hospice people have been much more supportive, and I am confident that we will not make any more emergency trips to the hospital now, but the whole situation still stings, even days later.

And I get that it’s hard to refuse someone help. If I hadn’t understood that before I get it now, because at 4:30 on Thursday morning, dad’s heart rate had fallen to 20 bpm, even with oxygen. Too low to stand up, really. He kept wanting to get out of bed to use the bathroom, and didn’t understand that doing that would at least make him faint and possibly kill him. He’d get halfway out of the bed, get this terrible look on his face, and reach out to me and say “help me,” and this happened three times before the CNA was able to respond and help me. I had to push him back down each time.

I don’t ever want to see that look on his face again.

But I did see it. I looked in his face when the hospital, and I, thought that he was on the brink of death. And I did what he had said so many times that he wanted.

I understand that it’s horrible to see someone begging for help and not be able to help them. What I don’t understand is why the hospital felt like it was okay to put me (and my brother) in that position — indeed, in the position of constantly insisting that he not be helped except in certain, limited ways — as if they know much better than we do how awful the situation it is. We have done everything we were asked to do. But we — and dad — were the ones being punished.

Dad is actually feeling much better since he left the hospital, and I don’t know anymore if death is imminent. He still can’t/shouldn’t stand, but he seems to have accepted the wheelchair. Today was the facility’s summer festival and I went and sat with him while a band played the greatest hits of 1957.

~ by Servetus on June 28, 2021.