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.

42 Responses to “DNR”

  1. I am so sorry that your family has been put though this ordeal. It seems that medical staff don’t understand that there is a time to let the person be when it is their and their families wishes. My dad wanted everything done but when I took over his Medical POA I had a long hard look and some good advice from a RN in his skilled nursing facility who told me all that could happen. I decided that I didn’t want him poked and manhandled till the end with his health. All they where going to do is make him suffer for longer than need be and it was not quality of life just existing.

    You are continued in my thoughts and prayers. ((hugs))

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    • Thanks for the thoughts, prayers, and hugs!

      Why they think anyone as frail as my father really wants to endure CPR … I mean, who wants that?

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      • I really don’t think they understand that the outcome could be worse than following what the person and their family has decided. I can still remember one person I worked with as a student where 1/2 the family wanted everything done and the other 1/2 that wanted Hospice. It took some time but Hospice finally was able to work with the person instead of therapies. It didn’t take long for the person to finally be at peace. I will always remember walking into that room and finally realizing that was the smell of death. Horrible to watch.

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  2. My dear I feel for you. As if such a decision isn’t hard enough. To be forced for make it over and over again. You had the good sense to have already made it and people ignore it. When my father was dying of cancer my parents had not even discussed the funeral. So when the doctors asked if they should give him fluids to start the whole grueling ordeal again, I had to fight my brother who had not seen dad cry with pain that morning. I am not religious so I don’t pray. But you are in my thoughts. I wish you strength. I hope that somehow someway you will find more time and some joy for yourself. I get the feeling your needs are last on your list. Hugs.

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    • The perspective of the person who’s there all the time is definitely a different one than that of the less frequent visitor. Absolutely. The end stage cancer “therapies” are horrible and I continue to see articles in which oncologists themselves state that they wouldn’t endure them voluntarily. Luckily for us, my brother is on the same page (and arguably, he is more troubled by the ongoing medical interventions than I am).

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  4. This was a harrowing read, and I am so sorry that you and your brother have been put in this position. I get that the medical staff’s job is to save life, but with your dad’s medical history known and the DNR decisions already made, it should’ve been clear that all of you knew what you wanted. I really feel so sorry that you had to deal with this kind of bureaucracy in a deeply distressing situation. It’s hard enough to accept that a loved one is near death, but to distract you from the (possibly) last moments over stupid bureaucracy, is just abominable. Here’s hoping that everything is now clear and settled, in terms of DNR, so that you will never have to deal with that again. Biggest hugs!

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    • Thanks. I really do think it’s straightened out. And since entering hospice, dad has gotten spectacular care (topping the assisted living, with which we were really beyond satisfied).

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  5. Oh, gosh! hugs

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  6. What a horrible thing to read and even worse to experience! I’m so very sorry, Servetus! We had a DNR for my dad as well in his nursing home and I was lucky it was handled well when the time came, I can’t imagine the distress of having to deal with that as well on top of everything else. I hope the issue is now definitvely settled for your dad and that you can focus on just being with him with the time that is still left. (((Hugs)))

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    • The NL are really miles ahead of the US on this question. we did have a better week this week overall. Thanks for the good wishes.

      Liked by 1 person

  7. Je suis peinée d’apprendre ses nouveaux soucis de santé. Qu’il puisse s’en remettre rapidement sans trop de séquelles!
    Mes pensées vont vers vous.

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    • He’s been alternatively alert and very out of it this week, but in light of the hospice order they did change some medications. Thanks for your good wishes!

      Liked by 1 person

  8. I’m so sorry you had to experience such a nightmare. I hope everything will go according to your dad’s and your wishes. All the best!

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  9. I am so sorry. I don’t know what else to say. You’ve been through so much already.

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  10. I am so sorry you all had to go through this 😦
    I’ll keep you in my thoughts ❤

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  11. I feel for you and your family . I got a call at 4 am from a furious doctor stating Mother had been “brain dead” for weeks and my sister wouldn’t give the final ok to let her go( I live overseas and my sis locally) . M had signed all forms long before for nô life support in such situation but sis ‘s religieuse beliefs posed an obstacle. I was pressur

    ed to give a snap judge ment
    call from 7 million miles away. Got a telegram stating poor dear Mother had passed away.

    All deepest sympathy .You’ve done your best. You’re in my thoughts. J

    G

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    • It’s impossible to know what to do in a situation like that. And what medical facility really wants to risk bad publicity? Thanks for relating your experience.

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  13. I’m so sorry you’re all going through this. Hugs to all of you.

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  14. I have no words. Hugs ❤❤❤

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  15. Ahh, the smell of hospitals and superiority in the morning. I agree, our system is wonderful and terrible. I’m amazed at what a medical team is willing to put a patient through in order to ‘save’ them. Pretty grim.

    I had to look up the greatest hits of 1957. I’m surprised how many I recognized. It sounds like a beautiful day with your dad.

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    • I think part of the problem, frankly, is that at least in our part of the world, the people in emergency care are all much younger than dad and they’re not really “from” here in the sense that they have been educated at top universities, top residency programs, etc. I remember reading the resumé of the doc who treated mom and wondering why he’d want to work here of all places. The care is excellent but the treating physicians (the nurses are a different story) don’t have much in common with people here, and their youth means they don’t really understand what it’s like to have a failing body from the perspective of the body itself.

      1957 was a good year — weird juxtaposition of Elvis Presley and Pat Boone. Dad was a sophomore in high school.

      Liked by 1 person

  16. Holy shit.
    It is already difficult to do one of these since it goes against the impulse to save them like before. It felt awkward. But to go through what you did just compounds everything. Everything is digital, mostly, here. I hope the time he has left has less of this and more moments of connection.

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    • Yeah, a lot of this was apparently a records snafu (apart from no one telling us about the bracelet). And of course the fact that people are treating him who don’t know him, and so on.

      Positive for him — I started calling people on Sunday and telling them to go, so he got a lot of visitors at the beginning of the week.

      Liked by 1 person

  17. What an awful situation Servetus, I am sorry for you too and I am glad that you had a better time together listening to music. My siblings and I had the opposite experience with arrogant medical professionals. A docter asked us if we would agree to a DNR for our mother. We said no, clearly ( her circumstances were quite different to yours and I would have agreed in similar).We discovered that he had ignored us and written DNR on her form.

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    • That is just nuts! I hope you were able to correct it. I get that those folks have a lot of education, but it doesn’t give them the right to take over people’s autonomy (and their families).

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      • We did, although, I wouldn’t have been surprised if they had ignored us. I couldn’t help thinking that their decision was based on what was better for them, rather than for our mother. And yes, the person and the family’s wishes should be respected whatever.

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  18. I’ve only just seen this, I am sorry that you have been put through this, surely if you have signed a directive that is it. It seems monstrous to me that they are still questioning it.

    I hope things have calmed down now and your father is comfortable. You are in my thoughts xxx

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    • Thanks. FB told me it was your birthday recently, and I thought, I should log on and congratulate her, and that didn’t happen, so I hope it retrospect that you had a great birthday. Things have calmed down now and on so many levels I am really grateful.

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  19. Oh wow. Just now catching up on posts. Sorry your dad had this second heart attack and that the situation was made so much worse for you and your family. I do hope that things are going better now that he is back at the care home. Lots of hugs!!!

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