What I learned from using a DNR when my husband died
Interview with Ann Marie, Part 2
Welcome back to I’m Not Gaslighting You, the series about medical gaslighting and healthcare inequality, written from the perspective of a medical sociologist who also happens to be a real live woman in an actual body.
Today we’re doing the second in a 2-part interview with my long-time friend and colleague, Ann Marie, about her experience with healthcare following her husband’s traumatic brain injury and death last year.
If you want to start with Part 1, you can find it here:
If you didn’t catch Part 1, here is the short version:
Last year, Ann Marie’s husband of 30+ years, Kevin, collapsed one day at home, hit his head, suffered a traumatic brain injury, and never regained consciousness. He spent several weeks in the ICU, two weeks in specialty care, and then moved to a nursing home. Ann Marie filled out a Do Not Resuscitate (DNR) order when she admitted him.
One day, Ann Marie came to visit and realized immediately that Kevin’s breathing was not normal. She summoned a nurse, which quickly led to an entire medical team assembling in the room. The head nurse turned to Ann Marie and asked if she wanted them to resuscitate Kevin. Understandably, she was shocked by the suddenness of unfolding events, but also confused by the nurse’s question because she had already filled out the DNR—but was being asked again in real time to make a call.
Kevin died within the minute, several months after his original injury.
We split this into two essays because Ann Marie’s had such powerful insights and we wanted there to be space for you to digest her ideas. She hits some of these nails right on the head!
So without further ado, here is Part 2 of our conversation:
Karen: Ann Marie, how does this experience shape your thinking about healthcare?
Ann Marie: I wish I had a do-over on Kevin’s experience.
The problem with healthcare is that, as a patient, you don’t have multiple tries to get it right. It’s usually one and done. If you make mistakes or bad decisions or don’t do something you should have, you don’t have a chance to go back and fix it.
Ohhh I love this idea of a do-over. You really capture why healthcare feels so high-stakes.
And I think I did make mistakes with Kevin’s care, where I did not advocate for him as much as I should have. Mostly with the nursing home where I relied on the professionals to do what was right without really checking on what they were doing. That is what I would do over.
I think that’s why it’s so important for medical professionals who do have the privilege of learning from their mistakes to help patients and their families to get it right as much as possible. For example, the head doctor at the nursing home pretty much told me when Kevin was admitted that based on his medical training, he did not think Kevin would recover. That was the only time after Kevin was admitted to the nursing home that anyone sat down with me to talk about his prognosis.
I thought he was being overly pessimistic because although everyone prior to the nursing home had been nuanced in their discussions of Kevin’s prognosis, no one had said, “No, he won’t recover.” I never did talk to the doctor again and no one suggested it.
So all my interactions were with the nurses and the social worker. When I would ask the nurses about treatment, they would tell me about his breathing treatments and how they would keep repositioning him. But when I asked how he was doing, it was always, “He’s fine.” Of course, one can never know exactly what is going to happen with any medical case, but I would have appreciated more proactive information on their part.
Yes, great point! I see this a lot in my research. There is a difference between conversations about small details of care versus the big picture of a care plan. Silence and delay can really conspire to keep us from knowing what might be coming.
Honestly, now I wonder if the fact that the head doctor thought Kevin was never going to recover affected his care and the treatments he got - or didn’t get. The treatments that I didn’t even know to ask for, or ones I assumed he was getting. In the ICU, they let me know what exactly was going on every single day. In the nursing home, it was much more difficult to get information, especially since I would have to track people down who were really busy. His nurse was great but she had a lot of patients to take care of.
In my do-over, I would be much more demanding and less deferential. Which as an academic who has read the literature, I know I should have been. But what you know as an academic can be much different than what you know when you’re actually in the situation.
Absolutely. How it looks in theory and practice are so different. It’s terrible to be left wondering if your loved one got lower quality care because you trusted the system. Your story really brings that to life.
Karen: It seems so hard to disentangle pessimism, medical knowledge, and quality of care. If you had a do-over, how would you be more demanding with that part of it?
Ann Marie: I probably would have asked to see their plan of care. Did they have one? Did he need to see a specialist again?
He did end up back in the hospital at one point because they thought he might have pneumonia. At that point they did a brain scan to make sure that all the swelling was gone and there was no blood pooling and there was not. One of the hospital doctors also sat with me as we played Kevin Jethro Tull (his favorite band). He seemed to react slightly which was encouraging to both me and the hospital doctor.
I do want to say I don’t think that the nursing facility was doing nothing. He had a great floor nurse and, although I am not sure how much physical therapy he was getting, the physical therapist was always very positive when we bumped into each other. Also, as I was going through my notes, I remembered that the nurse told me that they had put Kevin in a mobile bed-chair so that they could move him around so he wasn’t just confined to his bed.
They told me I could take him outside on the next nice day. Unfortunately, I never got the chance as this was two days before he died.
Oh, I’m sorry to hear that about going outside.
Karen: Thinking back to that head nurse who asked you if you wanted them to resuscitate Kevin, even when you knew you had already filed a DNR—what would you want to say to her, if you could tell her how that moment affected you?
Ann Marie: Everyone in the room was shocked at the situation so I am not sure she could have done anything differently. Although, not knowing exactly what was going on at that moment and trying to process that he was dying, did not make a conducive context to rethinking the DNR.
I would like to tell the social worker that discussed the original DNR with me that she needs to have a more complete discussion with patient’s families. She told me that I could revoke the DNR whenever I wanted to. That just because I signed it when he was admitted, it was not a set in stone decision.
However, she neglected to mention that if I was present when he was dying, I would need to make that decision again at that point. Possibly that information was on the form, and I just didn’t read it well enough. But it needed to be a verbal conversation so that I was better prepared, not covered in the fine print.
Love this. It feels so actionable. You were advised you could revoke it, and at the same time you could have been told you might need to reinforce it verbally.
Karen: How does this experience shape your thinking about your own end-of-life healthcare?
Ann Marie: I wish I could say that I have it all figured out and have all my bases covered after going through this with Kevin, but nope. The funny thing is even after having had cancer, I still feel like I have a lot of time. I also am trying not to worry the kids. It’s that tendency towards optimism! But optimism only gets you so far, so I do need to get back to end-of-life planning. Luckily, my dad is really good at this sort of thing, so I have him as a model of how to plan the end of your life.
Glad you have your dad. NOT glad you’ve been dealing with cancer yourself!! I hope that continues to go as smoothly as possible.
Karen: Any closing thoughts??
Ann Marie: Medical professionals, like all of us, are only human. We all do our best with the knowledge and experience we have to make the best decisions we can.
The problem with being the patient is that you don’t have the knowledge or the experience and maybe not the time and so are often totally reliant on the medical team to make the right decisions. If you have time, you can start doing your own research and advocate for the patient, but it takes a lot of time.
I hadn’t mentioned but I was also trying to get Kevin on Medicaid during all this. I spent hours with the Medicaid office, a lawyer, courts, banks, etc. Mindboggling!
What I wish we could all have is a patient advocate. Like a Buyer’s Realtor. Someone who’s been through the experience and knows the questions to ask and the people to talk to. Maybe that will be my encore career!
So important! You are doing all this bureaucratic leg work, trying to hold the rest of your life together, so the idea of being even more of an advocate in healthcare is exhausting.
But getting back to the DNR, medical team members - please remind people when they sign the DNR that a DNR is not absolute and that if they are present when the person is dying they will be asked to reaffirm the DNR.
But I think it should also be okay to remind the family member that they already signed the DNR and that it is okay to stick with that decision that they already made. They’re not a bad person for letting their loved one go.
Karen: What a beautiful and important note to end on. You make all of these points so eloquently. I know a lot of people reading this will relate to some parts of your story and learn from others.
End Notes:
Ann Marie, what are you checking out lately?:
Just for morbid curiosity, I searched DNR on TikTok and came across a ton of DNR posts. Now I’ve gone down a total rabbit hole! Some of them were perspectives I agreed with, some were perspectives I disagreed with, some of them I really wondered if they had ever actually been in the position of making a decision while someone is dying in front of them, some made me think of situations I hadn’t considered, and some made me LOL! That’s TikTok for you!
Karen - if someone has not already done it - that’s your next assignment, a study of TikTok DNR posts!
This is an important and very real account. The part that stands out most is how the systems assume families can advocate in crisis, when in reality they are overwhelmed, tired, and grieving in real time. The “do-over” point is exactly right, healthcare gives you one chance, and you only realize the questions you should have asked after you’re already past the decision.
The clarity on the DNR is especially valuable. People are told “you can revoke it,” but they are rarely told that they will be asked to re-confirm it at the most emotionally unbearable moment of their life. That is not informed consent, that is a communication gap that can be fixed.
Your suggestion that families should have an independent advocate is the key. Hospitals have billing specialists, risk officers, and legal counsel, but the patient and family have no one dedicated to their understanding. If the system expects families to make clinical decisions, the system needs to provide guidance for that role.
Thank you for sharing this, it will help others recognize situations they cannot see clearly while they are inside them.
Thanks for this! The interview format put flesh, bones and reality on DNR struggles. It makes me wonder if a friend with medical expertise (eg retired nurse) might be a good advocate?