I listened to the Rounding@Iowa podcast “End-of-Life Doulas” twice because I’m at that difficult age when I think about my personal death. I don’t think about it at great length, mind you, but when I think about it, I feel afraid. Early mornings tend to be the time I wonder how much time now until…?
There was the usual podcast format, Dr. Gerry Clancy interviews Mary Kay Kusner, who is certified death doula to get the overview and details about what death doulas are all about.
86: Cancer Rates in Iowa – Rounding@IOWA
I listened to the podcast in the late afternoon and discussed it only briefly with Sena. I felt out of sorts for a few hours afterward. I was in a funk until later in the evening when my thoughts almost abruptly switched to something funny. It was about a topic I’m thinking of for another blog post which has a humorous angle to it. I even chuckled a little out loud. I didn’t force that line of thought—it just happened.
But I know why it happened.
I didn’t know what a doula was until I listened to the podcast. Because I’m a writer by inclination, I looked for the original definition, which is a female servant who helps women with birthing. That didn’t enlighten me much, obviously; I can’t remember the last time I was pregnant (see what I did there?). An end of life-or-death doula helps people come to terms with impending death, death when it happens, and with whatever comes up after death has happened.
The title of this post comes from the Mary Kay Kusner’s short anecdote near the end of the podcast. Early in her career as a chaplain, she met with a 4-year-old child in the oncology unit who had a terminal illness, evidently death was coming and asked her, “How will I get to heaven?” They talked about it and the next thing the child said was, “So it’s like another dimension?” which Kusner evidently validated in some way. It’s a really cute story.
Anyway, there was a thread running through the podcast which pointed to what is apparently an ongoing psychological disconnect medical professionals have about death because we’re so focused on cure. It’s disappointing, but there you go. Death doulas are around to fill the role of talking calmly and matter-of-factly about it with patients and families.
There are some nuts and bolts about the profession, some of which I get and others which I scratch my head about. There are a couple of doula organizations in Iowa City which Kusner mentions: Community Death Doulas and Death Collective Eastern Iowa. Mary Kay Kusner is certified as a death doula via online training through INELDA.
Interestingly some people do not believe that this is a profession which can be certified, at least without some practical clinical experience. There’s a web site in which the question-and-answer section is longer than the article itself about this. The author recommends specific courses.
Death doulas are not covered by health insurance, so the practitioners arrange for payment, often through a sliding scale hourly fee. Part of the reason for the training of and demand for death doulas is that hospice nurses have heavy caseloads.
This reminds me of the hospice where my younger brother died after his battle with cancer. He was in his forties. Before he entered hospice, I had to be one of his doctors on the medical psychiatry inpatient unit after he accidentally overdosed on his pain medication.
When my brother was in hospice, I sat at his bedside. Most of the time, he was delirious. I watched and listened as one of the hospice workers as he asked him whether he was entering the dying process. He used those words. My brother was just as delirious as he was when he had to be admitted to the medical-psychiatry unit. I don’t know how much he heard.
I sat at his bedside, determined to hold some kind of death watch vigil. This was interrupted, ironically, by some friends of his who visited. They stood opposite the bed so that I had to look at them instead—and to listen as they told me stories about how close they’d been to him and how much they loved him.
By the time they were finished and I turned back to my brother, he was gone. It took me a little while to figure out I had not missed anything I really needed.
So, I think death doulas could be vital in building a bridge between those who are dying and those who need to connect with them. That’s the main thing.
Go Retire Psychiatrist 
Psychiatrists don’t talk about death enough. It pops up in many aspects of our training as a dimension of existential psychotherapy, diagnosing depression vs grief, the now debunked (I hope) Kübler-Ross stages of grief, and as an intervention in IPT. I was obsessed with dying as a kid and convinced I would never see my 20s. Maybe that is why I don’t think about it much as an old man…
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I find myself thinking about my death more in the past year. I don’t dwell on it, but I’m reminded of my former UIHC medical ethics professor, Robert Weir. He died in 2021. He was 78. He encouraged learners to make out advance directives. He taught us a great deal. I had lost track of him and was not even aware that he had died.
I remember he went into detail about Dax’s Case. Dax Cowart suffered severe burn injuries in the 1970s and spent a lot of time petitioning the courts to be allowed to die. He was deemed decisional by a psychiatrist, but burn surgeons were opposed to his taking his own life. He never did.
Weir came to the University of Iowa about the same time I started medical school at UIHC. His obituary reveals he wanted anyone attending his funeral to feel free to wear bright colors and not be sad because he knew he was going to a “better, joyous place.” I would like to be that confident.
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That reminds me of my uncle’s death recently. He lived a long life and would have lived longer if it were not for a series of bad decisions by physicians and health care companies. His celebration of life – was a great contrast to the morbid events from my childhood and earlier years. Not sure who will show up to my funeral – but I hope there is no dress code or OK business casual at the max….
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