Dominic Moore is a pediatric palliative care physician, singer songwriter, and member of the mega-super group “the Lower Lights”. He graciously agreed to ask some questions of Sam Brown, who is an ICU physician, medical researcher, and historian (most notably, of In Heaven as It Is on Earth and First Principles and Ordinances). Sam’s new book, while not about LDS beliefs, talks to some of our deepest feelings about death and caring for the dying.
Sam is throwing a book launch party at King’s English in Salt Lake on Thursday, April 14, at 7pm and for those in Utah Valley, Writ & Vision in Provo is holding a panel featuring Sam, Sierra Debenham, and George Handley on Tuesday, April 19, at 7pm.”
It was my pleasure to have a conversation with Sam Brown about his latest book, “Through the Valley of Shadows: Living Wills, Intensive Care, and Making Medicine Human”. In examining death and our relationship to being seriously ill, along with legal and medical tools that have developed over time, Sam lays out some of the most difficult challenges of our day. I recommend “Through the Valley of Shadows” highly and consider it crucial to the discussions we need to have as a society.
Sam’s criticism of living wills is well founded but also pretty revolutionary (some might even say heretical).
Living wills and advance directives have been enshrined by some as “the answer” to more humanistic care. In this book Sam walks up to the shrine and (with all due respect) marks it for demolition with neon spray-paint. As a pediatric palliative care doctor I take a different position from Sam on some points, but I loved reading this book and think it will result in some important conversations. It takes guts and brains to spark real change, and this book has both in spades.
What was the impetus for this book?
I had a moral crisis after my wife’s illness in 2012. We were reeling, struggling to process terrible changes, and we found a medical system that displayed an entire disconnect between technical skill and human caring. Her illness made me consider, vividly, how poorly I had treated patients and families in the ICU in my own practice. I realized that they were often as lost in a sea of fear, uncertainty, and sorrow as my wife and I had been. And, in retrospect, I’d not been doing right by them. During this period of soul searching, I realized that I had been complicit in a system that consistently, if accidentally, dehumanized people facing life-threatening illness. That experience, along with several other encounters in my clinical practice that I detail in the book, helped me to see medicine in a new way. I began to feel, passionately, that there are serious flaws in the way we administer medical care and human support during life-threatening illness.
How do you see the role of writing to general audiences for a book like this in comparison with writing for traditional scientific journals? You have been successful in both endeavors, is there one that is preferred over the other?
In this book, I’m making the argument that we have all been looking past each other during life-threatening illness. Patients, families, and clinicians, all alone together in a crowded room. It’s as if we’re all blind to each other’s humanity. So it felt like I needed to write a book that would resonate with both medical folk and regular folk. I think it’s important to know what you’re trying to achieve with a book. In this book I was trying to kindle conversations among patients and doctors. So this book needed to be written in that “crossover” mode. That said, I prefer to write academically because it’s a much more natural way of writing for me. It’s a thousand times easier for me to write academically than to write for a general audience.
What other physician authors have you read that made an impact on this project? Any that have made an impact on you personally or professionally?
I think that Ira Byock is my favorite physician author currently. I feel like he’s the wisest and most clear-seeing palliative care doctor in America. His Four Things directly influenced the Not Left Unsaid letters that I started writing (see my Chapter 8), and it’s affected the advice I give people when they confront their final phase of life. Atul Gawande’s Being Mortal came out as I was finishing the book, and it felt like a perfect groundwork for what I was proposing. Jodi Halpern is a psychiatrist who wrote a marvelous book on empathy, which provided a very useful theoretical framework for me as I thought about how to explain my interest in the model of clinicians as guides. Baron Lerner also recently published a memoir about his father’s and his own medical practice that I think helpfully addresses relevant topics.
How do the concepts that you put forward in your work relate to your personal spiritual philosophy?
Wow. Not a clue how to answer that. I’m not even sure whether I have a “personal spiritual philosophy.” I’m not a very spiritual person by nature. I’m an LDS theist, and I’m deeply religious, trying, sometimes successfully, to discover and nurture agape. If that’s my spiritual philosophy, then I would say that fundamental to Valley of Shadows is the idea that we have substantial obligations to each other as human beings. Those obligations mean that we are called to be able to see the world the way others see it, to create a world of mutual understanding. In that respect, I think this book is closely aligned with my philosophical sensibilities. It’s not a religious book per se, but I intended it to be a fundamentally moral book that would be useful to religious and non-religious readers equally.
In the story of Bruce and his daughters there is a moment when blame and threats are thrown at you despite efforts on your patient’s behalf. How do you process all that?
It’s hard to get screamed at. When I was younger, I essentially always took it hard. There’s an old phrase attributed to Joseph Smith Jr. that I like. In rough paraphrase, “[when people criticize me, I always ask whether I’ve done something wrong before I respond to the criticism].” Like most doctors I know, I’m haunted by my mistakes. So if the negative feedback is coming because of a mistake I’ve made, it deepens my soul searching and is quite painful. I feel like that pain is a necessary part of improving myself as a physician, though, so I just take it.
However, most of the time, the angry words (same as lawsuits, frankly, a fact reasonably well established by research) arise not from physician errors but from grief, anger, and frustration. For that kind of negative feedback (as was the case with Bruce’s daughters), I’ve learned to translate. Instead of hearing “you’re a monster!” I now hear “I’m sad and/or terrified and I’m struggling to process all these negative emotions.” It transforms the experience for me from an angry argument to an opportunity to minister and seek healing. Those acts of translation have been critical because, let’s face it, ICUs are frightening places filled with plentiful opportunities for grief and rage.
What resistance have you encountered while trying to humanize the ICU experience?
The most painful problem, frankly, has been the dismissal by some segments of the medical establishment. It can be hard to get grants and hard to get journals to publish papers on these topics. It’s seen as less substantial or important than the hard science. I happen to love hard science too, and I love doing rigorous research, so I’m sympathetic to the impulse that focuses on the technical side of biomedicine. But if we are blind to the human side, then we are morally impoverished. This moral poverty feels like a side effect of our ardently secular, technocratic worldview, a worldview that has done much good in the world. In throwing out the bathwater of theocracy and clerical corruption, though, we may have lost the human baby.
On a more understandable level, the need that ICU clinicians have to protect themselves from terrible emotional pain is an important impediment to humanization. If they make their patients too intimate, too human, then they may be disabled by grief when a patient dies. Our efforts at Intermountain to humanize treatment are having to grapple seriously with the human needs of the nurses and doctors themselves.
How has your family’s experience with serious illness contributed to writing this book and thinking about end of life?
As I detailed in my devotional book First Principles, at 18 I was reconciled with my father on his deathbed. Although he died a couple days later at the end of unsuccessful cardiopulmonary resuscitation (CPR), I think he had a good death in that opportunity for reconciliation. It’s meant the world to me that we were able to say goodbye. I suspect that this experience with a good death affected my interest in the topic when I started doing my historical research for my first book. And it’s still with me now as I consider opportunities for reconciliation for my patients and their families. I love both the situations where we’ve been able to postpone death meaningfully and the cases where we’ve been able to help people experience a good death.
What are your feelings on physician aid in dying/”assisted suicide”?
That’s so complicated that it merits long discussions on its own. I think that in this interview with Marcus Smith at KBYU I get at most of what I’ve come to believe. I used to be very much in favor of assisted suicide, but as I studied the question more carefully, I came to be opposed. But not for the traditional reasons that we associate with the culture warriors who usually spar over this question. I’ve been surprised by how heavily the current (and past) arguments for assisted suicide depend on social Darwinist sensibilities, something that is alien to me as a progressive/liberal. I sometimes wonder whether anti-clericalism has created a kind of blindspot among progressives. Assisted suicide seems so opposite to the communitarian ethic of Progressivism that I love, the impulse to attend carefully to the needs of the vulnerable and acknowledge our mutual dependence.
You refer to the sadness you feel when a patient dies as a “sacred offering”, will you expand on that?
I think that one of the biggest obstacles to humanizing intensive care is the emotional pain we clinicians experience when a patient dies. That can cause many clinicians to cut themselves off emotionally, to separate themselves from the human aspects of the care they provide. It’s a defense mechanism. When you’re open to that human side, you really do experience the death of each patients as a terrible loss, and when 15% of our patients and perhaps 30% of the sickest patients that we care for over the long period of time will die. It’s a lot to bear. So I think we need to find ways to be open to the sadness but have something to do with it, some way to make sense of the pain. At a tiny level it’s like the question of theodicy (how can God be good and in control if bad things happen?) on a small scale. Can we make sense of suffering? I’ve come to see the sadness we experience when a patient dies as part of the offering that I bring to all who suffer in the ICU. If I couldn’t consecrate that sadness, I think it would keep me from being able to do the great work we do in the ICU, saving lives and honoring the dying.
You use the term “allow natural death” in the book. Some have voiced concern that this language makes those who choose other measures feel they are doing something “unnatural”. What are your thoughts?
This is an incredibly smart question (among many smart questions). It gets at the crux of the book. Specifically, what’s the role of human agency in death? Human beings have always resisted death: by religion, medicine, magic, folk wisdom, or other mechanisms. They haven’t, historically, had that much control over it, especially over very serious illness. So in a sense we humans were always play-acting control over death. With the development of ICUs in the 1960s, though, human beings began to have a remarkable amount of control over death, at least temporarily. This meant, though, that “life support” treatments became something that had to be refused in the course of dying. This introduced human agency into death in a way that was, I think, unprecedented. The lives thus prolonged looked unlike almost anything seen before, and it was frightening.
But plenty of studies show that people hate feeling responsible for death. They probably should: willing the death of another is something we shouldn’t really be training ourselves for. So the question is how do we make applications of medical technology true to the patient as an individual without forcing family members (especially if they are reluctant) to bear the burden of the agency for that death? It was more straightforward before: you made peace with the providential timing of your death. It was God’s will that took us at a particular time: everything happened for a reason.
In my experience, most people are still looking for something like Providence. They don’t want to choose death but to make peace with it. But in a plural society, you don’t want to rush to use religious terminology for something that is much broader than religion. “Natural death” thus becomes a circumlocution for making peace with death, or going gentle into the dark night. I don’t think an unnatural death is wrong, and a natural death right. Whether to “go natural” or “go fighting” depends on an individual’s personality and the phase of life. And I think using that phrase, “natural death,” is a gentle way to help people navigate important transitions by providing them a mechanism to make peace with death. We should be careful not to exploit the current obsession with “natural” products and lifestyles to try to dissuade people from receiving treatments that are true to them as an individual. I think the criticism of the phrase that you describe is an important reminder to not use the terminology to change people’s minds but to honor them as people.