Q&A With Sam Brown: Death, Dying, and Living

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.

Comments

  1. Anon for this says:

    Thank you for this. I found myself as a respite caregiver to a beloved sister-in-law in the last weeks of her life. Those around her were deeply in denial and some incredibly intimate and important decisions landed on my lap by default. She was terrified of death, but was in horrific pain and crippled with anxiety. At my insistence, her husband agreed to consult a palliative care doctor who ultimately recommended hospice care. Hospice should have been invited in months before they were. So much tragedy and misery could have been avoided except for the paralyzing fear of death preventing them from getting the help they needed. Watching her suffer convinced me that there worse things than death. I ultimately made the call to utilize palliative sedation after her husband and mother couldn’t deal with that decision and passed it off to me; she never regained consciousness. No one made peace with it. I’m still haunted. Did I make a decision that killed her? Or did I give her the peace she needed to let go? Something in your words helped me understand why I’m still sick and angry about this a decade later and that brings me a weird kind of comfort. All the faith and all the LDS platitudes couldn’t make it a good death. She deserved better. We all do.

  2. Coffinberry says:

    Your write up made me want to get the book…. are you sure you have the title correct?

  3. Fixed the title. Thanks.

  4. Dominic Moore says:

    Anon, I’m sorry to hear about such a painful experience. I wish it was an isolated event. In the book Sam talks about the need for medical professionals to act as guides for families, and this is something we have failed at in the past. Palliative sedation is an accepted practice that is useful in the case of intractable suffering. Your sister in law died of her illness, not the choice to allow her symptom relief at the end. I hope that peace will come with time. Your sister in law (and your family) are lucky to have had someone willing to shoulder a burden in their time of need.

  5. Thanks, Dominic. You’re a great person with a bright mind. It was a pleasure to talk with you about the book. And Anon, I’m sorry that the system failed you and your family. It failed you terribly. I’m hoping that my book and the efforts of our group at Intermountain and other groups around the country will mean that such failures happen less often. I hope that ultimately there will be some healing for you from that pain. I agree with Dominic that you brought her solace as she died of her disease.

  6. This is such an important topic, and will become increasingly so for all of us. Sam, I just put your book in my amazon shopping cart and am looking forward to reading it.

  7. John Mansfield says:

    When I was a child, one of my mother’s youngest sisters lived nearby and was in our house almost daily. She had a cleaning job at a hospital, and one morning she came back from cleaning up after a fatal operation. The mess was same as for a non-fatal operation, but the work that night carried a feeling of failure and sadness. The emotional pain reached all the way to the bottom of the hospital staff.

  8. Jason K. says:

    Thanks for this interview. I’ve been looking forward to this book for months and am eager to pick it up next week.

  9. Sam, I appreciate the time, effort, and consideration that you’ve given to this topic. Bearing (in part) the burden of the agency for the death of a brother and a father, I have often revisited the moments when those decisions were made. Over the years I’ve felt pangs of guilt wondering if I made the correct decision. It’s a difficult thing to take off the shelf and re-examine when logic, emotion, and soul disagree. Thank you for seeing the need and taking action.

  10. I can’t wait to read the book and share it. Sam Brown, you were an out-of-the-ordinary missionary when I knew you 22 years ago, and you’ve proven that I was correct to be impressed by your wisdom even at that young age. I lost 2 children who died slowly over many months each, and experiences with the medical community varied from compassionate to cold and mechanical.
    Our family is also now dealing with end of life issues with elderly parents, one here and one overseas. Many difficult decisions will need to be made.
    Thank you for this interview and your personal and professional insights.

  11. J. Stapley says:

    Thanks, Sam. Your response to the final question was important, and I look forward to getting the book.

  12. From what I’ve seen in the OP this looks like it helps open a discussion that can be useful for both sides. Part of me really wanted to call the cause of my wife’s death “medical malpractice” in her obituary. Neither of us felt that the doctors who were treating her for her triggering symptoms considered her as a real person, but as an interesting scientific experiment. I called the doctors office several times in a panic mode, and they didn’t call back until after she was dead. I don’t know that they could have saved her, or even helped her, but I wish they would have at least tried.

  13. CS Eric, I’m so sorry for the experience you had. I’m hoping that we can find ways toward more human support for people who are struggling with serious illness.

  14. I knew about the book while it was being written, I ordered a copy long before it was available, I don’t need to be sold. Even so, thanks so much for the interview. The last question and answer especially.

  15. So very happy to read this interview. I agree with Gawande, that families in crisis don’t need healthcare teams that dictate, or abdicate. What they need are guides and mentors. As a PICU RN, I often deal with trying to help patients and their families experience a “good death.” There is so much that that can be done to delay death, but at what cost to everyone involved?

  16. Patrick M. says:

    Thanks for this interview. On the positive side, we just went through a traumatic week in which my wife received not only top-notch medical care that literally saved her life, but also deep compassion and human care from an amazing set of doctors and nurses at the Kaiser hospital in Irvine. This comes six years after my father’s death in a hospital due clearly to negligence on the part of the staff. The latter experience obviously soured me somewhat on hospitals, etc., but this past week has shown me the other side entirely. I can’t imagine that angels walking on earth would do any different than what we have seen in recent days. Thanks to Sam, Dominic, and all your colleagues for your work and vocation.

  17. Agreed that this is a great, meaty post.

    On a complete tangent, what is your source for the Joseph Smith paraphrase about inspection before response to criticism? I remember hearing Truman G. Madsen relate that or a similar quote in an audio lecture I had on CD as a missionary, but despite my best Google-fu I have never been able to find any source (even if it’s just a mistaken attribution to Joseph).

  18. Austin, I’m pretty sure it’s a real quote, but dang it’s going to take a while to remember where it is. I’ll ask around. Patrick M, I’m delighted that you had a positive experience. I’m hoping that becomes the norm rather than the exception.

  19. Thanks to the expert staff at CHL, we have an answer. Madsen didn’t make it up, but it’s from very late, third-hand sources. It’s on image 3 of this typescript, housed at CHL. It’s as unreliable (and as popular) as all the other source material for Andrus’s They Knew the Prophet.