– A Conversation with Christopher Kerr, MD, PhD, and Carine Mardorossian, PhD, on Death is But a Dream: Finding Hope and Meaning at Life’s End Interview
By Sebastian C. Galbo
Christopher Kerr, MD, PhD, is Chief Executive Officer and Chief Medical Officer at Hospice and Palliative Care Buffalo. Carine Mardorossian, PhD, is a Professor of English at the University at Buffalo. Dr. Kerr’s work on end-of-life dream experiences has garnered the interest of The New York Times, Huffington Post, The Atlantic, Scientific American, and Psychology Today. Published in February 2020, his most sustained exploration of the topic, Death is But a Dream: Finding Hope and Meaning at Life’s End, movingly chronicles his patients’ end-of-life dreams and visions. Providing a depth of compelling patient testimony collected through a university-approved research initiative, the authors examine the dreams described by terminally ill individuals, revealing the truly mysterious range of human possibility at life’s end. Eschewing heavy-handed clinical interpretations, Death is But a Dream succeeds in amplifying the voices of patients not for the purpose of analysis but to share with readers the richly life-affirming qualities of pre-death experiences. These dreams, writes Dr. Kerr, “help the dying to reunite with a more authentic sense of self, with the people they have loved and lost, those who have secured them, who have brought them forgiveness and peace.” This interview was conducted via email during March/April 2020.
1. There’s a memorable poignancy to the beginning of your book. The nurse Nancy tells you, with gritty certitude, that a forty-year-old, HIV-positive man is terminally ill and dying, evidencing her claim with “He’s been dreaming about his dead mother” (Kerr 2). Nancy’s observation seems to have been amazingly anticipatory of the findings documented in this book. In some ways, this book might be said to be an elaborate validation of Nancy’s perception. How did her comment strike you at the time? How did this initial encounter with end-of-life experiences shape your future career as a young physician?
You are right—the foundation of the book is that singular yet essential interaction. I think it brings into relief the dichotomy between a medicalized view of death—which views dying as organ failure and a problem to solve—versus a more humanistic perspective which views the person in totality and, in doing so, also honors the subjective, inward or experiential dimensions of dying. This latter view is not only more complete but also considers the person in totality in the context of their life. Dying from this vantage point is more than a medical treatise or organ failure; it is closing of a life. This matters for many reasons. The most important is that the person in the bed has let go of concerns, as defined medically, and reflects on what matters for having lived. When it comes to the end of life, the contrast between the medical versus the patient perspectives borders on the absurd. At the time, the interaction was also a reminder of how out of place I was both by training and disposition; there was no technical medicine to fall back on, and I was also put on notice that to have clinical value. I needed to embrace the art as well as the science of medicine. The interaction shaped my career. I learned to stop, to be present, and to honor the duality of the physician’s oath—to cure sometimes, but to comfort always.
2. The book is beautifully written. In interpreting and narrating the perspectives of each patient to tell a broader story of end-of-life experiences, did you ever sense that a fictional impulse risked obscuring the patient’s voice? I’m thinking of Rita Charon’s words that describe the burden of giving an account of oneself—“I saw that, while I had very demanding “listening” tasks, the patient’s “telling” tasks were even more demanding, because pain, suffering, worry, anguish, and the sense of something not being right are conditions very difficult, if not impossible, to put into words” (Charon 4). What were risks of, to use Charon’s word, inhabiting the patient’s perspective to write this book? How did you write to or around the spoken and unspoken subtext(s) of each patient’s story?
Christopher: First, I must point out that the book was written in partnership with my friend and colleague, Dr. Carine Mardorossian, who is an English Professor and a truly gifted writer. As a physician, the only space I was actually comfortable in was writing from a clinical perspective, which is rooted in the patient perspective. One of the hardest lessons to learn as a physician is that there is only one true focus and one true priority: the patient. For better or worse, that’s how you endure the rigors and sacrifices of training, and how you limit distraction or confounding influences. I can remember watching a resident being kicked out of the hospital because he looked at his watch. Point is, that again and again, the lesson was the same: it was never about you. Mistaking your needs and your voice for that of the patient is the step you cannot take. So, honestly, I was comfortable writing from the patient perspective and uncomfortable when I had to step out. I also had the advantage of hours of patient videos and access to families so that I could serve as a translator rather than interpreter.
Carine: From the perspective of a writer who is not a doctor, writing about people I did not know meant that I was in a certain way writing fiction, but only insofar as fiction is the only way to attain truth. Had we just transcribed what we saw on each video may have been factual, but it would not have helped us achieve the truth of the kind of transcendent reality we were trying to convey. It would not have done the patients justice. So, writing a truthful book about end-of-life dreams meant doing to the material what fiction teaches us to do, namely impose some order, selectiveness, and subjectivity on the material that would do it justice. To represent the reality that these patients were sharing truthfully, one they articulated through their experiences and lens but that we were generalizing about, required the framing that we gave it. Fiction is what taught me how to access their truth, in what was not a fictional but a truthful way.
3. You write candidly about the uncertainty of deriving a larger, universal explanation for end-of-life experiences: “For me, what all this means is that the best parts of living are never truly lost. I am reminded of this when elderly patients experience the return of the mother or father they lost in childhood; when soldiers speak of haunting battles; when children talk of dead animals returning to comfort them; and when women cradle babies long lost to their touch” (Kerr 226). How do your patients typically interpret end-of-life experiences?
Patients often do not know or care to interpret them. Some repress them because they are worried about their loved ones’ or doctors’ reaction. Some mention them as evidence of the afterlife. Others take them for granted and are surprised that we would want to talk about them at all. All are fascinated by the research that finally gives credence to their experiences in a way they never thought was warranted. We live in a society of experts telling people what is happening to them or why, that we may have forgotten that we are entitled to our own experiences and their meanings. The reality is that the time for therapy has passed, and I have yet to have a patient ask me for an interpretation. In many ways, such experiences are dissimilar from dreams in health. Patients are left with answers, not questions.
4. Can end-of-life dreams be understood, in part, as an intricate facet of homeostasis or compensation (to borrow a term used by Siddhartha Mukherjee in his New Yorker piece, “My Father’s Body, At Rest and in Motion”)? The mind seems to work overtime to activate certain memories to distract it from the physical realities of dying; the discomforts of one’s physicality are compensated by an intense spirituality. “There is an adaptation—substantive, spiritual yet cognitively meaningful,” you write, “a mechanism through which the patient can emerge from the dying process with a positive psychological change” (69). The mystery of end-of-life dreams—their visions of loved ones; of seeking forgiveness, healing, and understanding within weeks, sometimes days, of one’s death; of comforting apparitions and visitations—points to a miraculous capacity within the human heart that eases the life-to-death transition. What exactly is this “mechanism”? Is this an adaptation of which all patients are capable?
The data suggest that the vast majority of patients experience this sort of adaptation. What is so critical to note is that patients who are cognitively different, such as with advanced dementia or Downs Syndrome, also have emotional or inward lives and have similar, if not more meaningful, end-of-life experiences. Recently, one patient with advanced dementia was attempting to leave the facility because she needed to go to her wedding. She was full of love and joy as she relived the best day of her life despite nearing her last. The universality of such experiences speaks to our humanness and, if there is a mechanism, it resides in our need to connect, to have meaning, and to be relevant. We aren’t disconnected from living because we are dying. In fact, when we look at dying with measure indicative of post-traumatic growth, our studies show that the dying are growing, adapting, and gaining insight right up until their last days. This is the paradox of dying—we see physical decline, yet the patient may be very much alive, even enlightened, emotionally and spiritually.
5. It’s clear that end-of-life dreams can ameliorate suffering, but for patients who cannot, for whatever reason, experience them, is there potential to perhaps simulate a dream-like state or consciousness that might produce similarly comforting effects? Must end-of-life dreams be organically (i.e. spontaneously) experienced to bring patient comfort or is there potential for induced states, through therapeutic modes such as hypnotic intervention, to be just as healing?
I often think that art therapy or music therapy is a way of achieving the kind of transposed peace and understanding that end-of-life experiences produce through memories. Certainly, this process transcends understanding or consciousness. It is not one that can be taught or triggered since it is one produced by the inner life of each individual. Both music and art can create similar transcendence, and a great deal of work has been done on the use of psychedelics at the end of life. The results are encouraging, but I question whether it does truly replicate that which occurs organically. Another approach to promote such experience is to create space by normalizing such experiences. I am not implying that we should be suggestive, but I am struck by how many people have such experiences in isolation and are reluctant to share them for fear of ridicule. There is some data to support this observation. So, like many inward experiences, such as depression or fear, providing “permission” is essential in allowing patients to be comfortable in their expression.
6. As you write, medical research tends to oversimplify end-of-life dream experiences by providing clear-cut biological explanations (neurological deterioration, oxygen deprivation, fatigue, prescription side effects, etc.). Furthermore, there is a long, divisive history of dream analysis itself which, as you state, has created competing interpretations rooted in parapsychology, paranormalism, spirituality, religion, and Freudian/Jungian discourse. What is required for today’s researchers and healthcare professionals to treat end-of-life experiences as a serious field of study?
First, we must recognize that dying is not defined by the last moments and hours when brain function may be compromised. From that vantage point, end-of-life experiences can easily be dismissed or “medicalized” as confusional states. We are talking about patients who are often living independently, managing affairs, etc. The study participants were interviewed days, weeks, and often months before death. Second, it must be clear that we are merely translating the dying experience based on the words of those who are going through the process. We are looking at pre-death as a mystery onto itself without projecting into the afterlife or the paranormal. Third, as part of a university-approved protocol, participation required witnessed consent and patients were screened to rule out confusion. In the book, we included stories from patients who were “cognitively different,” but they were excluded from formal study based on clear inclusion criteria. Finally, and most importantly, researchers and healthcare professionals should care about these experiences because our patients do. Medically, we are at odds with death and yet we are guilty of abandonment if our care and consideration of the patients stops when they are no longer deemed curable. The dying continue to live right until their last breath.
7. The book is as much an eloquent chronicle of your patients’ spoken testimonies as it is a persuasive plea for rethinking our healthcare system’s attitudes toward end-of-life care. As you say, “The prejudices of present-day medical training have caused an inability to see dying as anything but failure, and they compromise the self-soothing power of patients’ end-of-life experience as irrelevant to their craft” (7). What needs to change in medical school curricula and healthcare practices for end-of-life experiences to be understood and valued in a way that is compassionate and life-affirming?
Two principles stand out. The first is that we, as physicians, should reclaim our role as comforters as stated in our oath: cure where possible and comfort always. Second, we should resist the process in our healthcare system which inadvertently promotes patient abandonment. For example, patients who have endured a long cancer battle with their physician often report feeling disposed of when they are no longer treatable. Obviously, this isn’t the intention, but our healthcare system only recognizes patients with whom we can do things to, whether it’s to diagnose, treat, or intervene. What happens to the patient who just needs comfort or presence? You may receive world-class care as long as you are deemed curable but when no longer treatable, the dying patient “falls off the cliff.” Care then becomes more fragmented but, thankfully, hospice exists as a safety net. Finally, medicine should always respect and honor the patient’s experiences, including those at the end of life. The absence of an etiology or cause does not make it less valid to the patient and therefore it shouldn’t be to us. We live in the era of evidence-based medicine which, although miraculous, should never disregard aspects of the human experience which cannot be measured or fully understood.
8. Your patients’ narratives reveal an expected struggle against temporality. Interestingly, end-of-life dreams and visions—during which patients re-experience a vivid childhood memory, meet a predeceased spouse, or are reunited with a lost child—seem to rupture the biological linearity of terminal illness. Time, in these dreams, doesn’t seem to be rigidly bracketed between health and sickness, life and death. How has this book changed your understanding of how patients cope with the passage of time?
It made me realize that the past is never past and that expecting people to “get over” past experiences they never got to process is not just wishful thinking but harmful. Fortunately, our inner fortitude allows us to process them in the end. We are understandably focused on what exists in the present, yet these experiences suggest that time and distance are less relevant when it comes to life’s most meaningful moments and relationships. The final story appears to be more life affirming than I would have thought, as our patients remind us that the best parts of having lived are never truly lost.
9. Readers might sense a slight hagiographic quality to Death is But a Dream in that all the patient cases you present involve end-of-life dreams and visions that realize transformative healing, reconciliation, and understanding. There are examples, such as in the case of Eddie, the retired “bad cop,” who has distressing pre-death dreams due to lingering guilt over his crimes; however, he, like other patients who have temporarily disturbing dreams, ultimately experiences peace. In your practice, do you observe patients who do not benefit from end-of-life dreams, patients who are haunted, not healed?
Rarely, but yes. One of the unexpected findings in our study was that the experiences that we categorized as “distressing” were often the most impactful. These events often resulted in critical issues being addressed, whether it was to ask for forgiveness or the need to express genuine feelings of love. Sometimes this relief comes days before death as in the case of several gentlemen who had suffered with PTSD for decades. Our studies also included some pretty rough characters and a few tortured souls but, more often than not, even they found either some measure of redemption, final peace, or sense of wholeness. Their path there may have had bumps, but they got there. That said, people die as they have lived, and some lives cannot be reconciled with this notion of a “good death.” Nonetheless, their end of life will be authentic to the life led.
10. As I read the patients’ stories, I kept thinking of Philip Larkin’s haunting poem, “The Old Fools,” in which he describes death as a kind of imperceptible, molecular disintegration: “At death you break up: the bits that were you / Start speeding away from each other for ever / With no one to see.” The end-of-life dreams described in your book, though, challenge this image of the dying process as one of lonely fragmentation, as there’s often an unexpected wholeness reclaimed in one’s last stages of life. Could you share some concluding thoughts about how healthcare professionals can create conditions that facilitate the potential healing offered through end-of-life experiences?
What patients go through could perhaps be compared to the state of ego-lessness that Buddhists are said to achieve through meditation. Maybe that is what Larkin’s poem is about—not the breaking up of one’s true nature but the breaking up of the ego. For healthcare professionals, that means being receptive, open, and supportive of the different and unexpected forms solace and peace take at the end. We need to be at bedside and accept that our best intervention may be to just be present.
11. Describe some of your current research projects. How will the findings in this book continue to evolve and inform your future work?
One of the things we realized while writing about the end-of-life experiences is how these impacted the bereaved in ways that have not been addressed. The natural extension of this book is a project on grief and caregiving, and the ways in which families meet the challenges of their loved one’s illness and death. I think we see parallels to our first book in that caregivers describe an undeniable time of sorrow and stress, but which also affirm life and our core relationships to those we love. Time and again we have heard caregivers refer to this time as “the best hardest thing they have ever done.” In other words, there are areas, such as end-of-life processes and caregiving, which are associated with pain, grief, and loss, yet these remind us of the best of humanity, these other dimensions that humanize us and reaffirm who we are to one another.
Charon, Rita. Narrative Medicine: Honoring the Stories of Illness, Oxford University Press, Incorporated, 2008. ProQuest Ebook Central, https://ebookcentral-proquest-com.gate.lib.buffalo.edu/lib/buffalo/detail.action?docID=3053606.
Larkin, Philip. Collected Poems. New York: Farrar, Straus, and Giroux, 2004.