How would you like to die?

Four books about death and dying by physicians provide a good start for all physicians, general or specialized, looking for a fuller understanding of the topic and a way to initiate difficult conversations about end-of-life care.

Exploding health care costs, expanding need for seniors’ health care, opioid overuse, and controversies about futile medical care, medically assisted death, and the right to die with dignity: these are all issues demanding our attention. In light of their importance, four currently popular books can help physicians, patients, and families (including the physician’s own family) reach a better understanding of aging and death. These books can also help initiate conversations about goals of care, elder care, and end-of-life care.

The task of discussing end-of-life issues frequently falls to the family physician, but the responsibility of discussing palliative approaches rightfully belongs to all physicians involved in patient care, including specialists. The four physician-authors who have written the books described here have strong backgrounds in the humanities or English literature. Three are surgeons and one is an internist.

My review of these books is not meant to be comprehensive, given how many online reviews are readily available, but to highlight key thoughts related to the subject of death and dying, to pique reader interest, and to provoke thought. While I have quoted all the authors directly to provide a sense of their messages, reading each author’s book in its entirety will result in fuller understanding. I hope BCMJ readers will share other worthy resources and books written by medical professionals through the journal’s Personal View section, and that this article will generate discussion, not only among us but also with our patients and our own family members.

Teachers in our midst: Our colleagues and our patients
I left a message for my 88-year-old neighbor Jessica inviting her to our 10th wedding anniversary celebration and was puzzled not to hear back from her as she was usually so involved in neighborhood activities. A week later I ran into her son, who informed me that Jessica had gone to bed after a day full of activities and did not wake up again. This Second World War veteran was a vibrant and cognitively intact senior who was still living independently in her own home. She met death in the way that most of us would choose if we were to answer the “How would you like to die?” question from the Proust questionnaire: “In my sleep.” The parlor game popularized by French essayist and novelist Marcel Proust allows players to address meaningful and revealing topics, and has been used by BC physicians to introduce themselves to colleagues in the BCMJ Back Page feature. Even if we are not familiar with the Proust questionnaire, most of us will have considered this particular question.

As physicians, we see and must respond to death often in our work and we become somewhat inured to its effect on people who do not see it as often as we do. People are afraid of death. Our youth-obsessed society lives in denial of senescence and until recently tended to avoid discussing life’s eventual end. Our colleagues who have written about dying and our patients who have shared their experiences have much to teach us.

Kalanithi
The unexpected and catastrophic experience of dying young is captured by Dr Paul Kalanithi in his bestseller, When Breath Becomes Air.[1] His story holds our attention not only because it is tragic—a brilliant neurosurgery resident is diagnosed with stage IV lung cancer just as he is finishing his training—but also because he expresses himself eloquently in his dual role as a medical professional and a patient. After receiving the terminal diagnosis, he struggles with how he wishes to be cared for by his physician:

You have to figure out what’s most important to you. If I no longer sought to fly on the highest trajectory of neurosurgeon and neuroscientist, what did I want?

To be a father? To be a neurosurgeon? To teach? I didn’t know. But if I did not know what I wanted, I had learned something, something not found in Hippocrates, Maimonides, or Osler: the physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.[1]

Dr Kalanithi’s intimate and poignant account of facing death reminds us that being young and being a physician do not protect us from death’s ravages.

Nuland
Dr Sherwin B. Nuland’s classic groundbreaking book, How We Die: Reflections on Life’s Final Chapter,[2] is one of the books mentioned in Kalanithi’s account. Dr Nuland weaves patient stories with his own personal experiences to “demythologize the process of dying.”[2]

After several chapters detailing the various ways in which we can meet our end—timely and untimely, and not always in the ways we would envision or want—Nuland addresses the unclear boundaries between medical utility and futility as physicians err on the side of treating the patient because they feel they must “do something.” If the treatment is futile, does doing more serve to meet our need as physicians or our patient’s needs?[2]

Nuland also notes how sometimes physicians will provide false hope in an attempt to avoid difficult conversations:

Too often, physicians misunderstand the ingredients of hope, thinking it refers only to cure or remission. They feel it necessary to transmit to a cancer-ridden patient, by inference if not by actual statement, the erroneous message that it is still possible to attain months or years of symptom-free life. When an otherwise totally honest and beneficent physician is asked why he does this, his answer is likely some variation of, “Because I didn’t want to take away his only hope.” This is done with the best of intentions, but the hell whose access road is paved with those good intentions becomes too often the hell of suffering through which a misled person must pass before he succumbs to inevitable death.[2]

Physicians may even try to maintain their own hope along with the patient’s by embarking on a futile course of action—“a form of medical ‘doing something’ to deny the hovering presence of death.”[2]

After the futile treatment fails, physicians may withdraw from the patient when that person most needs connection and community. Nuland says this happens because we have lost power over the death we so fear and that our egocentrism makes us unable to tolerate this “blow to our self-image,” so we turn away “from the patient who personifies our weakness.”[2] However, physicians can have a more powerful and useful role: being present for the patient as they near the end in a type of spiritual companionship that gives hope.[2]

Nuland goes on to highlight the role of the family doctor and the need for clinical objectivity in guiding patients who must make difficult medical decisions when faced with the possibilities of specialized technological care. During these times “it is not the kindness of strangers we need, but the understanding of a longtime medical friend.”[2]

Nuland’s book is written in enough detail to educate patients and remind physicians that a “natural death” is not always what we imagine it to be. If the classic image of dying with dignity is to be changed or even shelved, we need to consider how we have lived our lives:

The dignity that we seek in dying must be found in the dignity with which we have lived our lives. Ars moriendi is ars vivendi: The art of dying is the art of living.

The honesty and grace of the years of life that are ending is the real measure of how we die. It is not in the last weeks or days that we compose the message that will be remembered, but in all the decades that preceded them. Who has lived in dignity, dies in dignity.[2]

Nuland’s book was first published in 1994 and revised in 2010, when the author commented on the rise of medical ethics committees and palliative care but also observed that “The failure to acknowledge futility remains an unsolved problem.”[3] His message in the revised edition was essentially the same as the one he had delivered 16 years before, and until his own death to prostate cancer at home in 2014 he continued to advocate for a more compassionate approach to help dying patients.

Gawande
Dr Atul Gawande’s Being Mortal: Medicine and What Matters in the End[4] also uses patient experiences and personal stories to discuss aging and elder care. After articulately summarizing how the current elder care system evolved in the United States (certainly very pertinent to Canada), he discusses Western values of independence of family units and how medicalization of elder care has removed us from dying in a more natural manner. The loss of independence with increasing frailty in the final stage of our mortal lives is no longer regarded as being natural. Perversely, independence is venerated, which unfortunately “takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset.”[4] Because of our unwillingness to accept senescence and mortality, safety takes precedence over autonomy in elder care and “we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”[4]

In reaction to the paternalistic “Dr Knows Best” model of care, physicians have now become purveyors of medical technology and know-how, a model Gawande terms “Dr Informative.”[4] But what patients want and need is really “Dr Interpretive,”[4] a physician who filters and presents information to them so they know what their real goals are—even to the point, perhaps, of challenging patients to rethink ill-considered priorities and beliefs. As physicians we need to accept our own mortality in order to help our patients come to grips with the limitations of medicine:

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits…. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be.

We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.[4]

This acknowledgment of the limits to medical care applies not only to dying patients but to all patients with serious illnesses and injuries. As the palliative care approach has evolved, so has the role of the physician, not just the family physician, in supporting patients and families as they struggle with the fact of human mortality and strive to make better, more appropriate decisions. All physicians need to apply such thinking to all patients they encounter while acknowledging their own limitations:

Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.[4]

Volandes
Dr Angelo Volandes offers practical advice for talking with patients about “how they want to live their remaining time” in his easy-to-read book, The Conversation: A Revolutionary Plan for End-of-Life Care.[5] As in his presentations[6] on the topic, he uses stories from his patients’ lives and his practice to illustrate the different approaches to end-of-life care. He recommends using videos[7] to start the conversation, and also encourages patients to learn about their options and take the initiative when discussing end-of-life care. Volandes says doctors need to advocate for patient choices and “be the catalysts of change. Every doctor knows that in the end we all find ourselves on the patient’s side of the stethoscope.”[5]

Our patients
Of course, our colleagues are not our only teachers. How many of our patients are also our teachers about life and death? And when we ourselves are sick or dying, will we be teachers to our caregivers?

Over the many years of my career I have admired my patients’ courage and resilience and have been greatly humbled by their willingness to share their life stories. Through the stories of our patients’ lives we learn not only about them but about ourselves and how to provide the care needed; we journey together as human beings.[8] In supporting patients as they learn about the ways that people die and encouraging them to address the cycle of life, including its limitations, we may be able to help them avoid medicalizing life to the bitter end because of their inability or unwillingness to accept mortality. When we cannot recommend further medical intervention, we can still offer our companionship as patients gather strength to live out their remaining days in shared meaningfulness. Living life to the fullest means living with dignity even as we die.

Conclusion
All physicians, generalists and specialists alike, should strive to understand how patients and their families view aging and death and to use a palliative approach not only with dying patients but with seriously ill and frail elderly patients. It behooves us to educate ourselves about how patients and their families view death and dying, and reading what our physician-author colleagues have to say in the books described here is a good start to a fuller understanding. Furthermore, these and other books can be useful when engaging others in discussing end-of-life care. We can learn much from young Dr Kalanithi as he faces his own death, and from middle-aged Dr Gawande as he considers aging and watches his own father’s decline. Both Dr Nuland’s thoughts on ways of dying and Dr Volandes’ suggestions for starting the end-of-life conversation can be useful. Also useful are the strong and varied views expressed by the four authors on medical assistance in dying. As Dr Gawande comments, “Assisted living is far harder than assisted death, but its possibilities are far greater, as well.”[4]

How would you like to die? Only after we listen to the teachers in our midst, our colleagues and our patients, and grapple with how we would each like to die[9] can we help others address the existential angst that accompanies a terminal or unfavorable diagnosis.[10] Only then can we be properly equipped to act as true spiritual companions for our patients.

hidden

This article has been peer reviewed.

References

1.    Kalanithi P. When breath becomes air. New York: Random House; 2016.
2.    Nuland SB. How we die: Reflections of life’s final chapter. New York: A.A. Knopf; 1994.
3.    Nuland SB. How we die: Reflections of life’s final chapter. New ed. New York: Vintage Books; 2010.
4.    Gawande A. Being mortal: Medicine and what matters in the end. Toronto: Doubleday Canada; 2014.
5.    Volandes A. The conversation: A revolutionary plan for end-of-life care. New York: Bloomsbury USA; 2015.
6.    Keynote speech by Dr Volandes at the College of Physicians and Surgeons of British Columbia Annual Meeting. Vancouver, BC. 25 September 2015.
7.    Kryworuchko J, Gallagher R, Heyland D, Fowler R. A decision aid to prepare patients and their families for shared decision-making about cardio-pulmonary resuscitation (CPR). Accessed 10 February 2017. https://vimeo.com/48147363.
8.    Remen RN. Kitchen table wisdom: Stories that heal. New York: Riverhead Books; 2006.
9.    Murray K. How doctors die. 2011. Accessed 10 February 2017. www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus.
10.   Bates AT. Addressing existential suffering. BCMJ 2016;58:268-273.

hidden

Dr Wong is a family physician with a background in rural and urban full-service family medicine, emergency medicine, hospitalist care, and overseas volunteer work. She currently works with seniors in hospital-based rehabilitation as well as caring for the frail elderly in an extended care unit where she is also the medical coordinator. As a member of the Vancouver Division of Family Practice, she serves on the Residential Care Committee. She would like to die in her sleep but realizes that may not happen.