Quaker Universalist Voice

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Patient Perspective

A Book Review of Paul Kalanitihi, When Breath Becomes Air: What Makes Life Worth Living in the Face of Death (2016)

Paul Kalanithi, When Breath Becomes Air: What Makes Life Worth Living in the Face of Death (2016) is the story of a talented young surgeon diagnosed with terminal cancers and his evolving relationship with physicians as a patient, also the importance of his marriage relationship and an anticipated child. The book brings the story from diagnosis up to several months before death. Death and post-death narratives are added in the well-written spousal Epilogue to this book. 

The idea of “Breath Becomes Air” is at the point of death when breathing stops in the air. 

The book is organized in two parts preceded by a colleague Forward and followed  by a spousal Epilogue.  The table of contents is unhelpful to the reader.

The style is attractive and candid. The majority of other book reviews rave about the style and candor.  This best seller was particularly appreciated in the medical community.  The medical and clinical story is well told.  The author is a talented commentator on literature in the Western tradition.

There is little theological reflection within the author’s religious tradition. There is no specific mention of Quakers.

The author does not address financial planning. There appears to be ample family funds for managing the illness and the financial support of the family after death. Money is not a medical management issue or a death issue in this book.  The author does not address the dilemmas of the costs of health care. The story’s premise appears to be that there are ample and ready financial resources for care of the patient and of the surviving family into the future following death.

The author does not address the challenges of the caregiver role for terminal cancer patients, beyond acknowledging in this story the role of the professional and willing physician-spouse as caregiver and recourse to local hospital services.

The author does not address the prospect of dementia, except for a reference in the spouse’s Epilogue about concern about the prospect of losing meaning and agency. 

The author does not address hospice services to the home or candid family discussions about decisions about hastening death, despite the likelihood that this could have been arranged for the death by physicians in a painless and comfortable manner, unlike what is available to the remainder of us.  (See Final Exit Network at https://finalexitnetwork.org/and Compassion and Choices at https://compassionandchoices.org/)

The family and patient show themselves to be limited and unclear about  decision making  regarding intubation and other heroic measures until just before the time of the death when communication with the patient is limited and desperate. 

There is no discussion of body disposition options or preferences. The author does not even address the elements of a decision about donating the body for scientific research and medical school education.  (For example, see the University of Minnesota Medical School Body Bequest Program at https://med.umn.edu/research/anatomy-bequest-program)

Death occurred in the hospital, not in their home.  Being a physician appears to increase overall confidence in hospital death, unlike this uncertainty and the priority of this decision for most nonphysicians.

There was no discussion of funeral arrangements and burial arrangements.  The spousal Epilogue recounts a huge gathering for a funeral service and a scenic location for the burial, but these arrangements appear to be largely post-death family decisions without consultation with the patient.

This is the partially candid story of a medically-informed, financially-independent, mutually affectionate, non-despairing, well-educated, and dignified picture of the management of a prolonged, existential crisis handled well. This book reflects elements of a universal experience in the final chapter of life. The author does not do more than hint at the emotional, mercurial, role change, sexual, affection dimensions of terminal cancer journey, but the dignity of the story warmly received, is a significant part of the rave reviews of this book by the medical community.  What it communicates, the book does well and with power. The other dimensions of the experience that are hinted at are left for another book.

Quakers: Quakers have no normative procedures for engaging all seniors in early life discussion of the important issues not addressed in this book, despite the changing demographics toward this century’s predominance of older people. Quakers appear to adopt the prevailing default cultural priority of respecting privacy over community engagement regarding death preparations.

Questions:

  • Are there any Quaker distinctives regarding death and end-of-life medical treatment that would set Quaker practice apart from other religious or cultural groups?
  • What services do Quakers provide to all seniors?
  • What are the sources of spiritual reading for the final chapter of life?

Resources:

When Breath Becomes Air: What Makes Life Worth Living in the Face of Death , Paul Kalanithi (Random House, 2016)

 

 

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