physicians

Book Review When Breath Becomes Air

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When Breath Becomes Air

by Paul Kalanithi

Forward by Abraham Verghese

ISBN 9780812988405 Random House, New York 228 pp

This author takes the reader with him through the terrible transition between his very ambitious and successful early life to his death as a 36 year old man– who gets lung cancer in the last years of his neurosurgery residency at Stanford. He had originally wanted to be a writer, but chose medicine instead. Yet he is still also a writer. As physician readers and reviewers, george meyer and I walked his walk not wanting to put the book down until the last word. Though Paul was unable to actually finish his book, he takes the reader to the point where he loses the ability to go on. His wife, Lucy, an internist whom he first met in medical school, provides closure in a touching epilogue.

The story begins at the ending…in the prologue. The author, previously treated for cancer, has recovered enough to nearly complete his 6th and last year of neurosurgery residency, when he develops extreme exhaustion and ominous symptoms. He pulls up and views his own CT scan with

‘lungs matted,… spine deformed, a lobe of the liver obliterated.’

Part I, 100 pages, could be of most interest to the non medically savvy reader. It tells of Paul’s life, from childhood through his years in medical school. Most interesting is that even while young he is concerned about life and death. That interest is sharpened later by patient care and by the death of his best friend. His writing is filled with pithy literary quotes, reflecting his extensive reading as a child and young man; and perhaps, great intimacy with his browser.

His portrayal of medical school and his experiences with patient care will be familiar territory to most physicians, and informative to others. He nicely portrays many of the challenges and contradictions medical students deal with as they progress through their training. Paul talks about the difficulty all of us (most of us) had with our cadavers and of the depersonalization we may develop so we are not too emotionally involved with the bodies we dissect. He describes the struggle of first-year residents who are fighting just to keep their heads above water. He worries that he was on “the way to becoming Tolstoy’s stereotype of a doctor”, dealing with the demands of residency, then practice, filled with the taste and smell of life and death while dealing with the ‘drama’ of the hospital, and administrators. It seems, though, that Paul develops a sense of who he is and what he stands for sooner than many of us do. He professes great sensitivity to patients and their families in the most trying of circumstances. He gets involved…intimately and actively, with patients, something often considered bad form or dangerous.

Part II, titled Cease Not Til Death, will likely be most meaningful to physicians, our friends, families, and other medical professionals. It is headed by this quote from Montaigne:

..to study philosophy is to Learn to Die”.

Paul, the physician, becomes the patient. He describes his years long struggle, both mentally and physically, fighting his malignancy. During a tenuous remission he is able to complete all the demanding requirements of his neurosurgery residency. He writes of the experience during diagnosis, chemo, recovery, mental rigors, and recurrence. Both he and his wife are high powered high pressure professionals, and the marriage is stressful and long distance; yet the cancer changes that, bringing them more together. Paul’s long drawn out dying also intimately involves his oncologist, who helps him consider and make crucial decisions. All their intertwined lives are changed.

This book– short by comparison with so many that are far less informative– is well worth reading both by medical professionals, and by the general public. The former often look into the eyes of death, and the latter will at some time… It seems likely neither will escape life without that encounter.

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Being There

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A primary care physician,–or generalist by whatever name–can best prepare and accompany a patient in that transcendental experience that is dying and death.
Family Medicine physicians, in particular, are ipso facto, concerned with the health of Family. Therefore, provided the patient agrees, the physician should encourage the participation of family and friends whenever possible; the life-long advantage of Being There for death is highly significant for both survivors and physician.

The doctor personally attending a dying patient was routine, 100 years ago. Perhaps that was in part because nothing else could be done; remember the Luke Fildes painting of a doctor sitting resignedly at the bed of a patient?

The_Doctor_Luke_Fildes

While it may be overly dramatic, the details stand a closer look: The physician’s demeanor; the neglected cup and potion; the disarray; the child’s parents; the darkened humble room. This doc is not attending nobility, but a family that lives at the edge of life. The doctor can do little except Be There. Isn’t that precisely the nature of death, that physicians can offer nothing except comfort, advice and –- most important under the circumstances–our presence?

We seem to have forgotten–or become fearful of– just being there for family and friends of the dying patient. Maybe we are afraid of being found out to be just… human; to have failed in our pretentions of scientific omnipotence. Because omnipotence implies guilt and deception when it becomes impotent. Yet the nature of life’s end is too critical a moment for a physician to give over exclusively to well meaning hospice teams, hospitals, nursing homes, or institutional types.

Clearly, Being There for death is quintessential to medicine. It completes the circle of a life, and  defines what is human, and  what a physician. Why should we abandon our patients and families in their extremis? No one, I believe, can better be there at that time than the physician, if well known to the patient.

In my own experience Being There is eminently doable, even though that was decades ago, in Woodland, when house calls were still common. The practice included something that could be called Home Rounds: regular visits, usually one afternoon each month to those who had difficulty getting to the office due to the limitations of chronic illness. The best features of those home calls were interpersonal, quiet, unspectacular, shared humanity. The visits quite naturally led, occasionally, to the time when death visited as well– as expected. The downside of those home visits was that better diagnostic and treatment options were not in hand. Yet present day micro-technology can largely minimize that problem; how contradictory that as it becomes ever more reasonable, available, effective, and mobile, its use outside institutions seems more limited.

There is no serious barrier to home visits, or to Being There today, even during the current medical perfect storm. (see below) Medicare regulations have been modified to allow primary care physicians to discuss end of life decisions as part of a health assessment. It seems clear the same sort of hocus-pocus will be made available by ACA administrators for younger people. (see below.)

However, the physician who hopes to Be There might best think about the process and plan for it –as we do with any other aspect of medicine. Perhaps the easiest part is already at hand; the material that is available from, for example, CMA, referenced here without further comment:
1) Advance Directives: see, for example:
https://www.cmanet.org/about/patient-resources/end-of-life-issues/
2) POLST. Be able to discuss Physician Orders for Life Sustaining Treatment https://www.cmanet.org/about/patient-resources/end-of-life-issues/physician-
The topic of dying is almost impossible to introduce quickly or easily. Most of the books on the subject are rather tedious or dense. I therefore suggest the physician go through exercise of making up a simple, easily understood one or two page letter to communicate with patients. I have done so, for people themselves to use, but it can be modified for use by a physician. It is found below in a version for use by patients, but should be updated because things change; it can easily be revised by a physician or others to introduce the subject in discussion. a version is viewable on line at https://nwalmanac.wordpress.com/.

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Thoughts on Death and Dying
When it becomes impossible to avoid death and dying, you may want to consider whom you want to Be There, even though no one is able to provide more than comfort. To make that possible, consider setting down information that can make clear your preferences. The purpose is not to replace the physician, pastor, other counselor, or hospice; but to assist them, and you, and your loved ones in this universal life experience that is at least as significant as any other, including birth.
Review your personal belief about death
Consider experiences that seem death-like:
The condition we were in before birth;
Deep Sleep, Dream, Amnesia of drugs.
Consider what you expect your own death will be like:
1) Will your death be permanent or temporary?
The beginning of life everlasting? Yes_____ No_____
A temporary condition before rebirth? Yes_____ No_____
A permanent state of rest, nothingness? Yes_____ No_____

2) Will you be aware or even conscious? Yes_____ No_____
3) Will you- can you- feel pain after death? Yes_____ No_____
4) Will you be rewarded or punished for your life? Yes_____ No_____
5) Do you want religious guidance to die? Yes_____ No_____
If so, who will be with you?_________________________________________
_______________________________________________________________________

6) Will friends or family to be with you when you are dying? Yes_____ No_____
If so, who will contact them?
Name: ___________________________________________Phone_______________________
Name: ___________________________________________Phone_______________________
Name: ___________________________________________Phone_______________________
Name: ___________________________________________Phone_______________________
7) Do you have an Advanced Directive? See, for example:
https://www.cmanet.org/about/patient-resources/end-of-life-issues/
8) Consider POLST, Physician Orders for Life Sustaining Treatment so you can better say what to do when or if you can no longer make decisions: see
https://www.cmanet.org/about/patient-resources/end-of-life-issues/physician-orders-for-life-sustaining-treatment

—You may want to take this completed form to your physician, friend, pastor or family. The physician can most readily provide comfort care personally.

—Speak up if your ideas change. That can happen!
—If you want your doctor to be with you when you die, ask that a copy be
placed –or scanned– into your record. Keep the original.

Date: ___________Signed:________________________________________________________

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Note:
There is much written on the subject of death and dying. However it is often too detailed, tedious or theoretical to be practical. That is why you, yourself, are the best person to determine your ideas on death and dying. You may think about practicing detachment from the things of your life. The short list below is inspired by Chapter 3 of The Tibetan Book of the Dead by Robert Thurman 1944 Bantam.
1) Begin giving things away. Especially things you care about. Give thoughtfully, carefully.
2) Review your relationships, concentrating on what may make your relations and friends.
3) Let go of your own body concerns; take care of it but be relaxed about it.
4) Meditate; when you do, or when you write, you can better find your inner self.

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See also:
http://www.nytimes.com/2010/12/26/us/politics/26death.html?pagewanted=all&_r=2&
http://voiceofsandiego.org/2013/08/12/second-opinion-how-does-obamacare-address-end-of-life-care/
‘President Obama had wanted end-of-life counseling to stand as a separate, billable service, giving families and doctors a clear route to make decisions about when to forgo treatment. The idea was scrapped because of concern the benefit might pressure families and incentivize doctors to pull the plug.
But there is language in the final law that moves the discussion forward a bit. The Affordable Care Act’s Medicare regulation says “voluntary advance care planning” can be included in covered annual wellness appointments. The planning would involve creating an advance directive, a legal document that dictates how aggressively a patient can be treated once he or she loses the ability to make decisions.’