When I was a child, people still died.
Death could be sad, even tragic, or it could be a merciful release. There was a whole range of emotion possible around it. But unless it was a sudden death, or the death of a very young person, it was not a surprise. And certainly not “unnatural”, a kind of defeat or failure in a war that should have been won. It was what happened when people were old enough, sick enough, or unlucky enough. And ultimately it came to all of us. How times have changed —-
Pauline Chen, M.D.’s, Final Exam: A Surgeon’s Reflections on Mortality, is an exceptionally important and honest book.
In it she acknowledges the steep climb necessary to change our culture’s current perceptions, so different from the time of my childhood. In our culture, we —physicians and health professionals AND patients alike— see death as the enemy, a personal failure; but even more, we truly believe, or act as if we believed, that death is something that can ultimately be conquered, that there’ll be no more dying then. All we have to do is fight hard enough. How many obituaries do you read which begin, “After a long and courageous battle with ….”? Most of them.
In Final Exam, Chen paints this portrait of today’s medical profession:
“… without guidance or advice, few of us ever adequately learn how to care for patients at the end of life. We end up sifting through our own experiences with precious little support, and we watch patients die, sometimes directly under our watch and always despite all of our best efforts and all that we have learned. For many of us, it is a rite of passage that is painful and terrifyingly lonely…”
But her description also fits patients and families, and her book is a challenge to every one of us to rediscover ars moriendi, the art of dying. Until we somehow manage to gain sufficient humility to recognize that death is our destiny (as a Taiwanese astrologer in a long ago memory accomplished for Pauline Chen), we face lonely, meaningless, and often agonizing deaths.
Humankind was not always so foolish.
In more traditional societies, those which still retain some connection to their roots, the dying are honored by the watchers by the bedside, by the washers of the body, by the mourners, honorable professions all. In the forefront should be the doctors, those who have the power to offer relief from pain, and comfort and care and companionship in that final passage, to round the circle and ease death, a supreme triumph.
Instead, seduced by the formidable arsenal of modern medicine into the ultimate chutzpah, the notion that banishing death is actually within our power, there remains only shamefaced or silent testimony to a failure. A failure of patient, family, staff, physician. To turn triumph into defeat —- Of the many bitter ironies in our culture, here is one of the bitterest.
Chen discusses the clinical culture of doctors and how it depends upon “treatment algorithms,” what she calls “rituals,” “how concentrating on the ritual becomes our professional method of coping….we learn not only to avoid but also to define death as the result of errors, imperfect technique, and poor judgment. Death is no longer a natural event but a ritual gone awry.”
Furthermore, she points out, “even students who have learned end-of-life care during their first two years of medical school are rapidly ‘untaught’ once they enter the clinical realm.”
She quotes arguably the greatest physician of them all, Sir William B. Osler:
“We speak of death as the King of Terrors, yet how rarely does the act of dying appear to be painful, how rarely do we witness AGONY in the last hours. Strict, indeed, is the fell sergeant in his arrest, but few feel the iron grip; the hard process of nature’s law is for most of us mercifully effected, and death, like birth, is ‘but a sleep and a forgetting’.”
Osler, of course, wrote before our era’s heroic measures and “rescues,” with their attendant torments. But today’s machoism does not have the last word in Chen’s book. That is given to an extraordinary doctor, both healer and terminal patient, who, “with dignity and unflinching candor” points the way for her to “do it differently.” She quotes from the testament of cardiologist Hacib Aoun: “We need to devote more time and attention to teaching attitudes, skills, and behaviors at the expense of the present preoccupation and fascination with technical knowledge.” (Hacib Aoun, “When a House Officer Gets AIDS,” New England Journal of Medicine 321, 1989: 693-696)
Since the nineteenth century, it is obvious what has been gained in medicine. But what has been lost?
I urge you not to be turned off by the subject matter. This is a gracefully written book, a “good read,” and, perhaps surprisingly, it is inspiring. Perhaps, along with the writings of physicians Atul Gawande, Jerome Groopman, Lisa Sanders, and Danielle Ofri, it will provide a critical mass for change to happen.
P.S. There is an additional discussion I would have liked to see, although I understand why it isn’t there. Chen focuses on the role of physicians: it is her own calling. But surely nurses are the foot soldiers in caring for the dying, and so I wonder about enhanced possibilities for collaboration between these two vital professions. But that would be yet another book — and the one that Pauline Chen has actually written is in itself a powerful and stirring witness.