Continuing my discussion of the findings in our recently published study on the ways family physicians deliver better care at a lower cost than a multi-ologist model, today I will talk about how family physicians believe death is natural, and not a defeat on the part of the patient or physician.
The actual wording of this finding was suggested by the medical anthropologist on our research team. It struck him, and the rest of us, how often family physicians regarded aggressive testing and treatments in dying patients as unnecessary, or worse, harmful. Surgery to remove one tumor in a body riddled with other tumors, excising basal cell carcinomas from the scalps of severely demented nursing home patients, continuing mechanical ventilation and IV pressors after a comatose patient with a massive stroke has shown no signs of improvement in a week: these were they types of cases where the basic reaction of the family physician was, ‘Why the hell are we doing this?”
We all know that in some of these cases, it’s not the physicians pushing this aggressiveness, it’s the families of patients. But our family physician interviewees still felt that their approach to these dilemmas was to at least question the family why they wanted these treatments, and certainly not recommending these treatments the way the ologists did. Instead they wanted to focus on comfort care and helping the family begin the emotional journey of letting go of a loved one. They wanted to guide the patients to a new understanding of what hope looks like: a day spent in relative comfort enjoying precious time with family and friends, and not obsessed with the unachievable goal of cure.
G. Gayle Stephens, MD was one of the U.S. pioneers of family medicine. He was the program director of one of the first 15 original residencies in Wichita, KS and wrote some of the early pieces in medical journals explaining and defending the creation of this new field called family medicine. In 1979, he gave a speech where he bemoaned the anemic success of his new profession of family medicine. The article was entitled Family Medicine as Counterculture. He wrote:
Family physicians have no unconditional faith in science, and this marks us as belonging to the counterculture.
[W]e have a different perspective on disease and death. Put in its most repugnant form of expression, we do not believe that death is the worst enemy. Kierkegaard probably said it best: “When death is the greatest danger, one hopes for life; but when one becomes acquainted with an even more dreadful danger, one hopes for death. So when the danger is so great that death has become one’s hope, despair is the disconsolateness of not being able to die.”
For more than a hundred years medical science has been conducting a passionate, spectacular, and costly crusade against death, the most constant reminder of the ultimate impotence of Science. In this crusade, family medicine represents a heretical apostasy, for it does not share with the rest of medicine an unquestioned loyalty to the twin deities, Rationality and Power. … [The family physician] knows the terror of human suffering and the limits of Rationality and Power when life comes to its end. He or she also worships at other altars the goddesses of Love, Mercy, Hope, and Reconciliation—dieties long cast aside by Science. …
At the deepest level, family medicine is concerned more with life than death. This is not meant to be a fatuous comment. For prescientific man life was the obvious reality, and death was the exception—the intruder. When science began to unravel some of the mysteries of life, it became preoccupied with matter, ie, with protoplasm stripped of all the features of life. Hans Jones commented that then, “Death is the natural thing, life the problem. This means that the lifeless has become the knowable … and is for that reason also considered the true and only foundation of reality.”
We know that this is not true; the foundation of human reality is not mere protoplasm, the stuff that modern medicine knows so well; it is sentience and language and meaning and other beings that distinguish human reality. Protoplasm is a substrate for them, not their ultimate reality. When these are absent death has occurred—no matter that the protoplasm can be maintained by great and wonderful machines. This is not an apologetic for euthanasia or for life after death; it is an assertion about the nature of the Self, that dimension of the human organism that so much of modern medicine, in its tunnel-visioned preoccupation with the tiniest fragments of matter, knows so little about.
… Since the days of Virchow, medicine has committed its whole heart to the belief that diseases are fundamentally protoplasmic in nature, and that if we could only understand the molecule, we could not only conquer disease, but even death itself. Like a garishly glittering and fascinating but increasingly obscene sideshow, medicine has become obsessed with its technological legerdemain in the past century. We do our tricks automatically and passionlessly without noticing that the faces in the crowd show less astonishment than fear, less amazement than disgust, less pleasure than anger.
Along the way there have been some brilliant and gratifying successes using the man-as-a-machine model of research. But now we are finding that our single-minded commitment to this ideology has produced a monster—a monster that has at least as much power to harm as to help and that threatens to bankrupt us if we continue to worship it.
… in the euphoria of our halcyon days we are guilty of overweening pride—what the theologians call hubris. Modern medicine has no philosophy of science or mind; no anthropology, no concept of history, no ethics – only power.
Jump forward to today. Our popular media and culture has Robin Roberts shouting “I’ll never stop fighting!” and the for-profit Cancer Centers of America selling technology as the equivalent of hope. America has become sanitized to the reality of death. But when this inevitability happens, many Americans have a great difficulty coping. Our fear of death has made the dying process worse.
It turns out that comfort with death has been a hallmark feature of family medicine since its beginning. However, you won’t find this listed as one of the features of the patient-centered medical home, or listed on the AAFP website as one of our core values. Maybe we didn’t realize this was the case. Equally likely is that we’re too afraid to rock the boat and stand a the top of a mountain shouting, “We’re not like the other doctors!”
It turns out that family medicine actually has a few allies out there. David Brooks, the New York Times columnist, wrote a piece in 2011 where he correctly equated the budget battles with our national fear of death. Every now and then articles are published in the mainstream press that question the cold technology of modern medicine and wonder why we can’t die with more dignity than PET scans and radiation treatment machines allow.
But for family medicine to thrive in the U.S., it must accept that one of its major challenges is that in many ways it is fundamentally un-American, at least the America represented by much of the popular media. We need to reach out to our fellow Americans who are disgusted by the dehumanizing experience of the overuse of technology at the end of life and offer them a better way. We must challenge the wisdom of an ever increasing reductionist attitude and technology such as genetic profiling.
But to do this means we family physicians have to shed our nice-guy/just-get-along persona we have honed so well over the last 40 years and actually grow a spine and fight for our values.
Yes this is difficult. But if we don’t, we’ll die as profession, and our children’s economic future will die from the crushing debts our fear of death has loaded upon their shoulders.