This pattern seems to be what is happening in the United States. Whereas deaths in the home went from a clear majority in 1945 to just 17 percent in the late eighties, since the nineties the numbers have reversed direction. Use of hospice care has been growing steadily—to the point that, by 2010, 45 percent of Americans died in hospice. More than half of them received hospice care at home, and the remainder received it in an institution, usually an inpatient hospice facility for the dying or a nursing home. These are among the highest rates in the world.
A monumental transformation is occurring. In this country and across the globe, people increasingly have an alternative to withering in old age homes and dying in hospitals—and millions of them are seizing the opportunity. But this is an unsettled time. We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase. However miserable the old system has been, we are all experts at it. We know the dance moves. You agree to become a patient, and I, the clinician, agree to try to fix you, whatever the improbability, the misery, the damage, or the cost. With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time. And that would include me, whether as a doctor or as simply a human being.
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MY FATHER WAS in his early seventies when I was forced to realize that he might not be immortal. He’d been as healthy as a Brahma bull, playing tennis three days a week, maintaining a busy urology practice, and serving as president of the local Rotary Club. He had tremendous energy. He did numerous charity projects, including working with a rural Indian college he’d established, expanding it from a single building to a campus with some two thousand students. Whenever I came home, I’d bring my tennis rackets and we’d go out on the local courts. He played to win, and so did I. He’d drop shot me; I’d drop shot him. He’d lob me; I’d lob him. He had picked up a few old-man habits, like blowing his nose onto the court whenever he felt like it or making me chase down our errant tennis balls. But I took them to be the kinds of advantages a father takes with a son, rather than signs of age. In more than thirty years of medical practice, he’d not canceled his clinic or operating schedule for sickness once. So when he mentioned the development of a neck pain that shot down his left arm and caused tingling in the tips of his left fingers, neither one of us was inclined to think too much of it. An X-ray of his neck showed only arthritis. He took anti-inflammatory medication, underwent physical therapy, and took a break from using an overhead serve, which exacerbated the pain. Otherwise it was life as usual for him.
Over the next couple years, however, the neck pain progressed. It became difficult for him to sleep comfortably. The tingling in the tips of his left fingers became full-blown numbness and spread to his whole left hand. He found he had trouble feeling the thread when tying sutures during vasectomies. In the spring of 2006, his doctor ordered an MRI of his neck. The findings were a complete shock. The scan revealed a tumor growing inside his spinal cord.
That was the moment when we stepped through the looking glass. Nothing about my father’s life and expectations for it would remain the same. Our family was embarking on its own confrontation with the reality of mortality. The test for us as parents and children would be whether we could make the path go any differently for my dad than I, as a doctor, had made it go for my patients. The No. 2 pencils had been handed out. The timer had been started. But we had not even registered that the test had begun.
My father sent me the images by e-mail, and we spoke by phone as we looked at them on our laptops. The mass was nauseating to behold. It filled the entire spinal canal, extending all the way up to the base of his brain and down to the level of his shoulder blades. It appeared to be obliterating his spinal cord. I was amazed that he wasn’t paralyzed, that all the thing had done so far was make his hand numb and his neck hurt. We didn’t talk about any of this, though. We had trouble finding anywhere safe for conversation to take purchase. I asked him what the radiologist’s report said the mass might be. Various benign and malignant tumors were listed, he said. Did it suggest any other possibilities besides a tumor? Not really, he said. Two surgeons, we puzzled over how a tumor like this could be removed. But there seemed no way, and we grew silent. Let’s talk to a neurosurgeon before jumping to any conclusions, I said.