My sister died slightly over a year ago at the age of 65 as the result of a malignant brain tumor. Like so many others with terminal conditions these days, Susan didn’t die all at once, but in many, highly medicalized stages over the course of two and a half years. After each new crisis or setback, or just another sinking realization that the latest high-tech intervention wasn’t working, there’d be another somber conference with medical personnel, and another treatment would be started—a more powerful form of chemo, a course of radiation, finally a surgery so new it hadn’t been invented when her “inoperable” tumor was first diagnosed.
Although Susan was good-humored, uncomplaining, and worried only about how her illness was affecting other people almost until the end, at each stage, she seemed to lose a little—and then a lot—of herself: her fierce independence, her privacy (you lose that completely when your body becomes the ward of the medical system), her energy, her facility with words, her quickness of mind, even briefly toward the end with the increased pain and debility, her innate serenity. At each stage, we’d struggle to get used to the new, diminished status quo, come to terms with it, live around it, and continue to be and communicate with her.
Still, we never became inured to the disorienting emotional loop-de-loops between fear, faint hope, dismay, grief, despair, confusion, ambivalence, and even occasional moments of cock-eyed hilarity. We never lost the need for somebody, anybody, who could guide us, telling us not necessarily what we should do for Susan—phalanxes of medical experts were already telling us that—but how we should comprehend what was happening to her, and to us, and help us make sense of this slow-motion whirlwind.
Susan was relatively young, and her condition quite rare. Yet, as the writers in this issue powerfully demonstrate, medical science has made extended dying and its impact on relatives and loved ones—what psychologist Joseph Nowinski, in the issue’s cover story, calls “the new grief. . . the gritty business of living with slow death”—increasingly common, even normal. People, who would have died fairly quickly after a stroke or heart attack or terminal cancer diagnosis 40 or 50 years ago, now may be kept alive for many months or years. This can be a fine thing when people once doomed to quick deaths get more quality time along with their stays of execution. But this same gift of extended life can have dark ramifications. “What used to be, for the most part, a fairly straightforward and often quite sudden event,” Nowinski writes, “is now more likely to be a wrenching, lengthy, often emotionally physically, and financially ruinous ordeal, which can whipsaw us back and forth between fear and hope, euphoria and despair, resentment and guilt, belief and doubt, with numbing exhaustion usually a constant.” He articulates the growing question many of us have: are the extreme costs—medical, social, economic, and personal—of keeping people barely alive for long periods of time actually worse than death itself?
Complicating matters, adds Nowinski, is the fact that we don’t know how to have the honest conversations “that would help us better understand what to expect of this harsh landscape, and how to pick our way through it.” Therapists, however, are uniquely well-placed to engage people in this emerging conversation and to begin creating a revised social “manual” of death and dying to help us negotiate this profoundly complex and bewildering new world. Certainly, my family and I could have used some help with this.