The Concept of a Good Death
Martha Laureville is 86 years old, and, when you first see her in Facing Death, she is dying. Lying in a bed at Mount Sinai Medical Center, she’s watched over by her two daughters, Nadege and Sherley. They’re trying to determine what to do next, whether to okay further treatment, including a tracheotomy, or whether to back off, make her “comfortable,” and let her die.
While the word “comfortable” is something of a euphemism, of course everyone involved hopes it comes as close to actual experience as possible. Like nearly 90% of the patients in the Intensive Care Unit, Martha is unable to speak. This means that her comfort can only be guessed at, and that decisions concerning her future must be made by what doctors call her “health care decision-makers.” None of what happens next is easy, as Martha’s daughters and their children try to sort out what she “would want.” Dr. Judith Nelson puts it this way: “These are decisions about whether people are going to be alive or not alive, and if they are alive, if they’re going to be living with dependence on life supports or not or in a quality of life that may or may not be acceptable to them.” Patients in ICUs, she adds, are often “very vulnerable and voiceless and cannot extricate themselves from that position.”
This means, says Dr. Scott Lorin, “Americans are now coming to ICUs to die.”
It’s a phenomenon facing more and more people, as pointed out in this remarkable episode of Frontline, airing on 23 November and also available on line. But the increasing numbers of cases like Martha’s are not making decisions any easier or more predictable. As well, Harvard Medical School’s Jerome Groopman points out, publicly voiced concerns about rising medical costs tend to focus on end-of-life care. “There’s tremendous pressure to reduce care to numbers,” he says, “When you look at Medicare data at end of life and what is glibly termed ‘waste,’ 30% of all care is waste, that’s the new mantra. It’s very hard to know what it means.”
Certainly, as Facing Death shows, in scenes that are both intimate and respectful, it’s hard to see any of the process as “waste” when you’re going through it. Each decision, each day, and eventually each moment, is meaningful. As doctors and other professionals explain treatments or ask after symptoms, patients and their family members worry, unable to anticipate specific events, and dreading them. Some people can go home, often with hospice. Others go home and then find themselves in such dire situations, so beyond the capacity of loved ones to take care of them, that they’re forced to come back to hospital. Here medications can help ease distress, but at end of life stages, these are no longer considered treatment. The idea is not to fix, or to improve, deteriorating bodies. The idea is to help, to ease pain, to make it possible for families to spend time together.
Still, it’s hard to know when lines have been crossed, when steps are right. As Barbara Mann, says, even when you believe a step is “humane,” you can’t know results. Doctors have more experience with such stages, but none of them is quite the same. “People surprise us all the time,” she says, “Every time, it’s scary because you are afraid that maybe you’re guiding someone to stop treatment when maybe it’s premature.” That chance makes it impossible to feel sure of any choice, and the uncertainty can be debilitating in its own way.
For doctors, most often, “the art and science of medicine mix,” says Keren Osman. And decisions are sometimes made “in a moment,” when “there are forces outside of myself, that are the patients, family, other physicians. So sorting that out can be very, very tricky in those moments.” Each instance in the documentary—which shows the ordeals of several families—is different, and no decision can seem wholly right. Doctors’ uncertainty is almost amplified by advancing technologies. “Because there’s so much innovation, and because of how rapidly it evolves,” says David Muller, “There’s almost always something else that we can do to put off the inevitable, another course of chemotherapy, a little bit more radiation. What if we got one more CAT scan?”
“Nobody wants to die,” offers Nelson as the camera hovers down a hospital hallway. “At the same time, nobody wants to die badly.” Health care proxies feel doubts and guilt, no matter how well informed, well considered, and carefully taken their decisions may be. If a bone marrow transplant might extend life, how might it also affect the quality of life? How much can the patient contribute to the decision, how are and how informed can he be at a given moment? Debbie and her husband John meet with a doctor who tries to explain what it means to stop treatments, to enter into palliative care. When she suggests the doctor is saying things John may not be prepared to hear, he insists, “I’m prepared to hear everything.” But as she rephrases for him, makes clearer that no treatment will make him better now, he’s stricken. He’s heard her in a way he wasn’t hearing the doctor.
This has to do with language and rhythms of course, the ways people who know each other can share feelings and fears and hopes. It also has to do with what doctors have seen and what they know, and how they put that experience into words. And it may be that the person dying knows more than anyone else. “The concept of a good death,” says Osman, “Is probably more important to those who are around the person who is dying, because they hold that memory in their mind. But I don’t know that the person who’s going through it… who knows?”