Timing is another question. The New York law, for example, requires that information on palliative and end-of-life options be provided to patients whose life expectancy does not exceed six months. Can that really be predicted with any certainty?
“We can identify the person with Alzheimer’s disease or multiple sclerosis or cancer,” Segal-Gidan says, “but we can’t identify very well when they’re six months before death. And then it may be too late.” This is another likely reason why so many people spend so little time in hospice programs before they die.
It may make sense to encourage patients to consider the choices they would make sooner rather than later. But even if a plan of care has been established or an advanced directive has been completed, nothing is set in stone. People can change their minds; death is an emotional issue and even those who are capable of frank discussion in the abstract may feel differently when it becomes reality.
In their editorial, the doctors from Maimonides Medical Center described an elderly patient with gastrointestinal and lung cancer for whom a satisfactory care plan had been developed—or so they thought. When the patient’s condition started to decline, his daughter found that she no longer agreed with the plan.
“She had previously accepted the fact of her father’s impending death as a theoretical matter,” the doctors wrote, “but when she came face to face with the troubling reality of his deteriorating condition, her thoughts and feelings had changed.”
How patients will respond to treatment, how long they will survive, and how they will choose to end their lives—there is so much uncertainty. Yet who might have pressing need for these services typically is not part of it. As Segal-Gidan said, it is possible to identify patients with terminal illnesses or degenerative conditions (although the diagnosis sometimes comes much too late in the process). But what of the 32- or 45-year-old who survives a car accident but has a traumatic brain injury and can no longer problem-solve, process, or plan? Who will make the decisions for that person? Did he or she ever discuss with a spouse or parent what he or she would want?
“It’s when death occurs at younger ages, more suddenly or unexpectedly, or even after the course of an illness, that I think it doesn’t really get a lot of attention,” Segal-Gidan says. “The grief gets a lot of attention, but all of the things around it—preparing for it, acknowledging it as a possibility—aren’t talked about.”
It isn’t possible to predict death and it certainly isn’t possible to avoid it forever. If there is one thing that frustrates humans, it is that we do not have all the answers.