Regrettably, you’re going to die. As far as that goes, you don’t have much choice. But your death may involve a lot of other decisions, and perhaps you’d like to be the one to make them.
Would you prefer to die at home, for example, instead of in the hospital? If you fell into a coma with no expectation of recovery, would you want to be kept alive regardless? When you become unable to make those choices, who should make them for you?
If these matters make you squirm, you’re hardly alone. Just one-quarter of American adults have what’s called an advance care directive, a document meant to answer such questions. More people may get one drawn up now that Medicare has said it will pay doctors to discuss the subject with patients and their families. That would be a good thing – especially if it encourages a broader shift in the way people think about their mortality.
From a policy point of view, what makes a difficult discussion even harder is that it’s tainted by money. Americans spend a fortune on end-of-life care – including on aggressive treatments with little prospect of success and every prospect of making patients’ last months miserable. Choosing to forgo such interventions would save money, which rightly arouses suspicion that economy is the motive.
It shouldn’t be. Rethinking end-of-life care should be about improving quality-of-life care. That would be desirable even if it made health care more expensive.
Treating the end of life in every case as a medical emergency, rather than as a moment to seek comfort and dignity, runs contrary to most people’s wishes. In one survey, 70 percent of Californians said they would prefer to die at home; just one in three do. In another, more than 80 percent of patients with chronic disease said they wanted to avoid hospitalization or intensive care when they died.
Two-thirds of Americans say patients should sometimes be allowed to die. More than half said they would want their doctors to let them die if they had a disease with no hope of improvement that left them totally dependent on others for care; just one-third said they had put those wishes in writing.
What will it take to bring the experience of death more in line with the way people say they would like it to unfold? Part of the change can come from the health-care system. Paying doctors to discuss questions about the end of life is a start – but they’ll also need training in how to approach the conversation, to ensure the results best reflect each patient’s wishes.
Such training isn’t mandatory at most medical schools or residency programs. This needs to change. Expertise in guiding patients through the issues requires the same level of instruction, practice and supervision as any other procedure.
The federal government can widen choices in a different way. Many people spend the end of their lives in hospitals, fruitlessly and against their wishes, because Medicare won’t pay for the care they need at home. The program covers only certain types of home care, and usually just for a short period. It won’t pay for somebody to feed you or help you to the bathroom. Lack of such services forces many people into hospitals and nursing facilities, denying them the comfort and familiarity of their homes (and – say it softly – driving up costs).
Other changes would help. A bill introduced in June by Senator Mark Warner of Virginia and Senator Johnny Isakson of Georgia would make it easier for doctors to access their patients’ advance care instructions, to see how well patients’ goals line up with the care they’re getting. And state governments could follow Medicare’s lead, reimbursing advance-directive conversations through their Medicaid programs, which cover even more people.
Nonetheless, this is a cultural change, and governments and doctors can’t and shouldn’t direct it. People owe it to themselves and their families to take up the burden of thinking through these questions. The impulse to procrastinate is strong, but there are signs attitudes may be changing. When the government first tried to pay doctors to discuss end-of-life care, cries of “death panels” forced a retreat. Last week’s announcement produced much less pushback.
Representative Phil Roe, a Republican from Tennessee and a chairman of the party’s doctors’ committee, said he supported the change. “It’s something that nobody likes to talk about,” he said, but it’s “something you should sit down and discuss with your doctor and your family.” He’s right.
