A new report has kicked off a vigorous debate over how we provide and pay for end-of-life care, but a crucial cultural dimension to the coming crisis is being largely overlooked. The Institute of Medicine (part of the National Academy of Sciences) warned in its report “Dying in America” that current end-of-life health care practices are unsustainable, because many practitioners assume that patients with terminal illness prefer medical intervention to palliative care—in part because few people think seriously about and inform doctors of their preferences while still healthy. As the Baby Boomers enter old age and put more stress on the system, this unsustainability will become even more acute.As the New York Times reports, the IoM’s recommendations include reimbursing providers for advance care conversations and using Medicare to fund more palliative home visits instead of expensive, treatment-heavy hospital stays. These are good ideas, in part because many people would rather die in their homes than expire in hospitals, hooked up to all sorts of tubes and unable to say a proper goodbye.However, the natural human fear and denial of death makes it hard to encourage patients to have these conversations, as WaPo points out:
When the federal Agency for Healthcare Research and Quality studied the issue about a decade ago, it found that medical records for more than half of severely or terminally ill patients didn’t include an “advance directive” with instructions for care if they became incapacitated. Strikingly, just 12 percent of patients with an advance directive said they had actually consulted with a doctor when they formed it.
The decline of institutional structures that can help us face, become reconciled with, and think well about death plays a big part in our inability to discuss these matters. Until we grapple with death as a personal reality, we are not likely to get much better at planning ahead for it—no matter how much Medicare tinkers with its reimbursements.