In the past decade, there has been a sea change in our willingness to talk about the end of life, with a number of best-selling books focusing on either scientific or subjective experiences of death. Last year, doctor Atul Gawande’s “Being Mortal” — a book about the realities of dying — became a bestseller. Brittany Maynard, a 29-year-old with terminal brain cancer, became a household name when she posted a series of YouTube videos explaining her choice to move to Oregon and take advantage of its law that would permit her to end her life.
You have only to talk to a room of doctors, patients, medical educators or hospice providers to hear everyone agree on what is needed: more planning for the last year of life; more doctors having the difficult conversations; less automatic treatment for conditions that can’t be cured and more attention paid to the emotional and spiritual sides of dying — not just the medical part.
Despite our knowing all of this, only about a third of us actually die at home. Most die in hospitals or other institutions, often in intensive care after a series of aggressive measures. Families still bear a heavy financial burden, as do our social welfare systems. Nearly a quarter of all Medicare spending takes place in the final year of life.
That’s because behind our common-sense goals lie a complex set of obstacles to navigate: state and federal laws, insurance reimbursement practices, hospital regulations, and the traditions and hierarchies of existing medical practice, not to mention deep-seated cultural and religious obstacles.
The use of hospice care for terminally ill patients has increased — almost doubling since 2000. Yet an entire medical system pushes patients in the opposite direction. Most insurance companies still pay for actions, not outcomes, encouraging further treatment. Medicare still requires patients to make a stark choice between medical treatments and comfort-only treatments in hospice in order to be reimbursed. Despite the complex decisions that need to be made, most medical schools give future doctors a session or two at best on end-of-life conversations. Some have none at all.
Palliative care — a specialty that focuses on patient comfort and alleviating symptoms of serious illness — is gaining increasing acceptance. But most medical education is still aggressively focused on curing and treating; palliative care doctors or nurses are often outranked by the surgeon, oncologist or cardiologist, which diminishes their effectiveness.
Most states still prohibit doctors from helping terminally ill people to end their lives. Beginning in 1997, Oregon was the only state in which physicians could provide life-ending drugs. Since 2008, Washington, Vermont and Montana have passed similar legislation. California’s assisted-suicide bill was signed this month and goes into effect next year. Advocacy groups say 26 more states are considering similar laws, but religious and social objections have proved difficult to overcome.
Indeed, cultural taboos and instinctual reactions can get in the way of openly discussing the end of life. While virtually every world religion has an outright prohibition against assisted suicide, most also affirm the morality of choosing to refuse extreme treatments or increase pain medication dosage to near-lethal levels. Although the use of discussion tools and advanced directives is expanding, families and friends remain hesitant to talk openly about death. In minority communities especially, distrust of outsiders may make it less likely for doctors to be included in open conversations and decision-making. Even when explicit instructions are available, families are often reluctant to give up hope and end treatment. There is no universally accepted way in which to apply these end-of-life documents, or even to insure that they are followed.
How are we shaping end-of-life care in the United States today, and what changes are on the horizon? Why are patients’ stated desires so often at odds with their experiences when it comes to end of life, and what can — or should — we do to close the gap?
Over the next few days, we’ll hear from: