It might seem odd to talk about “innovations in dying,” but in recent decades the hospice movement has become an important new pathway for the most difficult phase of life. As American health care has become ever more high-tech and expensive, the hospice model of home-based care for terminally ill patients has enabled millions of Americans to die peacefully in their own houses, without painful medical procedures—often greatly reducing stress on both the families and the health care system.
Now, however, the hospice model is coming under stress of its own. Some of that’s because the industry has changed, with a lot more for-profit hospice agencies and investor-owned chains, which are coming under scrutiny from regulators. But much of the stress comes from shifts in how we die, how we live—and with whom. These are big demographic changes that make the original conception of hospice harder to carry out as it was once intended.
With baby boomers aging and likely to live with serious illness for several years, understanding how best to take care of the aged and the dying is becoming an ever more pressing issue in America—emotionally, morally, and financially. “We need to address this very quickly,” said Joan Teno of the University of Washington, a prominent geriatrician who both practices and researches end of life care. “The tsunami of frail elderly people with complex multiple illnesses is coming.”
In theory, hospice would be an ideal system to deal with this tsunami. From the time it was developed in Britain in the 1960s and ‘70s, it represented a pushback against the over-medicalization of death, emphasizing comfort care and emotional support over disruptive medical interventions. It put great emphasis on family; hospice care is often delivered by close relatives rather than medical staffers. And it was originally designed with cancer in mind, at a time when cancer killed quickly.
Nowadays, however, dying itself has changed. Cancer isn’t the death sentence it was, and thanks to new waves of drugs that prolong life in late-stage disease, it can be hard to know when it’s time to stop treatment and emphasize pain relief. More than half of hospice patients have dementia, heart disease, and other slow-progressing disorders—and most of those have more than one such diagnosis, and a panoply of symptoms. That makes it harder to prognosticate just how much time someone may have left to live. Given that hospice care is generally available only to people likely to die within six months, prognosticating is important. Even to the practiced medical eye, it’s not always clear exactly when a patient is crossing that almost imperceptible line between “very sick” and “dying.”