My uncle died last month at the age of 94, not long after celebrating his 60th wedding anniversary. He died in a hospital bed set up in the living room of the apartment in an assisted living facility where he and my aunt had moved a couple of years before, and where they had entertained a succession of visitors, mainly their three children, numerous grandchildren and, most recently, a great granddaughter.
My uncle died peacefully following a slow decline, attended by his wife and a hospice nurse. The nurse had noticed his irregular breathing during a scheduled home visit and sat down to time the breaths, but the next one never came. My uncle’s full life and love of family and music were celebrated in a service at the tall-spired Presbyterian church where he had been active for nearly six decades. The pipe organist played one of his favorite pieces, Bach’s Toccata and Fugue in D Minor, thunderously, with all of the stops pulled out.
There’s nothing unusual in my uncle’s story. This is what we generally think of as a good life -- and a good death, quietly slipping away without pain in a peaceful setting, his life partner at his side, not overburdened with intrusive medical technology. That’s what people tell pollsters they would want at the end of life, but it can be hard to achieve these days without the help of a committed and competent hospice team.
When I saw my cousin, who knows that I write about hospice care, she emphasized that the hospice had given her father good care. She characterized the encounter as a positive one. “They had suggested hospice earlier, but we weren’t ready. When the right time came, we just knew.” That is something else I have heard before: people aren’t ready when hospice is first suggested. At some point, the right time comes and everyone just knows it. But what is that mysterious point, and how do people recognize it?
Those who work in the field say that hospice is often not well understood by consumers—at least not with the appreciation of nuances and opportunities that we might wish. We know that people don’t like talking about end-of-life care. One survey found that Americans would rather discuss sex and drugs with their teenaged children than end-of-life care with their aging parents. We also know that medical prognostication of a terminal illness of six months or less to live is notoriously unreliable, even for the most skilled practitioner.
Hospices complain that too many referrals come in the final days or even hours of life, often under extremes of symptomatic crisis. Yet average lengths of stay in hospice are creeping up, and government watchdogs are concerned that some patients are enrolled for too long -- longer than the intent of the 1982 statute creating the Medicare hospice benefit. (That’s a subject for another posting.)
Many families have expressed regrets that they weren’t referred to hospice sooner, so that they might have taken more advantage of its support and expertise. It is probably true that some of those families would have resisted an earlier referral. We also know that patients sometimes miss out on very real opportunities for meaningful farewells, wrapping up their life’s business in satisfying ways and leaving legacies for those left behind -- in other words, the optimal hospice-facilitated experience -- because they were too busy grasping for low-yield, intensive medical interventions aimed at cure.
When I add up these different perspectives, it becomes clear that the path into hospice is not an easy one. The markers for optimal transition are not widely agreed upon between patients, families, physicians and hospice professionals. Despite this lack of clarity, some 1.4 million Americans crossed the threshold into hospice care in 2007, each with their own sense of when was the right time, with their own unique version of the hospice experience and their own highly personal encounter with dying. Some resisted the referral or came with reluctance. It is hard to agree on what the proper time for a hospice referral ought to be. But in many cases, for reasons I can’t explain, when the time was right, they just knew.