What do you want to do with the rest of your life?
That was not the question Rusty Hammer expected to hear when he reluctantly agreed to meet with a hospice social worker. Rusty had a rare, aggressive form of leukemia. He thought hospice was a place you go to die. He thought it meant giving up.
But the social worker told him that even in the final stages of a terminal illness, there are choices. Is there someone you want to mend fences with? Is there work you want to finish? Do you want to travel? Keep family and friends close? The social worker’s list of choices took up residence in Rusty’s mind. He decided to stop the debilitating treatments he had endured for five years and sign up for hospice.
When we set out to write a book about hospice, we did not expect the central question to be: What do you want to do with the rest of your life?” But again and again, we found that once people accepted that dying was not an “if” but a “when,” hospice care opened up incredible possibilities for patients and families to find comfort, meaning, and even joy. Hospice care enabled Rusty to reclaim his life. He spent his final months with family and lifelong friends. He explored his religious heritage. And he wrote a book that he’d been thinking about, to help other people deal with cancer.
Rusty is one of the people we profile in our forthcoming book, Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement (Viva Editions, 2014). He and his family are among the many people who showed us that, at its best, hospice is more than a way to relieve the suffering of dying. It is a way to live.
Embracing the “rest of your life” question turned out to be life changing for the two of us, journalists who clung to the typical American death-denying mindset until we faced end-of-life decisions in our own families. Sheila’s father died in hospice care. Fran’s father died in a hospital. Our different experiences set us on a nearly three-year quest to find out how, in an age of high-technology worship, especially in medicine, the down-home practice of hospice has become so widespread.
Once we figured that out, we wanted to know: Why is hospice so enormously underutilized?
An astonishing 1.5 million Americans die in hospice care, nearly 45 percent of all deaths. But even though Medicare and most insurance plans cover hospice for terminally ill people in the last six months of life, most people don’t come in until the final days—too late to get the full benefits. Hospice provides the most comprehensive, compassionate care many people will ever receive. Almost every family we met told us they wished they’d known about it sooner. And the corollary: they wished they’d talked with their loved ones about dying before the reality stared them in the face.
Those wishes inspired us to create this blog.
There’s a growing hunger to talk openly about dying—witness the emergence of Death Cafes around the country. Yet, as a recent survey found, most people find it hard to sit down with the people they love and talk about their wishes for end-of-life care, even though they know those conversations are important. In researching our book, we discovered that the subject doesn’t have to be scary or depressing but avoiding it can be, because the default is to continue treatment past the point of futility. Honest conversations about end-of-life choices can save so many people from tortuous days in the ICU, screaming ambulance transports, and needless suffering.
In this blog, we will weed through myths about hospice care. We’ll talk to doctors and nurses on the front lines. We’ll cover news in the rapidly changing world of end-of-life care, including the growth of palliative medicine and the explosion in McHospices—for-profit chains that are taking over what until now has been a largely charitable venture. We’ll also write, more broadly, about efforts to help Americans think differently about death, die better and live as fully as possible until they do.
Most of all, we’ll write about topics you care about. Please send your questions and your stories. We look forward to an ongoing conversation.