My dad died of congestive heart failure in 2009. The last weeks of his life weren’t what they could have been had we known enough to get him into hospice care. But we didn’t know, and I’ve felt ashamed about that.
If we had it to do over again things would be very different. We’d have brought him home much sooner, made him comfortable, helped him work through a life review, hung out with him, heard and said some things that needed to be heard and said.
As it was we only managed to bring him home for his last day. It was better than not bringing him home at all, but not much better, at least not for him. For us, though, it was transformative. Two generations of our family — my wife and I, our children — had never seen the kind of death that was normal until the modern era. We’d didn’t know why or how to shift gears from medical treatment to palliative care. Now we do and we’re deeply changed — Luann especially. She’s become a hospice volunteer who comforts the dying, supports their families, and counsels survivors.
From her I’ve learned a lot about hospice care. What happened to us, it turns out, is typical. Many people don’t realize how comfortable a dying person can often be at home with proper medication. As a result many delay until the bitter end, and miss out on the emotional and psychological richness that’s possible in a home hospice setting.
A big reason for the delay is the chasm that divides the culture of hospitals from the culture of hospice. Nobody in the hospital advised us to bring dad home a month before he died. A social worker mentioned it, but dad didn’t know what it could mean to make that choice, we didn’t know enough to advocate for it, and medical professionals speak with vastly more authority than do social workers in our current regime.
What hospitals don’t know about hospice is astonishing. Last night, while reading an anthology of science writing, I happened on an essay by Atul Gawande, a physician/writer who, like Oliver Sacks, Perri Klass, and Abraham Verghese, opens windows into the medical world. In 2010, the year after our experience with my dad, he wrote a New Yorker piece called Letting Go that included these revelations:
One Friday morning this spring, I went on patient rounds with Sarah Creed, a nurse with the hospice service that my hospital system operates. I didn’t know much about hospice. I knew that it specialized in providing “comfort care” for the terminally ill, sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a morphine drip. It was not of this brown-haired and blue-eyed former I.C.U. nurse with a stethoscope, knocking on Lee Cox’s door on a quiet street in Boston’s Mattapan neighborhood
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months.
These things once surprised me too. Now, thanks to our brief hospice experience with dad and Luann’s volunteer work since, I take them for granted. And while I’ve felt ashamed not to have arrived at this understanding sooner, in time to help dad, I guess I should cut myself some slack. Atul Gawande didn’t get there any sooner than me.
How could that be? How could a leading medical practitioner (and explainer) reach mid-career lacking such basic and useful knowledge? All too easily when we carve the world into fields of knowledge and then build walls around them.