A friend of mine recently shared with me an email about a parking lot encounter some friends of hers had with an older woman who had just left her HMO doctor's office in a despondent state. "She had been directed to drive home, get some clothes, and report to hospice. She was alone and told it is time to die." My friend wanted to know what help is available for people in such situations, and what else her friends could have done for this woman, who refused further assistance from them.
The image of "reporting" to hospice, as if to incarceration or a train station for deportation to a concentration camp, is indeed shocking. But while I was not in that doctor's office, and it's possible I could be proven wrong, I just can't imagine that was really what the doctor said to the woman in the parking lot.
I fervently hope her physician said something more like: "We know you are having difficulty taking care of yourself on your own. I think the best alternative we have to care for you safely at this time, given the advanced state of your disease, is our inpatient hospice. There we have personnel who are skilled in addressing all of the needs you are now experiencing." I also expect that those personnel would be available to talk with and support this woman regarding the impending and actual losses in her life -- not just terminal illness but loss of home and of independence, in the context of not having any friends or family to accompany her on this journey. If only they could expedite her entrance through the hospice's doors.
But that's not what she took away from the conversation with her doctor. I believe that is because our culture so strongly resists candor about the hard realities of life-limiting illness that it was only natural for this woman to avoid the conversations and planning and arrangements that should have begun months ago. All she heard was that word: "hospice". It would be terrible for anyone to be told to "report to hospice." But I wonder if she were moving into a nursing home for the next decade, would it have been all that easy to pack her clothes and say goodbye to her home under those conditions. If she had no one in her life to go with her to the most momentous conversation of that life, what does it say about the rest of her life? And what could any hospice or health plan or system of health reform do to make her entrance into the hospice friendlier and more inviting? I can't imagine what form that transportation might take. Especially when talking about hospice, even saying the word, is so fervently resisted for so long by so many.
Those of us in the "death panel" business are still talking about Atul Gawande's landmark article in the New Yorker magazine. While vividly portraying encounters with terminally ill patients, his own and others', Dr. Gawande ultimately catalogues all of the reasons why it is so difficult to offer people appropriate, humane, specialized, expert care such as hospice at the end of life. Even when it would better meet their needs and reflect their professed values -- even when they say that is what they would want at this time of life. Even when it would give them the opportunity to express the things that matter most in life to those who are closest to them. Dr. Gawande identifies the usual culprits, well-meaning physicians such as himself, patients, families, insurance benefits, and the culture at large, which conspire to promote the high-stakes, high-intensity, high-pressure ICU solution rather than high-touch hospice care at the end of life.
It doesn't matter that the mortality rate, according to all reports, remains at 100 percent. We just don't want to think that stark statistic could apply to us.