I've had some follow-up about Adele. She left the hospital and moved to a nursing home. About ten days later, at the family's insistence, she was brought to the emergency department. They felt she wasn't doing well. The ED did its job, finding no changes of any substance, and she went back to the nursing home. A week later I discovered that she was once again a hospice patient -- enrolled with another program, not with mine -- and on their inpatient hospice unit. She died there several days after admission.
So I advocated for hospice, the family accepted and then rejected my advice, and finally accepted it again but went with a different hospice program? What's the take-home message here? Should I be gloating that they finally saw things my way? Angry that they rejected my program in favor of another? Depressed because I wasn't a good enough palliative medicine specialist to get them to stick with their first decision?
I vote for "none of the above." Instead, I think Adele and her family teach us two important lessons.
The first is that bearers of bad news do so at that their peril. "Don't shoot the messenger" applies equally well to warfare and the breaking of bad news -- not that there aren't other parallels, by the way. I think one reason Adele's family chose another hospice the second time around was because it was so hard for them to get there.
The second is that, faced with the devasting realization that nobody actually does live forever, each patient-family unit carves its own trajectory and proceeds at its own pace. The process can't be hurried. Sometimes I think that our job is to shield families, to protect their emotional space while they wrestle with the tough decisions they'd rather not have to make. Creating a safe, non-judgmental context for patients and families is part of the work I do every day.