Saturday, April 24, 2010

Revoke -- An Update

Last month I wrote about Adele and how her family's anguish played out in their decisions to enroll in hospice and then revoke the benefit a day later. I speculated that Adele would die an uncomfortable death in a nursing home, unless the home panicked (as they are prone to do) and returned her to the hospital.

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.


  1. I'm not sure it has anything to do with rejection: I suspect they realised you were right but couldn't summon up the courage to say it to you to your face. So the solution was to accept hospice (good, the right thing to do, at least) but with another provider so they were spared the embarrassment factor. The true of the matter is that you have had a success in the education stakes and the lady died in the right place - the run up could have been better, but at least she had some comfort.
    Keep up the good work.

  2. I agree with Eileen. You provided the information.. which they used, once they were able to accept what you had told them. You were a facilitator and a teacher to them. You also gave them an out. They were able to be angry with the messanger ( projecting)... alleviating some of the pain. While you were not able to physically help the patient, you were able to teach. I would consider what you did a HUGE success.