Friday, March 15, 2013
One could write pages about David and Debbie Oliver's remarkable plenary presentation Friday at the American Academy of Hospice and Palliative Medicine Annual Assembly in New Orleans. David has stage IV nasopharyngeal carcinoma and has taken his cancer journey to the public. Before I go any further, I'll refer you to David's book, "Exit Strategy: Depriving Death of Its Strangeness," Paul Tatum's Interview with David at Geripal from August 2012, and below, see a clip from David's Cancer Videoblog in which he talks about cancer and palliative care.
Of the many themes which arose from their presentation, I was especially struck by David's statements about the disclosure of his diagnosis to others and his frequent need to comfort the person receiving the news. Our culture struggles with the language to respond when surprised by the news that someone we know or meet has a serious illness. David talked about his 94 year old mentor telling him, "don't panic, don't struggle, relax, and accept it" in the face of the illness, and he's really taken the advice to heart. Yet I'm sure that many people he meets project their own fears about developing a serious illness, and thus assume that every day is a monumentally and persistently dour struggle. (I've had medical students and others remark to me before about a terminally ill patient, "how can they be in such a good mood?" as if this were forbidden once the illusion of immortality has been cast aside.)
I think David has the right formula for responding to people. He deprives death of it's strangeness by providing comfort to them.
I ask most patients what they have told their loved ones and how their loved ones are coping with the patient's illness. I don't routinely ask patients how others respond to the news of the illness. What happened when you told your hairdresser? The doorman? Your colleagues? Was their response comforting, unsettling, or downright bothersome? Do you feel comfortable talking to others about it? Perhaps those conversations go well. But when they don't go well, it results in social and psychological suffering. As David said today, "Don't move too quickly through the (anticipatory) grief!" (i.e. I'm still alive and treat me like I am!)
I briefly surveyed twitter and a few people in person, and there was general agreement that this type of question usually isn't asked (at least by many physicians) although some responded saying that they did usually or always ask about how others respond to their illness disclosure. I hope this is an opportunity to reflect on the value of this line of questioning and how we might help patients communicate more effectively with those around them in the interest of their social well-being.
Here's a study which further clarifies the emotional work of disclosing a breast cancer diagnosis.