Sunday, June 20, 2010
I stumbled upon a remarkable blog "An Explorer's View of Life" where Barry Fraser chronicles his experiences living with metastatic esophageal cancer. Fraser, who lives in Ontario, started the blog in 2008 approximately one year before he was diagnosed with cancer. The blog's original purpose (as per Fraser's bio) was to take "a lighthearted look at the events of the world around me, especially the adventures of my dog Lindsay." While many of his posts recently have been about his illness, the adventures of Lindsay still sneak in, of course.
Fraser obviously loves to write and while the average Pallimed reader might be interested in all of the posts, you should take special note of his descriptions of encounters with health care professionals.
- Waiting in the oncology clinic for CT scan results after palliative chemo: (Good example of how patients/families perceive how pivotal information is handled by health care professionals, the symbolism that can be attached to which provider walks through the door first- intern, fellow, or attending, and the role of humor for breaking the tension when "bad news" is anticipated.)
"I joked with Linda that I wanted the Oncologist who Heads the clinic there to meet with me, not the Fellow.
'If it's bad news they always give it to the Fellow. She looks more devastated by the bad news than we are.'
'No,' said Linda, 'If its really bad news they give it to the Intern and tell them breaking bad news it part of their training. So what you really don't want is the intern.'"
- Initial encounters with palliative care here and here. From the second post, entitled "Wizard of Pills":
Linda and I were in one of the treatment rooms in the GI Clinic at Princess Margaret Hospital having our first meeting with the Psychiatric head of the Psychosocial Oncology Department and Palliative Care Unit. He was a tall, calm man, with a soft voice and the body of a weightlifter.Sidebar comment: The quote above is obviously not verbatim, but this interchange deserves further examination. How to describe palliative care (and hospice) to patients has been a topic of conversation previously. A description of the role of palliative care may not feel like pivotal information to the provider, but it is to many patients. As with the communication of any pivotal information, using the "ask-tell-ask" approach can be quite helpful and we see a partial example here. Note that the psychiatrist's initial "ask" ("What did that term mean to you?") elicits an answer that at the same time invites the "tell" (communication of additional information to clarify palliative care's role) AND provides a potential clue/opening to an important topic of conversation (preparation for death). Fraser's answer to the question hints at a willingness and/or desire to discuss this further, although that too would need to be clarified by the provider.
"What did you think when you heard the term 'Palliative Care'?" he asked. "What did that term mean to you?"
"Preparation for death." I told him.
"Well, we can do that too," he agreed. "But that's not what we're really all about. We're about pain management and quality of life. And it looks like the quality of your life over the past few weeks has really sucked. So we need to fix that immediately."
Fraser's most recent post comes today as he prepared to enter the hospital to attempt to palliate pleural effusions. I look forward to reading more of his posts. On this Father's day, I wish relief to this man and all fathers suffering from serious illness.