Saturday, February 11, 2006
I'm back home in a snowy Milwaukee from a drizzly Nashville & my inbox in overflowing with abstracts which I'll be slogging through in the next week. Nashville was good. Besides meeting many, many people my favorite part of the conference was Linda Ganzini's talk on who chooses physician assisted suicide in Oregon. The answers were not shocking, and were in line with the Dutch euthanasia experience (to a large extent): people who choose PAS do so out of a fear of loss of control, not from actual suffering from physical symptoms, intractable pain, etc. I was particularly struck by something Dr. Ganzini said (I'm completely paraphrasing here):
'During interviews with these patients, they would often comment how they couldn't stand the idea of being a burden to their families. Family members in the room would inevitably pipe in with "We've told him a hundred times that she's not going to be a burden but she won't believe us." These patients are unable to accept that the process of dying--of becoming disabled and dependent as they head towards death--and of being cared for through this by family, could be a meaningful, valuable experience.'
Brilliant. I was struck while listening to this, though, about how different the media rhetoric about PAS is from the reality. Even just last month, after the Supreme Court decision, when I was reading the newspaper and listening to the NPR coverage about the decision, I noticed that PAS is discussed in public by its advocates as an important option for those who are suffering terribly from a terminal illness. That is technically true but misleading. For most people that would mean intractable suffering from intractable physical symptoms (pain, dyspnea, etc.). The reality is 'intractable suffering' from a fear of losing control at the end of life (or however you want to put it), not physical symptoms. The problem here is that the subtext to all of this is a perpetuation of the myth that intractable physical suffering is common/to-be-expected at the end of life and that PAS is 'needed' as an option to solve this. Stated otherwise: good hospice care and expert palliative care fails fails frequently enough to relieve physical symptoms that PAS is a 'needed' alternative. Perpetuating this myth helps no one. Additionally, I wonder if it would not serve the interests of PAS advocates if this 'news' came out; that people choosing PAS are doing it out of reasons of control, not symptoms. Perhaps not, perhaps most people get the whole "death with dignity = control at any cost" business.
Enough of that. Except one more thing: Ganzini stated that, to her knowledge, no African-Americans or Hispanic patients had 'taken advantage' of Oregon's PAS system. That's interesting.
There were of course many other great sessions & posters. Maggots for wound care, that sort of stuff. There was lots of talk about the transition from the ABHPM to the ABMS but I'll refer you to those sites and AAHPM's about that.
The well-organized, Christian-Sinclair-spear-headed Pallimed get-the-word-out-campaign seemed to be a success and we officially welcome any new readers to the blog--we hope you get something from it. If not, leave angry comments. That is not a joke, we want to blog to be valuable to our readers (within the purview of the mission statement mentioned up above on the webpage); so if it's not living up to that let us know.
Perhaps as a response to the Pallimed campaign Christian and I were asked a question about the difference between Pallimed and PC-FACS (the new one is out by the way ). As I've said before on this blog, PC-FACS is clearly a project after our own hearts. PC-FACS are peer reviewed critical summaries of important new pall-care-relevant literature. There's a process to them, and they are written and edited with an eye to concise interpretation--focused on relevance--for practicing palliative care practitioners (much like the ACP Journal Club or the Journal Watch publications). Pallimed is an informal, idiosyncratic, (but hopefully a mostly critical) gloss of what is these days the deluge of palliative-care-related publications coming from all quarters of the academe. We review whatever tickles our fancy, including completely clinically irrelevant articles about gum chewing and pain. Our goal, and this is perhaps the fundamental distinction between the goals of Pallimed and PC FACS, is that we want Pallimed to be a forum for discussion about pall-care-related literature as it comes out. Many of us have our professional list-servs, and the Growth House and Palliative Drugs clinical forums for clinical questions; but to my knowledge there's no forum to discuss new literature. Are we succeeding at this? Not particularly. We've (I've) sort of had a 'if you build it they will come' attitude to the blog but that hasn't worked very well; thus the outreach campaigns, etc.
Ok. Enough meta. I promise the days of self-absorbed, bloggerly reflection are over. We shall get back to the business of blogging articles. But do, if you wish, leave comments, send emails, challenge, suggest, amplify, and put us in our places.