There's been an interesting discussion on the "Comments" section of this blog under the heading "Responding to Comments by Anonymous" (December 24), which I would very much like to expand, not just to additional readers of this blog, but also beyond it. I'm thinking of several possibilities, including setting up a new blog, in which several of us would take the lead role, or finding another blog on this topic to which we could become contributors.
There's a very interesting set of letters in today's New York Times on this issue; I did note that, of the seven letters only one is not by a medical professional (it's by the parent of an infant who died--the parent had to switch hospitals in order to get wanted hospice care for a dying, suffering infant); none is by a hospice patient. This, of course, has always been my frustration in my work in the psychiatric survivor movement--that others have always assumed the right to speak "for" us. For hospice patients, the reasons are somewhat different, but the fact remains that the voice of the hospice patient is not being heard. I think I'm in an excellent position to be such a voice (although I hope not the only one), for several reasons: I came into hospice rather early in the dying process; the course of my illness continues to be atypical, leading to my prolonged longevity in the program; and my past career is as an educator/advocate.
Another of the Times letters is by the wonderful doctor, Lochlan Forrow, who is the palliative care specialist at Beth Israel Deaconess Medical Center in Boston (among his many roles), who is the doctor I met with in October, 2008 when I first asked to talk to someone in palliative care. His main point, that a doctor quoted in the original article, commits an unethical act when he promises people that they will not die if they come to his hospital, both because no one can prevent all deaths, of course, but also, and more importantly, because such a statement totally closes off any possible discussions of options and choices for severely ill people.
I'm planning to submit an op-ed article to the Times, first making the point that the hospice patient voice needs to be part of the discussion, and then raising the issues we have been discussing here, but I think the Times may well not want to publish much more on this question for now. So I'm asking all of you to think about the best way to proceed from here. I definitely want to continue this blog, focusing mainly on my own condition and experiences, but I do think there is a place for this wider discussion to take place.