Saturday, January 2, 2010

Promoting wider dialogue on death and dying

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.


  1. Dear Judi
    I first crossed paths with your work by your words in On Our Own. I remember that I stayed up through the night reading it from beginning to end.

    Subsequently I produced, in my undergrad training, a 15 minute docu/drama film . . .
    song for my father

    You are a featured interviewee in the work.

    The message brought forward by yourself and other activists in this short film has travelled near and far over the past 8 years.

    Most recently it has been picked up as part of the course material for an online course that David Reville developed recently - slated to begin this Spring 2010 semester at Ryerson University. The elective course is called 'a history of the mad movement'. The 'organic' course has been running for about three years . . . and I am told that more than 300 students have viewed song for my father.

    I write you now to express my deepest thanks for showing me that a silent personal experience may transform into a voice of many. A synphony - a prayer and a blessing.
    a shower of blessings unfold before my eye and ear and heart everytime I begin to take this work to more that a personal objective. At this time I am in the process of applying for a masters program whereby the focus will move into a more directed inquirey into the message that is being proliferated by psychiatric survivour activists and allies.
    I thank you for your passion and for your message.
    I am honoured to cross paths - and I am moved more that I know how to say.
    There is a fire in me that will not go out.
    I have found my voice through a lens . . . and have connected to an immense heart and soul -

    it is forever a gift - it has uplifted me.

    You are a voice and an inspiration to and of that uplifting force.
    I am wonder-filled.
    Cindy Lou Griffith

  2. I agree, hospice patients should be a part of the dialogue if possible. Too often, well-meaning people (usually professionals in some capacity) take on the mantle of speaking for some particular group. It is nice of them, of course, but not being part of the groups they ae speaking for is a huge handicap in expressing the true perspective of the group. Maybe it is paternal/maternalistic of them. But it is also marginalizing. Couldn't the Times find some hospice patients who could speak up? Couldn't the professionals?

    The more people speak for a target group, the more the groups will be lost and not heard and perhaps worse: not listened to when they do speak.

    A discussion for hospice is long overdue and certainly, there is room for many viewpoints in the discussion. But hospice is still a foreign concept for so many people. Much work needs to be done to raise awareness that Hospices are not "doctors of death" and not just for AIDS patients. (2 of the most common misnomers I have heard)

    I think a good question we all should ask ouselves is "what will become of me if...." What do we want our final days to be like? Do we want to be home or do we want to live in assisted care, congregate living, alone, or with a relative. How can we make sure that will happen? But to ask such questions, we need to first admit and acknowledge our mortlity, something that makes a lot of people very queasy.

    As I commented in an earlier post, I am glad to be the caretaker of my mother in her final days. But you are right, Judi, it is not a bad vs good choice. What workes for me will not work for everyone else. So we must find a way to support a myriad of choices in treating those at end of life with dignity and comfort.

  3. Excellent Judi! There are not many hospice patients who HAVE a voice, so you are perfect for this job. My mom has been in hospice for 6 months, but in final stages of Alzheimer's, she has nothing to say - literally, she can't speak more than a few words and nonsense syllables. Thank you for being such an articulate spokesperson.

  4. Hi,

    I think getting your message out to the larger public is very important. You have so much to teach us about your firsthand experience.

    Let us know how we can help.

    ...another Cindy Lou

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  6. Wonderful post, thank you for sharing your insight. You're truly an inspiration and I think everyone can take a little something from this story.

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