Issues raised include the following:
- Whether people have a right to "write their ending" - for instance, should people get to choose whether they die at home or in a hospice or a hospital? Or choose how much life-sustaining procedures they receive, especially when death is expected within hours or days?
- There can sometimes be a delicate dance among patient, family members, and care teams when balancing the requests of the dying patient with the emotional needs of the family, or the belief systems of family/patient/care teams. For instance, what if the dying patient had a long-standing belief that they don't want to receive extreme measures of life support- but the adult children of the patient remember the strong, resilient parent who would have "fought against anything?" What if the dying patient is in extreme pain and they are ready to accept the inevitability of their death, but the family want more time with him/her? Whose wishes should the care team honor?
-How excruciatingly difficult it can be for family & care teams to witness and acknowledge the suffering of the patient/loved one.
- Some members of care teams talked about what an honor & privilege it is to help patients pass away while they are in their own home, instead of a hospital setting.
- Poignant lines from the Sophocles readings include a statement by the son of a dying man, who said, "I am pained by your pain." This line was referred to frequently during the post-reading discussion.
- Another poignant line referred to the dying person's wish to be "seen" by their loved ones - a deep desire for recognition & acknowledgement.
- How some people in chronic or overwhelming pain refer to their pain in the 3rd person. The pain might be spoken of as "she" or "it" and sometimes the pain seems more than the person, as in "There is no more me, only it," referring to how the dying person no longer feels autonomous and is taken over by the pain.
- Some care team members discussed patients who ask for euthanasia treatments and whether they are denying themselves the 'gift' of self-discovery by consciously experiencing their dying process. What do you think?
- We briefly discussed how these complex end-of-life decisions can be further complicated by patients who are suffering from dementia and may be unable to understand what is happening to them.
Posts
I was unable to attend. Thank you for this excellent summary. It must have been very moving to be present to experience this.
ReplyDeleteKathy
Christine was on the panel for the post-reading discussion. She made a point that really resonated with me. I think she used the word "messy" or "complicated" or something to that effect to refer to the dynamics that sometimes unfold during the death of a loved one; I think she was referring to how the complexity of family relations isn't put on hold just because a loved one is passing away. It seems so obvious, but I think the audience had sortof forgotten about that aspect. We had been talking about supporting the legacy of a dying person and the importance of empowering them to "write their own ending." And certainly that is worthy. But it's still within the context of the family's dynamics. For instance, one person talked about how his brother was dying and his brother really wanted to pass away in his childhood bedroom. But he know that the mother would have been traumatized and stated she'd never go in that room again. He wanted to protect his mother from future pain, even if that meant denying her brother's wish. The story was complicated by the brother's longterm history of drug addiction. I think Christine's point really helped the audience remember that nothing is straightforward, and as soon as a guideline is established (e.g. "help the loved one write their ending"), other pressing dynamics may also need to be considered.
ReplyDeleteAlso, one of the hospice workers as well as one of the MDs both talked about the importance of caregivers having a robust support network. When I worked very difficult cases for survivors of sexual assault, I too found that my personal recovery from the events was directly correlated to the support I had from my community. Makes me so grateful for the caring network we all have developed at the CEC.
Very nice summary, Lori--thanks for the kind words. The dramatic readings of Philoctetes and Women of Trachis--ancient Greek plays by Sophocles--gave me goosebumps, especially the parts by Charles Dutton who is a very impressive actor. He played "Roc" in the show by that name on Fox TV.
ReplyDeleteI wonder what you think about possibly arranging to do this on one of the evenings of the Harvard Bioethics Course this year?
Christine
What a great idea (to have the readings during the bioethics course this year)!
ReplyDelete