MDs are trained to aggressively fight to maintain life, regardless of prognosis, and are sometimes not very good at discussing palliative care or end of life issues. According to a recent article I read in the New Yorker, MDs are careful about how much pain meds they prescribe because they worry about law suits. This is not an issue in hospice. Hospice is concerned about comfort of the patient which includes pain management and presence of friends and family. It has been difficult to see Bill recently because it is so wrenching to see someone I love in so much pain. It seems his pain could be managed better. Everything I have heard from people who have had experiences with hospice has been very positive. Bill and I had a colleague at Pomona, Bill Whedbee, who died of cancer and spent time in hospice. The partner of another colleague also died of cancer and spent time in hospice. In both cases, their significant others told me that hospice worked wonders in terms of mitigating pain and developing ways to increase comfort. We know systemic scleroderma is an unforgiving disease that people do not recover from. Distressing as it is, we do need to think about how Bill’s life will end. Abigail said it so well when she drew the picture of Bill dying in ICU surrounded by strangers trying to bring him back. There is an alternative scenario which seems more peaceful.
I urge you to read the New Yorker article on hospice: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande
Debby
Debby, Thank you!
ReplyDeleteAbigail just reported (Saturday afternoon) that Bill is out of the ICU, back on the 7th floor, and is chatting and comfortable. Such a roller coaster. I think it is time to talk to one of the social workers on Monday about hospice options and about talking to Bill about hospice. Arlene
We're learning that hospice means no dialysis and no stomach tube. Is he ready for this? Is the family ready for this? He would be gone in a few days.
ReplyDeleteArlene