http://www.pbs.org/wgbh/pages/frontline/facing-death/
This documentary highlights some of the trade-offs inherent in high-tech, modern medicine. I thought it was extraordinary that several patients and their families permitted such a personal look at their journeys through serious illness.
As a hospice and palliative medicine physician, I was surprised that symptom relief, comfort care, and hospice weren't dealt with at all. Hospice was mentioned once -- unskillfully, I thought -- by one doctor talking with one family. And I cringed when she said that "doing nothing" was an option. For the record, hospice care isn't doing nothing. It's substituting one goal of care for another. I frequently have hospice patients receiving multiple medications to relieve their pain and other symptoms while our entire team works to assure emotional and spiritual needs are attended to. That's not nothing. That's a whole lot of something -- something that all of us need when we are facing death.
thank you for this blog. i lost my father (63) two weeks ago yesterday to complications from stroke/brain bleed. we moved him to hospice following six weeks in the ICU - he recovered from first bleed..but then had swelling and had bone flap surgery...he recovered from that and was talking through a trach..and then starting showing signs of hydrocephelus...so they did a shunt..and he began recovery again and we were looking to move him to sub acute care...but he had another bleed - this one "devastating" according to doctor..which then affirmed for us we should go the hospice route. hospice was so wonderful and comfortable..but i feel it was for us...and not for my poor dad who had slipped into a semi-coma by the time we transferred him..im so scared his final conscious moment was the hospital...i didnt speak to him about anything serious until the pallative doc advised me bc i was afraid i'd upset him...but she let me know that a conversation like that would actually comfort him...
ReplyDeletein your experience/opinion, do you think my dad heard/felt our touch and voices following his bleed? when he was in a semi coma at hospice? i sometimes think loved ones are told they do to comfort us and not because they beleive it. is that the case?
my dad was in hospice for 8 days which was far longer than doc had thought...i had heard that some patients "hang on" bc they dont think their family members are ready...and i worry we pressured my dad...
i love my dad - he is my hero...and i don't say that in his passing..i adored him and everyone knew it..im afraid he had a rough few final weeks and although we finally made the courageous decison of hospice, it didn't reward him??
this blog is so amazing and i think educating about hospice is so incredibly important so thank you for all that you do and share. it's so admirable.
I'm so sorry for your loss. Your father was a young man, and I can see that you loved him greatly and will miss him terribly.
ReplyDeleteHere's what I think about whether your dad felt or heard your touch and voices: We have pretty good reason to believe that hearing is the last sense to go. I always encourage the families of my patients to say what they are feeling in their hearts. Even if he couldn't hear the words and understand them as words, I have to believe that your father on some level registered the feelings behind the words. True, that's a matter of faith and not a scientific statement. But I feel that those of us who work with the dying would be lost without faith in something, and I hope you'll have faith that your dad felt your presence and your love.
You showed great courage in allowing your father to pass away with comfort and dignity. In a post last March, I quoted the author Francine Russo who wrote, “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.” It sounds like your dad was comfortable at the end. Who could ask for anything more?
Finally, I appreciate your nice comments about this blog. Please pass the word about it and about hospice in general.
I am looking forward to following this blog and following you on twitter. I am an American expat living in Germany who has just completed a ten-month course for voluntary companions of the dying, especially those without friends or family to be with them. I will be especially interested in the language of hospice and palliative care in the United States as my own experience in these fields have been and will be in German. For now I can tell you that much of what you write was also said in our prepatory seminars here. My website is not up and running yet.
ReplyDeleteAs you may know, in the US all hospices must have active volunteer programs. Should you return, you surely would be welcomed at hospices serving your community.
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