Some say: people want to know when they are dying. Some say: people need to be informed. Some say: doctors should be better prognosticators. Some say: denial is a good thing.
We all have our biases. I have had the awesome privilege of listening and participating in many variations of end of life discussions. I think most everyone I have known have seemed to have an understanding towards the end of their life that time is running out.
My patients have come in all sizes and colors. To name a few: there are the “engineers”, who want to know every last detail, usually with a scientific bent. There are the “emoters”, who need to have a whole lot of sympathetic listening and sometimes enjoy creating a scene for their families. There are the “Peter Pans” or “Pollyannas”, who only want to hear the upbeat side of things, don’t even mention the “D” word (dying) or the “H” word (hospice), please. There are the “Do-overs”, who wallow in their regrets to the very end. There are the “warm stoves”, loving on everyone they touch right through the end of their lives. There are the “prickly pears”, who won’t let anyone near them, suffering in their own scourge of unhappiness. There are the “hermits”. who prefer to find refuge in their thoughts, and often die alone, when everyone steps out of the room.
Some say: you die the way you live.
I made my last visit to Jenny, her own unique self, so pragmatic and determined and also a great denier of the obvious, who had challenged me so often during our time together. Her symptoms were difficult to manage as she tenaciously hung on to life; now she was less and less responsive and mostly nonverbal. At this visit I did some nursing tasks to improve her comfort.
Then I whispered, “You know you won’t be here much longer.”
She looked into my eyes and said, “Let’s not talk about it”.
Oh, so Jenny, I thought. She had asked me, a few weeks before, what it would be like, when she began to “really die”, and how would she manage, and what would I do for her, and would I please tell her when the time came? I try to answer these questions honestly, knowing that some disease processes follow certain patterns at the end of life, and also knowing just like the child who asks where do the babies come from? that the information can be more than what is expected or wanted. I also try very hard to answer what underlying fears I hear in the questions. “Will I be aware; will I suffer; how long will it last?”
Even though she may not have wanted the answer I gave to her question, she quietly held my hand and told me thank you as I left, and she died the next day, without much fanfare, just a few slowed breaths while her family sat vigil.
No one really knows how the end goes, till they get to the other side. I only wish they could come back to share with the rest of us. I do know, and have been reminded by my dear patients, that we only pass this way once; and every day matters…so make it count.
“When I get to the time when I leave this body, I will never say that I lived a half-lived life.” Wayne Dyer
Thank you. I always enjoy your reflections. I hope you are doing well. Pam
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