1820 hrs. -- This visit is going poorly. Raymond C. is very close to death and his wife, daughter and son-in-law are completely freaking out. The tension and edginess in this house are palpable and I just can't seem to give this family whatever it is they need.
"You know he's sufffering and he doesn't deserve this! No one should have to die this way!", blurts Bob, the son-in-law. Bob's wife, Marcy, is up and pacing, wringing her hands and making little whimpery noises. Mrs. C. is sitting at the dining room table and giving me the cold stare of doom.
Too Noisy"Please, Bob", I say, "I've sat with Ray twice now and I truly feel that he's not suffering." It's true... Mr. C. is quite peaceful. Semi-comatose, no restlessness, no grimacing, not even a "rattle". Only a rare, unintelligible, soft vocalization. Maybe that's what's got them in a tizzy. Maybe they're interpreting any noise he makes as an expression of agony. One thing I feel sure of... Raymond isn't suffering. It's his family that's in torment.
Too MessyCalmly, gently I explain my position on Mr. C's comfort in detail and attempt to assure the family that they are providing excellent care for Ray. I end by saying:
"Please, everyone...I truly feel that your suffering far exceeds anything that Ray may be going through. What can I do to help you through this difficult time?"
Hissing, nearly spitting the words through his clenched teeth, Bob responds immediately:
"I want this over with now! You, you stop it! He doesn't deserve this!"
Just Right?Jesus, Buddha, saints and angels... I've run into this sort of "request" before, but have never heard it expressed so blatantly. How dare you think of me in this way? What were once sincere offerings of compassion are quickly turning into feelings of contempt.
To be continued...
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5 comments:
What a horribly selfish attitude.
More, woman!
I've only encountered this kind of thing twice before. So far, it's never had to do with the suffering of the patient. Very disturbing.
So whaddya say? Or whaddya DO? don't leave us on tenterhooks!
@ jerseyRN...
Not to worry, Part 2 will be forthcoming. And I must say that I'm quite impressed with your revival of the term "tenterhooks". Well done!
My DEAR Dethmama,
Surprise! Thank you for the heads up about Palliative Care Grand Rounds. I've been ignoring my computer in fits and starts, so I didn't open your email until day before yesterday, but I'm glad I did...not just because I was included in this first round, but because you are!
Interesting post, here. Having recently been through what this family went through, I have a perspective, although it's not about euthanasia. I'm not sure where I stand on that and am thankful that I didn't have to confront a request for it from my mother nor the possibility of wondering whether I wished we lived in Oregon when she died (Do they still allow that, there?)
Anyway, one of the things I learned from my mother's death, which surprised me, although it made a great deal of sense, is that despite the fact that my mother was not in pain during her last hours of life, was well and appropriately cared for and all ducks that could possibly be in a row were, she continued to insist that she wasn't comfortable. Looking back, I think I know why. Death is something we do only once. Even those who "die" and and are "brought back to life" obviously didn't die, really. I remember, a few hours before she died, my mother saying that something wasn't right. No matter what I did, or didn't do, she continued to insist that what she was going through was something she'd never experienced and it wasn't "comfortable". Well, you know, of course it wasn't. She'd never died, this was a new experience. We are ALL uncomfortable, sometimes less, sometimes more, with new experiences. For all the medical and spiritual explanations we have for what happens and what it may or may not feel like, none of us who are still alive really knows.
I think the best that can be done for people who are voicing and/or displaying this level of discomfort (I wish we had a different word for it) is to acknowledge it, acknowledge that, barring suggestions from the dying one, there isn't anything that can be done and accompany the dying one, sympathetically, through the process.
Although I didn't freak when my mother copped to the discomfort of doing something that was completely outside her experience, I can certainly understand families who do. Frankly, I suspect that some of my relatives might have freaked in exactly the same way as this family had they been present at my mother's bedside when she died.
The most helpful post-Mom's-death-experience I had was when I told the Hospice RN who arrived after Mom died that despite everything, Mom was uncomfortable...not in any manner that suggested there was care she could have received that was overlooked, but because she wasn't sure what was happening and, at any rate, she WAS sure, whatever was happening, that she couldn't possibly be dying; she was, in her mind, after all, immortal.
The Hospice RN nodded and smiled, very sympathetically. It was clear to her, I'm sure, that my mother's discomfort hadn't disturbed me and that it was just part of the experience; like being a little (to a lot) nervous and uncomfortable before one takes one's first roller coaster ride.
I'm sure of a couple of things:
1. Not all dying people experience this discomfort.
2. If one does, there isn't much that can be done about it, except to assure the dying one that you're there, you're listening, and you're doing everything you can to address every issue that can be addressed.
3. In all the literature I've read about the experience of dying, I've never read anything that addresses the possibility of the dying one experiencing this pre-death discomfort (maybe I just haven't read enough). I'd love to see more acknowledgment of it. Because I was so tuned to my mother and so in-the-moment with her, it didn't throw me. I just accepted that it was happening and accepted the limits of the living to address the (occasional, I admit; I'm sure that not all of the dying experience this) uncomfortable surprise of dying. It didn't, really, throw my mother, either...but, it was my mother's character not to be thrown by anything.
Frankly, it doesn't sound to me like Ray was experiencing the discomfort my mother was, but, clearly, his family thought he was. Kudos to you for acknowledging to the family that your chief concern was no longer Ray but their reactions to Ray's death process. For all our observations, measures and anecdotes, we can never really know what the dying one is experiencing, until we die. Maybe a global acknowledgment of this, within Hospice, would make it easier on those witnessing a death who might have a tendency to freak. Then again...
Good to be reading you, again!
--Gail
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