I use the words "death" and "dying" so often that I sometimes forget that the majority of my life's work is focused on avoiding such things. In a geriatric population like mine, end of life issues are a part of everyday practice. Lately, however, there seems to be a rent in the fabric of my reality.
Where previously these conversations were nurturing and beneficial, recently they've turned quite negative. As hospice and palliative care are moving forward at a breakneck pace nationally, on the ground, there's more resistance than ever.
I'm finding that my relationships with patients and colleagues are souring around such issues. No one wants to acknowledge the elephant in the room.
Or is it just me?
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I really hated you that day!
I see the anger migrate through her face as Agnes looks at her elderly parent. Her eyes soften when she walks over to the bed and gently combs her fingers through her mother's hair.
She is referring to when I told her that the dementia had progressed and that death was near. The evidence was incontrovertible. Her mother hadn't spoken in weeks. She wasn't eating and her weight had dropped significantly. Now her breaths were prolonged and erratic.
But the neurologist said she could live for years!
Tears drop slowly from Agnes's eyes and cling to her cheeks to avoid the perilous pull of gravity. I can see the question in her posture before her lips part to vocalize. I interrupt her softly.
A feeding tube would provide more harm then good.
Agnes stops mid sentence and her head bobs down toward the floor. Could I tell her that I don't agree with her neurologist? Should I explain that his reputation is to flog his patients well past the point of no return?
Maybe we should call the neurologist again. He says we should put in a feeding tube.
The same neurologist crucified me on the phone the week before for signing the DNR order.
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Eventually Agnes sent her mother to the hospital for a feeding tube against my objections.
A few days later it fell out.
When her mother's heart eventually stopped, an ambulance was called.
CPR was performed to no avail.
It's not just you.
ReplyDeleteSomething is wrong in the dominant culture. Some of our doctors and hospitals have started to believe their own marketing, imagining that all deaths can be prevented.
Death is not the enemy.
I'm only 65, with forebears who typically lived to be 85-99, but already I'm noticing that some situations won't be 'worth living' in, for me. I hope nobody decides that I need a feeding tube when I can't communicate for myself. I hope nobody decides to do CPR if I manage to die in my sleep.
This is NOT, by the way, to say that I would choose death over disability. But: cognitive decline to the point of inability to communicate? plus physical pain? followed by invasive (and fundamentally useless) procedures? Not. Not for me, no way.
Thanks for standing up for our rights to be allowed to die when it's time.
And this is why I have my papers in order.
ReplyDeleteI want my family to be able to let me go when it's time. Some just do not know when to let go. They feel they have to do absolutely everything in their power or they can't live with themselves - when doing that, may not be the wisest or most humane thing to do.
I've chosen my appointed person carefully, and I have written down my own wishes. Everyone should do this ahead of time.