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𝐹𝑖𝑒𝑙𝑑 π‘π‘œπ‘‘π‘’π‘  πΉπ‘Ÿπ‘œπ‘š π‘Ž πΉπ‘Žπ‘™π‘™π‘’π‘› π‘†π‘˜π‘¦'s avatar

Hi Karen,

Thank you for sharing Ann Marie's story. It's so devastatingly and powerfully told.

I was completely struck by that one, awful moment. The nurse asks, "Do you want us to resuscitate him?" and Ann Marie's stunned thought is: "But didn’t I already decide this?? Do I have to answer again now??”

It’s this heartbreaking moment where the "official" document, the DNR, completely fails to protect her from the brutal, emotional reality of the moment. It's the gap between the protocol and the pain.

My novel, "What Was Here," is obsessed with that exact gap.

It's about a child in a Gaza camp who, to cope, builds his own bureaucracyβ€”a 'Ministry' with logbooks, "protocols," and a "seal". He desperately wants his protocols to be real, to be stronger than the chaos. He logs a death as "Status: Pending. Location: Under review" or misspells a name "forever" because the seal has been applied.

Ann Marie's story is the devastating, real-world truth of what happens when those systems we build to protect us just... fail... in the face of life and death.

Since your post explores this so beautifully, I thought the story might resonate. You can read it here: https://silentwitnessin.substack.com/p/what-was-here?r=6r3orq

Thank you for this powerful interview.

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Karen Lutfey Spencer PhD's avatar

Thank you for sharing this β€”I definitely see the parallels. Systems can be so harsh.

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𝐹𝑖𝑒𝑙𝑑 π‘π‘œπ‘‘π‘’π‘  πΉπ‘Ÿπ‘œπ‘š π‘Ž πΉπ‘Žπ‘™π‘™π‘’π‘› π‘†π‘˜π‘¦'s avatar

Hi Karen, thank you so much for reading and for this comment. I'm so glad the parallels resonated. That core idea of "harsh systems" is exactly what I was trying to explore. Really appreciate you taking the time to engage with it.

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Ellen Koebel's avatar

This really resonated with me. I work in Home Health and I’ve been alone with a patient in their home when they went into cardiac arrest and because unresponsive. I called 911, the paramedics arrived within minutes and started to fly into action. That’s when I found his signed DNR on the fridge and yelled β€œWait!” Everything stopped. We followed his wishes and he passed away. It was an emotional moment, but I’ve always been so grateful to him that he had his wishes so clearly posted. Thanks for writing about this. These conversations are so important.

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Karen Lutfey Spencer PhD's avatar

Wow. That is a great story of how posted those advance directives can make all the difference. It’s so good you were there to break up that treatment momentum!

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Allison Ray Benavides, LCSW's avatar

Oh man, Kevin! On Father’s Day even! One of my top questions for God: β€œWhat is up w death and dates?”

Thank you for sharing such an intimately, strange moment, and incomprehensible decision. Resuscitation is so important to discuss. So many misunderstandings. So much grace in your retelling.

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Karen Lutfey Spencer PhD's avatar

Thank you! I will share this with Ann Marie. ❀️ I thought the same about Father’s Day!

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Christopher AF   πŸŒ€'s avatar

Am I correct in that you are a strong supporter of death autonomy and the medical practice respecting this and communicating in a respectful way with those about to grieve ? Do any American states have the equivalent of CDN MAID ? (Medical Assistance in Dying) And I understand it is a completely different notion to the DNR but often has the same "wait. are you sure? no no you can't mean that, let me intervene legally" kinda vibe. By the by, The current episode of The Mental Illness Happy Hour has a couple that discuss an aspect of this, how life might have been different if the husband had simply died... (I acknowledge I am a muddy thinker :) )

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Karen Lutfey Spencer PhD's avatar

Good questions! Currently, 10 US states have legalized Medical Aid in Dying (MAID), and about 17 more are considering it. More info here: https://deathwithdignity.org/states/

MAID is different from a DNR and other advance directives in that it allows a mentally competent, terminally ill adult to end their suffering by self-administering a prescription medication to die peacefully. A DNR, like the one in Ann Marie's story, is a medical document instructing healthcare providers to not perform CPR on a person.

I think you're right in that both MAID and DNRs allow patients to curb treatment if that is what they want. Both also have checks built in, like we see with Ann Marie, to double-check that someone still wants to proceed with their plan.

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Rick Adam's avatar

After 21 years of trying to convince doctors that Short Bowel Syndrome and the loss of 2/3 rds. of my intestines from unfabled GMO foods is serious as they contain a leptin common to insecticides that kill the tissue lining their gut and do that to humans as well.

That nutrition loss leads to peer memory and decreased cognition exactly the same many seniors demonstrate. And most likely for the same reasons. The stores on nutrients begin to run too low.

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Rick Adam's avatar

Poor memory and cognitive abilities.

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Karen Lutfey Spencer PhD's avatar

Sorry you've been going through that!

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