Thread by @drkathrynmannix

@thetestlabsio I tried to respond to your question with a thread of 10 tweets, but somehow they seems to have become jumbled. I'm re-posting below: slightly generic answers, because so many people ask exactly what you are wondering, and I hope it might help them, too.
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I wish someone could have explained her dying to you as it was happening. This might help:
1. Most people move into deeper unconsciousness as the process of dying proceeds.
2. To begin with, they are simply tired & need more sleep, dozing between short periods of being awake.
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3. Gradually, they lose consciousness, initially only for short periods during sleep. They report 'good sleep.' We don't know when we are unconscious.
4. When the brain is unconscious it reverts to automatic breathing cycles: alternating deep/shallow, fast/slow, in cycles.
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5. Unconsciousness removes awareness of the throat: people may breathe through tight vocal cords, making a noise when breathing out.
It's important their loved ones can be helped to see that this isn't groaning, sighing, attempting to talk. It indicates loss of consciousness.
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6. Deeply unconscious people may breathe through saliva/phlegm/liquids lying at the back of their throat. Air bubbling through makes a rattling noise.
The person doesn't gag, swallow or try to clear their throat- they are unaware.
The noise can cause great concern to families.
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7. Because most people haven't seen 'ordinary dying' before, they don't know that these noises & breathing patterns are signs of unconsciousness. They worry their beloved is suffering.
We need wise companions at end of life who can narrate the process to help us understand.
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8. Hearing is a mystery. 'Unconscious' should mean no consciousness of the world. Yet we know from ICUs that some unconscious people who later recover can recall voices of visitors.
I've seen interesting responses to sounds at end of life:
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Experience of hearing while dying?
I've observed deeply unconscious people synchronise their breathing with music in the room; become less restless when the 'right voices' are present; relax when familiar lullabies are sung (adults or children).
We can't know for sure.
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9. Because we don't know, we rely on experience.
We advise families to talk, soothe, sing, play music, tell news.
Some people wait for permission to die.
Some take their last breath when they are alone.
Some wait for important news.
Families need to know all these things.
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10. Suffering, of course, isn't just about physical symptoms. Perhaps the greatest suffering is saying goodbye when love is deep & strong.
I have spent a career learning at deathbeds. I suspect we'll never know all the answers.
But I know we need to get better at explaining.
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11. Understanding, recognising, accompanying & narrating 'ordinary dying' is an essential part of community wisdom. It's broader than healthcare, although #MedEd & #NurseEd should certainly include it.
We need this wisdom to walk each other home.
#hpm @WeEOLC @DyingMatters
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