Death Lore

June 20, 2011

For hundreds of years Christians prayed for a good death.  A good death was as much worth asking for as something to eat and your cow not falling in a ditch.  Not all deaths are good.  As a Medieval European (my ancestors were) you would have seen a lot of deaths, you would have known this without thinking about it.  We all get one.  I want a good one, you’d say, like hers, not a bad one, like his.

Depending on where you lived this changed some time in the 19th or early 20th centuries.  If the afterlife was supposed to be All That (so the reasoning went) one’s own death ought not to matter so very much.  Downplaying a sentiment so crude as ownership when faced with death could only be seen as a vote of confidence in the kindly (we hope we hope we hope) universe.  It was nothing new to believe the afterlife must be pretty damn great, but it was new to feel the burden of making the Better Place exist through sheer force of combined assertion.  Once upon a time, life was life, the afterlife was the afterlife, and the thing that got you from one to the other was a momentous occasion.  No longer.

Dying became “passing on.”  A passage manages to be neither an object nor a discrete event.  Instead of approaching a door that must be opened and shut, we might push aside a veil as we wandered down the hall from one state to a more exalted–or, if we didn’t believe in God or the afterlife, moseyed into poetic oblivion. When I am dead my dearest . . .  This must have required a lot of denial (strength of will?) in an era when we were still dying visibly, in pain, and often.  Yet even as a sunny boosterism took over the public side of death, all the lore pertaining old fashioned private dying stayed in place.  The home deathbed.  The laying out.  The wake.  The funeral procession.

The lore faded more slowly than the boosterism.  I think this is because even the most lugubrious 19th century notions of “passing” still acknowledge that death was about the person who was dying.  Now our jargon lulls us with intransitive end of life issues: managing care, preparing for the end, letting go, saying goodbye.  For all the rest–everything physical and specific–we are supposed to look to the experts in the appropriate institutions.  Our ignorance and incompetence is assumed in every detail of the way these institutions are set up to work.  We are required to be confused.  To trust.  To remain passive, both those of us who die and those who bear witness to death.  If we meet these requirements and the institutions are working properly, what is our reward?  The conveyor will hurl us along until it is all over: a successfully negotiated non-event.

In my grandmother’s case the institutions failed.  She had broken her right shoulder; it was set with three metal pins.  She was sent to a rehabilitation center to recover.  I made a trip to visit her there and traveled home again uneasy without knowing why.  A week after my visit I found out she had been moved to the hospital.  At the hospital I gradually pieced together most of what had happened: while at the rehabilitation center receiving physical therapy, the metal pins in her shoulder had been slowly working their way out through her flesh and skin.  The changing of the wounds went unremarked by her caregivers.  She contracted an infection and suffered spinal compression fractures. When taken to the hospital, she was mistakenly admitted to the cardiac ward rather than ICU.  According to hospital policy it was not possible for her to be moved into ICU after having first been admitted to cardiac.  Her shoulder could not be reset nor the protruding pins removed because anesthetic was contraindicated due to her COPD.  Pain medication was also contraindicated.  Because of her infection, her lungs had been filling.  She would not speak.

As soon as we arrived at the hospital my husband and I began trying make up for what we quickly recognized as the climax of a massive institutional failure.  This is like trying to drive a horse from inside its belly.  Here is the only example I can bear to recount: nearly every new nurse, technician, and doctor who came into my grandmother’s room–automatically assuming she was a cardiac patient–went to lift her up from her bed by her unset broken shoulder with its open wounds and protruding pins–and in fact did lift her by it, if one of us was not there to jump up and prevent them.  For three days my husband and I were the only companions of her suffering.  We were the only ones to learn the language of her pain.  Her professional caregivers did not learn this language, and did their best to make us powerless to act in even the smallest ways on our knowledge of it.

A language can be learned, even a language of groans and desperate postures.  But lore must be passed down.  As my grandmother died I understood that there are ritual responses to mortal suffering–gestures that create succor where there can be no relief.  I did not know the responses because I had never been shown them, but my body knew they existed.  All along it was a physical event for me, too.  When I left her dead body I felt myself reaching out with phantom limbs to the mirrors that should have been covered, the clocks that should have been stopped.  We have lost the lore for dying.  When we need it, we can only try our best to make it up on the spot.

There is no question in my mind that there are good deaths and bad ones or that it matters what kind you have.  It mattered to my grandmother.  She wanted a better death.  The entire time she was dying she fought, with all her strength, to remove the painful pressurized-air breathing apparatus she had been forced to wear because it was admitted by the “soft” interpretation of her advance directive that her out-of-state nephew had approved.  Literally, physically, she struggled for the death she wanted, not the one she got.  It was a bad death.

9 Responses to “Death Lore”

  1. zibilee said

    Oh gosh! Your grandmother’s experience must have been horrible for her, and for you guys too! It’s seriously inexcusable that she was left to die in that condition, and for that matter, that all that even went down that way. I can understand why you are having such a hard time with this, as there is really no reason why this should have happened. Have you guys thought about filing a lawsuit for wrongful death? I know a lot of people are sue-happy, and I am not necessarily one of them, but there have to be some repercussions and there has to be some way for you and your family to get closure for this awful event. I can totally sympathize with her wanting a good death. I want one myself. You are in my thoughts.

  2. Jenny said

    Again, trapunto, I am so sorry for all that your family went through. I’m glad you were there for her — my mother is always saying that you are sunk if you are in hospital without someone to advocate for you. *hug*

  3. Jeanne said

    That was indeed a bad death. I’m sorry.
    I learned some of what you have learned about death when an elderly great-aunt had an aortic aneurysm in the emergency room of a hospital and afterwards told me that she wished it had been somewhere else, because anywhere else, she would certainly have died.
    We need to do something about end of life issues in this country. It strikes me as more and more of a disconnect that we talk about relieving the pain of an elderly pet by “putting it to sleep” but we put someone like Kevorkian in jail for doing the same thing for consenting humans.
    Part of the problem, I realized after my knee replacement, is that there aren’t enough nurses these days. They’re the only ones who have any time for the human element, and they’re so often horribly overworked. I will give almost anything to stay out of a hospital now. A good death would be a death at home. How many people are allowed that anymore?

  4. Nymeth said

    I’m so very, very sorry, Trapunto. *hugs* And I agree with Jeanne completely. How many people get to die at home anymore? My grandfather (the only one of my grandparents I ever really got to know) was institutionalised for the final week of his life for no particular medical reason, but simply because nobody knew what else to do. I don’t blame any of his children for their helplessness before death – it is, as you say, required of us in this day and age – but all along it was clear even to them that being in a strange place, away from the house where he spend most of his adult life and from the objects that had always surrounded him was not how he wanted to end his life. We have lost something. It shouldn’t have to happen like this almost by default.

  5. I started writing a long comment, then made it a blog post instead, which is for the best, because I guess it probably wasn’t relevant. When people talk about death, they always talk about wanting to die with dignity, or without pain. I think these are pieces, I think people simply want to die tidily. That makes it sound petty – I don’t think it is. I think that people want their deaths to be a period on their life – in the modern world, we have learned to produce semicolons, hyphens, long, long pauses, but I think we’ve forgotten the period, and I’m sorry you couldn’t get yours with your grandmother.

  6. bookgazing said

    Listening to a friend in the medical profession it’s crazy how quickly the disconnect between human relationship and patient relationship comes. It has to come because otherwise the small amount of medical professionals could never do all the jobs they need to do, but it does seem something is lost in the mix – that element of involvement from someone who knows the person and is in a place to respond to the person with a knowledge of medical practicalities, but a focus on the person. Informed patient advocates maybe. It sounds like you did all you could, it’s just a shame the hospital got so messed up.

  7. What an appalling mess. I’m so sorry. It contrasts so strongly with the astounding kindness my father’s professional care-givers showed him (and us) all through the long final months of his life. It also makes me so grateful that we had him at home when he died. The night nurse (whose one and only night with us happened to be the night he died) was such a living example of every other care giver he had had. She stayed beyond her hours so she could be with us at the end, then helped me wash my father and lay him out and dress him and prepare the room for visitors (cutting flowers from the garden, laying cushions on chairs) It was intimate and warm and conclusive. Staff from the cancer unit in Dad’s hospital came to his funeral. I’m so grateful for all that and I wish your experience had been the same.
    (I think it’s worth noting that my father was a medical card holder – this means all this care and kindness was given him by staff in the overworked and underfunded public health care system in Ireland)

  8. daphne said

    This is awful. I am so sorry to hear about this. Sometimes the failures of our medical system (and the people who work within it) are appalling. I am so sorry for your grandmother, and for you and your husband who witnessed it. But know that you did a good thing, being there and helping as you could. Still, how your heart must ache. Hugs.

  9. Care said

    I am so sorry. This is an important post and I hope it helped comfort you to share it. We do need to be better with confronting, considering and being open to options FOR death not just the clumsy attempts to stop it. We seem to shut our minds to the wrong ‘important’ issues.

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