With Apologies to Dylan Thomas and Nobody Else

Don’t miss this poignant, angry article in last Sunday’s New York Times magazine about an elderly father’s death after years of often useless and unnecessary medical intervention that prolonged his life for too many years.  I read the article on Father’s Day, thinking of my own father, who died a few weeks ago, and my mother, who died more than a decade before.

Like both my parents, the writer’s father had led an active life and he would have hated his last years of life-in-name-only that crept slowly and painfully into death.  Like them, he was caught up in an insane medical system that promotes intervention above quality of life, unthinking action above common sense.

His writer daughter tried to imagine her father’s horror at a prolonged demise that wrecked his wife’s health and squandered tens of thousands of dollars in useless treatments.  His mind had vanished after a stroke and his body had failed, but the sturdy pacemaker a cardiologist strongly urged (and was handsomely rewarded for implanting) ticked on.

I think of my mother, crippled by Parkinson’s, her sharp mind reduced to staring and weeping and screaming, whisked away to a hospital in spite of her do-not-resuscitate order.  That cost God knows how many thousands of dollars and lengthened her life by a few miserable days.  What could my father, her caretaker, have done to object?  Her doctor was insisting and my father had never questioned authority — so off she went.

Similarly, when my father broke his hip after years of dementia, the runaway medical train began revving its loud engines.  “Of course you’ll have his hip operated on,” said the attendants, the social workers, the doctors, the nurses.  “You want him to have quality of life, don’t you?  You want him to walk again, don’t you?”

So, I signed on the goddamned dotted line, feeling confused and guilty and haunted by uncertainty.  I wanted him to have quality of life, I wanted him to walk again — but the fact was, the quality of his life was already a distant memory and he never walked again.  Rehab after a broken hip is difficult enough when a patient is motivated; it’s impossible when he’s non compos mentis.

After that wretched lesson, I got a little smarter and more stubborn.  In the midst of a trip to see my father’s urologist, I told the doctor there was no way he was going to be biopsying what might be bladder cancer, performing surgery, infusing my father with chemotherapy.  For what?  To preserve what kind of life?  Forget it.  Keep him comfortable and pain-free.  That’s all I wanted.

The urologist looked at me with sympathy, bless him, and told me he understood.  But like me, like my parents, like everybody else, he was caught up in this insane, action-oriented American system of medical heroics.  And, don’t forget, he had to cover his own ass for malpractice purposes.  He had to offer the most extreme treatment, never mind the surrounding circumstances.

All of what I’m talking about has been cleverly corralled by right-wing nuts and labeled “death panels.”  No, let’s not talk about the real issue.  Let’s pretend we’re going to live forever, that every breath, no matter how labored and painful, is precious.  What a load of horseshit.

I have to admit I never really understood Dylan Thomas’ injunction to “rage, rage against the dying of the light.”  That’s all we’re doing when we heedlessly prolong a life that’s already over — raging incoherently and causing nothing more than pain.  I don’t worry about the light’s dying nearly as much as I do these automated medical factories.  The light is already extinguished and all you’re feeling is mindless, heartless, soul-searing heat.

(Copyright 2010 by Ruth Pennebaker)

Read about the day I was so desperate I would have kissed Dick Cheney

18 comments… add one
  • Beautiful, Ruth. As I realize that these same situations are not too distant in my future, I hope I can learn from you and others. I hope I can overcome the guilt and pressure to make truly loving decisions.

  • ruthpennebaker Link

    “Truly loving decisions” is a wonderful way to put it, Paula.  With all these varied interest groups, I wonder who’s lobbying for those.

  • Erm. “Truly loving decisions?” Isn’t that what Palin has termed “death panels?”
    Bless you for this, Ruth. It would be nice to think the NYT article has been read by some of those who believe that lying moron and her deliberately wicked slur. But I’m not hopeful. Anyone who’d give her credence is more likely to get their worldview from Faux News.

  • Cindy A Link

    Thank you, Ruth, for being brave enough to say what needs to be said.  A death panel would have been a welcome relief for those in my family who were forced to suffer terrible end-of-life pain just for a few days, a few weeks, of more unbearable pain — and thousands more dollars to the medical system. 

    When someone has a DNR order, it should be illegal to ignore it.

  • That’s what I love about your writing. Your searing honesty. What you write about here is so true, and painful.

  • Cindy D. Link

    I, too, read the NY Times article and was very moved by it.  I have several dear friends who are dealing with Altzheimer’s stricken parents and a medical system that always wants to do more.  I am so grateful to my own mother, who when told she was terminally ill with cancer said, “Thank you very much.”  We went home and had the best 90 days of her life.  She died peacefully in hospice and I am left with nothing but good memories about those last weeks.  It was hard to let her go but it was beautiful to see her pain-free and at peace.  I work as hard as I can to protect my own interests if I should get into such a situation.  For me there are things far worse than dying.

  • Steve Link

    Kay Butler’s story is an excellent piece, as is your blunt description of the notion that we ought to do anything to keep ’em living  (at least “living” in clinical terms).  But at its core, this is a spiritual issue. The doctors and lawyers and politicians create this market and this system in response to our collective spiritual emptiness that leads so many of us to conclude, or at least fear, that our existence is entirely defined by the physical.  The will to live is strong, but when living is believed to be defined exclusively in physical terms, we become desperate to keep the physical alive–whether our parent’s body or our own–at all costs.  It was my father’s spiritual strength–found largely during his last few years of his own decline–that enabled him to let go of his beloved to Alzheimers’ and that enabled him (like Kay Butler’s mom, the religious agnostic who meditated) to say “no” a surgery for which he was not a good candidate.

  • I know you are right, but sometimes it’s hard to know where to draw the line.  My father’s life was painfully prolonged by demands made by my brother, demands that I disagreed with.  But the law says that if one family member wants life prolonging treatment it must be done.  On the other hand, when my mother was 100, had some dementia, and began to fall, hospice was called in without any investigation about what was wrong.  She still recognized all her loved ones and close friends, she still enjoyed going out to lunch and a little shopping, and I know she didn’t want to die.  But she was very old and somewhat senile.  I felt that the medical caretakers considered her not worth bothering with.  I blame myself still for not making more of an effort.

  • I agree with you. Sometimes I think that it becomes a slippery slope and it is hard to have a moment of clarity – as you did after the hip surgery. For many families they just don’t know where to stop and there is no one to help them. A doctor helped my mother reach that point with my grandfather and she was very grateful. Until then she did not understand that he just was not going to recover.

  • Winston Link

    I applaud your well- stated position on this subject.
    The search for the fabled “Fountain of Youth” has somehow blurred into a search for the “Miracle of Just Remaining Alive” as touted by the Health Care Industry.
    When death looms on the horizon, freedom from its pain and a continuation of dignity are the only sensible priorities.  Those priorities don’t enrich the Health Care Industry and are therefore unpopular.
    I fear being trapped in the machinations of “heroic” care more than I could ever fear death.

  • Paula E. Link

    I could have written (or wanted to, if I had your talent) the part about your father’s hip situation. The same thing happened to my dad, although he had enough mental abilities left to try to cooperate with rehab after surgery. He was just too weak and ultimately too exhausted to really work at the physical therapy, and he never really walked again. Instead of dying in his bed in our home, he passed away, alone, in the nursing home early one morning.  I will always feel guilty about that, even though it would have been very tough on him and us if we’d tried to have him live in our house again after he was bed-ridden.
    There are no easy answers for these end-of-life questions. We just do the best we can, and sometimes we get some real help from medical professionals.  My dad’s internist specialized in geriatric medicine, and always looked at the whole picture before recommending treatment.  Surgery for the broken hip seemed like the most humane course, given the pain Dad would have been in without it, and at that point he did agree to the surgery himself. But the long months in the rehab center/nursing home took a toll on his mental abilities and, I’m sure, hastened his death. There was probably no “better” decision at the time, and I’m slowly learning to stop beating myself up over all of this.

  • I’m commenting before reading the linked article, which is probably wrong, but I have to anyway. I am so very grateful to my father – he was an ornery cussed Texan, and he probably hastened his own demise because he refused to go to the doctor when he contracted pneumonia at the age of 78 in 2002 – he was otherwise pretty healthy.  He didn’t go to the hospital until he was damn sick, and when he got there he had an episode of respiratory arrest that put him in a bad way, that soon deteriorated into senselessness.  But the reason I am grateful to him, is that I truly and honestly believe that he willed himself to pass away, two weeks later, after all his children had assembled and seen him and spent time with his senseless shell in the ICU. It would have been the most horrible thing in the world for my mother if he had lingered in a state of half-life for months or years. It was horrible enough for her – she spent the next 8 years becoming a feral recluse in her grief. But it would have been so much worse for her had he been there, but not there.
    For the past two years, she’s been living in an assisted living facility and visited by my brothers every day. She has returned to humanity. She’s and ornery Texan too, of course.  But at least she’s returned to the land of the living.
    She’s 85, and I can’t help but worry how it will be for her. But at least she will be happy to join Dad.

  • Amazing post. What it comes down to for me is defining “life”. Breathing and excreting are not enough to qualify. Once the “me-ness” of me has gone, you’d just be keeping the shell alive.

  • So powerful!! We learned this lesson with my dad.  He had a stroke at 97. I was at the office so my husband called 911.  The medics rushed in as I arrived back home and tried to revive my dead father.  How stupid was that?  I could feel his soul in the room, observing the commotion.  They worked frantically to no avail.  He was not in his body anymore. I noticed this when I kissed him on the cheek. And he did not return to life, despite the medics’ efforts.    With my mom, we knew not to call 911.  The extreme elderly should be allowed to die in peace, when their time comes.

  • My mom has a pacemaker, and we’ve talked at length as a family about there possibly coming a time when we ask them to turn it off. Add to that the fact that her most recent diagnosis means a possible feeding tube is in our future. For me, the issue about putting one in … is really about taking one out, and that’s a horrible decision, essentially to let your mom starve to death.
    That’s a discussion we’ve yet to have with her, but we’re trying to ask HER wishes now (while we can).

  • So. So. So true. And some of these decisions are tough to make. It would be great if we could get past this fear of death and talk about it openly. Like there could even be some sort of “is it time to die” expert at hospitals that patients could consult.

  • Beautiful, Ruth. Unfortunately, when are loved ones are ailing and hurting, we seem to let common sense fly out the window and accept a doctor’s advice to prevent death at all costs. I hope that when I’m in such a position I’ll have enough strength to stop and pay attention and do what’s right, not just what the doctor orders.

  • Wow, such a passionate topic. My grandmother has been hanging on by a thread for almost a decade now, and it’s heartbreaking. Really, it’s a tough decision to make – and one that I’m not looking forward to when the time comes for my parents.

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