Saying No To A Prolonged And Possibly Painful And Gruesome Death
Katy Butler writes in the WSJ that her mother died shortly before her 85th birthday, sleeping in her own bed until the night before the end came:
She was lucid and conscious to the end. She avoided what most fear and many ultimately suffer: dying mute, unconscious and "plugged into machines" in intensive care; or feeling the electric jolt of a cardiac defibrillator during a futile cardiopulmonary resuscitation; or dying demented in a nursing home. She died well because she was willing to die too soon rather than too late....Why don't we die the way we say we want to die? In part because we say we want good deaths but act as if we won't die at all. In part because advanced lifesaving technologies have erased the once-bright line between saving a life and prolonging a dying.
...In the early spring of 2009, I discovered that my mother, then 84, could no longer walk around Wesleyan's indoor athletic "cage" without catching her breath. She had developed two perilously stiff and leaky heart valves. In a pounding rainstorm, I drove her to Boston's Brigham and Women's Hospital, a pioneer in heart-valve replacement surgery for the very old. The surgeon told her that if she survived surgery, she could live to be 90. Without it, she had a 50-50 chance of dying within two years. My mother weighed the surgery's real and often underplayed risks of stroke and dementia. Then she said no.
...my mother's "heart-failure management" nurse urged me to get her to reconsider. Aside from her heart, the nurse said, my mother was healthy and full of life. Torn, I called my mother's internist. "I know your mother well enough, and I respect her," he said. "She doesn't want to risk a surgery that could leave her debilitated or bound for a nursing home. I think I would advise the same decision if it was my Mom."
I called my mother and said, "Are you sure? The surgeon said you could live to be 90."
"I don't want to live to be 90," she said.
"I'm going to miss you," I said, weeping. "You are not only my mother. You are my friend."
That day I stopped pressuring my mother to live forever and began urging her doctors to do less rather than more. A generation of middle-aged sons and daughters are facing this dilemma, in an era when advanced medical technologies hold out the illusion that death can be perfectly controlled and timed.
I suppose this was a sweet thing to say, but it also smacks of an unrealistic expectation. Maybe she could live to be 90, but there is no guarantee of the quality of life she's going to have.
Shouldn't we be happy when our loved ones have passed beyond suffering? Since death is inevitable, shouldn't we at least be pleased when it happens for someone on their own terms? Still lucid and able to speak for themselves?
Patrick at September 10, 2013 1:45 AM
You're right Patrick, but a part of mourning someone is at least a bit selfish, we think about how their loss impacts us, and what we haven't got in our lives anymore because they are gone.
Maybe that isn't perfect, but neither is human nature, and at least in this sort of instance, maybe it isn't so bad.
Robert at September 10, 2013 2:20 AM
This speaks as well to the question of applying technology: how much should one person command, through private or public agency, especially by proxy when the wishes of the subject are not known?
When medicine is socialized, this and questions about the quality of life will be displaced from the patient to the pages of a rule book. I don't see that being a good idea.
Radwaste at September 10, 2013 2:37 AM
Then perhaps amidst our self-pity, we could find some consolation in the things I've described.
I'm reminded of one of my favorite moments of musical theatre, the song "You Oughta Be Here With Me," from "Big River," a loose adaptation of Mark Twain's Huckleberry Finn.
The problem with this song is that every time I see it performed, it sucks. So, I'm not going to post a video, since I wouldn't wish those horrible performances on even my worst enemy.
The song is performed by Mary Jane over her father's casket. She runs the gamut of emotion -- torn between "How dare you die on me?" and self-pity -- before finally settling on blessed resignation.
The reason that these performances suck is because the performers all do what bad actors always do: play one emotion in the entire scene and stick with it.
So, what we get is "I am angry. I am angry. I am angry." or "I am sad. I am sad. I am sad." God forbid an actress should move from one emotion to another, the same as we do in real life. But actors believe in "transitions." When they play an emotion, they think the audience needs to see them gradually moving from one emotion to the next. Real live people just jump from emotion to emotion.
Patrick at September 10, 2013 2:48 AM
"I'm going to miss you," I said, weeping. "You are not only my mother. You are my friend."
That didn't reflect an "unrealistic expectation," but an honest emotion. She was able to face the fact of her mom's impending death ("That day I stopped pressuring my mother to live forever and began urging her doctors to do less rather than more") and express the genuine feeling of loss she would suffer when her mom passed on. That didn't mean she was selfishly unwilling to let her go, just that she would miss her - as we would all miss someone we love. I told my mom the same thing as she was dying. I still miss her every day, but I'm glad she's in a better place now.
Grey Ghost at September 10, 2013 7:27 AM
Patrick, that's not the way Katy's statement came across to me. I only read it as a statement of love and mourning. I don't think she said it with any expectation of changing her mother's mind. My wife and I are currently going through something similar; I can't talk out of school but we are losing a friend who is moving on with her life. And it feels a lot the same. All we can do at this point is tell her that we love her and care for her, and acknowledge that it's going to hurt.
Cousin Dave at September 10, 2013 7:27 AM
Many, I suspect, have said that death (aside from when it's slow and painful) is really only emotionally hard on the survivors.
lenona at September 10, 2013 8:57 AM
Saying no might get you killed
http://thelibertarianrepublic.com/ww2-hero-refuses-medical-care-so-cops-kill-him-in-his-nursing-home/
lujlp at September 10, 2013 9:00 AM
I heard an interview about this story/book this morning on NPR and it reminded me of my Grandmother's death -- she faced a choice and decided against intervention and died shortly thereafter. While wishing we had her longer, she went with dignity at home and she was ready. Quality of life was her most important consideration. It was heart-wrenching to accept her choice but years later I am so thankful she had the courage to make that choice. And thankful for my Aunt & the rest of the family who supported her decision and understood even if really WE weren't ready (are you ever?).
chickia at September 10, 2013 1:06 PM
The problem with the laws and death is the black and white rules written into them. I don't want to go from dehydration or starvation. I want to be put out of my misery with a shot. If I have Alzheimer's/dementia and I have no clue who anybody is -- give me a shot that puts me to sleep and I am dead.
Same with a coma. They pretty much know that at 30-45 days whether I'm coming back. But the only resolution is to dehydrate me to death.
If I decide that I want to work to my last days as much as possible, let me go for it. But don't stop me from ending it.
Jim P. at September 10, 2013 7:27 PM
My mother died very quickly after deciding that she would stop dialysis. She had been going for over 2 years, three days a week. Then she got some kind of infection, probably at the dialysis center, which lead to a bowel blockage. She just said 'I'm sick of this crap' and quite dialysis on a Friday and was gone the next Tuesday.Over the weekend we tried talking her into continuing..DH at least thought she could overcome the problems she was having. He told her he'd love to see her in the US in October, so 'try just a little longer'. I told her that my brother and his wife had tickets to go see her a week later, and that she would most likely not make it another 10 days.
She said 'It is what it is. I don't want to do this any more.I'm sick of the hours in the chair, I'm sick of the bus rides, the nausea, the tiredness. I want to go to Hospice (she was in a rehab center at the time), it's a lovely place, I will be able to see the forest from my room, it's quiet and peaceful, I've made up my mind.' They told her she was on her way to hospice,transported her and once she got there and they settled her in her room, she fell asleep, then went into a coma, and then was gone less than 24 hours after the transfer. She had been waiting to go there.
I would have liked more time with her, and I knew that she would have less than a week if she stopped treatment. But it's not about me, or my husband, she got to die the way she wanted, where she wanted. I want to do the same.
crella at September 10, 2013 8:04 PM
Jim P., I was going to post that. I had no idea it was from Jack Handey, though.
Patrick at September 11, 2013 6:18 AM
Let's be clear, though: If you're terminally ill, your death might be terrible and painful and undignified no matter what you do. My husband's grandmother made the choice to die on her own terms, in her own home, and she was still in terrible pain, despite a lot of morphine, and needed people to help her empty her bowels every few hours to relieve some of the pain.
That said, she wanted to die watching Gone With the Wind, surrounded by family, and she got her wish.
MonicaP at September 11, 2013 10:06 AM
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