Friday, February 27, 2015

Cephalopod Coffeehouse Review: Being Mortal

The best book I read in February, by far, was Atul Gawande's Being Mortal: Medicine and What Matters in the End. This nonfiction book (which has now been adapted into a Frontline production for PBS) is an exploration of what Dr. Gawande has learned in his years in medicine about the choices made at the end of life. He is especially critical of the choices doctors make in managing patients who are in their final stages of old age or illness.

I was convinced by the book that the Hippocratic Oath has either been ignored or terribly misunderstood by the medical establishment when it comes to the dying. By mindlessly applying themselves to whatever immediate medical problem is at hand, and ignoring the reality that death cannot be put off forever, doctors unintentionally force people to endure terrible suffering at their end of their lives. As well as living in constant agony, people too often die in a soulless institution, hooked up to a machine, alone or surrounded by strangers. If you are very lucky, you are felled quickly, before your doctor has a chance to diagnose you with anything.



Gawande documents these failings in this book and prescribes a fix: mostly, for doctors to accept that people are mortal and to help them figure out what kind of death they want. For the terminally ill, he's very much in favor of hospice, because people who go into hospice often live longer and feel better than people who allow themselves to be talked into aggressive treatments and hospitalization. He doesn't say people must do hospice, though—it just depends on what the dying person wants, and what resources she and her family have. For the failing elderly, assisted living or a nursing home may be necessary: but they don't have to be wretched institutions. He gives examples of old-age homes that really try to be homes to the residents, not prisons. One of the most striking things about this section was the traditional nursing-home focus on safety above all else, as if preserving the life for its own sake was all that mattered. Newer, better old-age homes may make some sacrifices in the safety department, but allow for much greater autonomy and pleasure. Very few people want to live an extra decade staring at a blank wall and being handled by uncaring people in gloves and masks. Many people would be willing to trade in some remaining time if they get to have pets, walk as much as they are able to (even if it means falling sometimes), and having the occasional medically-ill-advised scotch or ice cream.

Gawande recommends to doctors that they go through a specific set of questions to help people figure out what's important to them and how to get their needs met. What is your understanding of where you are and of your illness? What are your worries and fears for the future? What are your goals and priorities? What outcomes are unacceptable to you? What are you willing to sacrifice, what aren't you? What would a good day look like? He recommends to the rest of us that we start thinking about these questions now for ourselves, and maybe more importantly, for our loved ones.

Dying people tend to be clearer about what they want at the end of their lives than their relatives are. Even Gawande's own father, who had a Do Not Resuscitate (DNR) directive and very specific rules about not calling 911 in any circumstances, found himself in the hospital after he took too much painkiller one night. His wife, Gawande's mother, just couldn't follow his rules. It's much easier for the dying person to let go than it is for the people around him to *let* him go. If you're dying and you don't want to be a burden on anyone, or suffer interminably, you're considered practical and a bit noble when you sign that DNR. If you let your husband die instead of calling 911, you're considered heartless. And it's not just how you're perceived: people genuinely don't want to lose the people they love.

The stories about parents learning to let go of children were even more heartbreaking than Gawande's story about his own family. We are fed so many stores about miraculous recoveries and heroic mothers who insisted on never giving up that we feel that's our only option: never give up. In the vast majority of cases, terminal means terminal, and the time-left prognosis is optimistic at best. In fact, doctors typically overestimate how much time a terminal patient has left to live by a factor of five. Five!

Gawande does an amazing job of weaving together statistics, policy, and anecdotes. I'm like most people, so the anecdotes stuck with me especially. Sara Monopoli, Gawande's patient, and Peg Bachelder, Gawande's daughter's piano teacher, had especially poignant stories, almost at opposite ends of the spectrum. Sara was a young mother, still pregnant when she received her diagnosis, so her story was terribly sad. And frustrating, because it didn't have to be quite so sad. Bachelder's amazing response to hospice—no miracles, but so much better than it could have been—had me dabbing at my eyes with a hankie.

Just after I finished this powerful book, I heard the news that one of my favorite contemporary writers and thinkers, Dr. Oliver Sacks, has been diagnosed with terminal cancer. Sacks is 81, so on some level he knew his time was drawing to a close, but he'd been in robust health till he received the diagnosis. His op-ed piece for the New York Times beautifully illustrates many of the lessons in Gawande's book: Sacks says he immediately felt his world constrict, with politics and worldly worries falling away and only his family and friends mattering. And that this constriction didn't feel like a bad thing. He acknowledges the inevitability of his death: he is not pursuing a miracle cure, or any cure. He says, "It is up to me now to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can." That is, ultimately, what Gawande hopes we will all pursue, and what our doctors will help us all pursue, rather than mindlessly attempting to keep us all alive another day, at any cost.



To read the other Coffeehouse reviews, or add your own, go to our host The Armchair Squid's page.

18 comments:

  1. As a nurse who has worked with elderly and terminally ill, I can tell you that there are so many difference scenarios under the sun. The only person who should decide the specifics of their "exit" is the one who is exiting. I'll agree with that every time.

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    1. Makes sense! Difficult when the patient is incapacitated, so hopefully people get their directives signed and tell everyone about their desires this ahead of time.

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  2. Many doctors ignore DNRs. It's terrible.

    Love,
    Janie

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    1. That is terrible. You'd think that might lead to lawsuits from outraged surviving family members. Of course, they may be the ones urging docs to ignore the DNR. I know when a friend's husband had a massive pulmonary embolism recently at home, the paramedics who rushed in asked first about a DNR. So that's good, at least, if this has become procedure.

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  3. I used to work at a nursing home and it was horribly restrictive. I remember one resident who was a smoker and had to wait for one of the nurse's aids if she wanted to smoke - outside. I'm not advocating smoking, but I felt bad for her to be at the mercy of the staff for whenever she wanted a smoke, or anything else for that matter.

    This sounds like a very important book for people to read so they can make those decisions before someone else makes them.

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    1. Such indignity, to depend on everyone around you like that. And it does seem like if you've lived that long, you ought to be able to smoke whatever the hell you want, right? Although to spare those around you, "outside" seems a reasonable request. Maybe e-cigs?

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  4. I heard an interview with a doctor who believed in the concept of death with dignity, but when it came to his own father, he couldn't accept his own father's wishes. Even thought he understood what his father wanted, he couldn't let his father go. Humans are weird creatures, and it seems the living are far more afraid of it than the dying, thus the sometimes ridiculous lengths we go through to keep people alive long after they should have been allowed to move on.

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    1. Yes, I heard that story too, on NPR I think? I wonder why people have a harder time letting go of loved ones than of themselves. I suppose it's loyalty and societal expectations: it's simply expected that loved ones will fight to keep someone alive than allow someone to die ... even if dying is what the person is ready for. Have you read Me Before You? Similar issues brought up there.

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  5. Oh boy, good stuff. And this is all why it's so important to discuss these things well in advance. I already know what my parents want. My wife and I already know what we want. This is an important topic and an important book.

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    1. That's impressive! You've had all the right discussions.

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    2. And yet, it's all relatively easy in the abstract, isn't it? Thank goodness, we haven't had to put any of this to the test yet.

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  6. What a important book to read.
    I have updated my will 4 times. The last time to make sure all the directives were in place for the State of Arizona.
    Just knowing what parents or children want is not enough. You need to have it written down and be sure it is legal. In some states you need 2 doctors to OK letting the patient go.
    Great review.

    cheers, parsnip

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    1. Two doctors! I guess I see the reasons there but it seems a little heavy-handed. In Gawande's father's case he couldn't have been much clearer, and it still didn't work. And he was *pissed* when he regained consciousness in the hospital. He didn't want the drawn-out death he ended up with. (At least he got to die at home, surrounded by family and not by machines.)

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  7. I nominated you for the Very Inspiring Blogger Award. Visit my blog if you'd like to accept.

    Love,
    Janie

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  8. Hey Stephanie, I just came by to see what you've been reading. My mother died in April and my brother is fighting the big fight against multiple myeloma, so this book looks very interesting at the moment.
    I have been disconnected from blogging for the better part of a year. Have you quit?

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    1. Hi Kerry! Good to hear from you. I haven't quit, probably, but we're in the middle of a big relocation so I've been pretty wrapped up in that. I hope to get back at least to reviewing soon. I haven't even been reading! (gasp)

      So sorry to hear about your mother's death and brother's illness, that's an awful lot to cope with all at once.

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  9. ...also...what happened to Subliminal Coffee? I know you were friends, and hope all is ok.

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    1. Hmm, my reply didn't take. I haven't heard from Suze in a while, either. We have a mutual friend who saw her recently and she seemed well, though!

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