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cahn5/5. tl;dr version: READ THIS BOOK. READ IT.
Long rambly version: I really, really did not want to read this book. It's about about the end of life. It's about death. It's about how we (individually, in partnership with our doctors, and societally) prepare, or should prepare (and often don't), for these things. Ugh. Who wants to read about that?
I trust Gawande, though, so I read it anyway. And it was brilliant and difficult and something I am really, really glad I read. Gawande talks about medicine and what the purpose of it is, especially in the face of failure, because eventually doctors fail: we all die. Is the purpose of medicine to maximize lifespan? (Spoiler: in today's society, yes.) Or to maximize the quality of life? If the latter, what does that mean? How can we do it?
And it's hard to shift focus to maximizing quality of life from maximizing lifespan, which is a nice hard easily-computable metric, and furthermore, is easier emotionally in the short run. He talks about how in his own career as a surgeon he's had problems with having those hard conversations, and what it means and the aftermath of having the hard conversations.
He talks about how there's the model of a doctor as the authoritarian ("do this for the best result"), and the newer model of the doctor as the provider of options and information ("here is option A, here is option B"), and how an emerging model is that of the doctor as trying to understand what it is the patient really wants and trying to provide that. This discussion reminded me of giving birth, where my doctors were definitely on the end of the spectrum of providing information and leaving me to make my own decisions. Which was nice — as a scientist I appreciate that — but I really like the idea of going to the heart of what the patient fundamentally wants.
He talks about his father and his wife's grandmother, and what was done correctly and incorrectly in these cases, and the struggles they had. And how even with his father and himself both being doctors, how hard talking about these things was, but how glad he was that they did.
The one big thing he does not talk about is dementia, because it doesn't really fit into his thesis of how to make sure people have the life they want. Because, as far as I can tell, dementia just sucks and there's nothing that can be done to make it not suck. So, I mean, I don't blame him for leaving him out, it doesn't fit what he's trying to talk about, but it's definitely a gaping hole there.
D's parents and my parents are all getting older. We're very lucky that so far none of them have had major debilitating issues, but still — they're getting older. And we're going to have to have this conversation with them — maybe not this year, maybe not even this decade, but sooner than we want. I suppose my sister, being the doctor, may take the lead on the conversation with my parents. I don't know. I'm really glad I read this book, because it gives me less of a feeling of fumbling around in the dark around these questions. One fundamental thing Gawande talks about is that children want their elderly parents to be kept safe. The elderly parents want and even need autonomy, even if it is partially at the expense of safeness. (…sort of turning backwards the child-parent relationship, huh.) And — yeah. If my mother were put in a facility where she had no autonomy, I don't think she would last very long at all.
I've talked before about how I feel like one of the marks of a great writer is someone who is willing to do new things that might not be popular, and I think Gawande is a great example of that. He's a very good writer on a craft level, and I would have been happy to read his columns about random patients for years on end. But then he got interested in checklists and how they could help in medicine, and wrote The Checklist Manifesto, which was a leap forward in the material he'd been tackling.
And then this book: I'm sure there are people who are not buying it because of the subject material. I'm sure that there are people who wish he'd just stuck with his columns and didn't get into such a hard subject. I'm sure he would have made more money and sold more copies with a less difficult, more witty subject, maybe plastic surgery? But this was what he knew was the important thing he needed to talk about. And it is important.
This should be required reading for anyone who lives in a modern society and has a loved one who is going to grow old and/or die, or is going to grow old and/or die herself. That is, all of us.
It is February, which once upon a time![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
julianyap designated as Put Quotes in Your Blog Month, and though no one remembers this but me, I still think it's great, so have a quote:
Long rambly version: I really, really did not want to read this book. It's about about the end of life. It's about death. It's about how we (individually, in partnership with our doctors, and societally) prepare, or should prepare (and often don't), for these things. Ugh. Who wants to read about that?
I trust Gawande, though, so I read it anyway. And it was brilliant and difficult and something I am really, really glad I read. Gawande talks about medicine and what the purpose of it is, especially in the face of failure, because eventually doctors fail: we all die. Is the purpose of medicine to maximize lifespan? (Spoiler: in today's society, yes.) Or to maximize the quality of life? If the latter, what does that mean? How can we do it?
And it's hard to shift focus to maximizing quality of life from maximizing lifespan, which is a nice hard easily-computable metric, and furthermore, is easier emotionally in the short run. He talks about how in his own career as a surgeon he's had problems with having those hard conversations, and what it means and the aftermath of having the hard conversations.
He talks about how there's the model of a doctor as the authoritarian ("do this for the best result"), and the newer model of the doctor as the provider of options and information ("here is option A, here is option B"), and how an emerging model is that of the doctor as trying to understand what it is the patient really wants and trying to provide that. This discussion reminded me of giving birth, where my doctors were definitely on the end of the spectrum of providing information and leaving me to make my own decisions. Which was nice — as a scientist I appreciate that — but I really like the idea of going to the heart of what the patient fundamentally wants.
He talks about his father and his wife's grandmother, and what was done correctly and incorrectly in these cases, and the struggles they had. And how even with his father and himself both being doctors, how hard talking about these things was, but how glad he was that they did.
The one big thing he does not talk about is dementia, because it doesn't really fit into his thesis of how to make sure people have the life they want. Because, as far as I can tell, dementia just sucks and there's nothing that can be done to make it not suck. So, I mean, I don't blame him for leaving him out, it doesn't fit what he's trying to talk about, but it's definitely a gaping hole there.
D's parents and my parents are all getting older. We're very lucky that so far none of them have had major debilitating issues, but still — they're getting older. And we're going to have to have this conversation with them — maybe not this year, maybe not even this decade, but sooner than we want. I suppose my sister, being the doctor, may take the lead on the conversation with my parents. I don't know. I'm really glad I read this book, because it gives me less of a feeling of fumbling around in the dark around these questions. One fundamental thing Gawande talks about is that children want their elderly parents to be kept safe. The elderly parents want and even need autonomy, even if it is partially at the expense of safeness. (…sort of turning backwards the child-parent relationship, huh.) And — yeah. If my mother were put in a facility where she had no autonomy, I don't think she would last very long at all.
I've talked before about how I feel like one of the marks of a great writer is someone who is willing to do new things that might not be popular, and I think Gawande is a great example of that. He's a very good writer on a craft level, and I would have been happy to read his columns about random patients for years on end. But then he got interested in checklists and how they could help in medicine, and wrote The Checklist Manifesto, which was a leap forward in the material he'd been tackling.
And then this book: I'm sure there are people who are not buying it because of the subject material. I'm sure that there are people who wish he'd just stuck with his columns and didn't get into such a hard subject. I'm sure he would have made more money and sold more copies with a less difficult, more witty subject, maybe plastic surgery? But this was what he knew was the important thing he needed to talk about. And it is important.
This should be required reading for anyone who lives in a modern society and has a loved one who is going to grow old and/or die, or is going to grow old and/or die herself. That is, all of us.
It is February, which once upon a time
julianyap designated as Put Quotes in Your Blog Month, and though no one remembers this but me, I still think it's great, so have a quote:Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?
(From K)
Date: 2015-02-16 06:39 am (UTC)I talked to my parents about it some, and they were already clear on the main points (autonomy > safety, and hospice not only making patients and families happier, but also helping patients live longer than aggressive treatment). My parents have always been pretty upfront about this stuff, so the conversation isn't too difficult in the abstract. But when morbidity and mortality become more pressing issues, I feel like Gawande's book will be really helpful in asking specific questions about priorities.
One thing that the book didn't really mention was full-time home health aides; I assume they're more expensive than the assisted living and nursing home situations Gawande talks about, but I suspect that they're not an order of magnitude more expensive. My mom's mother had one for several years before she died, and my aunt functioned as one for my dad's mom, and that allowed them to live at home until they died. It didn't give them the social group that Gawande portrays in the 12-room homes, but they did get to stay in familiar places and have as much autonomy as their bodies allowed.
I agree that the dementia question is frustrating. I am particularly afraid of angry dementia; of my two grandparents who experienced moderate dementia (not Alzheimer's), both were very sweet -- and that doesn't worry me too much. But if one of my parents developed Alzheimer's and became frequently angry and paranoid, that would be about the hardest thing I can imagine.
My dad mentioned a book, Younger Next Year, which includes the usual anti-aging advice, and which apparently articulates the goal of staying fit and healthy into old age and then dropping dead quickly rather than slowly rotting to death.
Re: (From K)
Date: 2015-02-16 04:03 pm (UTC)What is the difference between full-time home health aides and hospice care? Gawande did mention hospice care as something that allowed people to stay in familiar places and have some autonomy instead of being uprooted.
I haven't even thought about angry paranoid dementia :( Ugh. My dad's father had moderate dementia but wasn't angry or paranoid, and neither was D's aunt -- although she was just very confused and sad all the time, which was rather less hard to deal with but maybe more heartbreaking.
Hm, I'll have to look up that book. My dad would like it :)
Re: (From K)
Date: 2015-02-16 05:37 pm (UTC)Hospice care, I think, is explicitly for the end of life when you have a terminal condition that a doctor thinks will cause you to die within the next six months or so, and when you've decided to forgo further aggressive medical treatments and simply want palliative care to make you more comfortable, preferably at home.
By contrast, my mom's mother was mostly paralyzed from the neck down for the last several years of her life. Her internal organs were mostly fine (maybe she had dialysis?), and so she wasn't dying -- she just couldn't live alone without someone to help her move around, feed her, and so on. So instead of living in a nursing home, she had someone come to her house nearly 24 hours/day. It wasn't great, but it seemed to make everyone happier than the alternatives.
Younger Next Year looks gimmicky, and not necessarily better than the many other books in its genre, but it does claim to give a reasonable overview of well-supported studies, and will probably make me feel guilty about not getting enough exercise and sleep.
Re: (From K)
Date: 2015-02-16 09:03 pm (UTC)Ah, I see.
Eh, I think you can be involved with parenting, involved with taking care of yourself, or involved with career stuff, and anything you do on one axis is likely to be done at the expense of another axis. So, yeah, if you're my dad and have nothing to do but get exercise and sleep, then sure. (He is widely regarded to be the most in shape in our entire extended family. Including the cousins in their 20's. :) But he also does nothing these days except that!)
no subject
Date: 2015-02-16 01:05 pm (UTC)That's... not entirely true, IMO (not a medical professional, but I see quite a lot of dementia in the course of my work). I mean, yes, it does suck, and there is always an irreducible core of suckiness to it, but that doesn't mean that there are lots of ways in which life can be made better for dementia sufferers.
As K says, though, dementia varies a lot, and the angry king is particularly hard on everyone.
no subject
Date: 2015-02-16 04:15 pm (UTC)My two experiences with it (pretty much wholly second-hand) have been with D's aunt and my dad's father, and they were both pretty terrible. I think D's aunt was just in a bad situation, as her husband had just died (we expect the grief from that accelerated the dementia) and they had no kids, and her brothers and sisters lived far enough away that it was hard for them to manage care for her, so she wasn't able to retain care in familiar surroundings or with people she was familiar with, which was miserable for her. My dad's father, on the other hand, was in a family-inflicted situation where everyone just behaved poorly, and my parents believe that he could have been happier and lived longer had his family handled things differently. (My dad, for various reasons, didn't have much say in how things went.)
Though now that you mention it, I also have a friend whose mother is going through dementia, and as far as I can tell her situation is (as far as these things can ever be) rather ideal -- she lives at home with her husband, and her daughter (my friend) lives nearby and helps with meals, etc. when they need it. She is also awfully sweet -- I have met her a couple of times and aside from a certain vagueness (and the fact that she never remembers me from time to time) she could almost pass as everything being perfectly fine.
no subject
Date: 2015-02-16 02:10 pm (UTC)(May I also highly recommend When Someone Dies: The Practical Guide to the Logistics of Death as an excellent supplement? It looks at the legal side of mortality in a way that I found refreshingly straightforward.)
no subject
Date: 2015-02-16 04:19 pm (UTC)no subject
Date: 2015-02-16 06:52 pm (UTC)no subject
Date: 2015-02-16 09:04 pm (UTC)