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A thoughtful, well-researched, and compassionate look at care, both medical and otherwise, for living and dying in old age.
Gawande looks at the history and current state of his subject in America, with some forays into India, which is where his family is from. Unlike most people who pontificate about the good old days and how things are done elsewhere, when he writes about that, he's speaking from both actual history and personal/family experience.
The easy answer to "why is old age horrible in America nowadays" is that old people used to be cared for at home by their families, which was the right way to do it, but nowadays the family is broken/young people are selfish/capitalism is bad, so they're pushed into horrible and unaffordable nursing homes. Well... the part about horrible and unaffordable nursing homes is true. But the rest is more complicated.
Historically, not all old people had families, or families who could care for them; the ones who didn't died in the streets, or in horrifying poorhouses or debtors' prisons. So "the family can and should do it" has never been a complete answer.
Gawande presents an example from his own family of what in some regards is the ideal state of at-home elder care. His great-grandfather lived to be 103, was helped with the care he needed but nobody stopped him from doing what he wanted, and died on a business trip! But, since Gawande is looking at real people rather than imaginary ones, he can also see the problems with this: the old man was still bossing his family around way past the point when they wanted to be able to make their own decisions, and there were a bunch of family problems due to that.
When old people are cared for at home by their family, it often means that the younger people don't get to live their own lives. In Gawande's case, this had the biggest effect on sons who wanted independence, but historically it mostly means that women (typically the youngest daughter) spend their entire lives devoted to a parent. The parents don't necessarily want to live with their kids, either.
He's not saying that all generations living in the same home in perpetuity is always bad, just that it's not necessarily the ideal or best option.
Gawande then explores how assisted living and nursing homes are frequently horrible and treat old people like prisoners, then looks at a number of case studies of homes for old people that are not like that, from the original assisted living that was the ideal of what that should mean, to a nursing home that moved in four cats, two dogs, and one hundred parakeets to cheer things up, to an apartment building with a very devoted manager.
He makes a strong and moving case for the needs of the elderly for both care and independence/choice, including choices that are risky. People shouldn't lose their rights just because they're old.
He also uncovered some fascinating research on how people prioritize their lives. Young people tend to invest in the future, doing things that will produce rewards later, like going to college, working at jobs they don't like to save money, etc. They also tend to look outward: traveling, making new friends, etc. Old people tend to focus on the present: spending time with family and existing friends rather than making new ones, enjoying daily activities rather than special occasion ones.
This is true across cultures, and is also pretty obvious. But Gawande looks at research that digs into why. Conventional wisdom is that old people act that way because their accumulated life experience teaches them what's really important. But it turns out that in fact, it has to do with the perception of how much time you have. When young people get life-threatening illnesses, they start behaving and prioritizing like old people. When you ask old people to imagine what they'd do if their life was extended by twenty years past what they really have, they start prioritizing like young people.
When you think your time is limited, you focus on the present, current loved ones, and daily pleasures. When you think you've got plenty of time left, you focus on the present, meeting new people, and doing new things. Old people aren't wiser in that regard, they're just making choices that make sense under their circumstances - the same as young people are doing.
Note that this isn't all people all the time, obviously. It's just about overall social trends: young people as a group are more likely to behave in X ways, not "all young people are future-focused."
The book also explores end of life care, but I knew more about that going in, and so was more struck by the parts about living in old age rather than dying in it.
Absolutely perfect cover. If you can't see it well, it's a blade of grass (embossed, on the physical book) casting a shadow.
Being Mortal: Medicine and What Matters in the End
Gawande looks at the history and current state of his subject in America, with some forays into India, which is where his family is from. Unlike most people who pontificate about the good old days and how things are done elsewhere, when he writes about that, he's speaking from both actual history and personal/family experience.
The easy answer to "why is old age horrible in America nowadays" is that old people used to be cared for at home by their families, which was the right way to do it, but nowadays the family is broken/young people are selfish/capitalism is bad, so they're pushed into horrible and unaffordable nursing homes. Well... the part about horrible and unaffordable nursing homes is true. But the rest is more complicated.
Historically, not all old people had families, or families who could care for them; the ones who didn't died in the streets, or in horrifying poorhouses or debtors' prisons. So "the family can and should do it" has never been a complete answer.
Gawande presents an example from his own family of what in some regards is the ideal state of at-home elder care. His great-grandfather lived to be 103, was helped with the care he needed but nobody stopped him from doing what he wanted, and died on a business trip! But, since Gawande is looking at real people rather than imaginary ones, he can also see the problems with this: the old man was still bossing his family around way past the point when they wanted to be able to make their own decisions, and there were a bunch of family problems due to that.
When old people are cared for at home by their family, it often means that the younger people don't get to live their own lives. In Gawande's case, this had the biggest effect on sons who wanted independence, but historically it mostly means that women (typically the youngest daughter) spend their entire lives devoted to a parent. The parents don't necessarily want to live with their kids, either.
He's not saying that all generations living in the same home in perpetuity is always bad, just that it's not necessarily the ideal or best option.
Gawande then explores how assisted living and nursing homes are frequently horrible and treat old people like prisoners, then looks at a number of case studies of homes for old people that are not like that, from the original assisted living that was the ideal of what that should mean, to a nursing home that moved in four cats, two dogs, and one hundred parakeets to cheer things up, to an apartment building with a very devoted manager.
He makes a strong and moving case for the needs of the elderly for both care and independence/choice, including choices that are risky. People shouldn't lose their rights just because they're old.
He also uncovered some fascinating research on how people prioritize their lives. Young people tend to invest in the future, doing things that will produce rewards later, like going to college, working at jobs they don't like to save money, etc. They also tend to look outward: traveling, making new friends, etc. Old people tend to focus on the present: spending time with family and existing friends rather than making new ones, enjoying daily activities rather than special occasion ones.
This is true across cultures, and is also pretty obvious. But Gawande looks at research that digs into why. Conventional wisdom is that old people act that way because their accumulated life experience teaches them what's really important. But it turns out that in fact, it has to do with the perception of how much time you have. When young people get life-threatening illnesses, they start behaving and prioritizing like old people. When you ask old people to imagine what they'd do if their life was extended by twenty years past what they really have, they start prioritizing like young people.
When you think your time is limited, you focus on the present, current loved ones, and daily pleasures. When you think you've got plenty of time left, you focus on the present, meeting new people, and doing new things. Old people aren't wiser in that regard, they're just making choices that make sense under their circumstances - the same as young people are doing.
Note that this isn't all people all the time, obviously. It's just about overall social trends: young people as a group are more likely to behave in X ways, not "all young people are future-focused."
The book also explores end of life care, but I knew more about that going in, and so was more struck by the parts about living in old age rather than dying in it.
Absolutely perfect cover. If you can't see it well, it's a blade of grass (embossed, on the physical book) casting a shadow.
Being Mortal: Medicine and What Matters in the End
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in practice that usually means that there's a scapegoat woman the family finds within herself who's expected to bury herself in caring for an old/terminally ill/chronically disabled older family member. in many cases, it's a woman who's married into the family and who's expected to sacrifice herself for the in-laws. people who go 'hurr durr care houses bad family should care' and did not, y'know, were expected to devote 5-10 years of their own life to round o'clock elder care should be, y'know, .
(and that's not even touching on the fact that most families - who are made of people with their own workload and issues - are simply not qualified to provide an elderly or sick or dying in pain person with proper care, dignity and pain management. i've seen my mom care for her grandgrandparents and grandparents and dad's mom basically in a row, and while there was a lot of love and everybody did their best it was also a lot of horrific strain and grief and terror and hardship that was just utterly unfair to everybody involved. ugh.)
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But there needs to be a better system: it's either spend the entire estate (and then some) providing private care at home or in a facility, or give up all or some of your life providing that care, and as noted above, children are not always qualified to provide such care. My cousin moved in with her mother and took care of her for four years -- she was the youngest daughter, and unmarried, and had a scattershot career, and suffered from depression for quite a while after her mother died. As for me (also the youngest daughter, and unmarried), my parents tried several times to get me to buy a house with them so
I could care for them"we could all live together and C could get a nice house out of it". It would have been a nightmare.But we were lucky: Dad had invested aggressively, and there was more than enough cash available to provide all the care they needed -- even 24-hour care when they were no longer safe on their own. But, again, we were lucky. Everyone deserves the dignity of kind, supportive care in the end of life. Why can't we do that?
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And I've been thinking about this book a lot lately, as my mother-in-law had what I would characterize as a good death (as good as you can get with terminal cancer, fuck cancer), and my father-in-law is becoming the canonical example of "we want to protect him from himself but I guess he needs his independence more." (He needs to move from his house, which is very much not suitable for an older man who has mobility problems that are very mild now but... might not always be mild... and speaking of which, he needs to get his knees fixed... and... gah.)