My grandma fell about a year and a half ago. I was not involved in her care decisions nor tradeoffs, but I have a medical education and I could clearly understand that the fall was a result of a complex cascade of dementia symptoms that she was suffering from — forgetfulness leading to missing meals, the malnutrition leading to weakness, kidney failure, nausea, and deeper dementia, all a perfect recipe for a fall.
The fall didn’t break anything but she was severely atrophied because she had also, in a fit of pique, requested her minimally-assistive living facility to not bother her, and thus was unconscious on her kitchen floor for several days.
Again, I wasn’t involved in her care decisions, but I believe an attentive and intensive rehab approach for a couple months could have restored most of her functions and gotten her back up to several more years of adequate living in nursing home conditions. Not to mention, the institutional nutrition she was getting was CRAP, and even eating McDonald’s was more palatable and likely nutritious to her.
Instead, she languished for a year on mostly bed rest and laughably sporadic rehab, missing the critical window to rebuild muscle mass. The atrophy got worse. Her body broke down, and she died this January.
I think this highlights another aspect of the story. The literature describes what the survival rates ARE after a serious injury, but they do not and cannot project the outcomes under an ideal rehab scenario. Far be it from me to suggest that we need to throw endless sums at hopeless cases, but I do wonder how much money paid for her last year of inadequate care, versus what a couple months of intensive rehab and a successful return to a facility she was independently paying for.
It also doesn't take into account what a really good in-home rehab could have looked like. We have so many different models to choose from in theory but very few are available in practice. In general, at-home care is better for healing, mental health, infection prevention, and a range of other outcomes. More in-home care rehab providers could get folks like your grandma on their feet and outside when it's safe to do so, working with families when they visit to reinforce the behaviors, etc. So it's not an either rehab or nothing option. There are models we're not even trying. In-home rehab models do exist, but I'm not sure Medicare will pay for any.
And that's the thing, isn't it? The models exist, but the literature doesn't, because Medicare won't pay for anything that doesn't have literature behind it. The system as it exists, from the 4D perspective you describe, is a catch-22.
Thank you for this thorough ethical grounding. I believe our task is to engage ethical challenges in the messy circumstances that have no perfect answers, and then engage the next ones.
In the 90s I was working for a nonprofit educational foundation based in Arizona. A wealthy supporter from Santa Barbara was scheduled to fly in for a meeting but had to postpone in order to go back to Jersey to help his aging mother who was in poor health find a place to live. A week later when he showed up I asked after his mother. He said she was fine. He’d found a beautiful homelike facility where all the skilled care she needed was available. But, he said, the only reason that had been possible was because he was very, very rich. And the time is coming, he warned, when even that isn’t going to matter. That’s where we are now.
The system is broken and we keep tinkering with it to make it more efficiently come to an unacceptable, indefensible outcome. An old Italian I worked for a long time ago had a phrase for it in his “funny English.” English was his third language. “A better kind of wrongness.” You Americans, he said, are the world’s greatest tinkerers. You can make anything more efficient. What you aren’t good at is making fundamental change.
It's true. We're deeply dispositionally conservative in a lot of ways. Part of it is that we've given a lot of this authority to the federal government and with 300+ million of us doing anything is like moving an aircraft carrier. Devolving some of this back to the states (my subsidiarity point) would allow for more dynamism. But that itself requires a change in thinking about where this work should be done.
Devolving back to the states without rethinking the relationships thoroughly may not be enough. Pretty sure based on my experience in the deep south and some western states, not to mention NC, my current home, home for the past 20+ years, it won’t be. Anyone ever used the dot map? https://datasmart.hks.harvard.edu/solutions/racial-dot-map
I’ve loved it as much as a piece of techy art as I have as a research tool or way to illustrate a point. It’s like a pointillist painting. Zooming out and in gives a very different impression of what you are looking at, a different reality. I have watched people’s faces as they play with it, looking at places they thought they knew and understood, but realize they don’t. Not really. It’s as fascinating as the map itself.
I wonder what other types of data could be represented in this way?
I guess my point is we have to find a functional way to deal with scale. There’s nothing magic about state or district or county lines. There is some magic in changing focus to see different things, I think. It helps us consider changing with regard to where the work should be done.
Dignity in birth and in death are human rights. Or should be. Instead, they have become luxury goods available only to those who can afford the agency to make choices about care and support in times of vulnerability.
A long and very thorough discussion of a problem without a quick fix, but one that may become more and more acute as our population grows older, and a larger portion of our population will end up in the situation that the Lokken family found itself. While comparisons may not be valid, I think of how this might have developed in a country like The Netherlands, my home country and where my parents lived in a small town. Both parents passed away in their home of 40+ years. My Mom broke her hip several years before she passed away, and cpould never really function all that well thereafter. What was different between their situation and one that might happen here in the US?
For one, the case in The Netherlands is often home care, not a nursing home, and some circumstances play in favor. Distances tend to be smaller: family members often live close by, and its tends to be less expensive to have roving nurses who make the rounds every day and visit elderly patients who need help, than to have them in a SNF (partially perhaps because the government needs to pick up the tab in both cases). These nurses (and physical therapists where needed) can provide help at home, can check whether people take their pills, can alert the local family doctor if the person needs medical help and can talk if needed on a daily basis with family members.
So the approach can be tailored and flexible, and algorithms are less useful. Is such a system possible in the US? Is it a cure-all solution? Probably not, but my point is that perhaps we in the US need to be more outward looking. What practices are followed in other countries, many of which may not be applicable here, or even worse than here , but some can be adopted.
I just mentioned more in-home care on a comment upthread. I completely agree. It's not impossible in the U.S. either, though a bit harder in very rural areas. But we need more locational flexibility for healthcare broadly. We tend to centralize care in hospitals and outpatient clinics/centers when we need to be developing creative combinations of telehealth, in-home visits, and so on.
Those combinations need to be of high quality. That’s the kind of thing that is already generally proposed as an alternative to centralized care in rural areas. You’ll find them along with other “resources” on guides and lists, but they either don’t actually exist, are of low quality or are inaccessible for a variety of reasons.
Yes, a lot of people view "reform" as "defunding" partly because that's often what the word means, but it shouldn't. We could maintain or even cut current funding levels and get dramatically better results, but we either can't see them or won't talk about them. Part of the problem is that many don't easily fit a party narrative.
You've made the structural case better than a comment could improve on, so let me press on one phrase: that correctness was "too small to be humane." I don't think it was too small. I think it was exactly the right size to work as an alibi.
A false denial can be appealed. A true one cannot, which is what makes the correct finding more dangerous to the patient than an error would have been. The system didn't need the algorithm to be wrong. It needed a true clinical fact to point to, so that a financial withdrawal could wear the face of clinical judgment. "He will not benefit from rehab" is accurate, and its accuracy is precisely what does the moral work of absolution. That is the line between an explanation and an alibi: an explanation helps you understand a death; an alibi helps the institution survive it.
And the futility was measured against rehab as the system actually delivers it, sporadic, underfunded, half-given. So "correct" means correct relative to a structure that had already decided to do little, then received its own decision back as a finding.
The tragedy isn't that the truth was too small to be humane. It's that the system had learned to make a true thing carry a verdict the truth never authorised.
My grandma fell about a year and a half ago. I was not involved in her care decisions nor tradeoffs, but I have a medical education and I could clearly understand that the fall was a result of a complex cascade of dementia symptoms that she was suffering from — forgetfulness leading to missing meals, the malnutrition leading to weakness, kidney failure, nausea, and deeper dementia, all a perfect recipe for a fall.
The fall didn’t break anything but she was severely atrophied because she had also, in a fit of pique, requested her minimally-assistive living facility to not bother her, and thus was unconscious on her kitchen floor for several days.
Again, I wasn’t involved in her care decisions, but I believe an attentive and intensive rehab approach for a couple months could have restored most of her functions and gotten her back up to several more years of adequate living in nursing home conditions. Not to mention, the institutional nutrition she was getting was CRAP, and even eating McDonald’s was more palatable and likely nutritious to her.
Instead, she languished for a year on mostly bed rest and laughably sporadic rehab, missing the critical window to rebuild muscle mass. The atrophy got worse. Her body broke down, and she died this January.
I think this highlights another aspect of the story. The literature describes what the survival rates ARE after a serious injury, but they do not and cannot project the outcomes under an ideal rehab scenario. Far be it from me to suggest that we need to throw endless sums at hopeless cases, but I do wonder how much money paid for her last year of inadequate care, versus what a couple months of intensive rehab and a successful return to a facility she was independently paying for.
It also doesn't take into account what a really good in-home rehab could have looked like. We have so many different models to choose from in theory but very few are available in practice. In general, at-home care is better for healing, mental health, infection prevention, and a range of other outcomes. More in-home care rehab providers could get folks like your grandma on their feet and outside when it's safe to do so, working with families when they visit to reinforce the behaviors, etc. So it's not an either rehab or nothing option. There are models we're not even trying. In-home rehab models do exist, but I'm not sure Medicare will pay for any.
And that's the thing, isn't it? The models exist, but the literature doesn't, because Medicare won't pay for anything that doesn't have literature behind it. The system as it exists, from the 4D perspective you describe, is a catch-22.
Thank you for this thorough ethical grounding. I believe our task is to engage ethical challenges in the messy circumstances that have no perfect answers, and then engage the next ones.
In the 90s I was working for a nonprofit educational foundation based in Arizona. A wealthy supporter from Santa Barbara was scheduled to fly in for a meeting but had to postpone in order to go back to Jersey to help his aging mother who was in poor health find a place to live. A week later when he showed up I asked after his mother. He said she was fine. He’d found a beautiful homelike facility where all the skilled care she needed was available. But, he said, the only reason that had been possible was because he was very, very rich. And the time is coming, he warned, when even that isn’t going to matter. That’s where we are now.
The system is broken and we keep tinkering with it to make it more efficiently come to an unacceptable, indefensible outcome. An old Italian I worked for a long time ago had a phrase for it in his “funny English.” English was his third language. “A better kind of wrongness.” You Americans, he said, are the world’s greatest tinkerers. You can make anything more efficient. What you aren’t good at is making fundamental change.
It's true. We're deeply dispositionally conservative in a lot of ways. Part of it is that we've given a lot of this authority to the federal government and with 300+ million of us doing anything is like moving an aircraft carrier. Devolving some of this back to the states (my subsidiarity point) would allow for more dynamism. But that itself requires a change in thinking about where this work should be done.
Devolving back to the states without rethinking the relationships thoroughly may not be enough. Pretty sure based on my experience in the deep south and some western states, not to mention NC, my current home, home for the past 20+ years, it won’t be. Anyone ever used the dot map? https://datasmart.hks.harvard.edu/solutions/racial-dot-map
I’ve loved it as much as a piece of techy art as I have as a research tool or way to illustrate a point. It’s like a pointillist painting. Zooming out and in gives a very different impression of what you are looking at, a different reality. I have watched people’s faces as they play with it, looking at places they thought they knew and understood, but realize they don’t. Not really. It’s as fascinating as the map itself.
I wonder what other types of data could be represented in this way?
I guess my point is we have to find a functional way to deal with scale. There’s nothing magic about state or district or county lines. There is some magic in changing focus to see different things, I think. It helps us consider changing with regard to where the work should be done.
Dignity in birth and in death are human rights. Or should be. Instead, they have become luxury goods available only to those who can afford the agency to make choices about care and support in times of vulnerability.
A long and very thorough discussion of a problem without a quick fix, but one that may become more and more acute as our population grows older, and a larger portion of our population will end up in the situation that the Lokken family found itself. While comparisons may not be valid, I think of how this might have developed in a country like The Netherlands, my home country and where my parents lived in a small town. Both parents passed away in their home of 40+ years. My Mom broke her hip several years before she passed away, and cpould never really function all that well thereafter. What was different between their situation and one that might happen here in the US?
For one, the case in The Netherlands is often home care, not a nursing home, and some circumstances play in favor. Distances tend to be smaller: family members often live close by, and its tends to be less expensive to have roving nurses who make the rounds every day and visit elderly patients who need help, than to have them in a SNF (partially perhaps because the government needs to pick up the tab in both cases). These nurses (and physical therapists where needed) can provide help at home, can check whether people take their pills, can alert the local family doctor if the person needs medical help and can talk if needed on a daily basis with family members.
So the approach can be tailored and flexible, and algorithms are less useful. Is such a system possible in the US? Is it a cure-all solution? Probably not, but my point is that perhaps we in the US need to be more outward looking. What practices are followed in other countries, many of which may not be applicable here, or even worse than here , but some can be adopted.
I just mentioned more in-home care on a comment upthread. I completely agree. It's not impossible in the U.S. either, though a bit harder in very rural areas. But we need more locational flexibility for healthcare broadly. We tend to centralize care in hospitals and outpatient clinics/centers when we need to be developing creative combinations of telehealth, in-home visits, and so on.
Those combinations need to be of high quality. That’s the kind of thing that is already generally proposed as an alternative to centralized care in rural areas. You’ll find them along with other “resources” on guides and lists, but they either don’t actually exist, are of low quality or are inaccessible for a variety of reasons.
And any institutional rebuilding should not be constrained by making the structure and amunt of funding for social insurance sacrosanct.
Yes, a lot of people view "reform" as "defunding" partly because that's often what the word means, but it shouldn't. We could maintain or even cut current funding levels and get dramatically better results, but we either can't see them or won't talk about them. Part of the problem is that many don't easily fit a party narrative.
You may be more radically moderate than I am radically centist! :)
You've made the structural case better than a comment could improve on, so let me press on one phrase: that correctness was "too small to be humane." I don't think it was too small. I think it was exactly the right size to work as an alibi.
A false denial can be appealed. A true one cannot, which is what makes the correct finding more dangerous to the patient than an error would have been. The system didn't need the algorithm to be wrong. It needed a true clinical fact to point to, so that a financial withdrawal could wear the face of clinical judgment. "He will not benefit from rehab" is accurate, and its accuracy is precisely what does the moral work of absolution. That is the line between an explanation and an alibi: an explanation helps you understand a death; an alibi helps the institution survive it.
And the futility was measured against rehab as the system actually delivers it, sporadic, underfunded, half-given. So "correct" means correct relative to a structure that had already decided to do little, then received its own decision back as a finding.
The tragedy isn't that the truth was too small to be humane. It's that the system had learned to make a true thing carry a verdict the truth never authorised.