Patients who have beat the odds
June 2, 2023 11:48 PM Subscribe
I keep hearing stories of people who, despite the prognosis of their doctors, make more progress or have partial or full recoveries from some disease or condition that no one expected them to.
Is there a reputable source that explains how and why this happens? Does it happen often? Is it a matter of will, attitude and commitment to a health regime? Is it about faith? Is because these folks are in some kind of medical sweet spot where they were able to have unpredicted effect by diet or new medications or some home remedy (I think of Lorenzo's Oil)? And does it vary depending on the disease or condition? Cancer vs diabetes? Being able to walk despite a spinal injury vs recovering the ability to speak after a stroke? What has been done about this topic? How often has it happened to where it has become medically significant?
I mean, we've been studying the human body since before Hippocrates. We must have a pretty good, general idea of how it works and what breaks it and why by now. I can't imagine that ranges and tolerances for this biological machine aren't pretty well mapped out since we all must fall within a some kind of scatter plot for every condition and its progression. How often, despite those charts, do people beat the odds and recover?
Is there a reputable source that explains how and why this happens? Does it happen often? Is it a matter of will, attitude and commitment to a health regime? Is it about faith? Is because these folks are in some kind of medical sweet spot where they were able to have unpredicted effect by diet or new medications or some home remedy (I think of Lorenzo's Oil)? And does it vary depending on the disease or condition? Cancer vs diabetes? Being able to walk despite a spinal injury vs recovering the ability to speak after a stroke? What has been done about this topic? How often has it happened to where it has become medically significant?
I mean, we've been studying the human body since before Hippocrates. We must have a pretty good, general idea of how it works and what breaks it and why by now. I can't imagine that ranges and tolerances for this biological machine aren't pretty well mapped out since we all must fall within a some kind of scatter plot for every condition and its progression. How often, despite those charts, do people beat the odds and recover?
I can't imagine that ranges and tolerances for this biological machine aren't pretty well mapped out since we all must fall within a some kind of scatter plot for every condition and its progression.
There's no chart that predicts with absolutely certainty the outcome of an illness for an individual. There are just collections of the same normal distributions you'd see with any widespread phenomenon.
The prognosis will be correct for most people most of the time. There will always be outliers who live longer or who recover completely. They're no more extraordinary than those at the other end of the curve who go much faster. (The idea that these latter people just didn't want to live as much as somebody else or said the wrong prayers is pretty abhorrent.)
posted by some little punk in a rocket at 3:20 AM on June 3, 2023 [12 favorites]
There's no chart that predicts with absolutely certainty the outcome of an illness for an individual. There are just collections of the same normal distributions you'd see with any widespread phenomenon.
The prognosis will be correct for most people most of the time. There will always be outliers who live longer or who recover completely. They're no more extraordinary than those at the other end of the curve who go much faster. (The idea that these latter people just didn't want to live as much as somebody else or said the wrong prayers is pretty abhorrent.)
posted by some little punk in a rocket at 3:20 AM on June 3, 2023 [12 favorites]
As Rhedyn notes, "spontaneous remission" is the term doctors use. Individual doctors tend not to pursue this when it happens - unlike clinical studies involving hundreds or thousands of patients, it's not really something they can use in their practice.
But for cancer, Kelly Turner, PhD, studies this and has written two books for laypeople, Radical Remission and Radical Hope. I've seen her say in interviews that these patients dislike the term "spontaneous remission" because they feel that they made changes that caused their results. These changes are all over the map, though, and include diet and exercise, but other things as well. Radical Hope divides them into ten different factors. If you go to Amazon and look at the preview for that book, you can see them listed in the chapter names.
For type II diabetes, cardiovascular disease, multiple sclerosis, lupus, and some other conditions, there are many, many stories like this in the whole foods, plant-based community (so vegan diet, but no processed foods, often not even oil - these stories are about dietary changes and maybe exercise). Generally, people report that their doctors aren't interested in their diets, but tell them to keep doing what they're doing, though Dr. Laurie Marbas researched and changed her own diet after one of her patients was able to give up her meds for ADHD (Dr. Marbas has a podcast called Health and Mora). The Forks Over Knives website section on success stories is good if you want to read a bunch of them. If you're up for reading a tome with citations of many studies for individual diseases, Dr. Michael Greger's How Not to Die is that. His website, nutritionfacts.org, has a crazy amount of short videos, but they aren't as focused on what you want. (I expect someone is going to come in and call Dr. Greger a charlatan, but he provides links to the studies cited in all of his videos, so you can check them out yourself.)
posted by FencingGal at 4:11 AM on June 3, 2023 [3 favorites]
But for cancer, Kelly Turner, PhD, studies this and has written two books for laypeople, Radical Remission and Radical Hope. I've seen her say in interviews that these patients dislike the term "spontaneous remission" because they feel that they made changes that caused their results. These changes are all over the map, though, and include diet and exercise, but other things as well. Radical Hope divides them into ten different factors. If you go to Amazon and look at the preview for that book, you can see them listed in the chapter names.
For type II diabetes, cardiovascular disease, multiple sclerosis, lupus, and some other conditions, there are many, many stories like this in the whole foods, plant-based community (so vegan diet, but no processed foods, often not even oil - these stories are about dietary changes and maybe exercise). Generally, people report that their doctors aren't interested in their diets, but tell them to keep doing what they're doing, though Dr. Laurie Marbas researched and changed her own diet after one of her patients was able to give up her meds for ADHD (Dr. Marbas has a podcast called Health and Mora). The Forks Over Knives website section on success stories is good if you want to read a bunch of them. If you're up for reading a tome with citations of many studies for individual diseases, Dr. Michael Greger's How Not to Die is that. His website, nutritionfacts.org, has a crazy amount of short videos, but they aren't as focused on what you want. (I expect someone is going to come in and call Dr. Greger a charlatan, but he provides links to the studies cited in all of his videos, so you can check them out yourself.)
posted by FencingGal at 4:11 AM on June 3, 2023 [3 favorites]
It's natural to want clear answers from modern medicine, and sometimes you can get them, but a lot of the time that just isn't how it works. Sometimes the causes of symptoms are very clear (you broke a bone and now your leg hurts). Sometimes, symptoms can have any of hundreds of causes, and all anyone can do is make a best guess at what the root issue is (you haven't changed your habits, but your stomach has been hurting for a month). These are simplistic examples, but the same holds for any complaint - medicine deals much more in statistics than absolutes.
When someone is diagnosed, what's really happening is that the doctor is saying "the evidence we currently have points to this cause". Evidence can be reported symptoms, or the result of tests. Doing tests usually comes with costs - this can be the cost of materials, time, or even physical costs to the patient (e.g. biopsy - taking tissue samples, which can be painful and invasive). Often, it's better to start by treating the most likely cause than it is to delay treatment and perform more expensive or invasive tests. Sometimes, the time difference between starting treatment or waiting for additional tests can be crucial in a patient's prognosis, so this isn't just a factor of money available. If treating the most likely cause doesn't help, doctors may then try more tests, or may go straight to treating the next most likely cause, but this isn't necessarily a failure or mistake - not responding to a given treatment is just more evidence about what the root cause may be.
All this is to say that, unavoidably, there are always hedges involved in diagnosis and treatment of complex issues. All we can ever say is that we're making the best choice given the current information. This isn't to say that doctors don't know what they're doing - on the contrary, doctors are extensively trained to make these kinds of decisions, and are extremely skilled at narrowing down options based on limited data.
Because of this, doctors deal in statistics a lot. Papers will say things like "Patients diagnosed with x disease and given y treatment tend to improve z amount over time". There are so many unknowns involved in every patient that we can't be more specific - exactly how long had the disease been progressing when they were diagnosed? Do they have a genetic resistance that other patients don't? Is there an environmental, age, or dietary factor? Many of these things can be tested individually, but it's impossible to control all of them at once, and some can't be tested at all - we can't sequence everyone's genome and test every gene against a certain condition.
As a result, complex conditions always have a range of responses to treatment. In fact, even simple conditions have a range of responses. It's not a lack of study about the condition - we just can't test every patient for every possible complicating factor. As with customer service, it's best to underpromise and overdeliver - doctors never want to tell a patient "you'll definitely get better" and be wrong. It's much better to say "be careful and this should help within 2 weeks" and be proven wrong when the patient recovers within one week.
Is there a reputable source that explains how and why this happens?
Hopefully I've explained some of the reasons above - if you'd like to dig further, the Wikipedia articles for "Medical diagnosis" and "Prognosis" are good, well-sourced starting points. Generally speaking this isn't a case of "doctors confounded" - it's a normal outcome of different cases responding differently to the same treatment. Usually this follows what's called a "normal distribution" - most people respond around the average, with fewer and fewer the more extremely different you get (very few people respond much better or much worse than the average).
Again, this isn't doctors being wrong or misunderstanding treatments - it's just how numbers work. Things like the average height of a population also follow a normal distribution - most people are around average height, and very few are very tall or very short. There's not necessarily a specific cause - some people are just predisposed to being tall or short.
Does it happen often?
This is a very general question without specifying more about the conditions you're interested in. With well-understood conditions, we can at least say we know a lot about what is and isn't possible - nobody heals a broken bone in five minutes, for instance. But there's always some kind of variation! Going back to statistics, for any condition, 50% of people will get better quicker than the average (the median, if you want to be specific) - that's how averages work.
Is it a matter of will, attitude and commitment to a health regime?
Certainly commitment to health regime doesn't hurt - the best I can answer about the others is "maybe", but again, I can't see how they'd be negative factors.
Is it about faith?
I don't think I can answer this one well.
Is it because these folks are in some kind of medical sweet spot [...]?
Maybe!
We've been studying the human body since before Hippocrates. We must have a pretty good, general idea of how it works and what breaks it and why by now.
We have a very good idea of how certain things work, but the human body is unimaginably complex, and everyone's is different in unimaginably complex ways. Additionally, although huge amounts are spent on research and study yearly, political and human factors mean that certain things are very well studied and certain things aren't. So unfortunately this is a combination of 1. there are still a lot of unknowns about diseases and mechanisms within the body and 2. even if that was all understood perfectly, which it isn't, we would need to know every detail about each patient's body, which we can't.
posted by spielzebub at 4:15 AM on June 3, 2023 [18 favorites]
When someone is diagnosed, what's really happening is that the doctor is saying "the evidence we currently have points to this cause". Evidence can be reported symptoms, or the result of tests. Doing tests usually comes with costs - this can be the cost of materials, time, or even physical costs to the patient (e.g. biopsy - taking tissue samples, which can be painful and invasive). Often, it's better to start by treating the most likely cause than it is to delay treatment and perform more expensive or invasive tests. Sometimes, the time difference between starting treatment or waiting for additional tests can be crucial in a patient's prognosis, so this isn't just a factor of money available. If treating the most likely cause doesn't help, doctors may then try more tests, or may go straight to treating the next most likely cause, but this isn't necessarily a failure or mistake - not responding to a given treatment is just more evidence about what the root cause may be.
All this is to say that, unavoidably, there are always hedges involved in diagnosis and treatment of complex issues. All we can ever say is that we're making the best choice given the current information. This isn't to say that doctors don't know what they're doing - on the contrary, doctors are extensively trained to make these kinds of decisions, and are extremely skilled at narrowing down options based on limited data.
Because of this, doctors deal in statistics a lot. Papers will say things like "Patients diagnosed with x disease and given y treatment tend to improve z amount over time". There are so many unknowns involved in every patient that we can't be more specific - exactly how long had the disease been progressing when they were diagnosed? Do they have a genetic resistance that other patients don't? Is there an environmental, age, or dietary factor? Many of these things can be tested individually, but it's impossible to control all of them at once, and some can't be tested at all - we can't sequence everyone's genome and test every gene against a certain condition.
As a result, complex conditions always have a range of responses to treatment. In fact, even simple conditions have a range of responses. It's not a lack of study about the condition - we just can't test every patient for every possible complicating factor. As with customer service, it's best to underpromise and overdeliver - doctors never want to tell a patient "you'll definitely get better" and be wrong. It's much better to say "be careful and this should help within 2 weeks" and be proven wrong when the patient recovers within one week.
Is there a reputable source that explains how and why this happens?
Hopefully I've explained some of the reasons above - if you'd like to dig further, the Wikipedia articles for "Medical diagnosis" and "Prognosis" are good, well-sourced starting points. Generally speaking this isn't a case of "doctors confounded" - it's a normal outcome of different cases responding differently to the same treatment. Usually this follows what's called a "normal distribution" - most people respond around the average, with fewer and fewer the more extremely different you get (very few people respond much better or much worse than the average).
Again, this isn't doctors being wrong or misunderstanding treatments - it's just how numbers work. Things like the average height of a population also follow a normal distribution - most people are around average height, and very few are very tall or very short. There's not necessarily a specific cause - some people are just predisposed to being tall or short.
Does it happen often?
This is a very general question without specifying more about the conditions you're interested in. With well-understood conditions, we can at least say we know a lot about what is and isn't possible - nobody heals a broken bone in five minutes, for instance. But there's always some kind of variation! Going back to statistics, for any condition, 50% of people will get better quicker than the average (the median, if you want to be specific) - that's how averages work.
Is it a matter of will, attitude and commitment to a health regime?
Certainly commitment to health regime doesn't hurt - the best I can answer about the others is "maybe", but again, I can't see how they'd be negative factors.
Is it about faith?
I don't think I can answer this one well.
Is it because these folks are in some kind of medical sweet spot [...]?
Maybe!
We've been studying the human body since before Hippocrates. We must have a pretty good, general idea of how it works and what breaks it and why by now.
We have a very good idea of how certain things work, but the human body is unimaginably complex, and everyone's is different in unimaginably complex ways. Additionally, although huge amounts are spent on research and study yearly, political and human factors mean that certain things are very well studied and certain things aren't. So unfortunately this is a combination of 1. there are still a lot of unknowns about diseases and mechanisms within the body and 2. even if that was all understood perfectly, which it isn't, we would need to know every detail about each patient's body, which we can't.
posted by spielzebub at 4:15 AM on June 3, 2023 [18 favorites]
Bodies are really complex and so is treatment. Here’s my example: my dad had a brain aneurysm 12 years ago that left him unable to walk or speak for 3 weeks, and the prognosis was grim. The day he had it the odds we were given were 50% chance of survival, 10% chance of recovery to the point he would walk and speak. A couple of weeks ago, he and I explored a neighbourhood on foot while he gave me extensive and useful advice for my new job.
When my dad saw his neurologist at the 6 month point, the neurologist apologized for having the wrong chart. Which he did not, actually- my dad was just not in as bad shape as he should be.
First, the prognosis was an educated estimate based on other people. And…10%. He made it to that percentage.
Second, my dad received world-class emergency and ICU care, and takes designer anti-seizure medication that luckily is covered but also *amazing* speech, occupational, and physical therapy in both rehab (4 months) and the 8 months after that. And beyond that he pursued brain and body challenges (dance classes, puzzle games, research)…he did more than the therapy team recommended. All that was sheer luck. When he went to rehab, there were just 2 beds open and we basically randomly chose one. But there could have been none, or we could have chosen one where the staff wasn’t as great at connecting with him (like many TBI patients he was pretty difficult.)
Third, and he’s where it’s complicated, that was actually the second TBI he had in my lifetime. The first was a fall that resulted in amnesia and a year+ of post-concussion difficulty. He was aided at that time by a generous workplace (academia, unionized, old school tenure) that supported him and let him recover. But he probably rerouted some of his brain wiring already (there were permanent personality changes.) We joke that he is the neuroplastic world champion. But it’s probably not a joke too..the prognosis he got was based on averages, and maybe he’s off to one side of the scale.
Fourth, even more complex, my dad is a caring person who also is eccentric and I suspect dissociative in some ways, and he was raised by an abusive person. So I also believe it’s possible his famous neuroplasticity comes from a form of PTSD.
And fifth…my dad, related to the above, mostly does what my mother wants him to do. To an odd extreme. It works for them although growing up it was not great. But that meant when my mother made his recovery the priority, he did everything she told him to, more or less.
My dad does still have some effects, notably almost no executive function and some balance and other issues. The fifth helps with that but - his recovery is miraculous indeed but not complete.it’s fine, but that shows there still was extensive damage. I was on a walk with him in part because he doesn’t do great left alone, and my mum had an appointment.
Finally, my dad’s care team believes if he has another aneurysm or stroke, he won’t make it - he just has no margin left.
I listed all that out to show…it’s so complicated, but also treatment is rarely as right as my dad’s. Immune responses, brain development, even why people with high ACE scores are more at risk for things, whether doses are calibrated right or the drug is right…it’s so complicated. And medicine is still developing.
posted by warriorqueen at 4:34 AM on June 3, 2023 [13 favorites]
When my dad saw his neurologist at the 6 month point, the neurologist apologized for having the wrong chart. Which he did not, actually- my dad was just not in as bad shape as he should be.
First, the prognosis was an educated estimate based on other people. And…10%. He made it to that percentage.
Second, my dad received world-class emergency and ICU care, and takes designer anti-seizure medication that luckily is covered but also *amazing* speech, occupational, and physical therapy in both rehab (4 months) and the 8 months after that. And beyond that he pursued brain and body challenges (dance classes, puzzle games, research)…he did more than the therapy team recommended. All that was sheer luck. When he went to rehab, there were just 2 beds open and we basically randomly chose one. But there could have been none, or we could have chosen one where the staff wasn’t as great at connecting with him (like many TBI patients he was pretty difficult.)
Third, and he’s where it’s complicated, that was actually the second TBI he had in my lifetime. The first was a fall that resulted in amnesia and a year+ of post-concussion difficulty. He was aided at that time by a generous workplace (academia, unionized, old school tenure) that supported him and let him recover. But he probably rerouted some of his brain wiring already (there were permanent personality changes.) We joke that he is the neuroplastic world champion. But it’s probably not a joke too..the prognosis he got was based on averages, and maybe he’s off to one side of the scale.
Fourth, even more complex, my dad is a caring person who also is eccentric and I suspect dissociative in some ways, and he was raised by an abusive person. So I also believe it’s possible his famous neuroplasticity comes from a form of PTSD.
And fifth…my dad, related to the above, mostly does what my mother wants him to do. To an odd extreme. It works for them although growing up it was not great. But that meant when my mother made his recovery the priority, he did everything she told him to, more or less.
My dad does still have some effects, notably almost no executive function and some balance and other issues. The fifth helps with that but - his recovery is miraculous indeed but not complete.it’s fine, but that shows there still was extensive damage. I was on a walk with him in part because he doesn’t do great left alone, and my mum had an appointment.
Finally, my dad’s care team believes if he has another aneurysm or stroke, he won’t make it - he just has no margin left.
I listed all that out to show…it’s so complicated, but also treatment is rarely as right as my dad’s. Immune responses, brain development, even why people with high ACE scores are more at risk for things, whether doses are calibrated right or the drug is right…it’s so complicated. And medicine is still developing.
posted by warriorqueen at 4:34 AM on June 3, 2023 [13 favorites]
I mean, we've been studying the human body since before Hippocrates. We must have a pretty good, general idea of how it works and what breaks it and why by now.
You would be surprised. There are common skin conditions we still can't explain!
posted by praemunire at 7:57 AM on June 3, 2023 [4 favorites]
You would be surprised. There are common skin conditions we still can't explain!
posted by praemunire at 7:57 AM on June 3, 2023 [4 favorites]
One component you haven't mentioned is genetics. Some people have effectively recovered from HIV and that's believed to be because they have some useful genes that have influenced the development of their immune system.
For lots of things, we don't really know what causes it in the first place. I mean, cancers are the result of certain changes in individual cells, and we can tell what makes those changes more likely to happen and to be problematic, but in most cases all we can say is that someone's chance of getting a specific cancer is around X%. So similarly with recovery. There's a distribution of outcomes and some people fall at one end.
In addition, we don't really understand the impact of diet as well as you might think. At a population level, we have a reasonable sense of what is likely to be "good" for people. And we know that eg deficiencies in vitamins will have certain predictable effects. But there's too much variation in individual diets and metabolism to talk with certainty about the effect of a specific diet on an individual.
I think that random luck is likely to be a much bigger influence than patients would like to be true. Everyone likes to think there's a reason for things, and that their actions have had an effect. Doesn't mean it's true.
posted by plonkee at 8:09 AM on June 3, 2023 [4 favorites]
For lots of things, we don't really know what causes it in the first place. I mean, cancers are the result of certain changes in individual cells, and we can tell what makes those changes more likely to happen and to be problematic, but in most cases all we can say is that someone's chance of getting a specific cancer is around X%. So similarly with recovery. There's a distribution of outcomes and some people fall at one end.
In addition, we don't really understand the impact of diet as well as you might think. At a population level, we have a reasonable sense of what is likely to be "good" for people. And we know that eg deficiencies in vitamins will have certain predictable effects. But there's too much variation in individual diets and metabolism to talk with certainty about the effect of a specific diet on an individual.
I think that random luck is likely to be a much bigger influence than patients would like to be true. Everyone likes to think there's a reason for things, and that their actions have had an effect. Doesn't mean it's true.
posted by plonkee at 8:09 AM on June 3, 2023 [4 favorites]
Here's a very lengthy blog put together by an acquaintance of mine. The basic story is that a person survived three liver transplants and is now a med school resident. It was pretty clear to everyone that he wasn't going to make it but now it seems that he's thriving. Given how long it is and that he was studying medicine there are likely some anecdotes on how he was able to get through it all.
posted by sewellcm at 9:14 AM on June 3, 2023
posted by sewellcm at 9:14 AM on June 3, 2023
I won't go over the whole complexity of determining outcomes, as others have already covered this very well.
Keep in mind that you keep hearing these stories due to survivorship bias. People like stories with a happy ending, so those are the ones that get passed around and they are extremely over-represented in comparison with the actual statistics. You don't hear about the stories where someone turned their life around and did everything "right" and died or did not recover anyway, and I guarantee you that happens a lot more often than you hear about.
Don't get trapped into thinking that you or anyone else is somehow that special.
posted by Aleyn at 1:38 PM on June 3, 2023 [9 favorites]
Keep in mind that you keep hearing these stories due to survivorship bias. People like stories with a happy ending, so those are the ones that get passed around and they are extremely over-represented in comparison with the actual statistics. You don't hear about the stories where someone turned their life around and did everything "right" and died or did not recover anyway, and I guarantee you that happens a lot more often than you hear about.
Don't get trapped into thinking that you or anyone else is somehow that special.
posted by Aleyn at 1:38 PM on June 3, 2023 [9 favorites]
In times past these cases were called miracles. The people involved did their best to make sense of the surprising delivery from death. In the prevailing worldview, coupled with confirmation bias, miracles often became associated with grace. Nowadays, the making sense part of the story often involves diet or woo. But there are never enough cases to provide evidence for the association. All those people who didn't make it after the healer laid on hands? They somehow get left out of the story. Miracles, or their modern equivalent, are by definition rare. If they were common they'd become part of the normal spectrum of outcomes.
When Stephen Jay Gould was diagnosed with cancer [abdominal mesothelioma - from asbestos exposure] he was initially shocked by the grim prognosis. But his spirits rallied when he found that (because of his age, location in the midst of Boston's ace hospitals, and good insurance) his odds were much much better than average. And indeed he survived for 20 years. He wrote a famous essay The Median Isn’t the Message about his intellectual, medical and statistical journey.
posted by BobTheScientist at 2:04 PM on June 3, 2023 [5 favorites]
When Stephen Jay Gould was diagnosed with cancer [abdominal mesothelioma - from asbestos exposure] he was initially shocked by the grim prognosis. But his spirits rallied when he found that (because of his age, location in the midst of Boston's ace hospitals, and good insurance) his odds were much much better than average. And indeed he survived for 20 years. He wrote a famous essay The Median Isn’t the Message about his intellectual, medical and statistical journey.
posted by BobTheScientist at 2:04 PM on June 3, 2023 [5 favorites]
This thread is closed to new comments.
From the intro: "Although the intricate mechanisms of SR have yet to be fully elucidated, it has been shown that infection-mediated immune system activation, biopsy procedures, and disruptions of the tumour microenvironment play pivotal roles in the self-healing of many tumours. Bacterial and viral infections are especially well-documented in instances of SR. Insights from these findings are paving the way for novel therapeutic strategies. "
posted by Rhedyn at 2:55 AM on June 3, 2023