These Doctors Admit They Don’t Want Patients With Disabilities
October 19, 2022 5:17 AM Subscribe
A disabled doctor used anonymous interviews to confirm what most people with disabilities already know. The article is paywalled...
but I used a tip from this thread to see it ("click 'stop' on the browser during page load just as the text is loaded but before the paywall").
but I used a tip from this thread to see it ("click 'stop' on the browser during page load just as the text is loaded but before the paywall").
This post was deleted for the following reason: Poster's Request -- loup
The doctors also explained why they could be so eager to get rid of these patients, focusing on the shrinking amount of time doctors are allotted to spend with individual patients.
Why are the appointments so short?
posted by Zumbador at 5:48 AM on October 19, 2022
Why are the appointments so short?
posted by Zumbador at 5:48 AM on October 19, 2022
Why are the appointments so short?
Because you need to process a certain number of appointments/day to be profitable, so anything that runs over costs you?
posted by GenjiandProust at 5:50 AM on October 19, 2022 [12 favorites]
Because you need to process a certain number of appointments/day to be profitable, so anything that runs over costs you?
posted by GenjiandProust at 5:50 AM on October 19, 2022 [12 favorites]
Genjiandproust Sorry I didn't phrase my question well. I meant, who creates these profit driven short appointment times? Seems like the doctors themselves are not responsible?
posted by Zumbador at 6:14 AM on October 19, 2022 [1 favorite]
posted by Zumbador at 6:14 AM on October 19, 2022 [1 favorite]
Insurance companies. That's pretty much it.
posted by restless_nomad at 6:28 AM on October 19, 2022 [43 favorites]
posted by restless_nomad at 6:28 AM on October 19, 2022 [43 favorites]
This is among the reasons real reform should focus on making doctors salaried instead of paid by the procedure/visit.
posted by Easy problem of consciousness at 6:39 AM on October 19, 2022 [24 favorites]
posted by Easy problem of consciousness at 6:39 AM on October 19, 2022 [24 favorites]
Plenty of the doctors doing this are salaried. Their employer (the hospital/corporate practice owner) can bill more per minute for these super short appointments. You need to change the reimbursement structure so that longer appointments are more worthwhile than shorter ones -- whether by just reimbursing more for them, or switching to capitation, or something, I don't know.
posted by threementholsandafuneral at 6:48 AM on October 19, 2022 [21 favorites]
posted by threementholsandafuneral at 6:48 AM on October 19, 2022 [21 favorites]
Insurance companies. That's pretty much it.
Insurance companies cause a lot of problems; certainly it's a lot of extra work for practices to bill. But basically the visit length has to be the number of provider hours available divided by the number of visits, and getting rid of insurance companies isn't going to change that. Note that the United States has a much longer average visit than average: about 22 minutes, up from about 15 in the 1990s. Only Sweden's visits are longer (by about a minute), and the average is much lower, even in richer European countries (Germany, about 8; Denmark and Netherlands, about 10). Of course, the US does spend much more money on healthcare than any other country, so we should get something for that.
"Results ... Average consultation length differed across the world, ranging from 48 s in Bangladesh to 22.5 min in Sweden. We found that 18 countries representing about 50% of the global population spend 5 min or less with their primary care physicians. We also found significant associations between consultation length and healthcare spending per capita, admissions to hospital with ambulatory sensitive conditions such as diabetes, primary care physician density, physician efficiency and physician satisfaction.
Conclusion There are international variations in consultation length, and it is concerning that a large proportion of the global population have only a few minutes with their primary care physicians. Such a short consultation length is likely to adversely affect patient healthcare and physician workload and stress."
posted by Mr.Know-it-some at 7:07 AM on October 19, 2022 [14 favorites]
Insurance companies cause a lot of problems; certainly it's a lot of extra work for practices to bill. But basically the visit length has to be the number of provider hours available divided by the number of visits, and getting rid of insurance companies isn't going to change that. Note that the United States has a much longer average visit than average: about 22 minutes, up from about 15 in the 1990s. Only Sweden's visits are longer (by about a minute), and the average is much lower, even in richer European countries (Germany, about 8; Denmark and Netherlands, about 10). Of course, the US does spend much more money on healthcare than any other country, so we should get something for that.
"Results ... Average consultation length differed across the world, ranging from 48 s in Bangladesh to 22.5 min in Sweden. We found that 18 countries representing about 50% of the global population spend 5 min or less with their primary care physicians. We also found significant associations between consultation length and healthcare spending per capita, admissions to hospital with ambulatory sensitive conditions such as diabetes, primary care physician density, physician efficiency and physician satisfaction.
Conclusion There are international variations in consultation length, and it is concerning that a large proportion of the global population have only a few minutes with their primary care physicians. Such a short consultation length is likely to adversely affect patient healthcare and physician workload and stress."
posted by Mr.Know-it-some at 7:07 AM on October 19, 2022 [14 favorites]
Here in Ontario, the average appointment time is 30 minutes too. Full hour or ninety minute appointments seem to mostly for well-baby checks, forms, pap smears, and sometimes mental health. I can't speak for the disabled patients we have but likely, that's the max time of their appointments too. Folks are able to ask for an hour appointment but receptionists have to run it by the doctor to see if they'll allow that.
posted by Kitteh at 7:09 AM on October 19, 2022 [2 favorites]
posted by Kitteh at 7:09 AM on October 19, 2022 [2 favorites]
I mean truly salaried (capitation or government employed - people who say Medicare For All should be saying VA For All instead).
Doctors employed by practices that bill fee for service and then try to align their employees incentives with their own are not really what I'm talking about.
posted by Easy problem of consciousness at 7:10 AM on October 19, 2022 [5 favorites]
Doctors employed by practices that bill fee for service and then try to align their employees incentives with their own are not really what I'm talking about.
posted by Easy problem of consciousness at 7:10 AM on October 19, 2022 [5 favorites]
who creates these profit driven short appointment times?
The person who is paying the bill. In the US, that's insurance companies. In other countries it'll be public health system. In some countries/areas, you're making a trade off because you have a shortage of doctors, but that's at least partially also down to the decisions of the people paying the bills.
posted by plonkee at 7:18 AM on October 19, 2022 [6 favorites]
The person who is paying the bill. In the US, that's insurance companies. In other countries it'll be public health system. In some countries/areas, you're making a trade off because you have a shortage of doctors, but that's at least partially also down to the decisions of the people paying the bills.
posted by plonkee at 7:18 AM on October 19, 2022 [6 favorites]
the average appointment time is 30 minutes too
I wish. I have lived in both Toronto and Ottawa and I don't think I have ever seen a doctor for anything approaching 30 minutes unless it was for an annual that included a PAP. Virtual patient visits at Appletree are something like 7 minutes long (though presumably the doctor then gets at least some charting time on top of that?) and my current clinic schedules patients for 15 minutes unless there is a specific reason to go longer.
posted by jacquilynne at 7:21 AM on October 19, 2022 [5 favorites]
I wish. I have lived in both Toronto and Ottawa and I don't think I have ever seen a doctor for anything approaching 30 minutes unless it was for an annual that included a PAP. Virtual patient visits at Appletree are something like 7 minutes long (though presumably the doctor then gets at least some charting time on top of that?) and my current clinic schedules patients for 15 minutes unless there is a specific reason to go longer.
posted by jacquilynne at 7:21 AM on October 19, 2022 [5 favorites]
I know a pediatrician who was fired for demanding more time with her patients. The private hospital group who employed her also owned all of the hospitals in the adjacent communities (she's in a small town in Texas) so it took her more than a year to find another job within an hour's drive of her home.
On average, the group she worked for expected her to see a new patient every 8 minutes.
posted by drstrangelove at 7:30 AM on October 19, 2022 [26 favorites]
On average, the group she worked for expected her to see a new patient every 8 minutes.
posted by drstrangelove at 7:30 AM on October 19, 2022 [26 favorites]
They also “don’t want to come across as horrible people,” she said.
Well, isn't that special.
I have been friends with many blind people over the years. Their stories are interesting. One described how his doctor suggested that, to slow down his degenerative eye disease, he ingest a literally toxic amount of vitamin A every day.
I remember hearing another friend gripe about having to go to the eye doctor. Is this a problem? I asked. Oh yes, she replied. Eye doctors hate blind people, because their reason for living is to fix eyes, and they can't fix mine. So they just go on autopilot, and ask me to do things that I literally don't know how to do. Last time the doctor told me to look up, which I can't do, and he got frustrated with me.
posted by Melismata at 7:34 AM on October 19, 2022 [26 favorites]
Well, isn't that special.
I have been friends with many blind people over the years. Their stories are interesting. One described how his doctor suggested that, to slow down his degenerative eye disease, he ingest a literally toxic amount of vitamin A every day.
I remember hearing another friend gripe about having to go to the eye doctor. Is this a problem? I asked. Oh yes, she replied. Eye doctors hate blind people, because their reason for living is to fix eyes, and they can't fix mine. So they just go on autopilot, and ask me to do things that I literally don't know how to do. Last time the doctor told me to look up, which I can't do, and he got frustrated with me.
posted by Melismata at 7:34 AM on October 19, 2022 [26 favorites]
Here in Ontario the average appointment time is 30 minutes too
I'm in Toronto and my doctor's standard appointment time with my family doctor is 15 minutes though there are also 30 minute slots for physicals or if there's something more complicated. Specialist appointments are often 30-60 minutes or even more. My mom's rheumatologist probably does a standard 60 and sometimes more.
But anyway, I don't think this is an "ontario" thing, I think this is a specific doctor's thing. Doctors in private practice (which my family doctor is) can run their practice however they see fit. My understanding is that family doctors in Ontario are paid based on the number of patients they have and then demographic/health info about patients (so they're paid more for older/sicker patients). But if there are 30 patients calling today who want to see the doctor, that's 16 minutes each, if you take no breaks an no non-patient-interaction time (no calling in prescriptions, no paperwork, no nothing). You either don't see them all, you see them less time or what? What else is the option? You take fewer patients....and then well let's talk about all the people with no family doctor.
posted by If only I had a penguin... at 7:38 AM on October 19, 2022 [2 favorites]
I'm in Toronto and my doctor's standard appointment time with my family doctor is 15 minutes though there are also 30 minute slots for physicals or if there's something more complicated. Specialist appointments are often 30-60 minutes or even more. My mom's rheumatologist probably does a standard 60 and sometimes more.
But anyway, I don't think this is an "ontario" thing, I think this is a specific doctor's thing. Doctors in private practice (which my family doctor is) can run their practice however they see fit. My understanding is that family doctors in Ontario are paid based on the number of patients they have and then demographic/health info about patients (so they're paid more for older/sicker patients). But if there are 30 patients calling today who want to see the doctor, that's 16 minutes each, if you take no breaks an no non-patient-interaction time (no calling in prescriptions, no paperwork, no nothing). You either don't see them all, you see them less time or what? What else is the option? You take fewer patients....and then well let's talk about all the people with no family doctor.
posted by If only I had a penguin... at 7:38 AM on October 19, 2022 [2 favorites]
"Fee for Service" in healthcare is just perverse incentives from top to bottom.
posted by DigDoug at 7:39 AM on October 19, 2022 [3 favorites]
posted by DigDoug at 7:39 AM on October 19, 2022 [3 favorites]
Let's keep the focus on problems people with disabilities face for a bit longer before we get into the issues with various medical systems at large, please.
posted by The corpse in the library at 7:46 AM on October 19, 2022 [64 favorites]
posted by The corpse in the library at 7:46 AM on October 19, 2022 [64 favorites]
(Just to cover the full range of ways to access paywalled content, here's a gift link.)
posted by box at 7:46 AM on October 19, 2022 [1 favorite]
posted by box at 7:46 AM on October 19, 2022 [1 favorite]
There are a lot of systemic factors that contribute to this. Insurance companies require coding that determines the level of payment. They also require documentation of certain components of the visit, like obtaining information from the patient, reviewing history, examination, complexity of the decision making that happened and the severity of the conditions that were diagnosed or considered in the process of coming to a diagnosis. Healthcare administrators read articles and go to conferences where they learn ways to maximize revenue within the system set up by the insurance companies. This includes setting up operations and incentive programs to maximize the number of patients seen. Electronic medical records companies design their product to meet the implied demands of the insurance companies with less hassle. Physicians also read articles and go to conferences and hear how changes in what they do can get them more money without having to do as much work.
Providers also have the same sorts of individual prejudices others have. The education process may be a bit more enlightened and also seems to be improving over time, but they are people and susceptible to their own discomfort with body features and behaviors that differ from what they are familiar with. Some may blame the victims of bad fortune or circumstances. In realizing that a patient with more needs is going to cause more stress at work with less pay than the average patient, some will look for excuses not to assist that patient.
Finally, people with disabilities and other complex patients often have other systemic problems that limit the effectiveness of provider interventions or make it more difficult to determine the correct intervention. I’ll give a simple example. A homeless patient with diabetes has much less control over their food and may have much more difficulty managing to take blood sugars and work with a regimen of pills and shots. Getting an effective treatment in that situation takes a lot more work on the provider’s part.
Sorry about all the grim observations. As for suggestions to help the situation, insulating providers from complex billing systems that require more thought and encourage a game mentality. Emphasizing a culture of respect for people in different circumstances. Decrease inequality.
posted by Emmy Noether at 7:51 AM on October 19, 2022 [11 favorites]
Providers also have the same sorts of individual prejudices others have. The education process may be a bit more enlightened and also seems to be improving over time, but they are people and susceptible to their own discomfort with body features and behaviors that differ from what they are familiar with. Some may blame the victims of bad fortune or circumstances. In realizing that a patient with more needs is going to cause more stress at work with less pay than the average patient, some will look for excuses not to assist that patient.
Finally, people with disabilities and other complex patients often have other systemic problems that limit the effectiveness of provider interventions or make it more difficult to determine the correct intervention. I’ll give a simple example. A homeless patient with diabetes has much less control over their food and may have much more difficulty managing to take blood sugars and work with a regimen of pills and shots. Getting an effective treatment in that situation takes a lot more work on the provider’s part.
Sorry about all the grim observations. As for suggestions to help the situation, insulating providers from complex billing systems that require more thought and encourage a game mentality. Emphasizing a culture of respect for people in different circumstances. Decrease inequality.
posted by Emmy Noether at 7:51 AM on October 19, 2022 [11 favorites]
I appreciate that the short appointments and profit-driven health care are factors, but some of the quotes from the actual paper point to just plain discrimination (or believing every dumb thing you saw on Facebook):
"We’ve gotten to a point in society where a lot of people are wanting some form of accommodation and a lot are illegitimate. They want their pet peacock on the airplanes and whatnot, and it makes it very difficult."
"I truthfully think the [Americans with Disabilities] Act makes the disabled person more of a target and doesn’t help them but hurts them. Because a lot of us, me personally, are afraid to treat them…so I look at it as not [a] helpful act, but I look at it as a hurtful act. Because all of us, even in this discussion, well, we are afraid of this, we’re afraid of that. …You just don’t want to deal with them, and that’s what the [ADA] is all about."
posted by Is It Over Yet? at 7:54 AM on October 19, 2022 [18 favorites]
"We’ve gotten to a point in society where a lot of people are wanting some form of accommodation and a lot are illegitimate. They want their pet peacock on the airplanes and whatnot, and it makes it very difficult."
"I truthfully think the [Americans with Disabilities] Act makes the disabled person more of a target and doesn’t help them but hurts them. Because a lot of us, me personally, are afraid to treat them…so I look at it as not [a] helpful act, but I look at it as a hurtful act. Because all of us, even in this discussion, well, we are afraid of this, we’re afraid of that. …You just don’t want to deal with them, and that’s what the [ADA] is all about."
posted by Is It Over Yet? at 7:54 AM on October 19, 2022 [18 favorites]
So getting back to people with disabilities thing (thanks, corpse in the library. you're right...sorry to have contributed to derail)...what would it take to fix this? Because I'm thinking that I don't know if I've ever seen anyone in a wheelchair at my doctor's office. I have no idea if she has patients in wheelchairs, but I'm thinking if she does, I can see how it would be hard -- the scale wouldn't accommodate them. It would be difficulty to get on the exam table.
But what's the solution? Should every doctor's office have height adjustable exam tables and scales that can accommodate wheelchairs? That seems like a huge investment individual practices would have to make and most would probably not see that many people in wheelchairs even if they weren't discriminating against them. My back of the envelope based on a quick lookup of proportion of the people who use wheelchairs and the number of patients the average family doctor has say that the average family doctor might have 24 patients in wheelchairs, in the absence of discrimination. So figure maybe 50 visits a year? But ok, there are 5 or 6 doctors in my doctor's practice...so 300 visits a year? So yeah...I came around mid-paragraph...they should have those accommodations. I don't know about doctors in solo practice where there would be fewer visits and the investment would not be shared, but a clinic or shared practice...maybe they should just be required to have those things. If they're required to HAVE them, and they GET them, it seems like the incentive to discriminate largely disappears.
posted by If only I had a penguin... at 7:59 AM on October 19, 2022 [7 favorites]
But what's the solution? Should every doctor's office have height adjustable exam tables and scales that can accommodate wheelchairs? That seems like a huge investment individual practices would have to make and most would probably not see that many people in wheelchairs even if they weren't discriminating against them. My back of the envelope based on a quick lookup of proportion of the people who use wheelchairs and the number of patients the average family doctor has say that the average family doctor might have 24 patients in wheelchairs, in the absence of discrimination. So figure maybe 50 visits a year? But ok, there are 5 or 6 doctors in my doctor's practice...so 300 visits a year? So yeah...I came around mid-paragraph...they should have those accommodations. I don't know about doctors in solo practice where there would be fewer visits and the investment would not be shared, but a clinic or shared practice...maybe they should just be required to have those things. If they're required to HAVE them, and they GET them, it seems like the incentive to discriminate largely disappears.
posted by If only I had a penguin... at 7:59 AM on October 19, 2022 [7 favorites]
One angle would be to have more doctors and nurses. Reduce the costs of education, value HC workers more.
Doctor here. There are far more qualified med school applicants than there are training spots. Medical school is prohibitively expensive (even in Canada) and there is a lot of pressure and stress about making that money back, especially if you don't come from money or start training later in life - ask me how I know.
We should be training twice as many physicians, paying their tuition for them, and paying them half as much when they graduate. No exaggeration. Anyone who isn't interested in being a doctor because they'll only make $150k instead of $300k - go with God, we don't need you.
posted by saturday_morning at 8:09 AM on October 19, 2022 [84 favorites]
Doctor here. There are far more qualified med school applicants than there are training spots. Medical school is prohibitively expensive (even in Canada) and there is a lot of pressure and stress about making that money back, especially if you don't come from money or start training later in life - ask me how I know.
We should be training twice as many physicians, paying their tuition for them, and paying them half as much when they graduate. No exaggeration. Anyone who isn't interested in being a doctor because they'll only make $150k instead of $300k - go with God, we don't need you.
posted by saturday_morning at 8:09 AM on October 19, 2022 [84 favorites]
>Insurance companies require coding that determines the level of payment.
Exactly the same perverse incentives occur in the public health system in Australia - hospitals and family GPs are reimbursed on a piecemeal basis depending on what procedures were billed.
I've posted before about a family member who practices "5 minute medicine" and clears each patient within 5 minutes on average. He says many doctors hate it and leave this kind of work, preferring to move to another location and work in an environment where they can see patients for 15 minutes or 30 minutes at a time. But it's a very underserved community: his clinic with 4 doctors turns down 50 requests for appointments per day. So from his pragmatic point of view, he believes he's doing the most good for the community staying where he is and keeping appointments to 5 minutes at a time.
If the issue is that "billing codes don't reimburse enough for disabled patients" the solution is easy - write up a schedule of higher cost billing codes for disabled patients, and you only get to bill those codes if your premises is certified to accommodate those disabilities (wheelchair ramps, examination tables, scales, etc)
If the issue is that there simply aren't enough doctors, well that's an entirely different topic and has nothing to do with disabled patients, but one which is very hard to solve because the people in power already have access to good healthcare, most of all, the doctors themselves who run the medical boards and certification bodies that regulate how many doctors are allowed to graduate this year... there's another perverse incentive right there, since if you're the owner of a monopoly you have every incentive to restrict supply (in the name of safety, of course)
posted by xdvesper at 8:11 AM on October 19, 2022 [5 favorites]
Exactly the same perverse incentives occur in the public health system in Australia - hospitals and family GPs are reimbursed on a piecemeal basis depending on what procedures were billed.
I've posted before about a family member who practices "5 minute medicine" and clears each patient within 5 minutes on average. He says many doctors hate it and leave this kind of work, preferring to move to another location and work in an environment where they can see patients for 15 minutes or 30 minutes at a time. But it's a very underserved community: his clinic with 4 doctors turns down 50 requests for appointments per day. So from his pragmatic point of view, he believes he's doing the most good for the community staying where he is and keeping appointments to 5 minutes at a time.
If the issue is that "billing codes don't reimburse enough for disabled patients" the solution is easy - write up a schedule of higher cost billing codes for disabled patients, and you only get to bill those codes if your premises is certified to accommodate those disabilities (wheelchair ramps, examination tables, scales, etc)
If the issue is that there simply aren't enough doctors, well that's an entirely different topic and has nothing to do with disabled patients, but one which is very hard to solve because the people in power already have access to good healthcare, most of all, the doctors themselves who run the medical boards and certification bodies that regulate how many doctors are allowed to graduate this year... there's another perverse incentive right there, since if you're the owner of a monopoly you have every incentive to restrict supply (in the name of safety, of course)
posted by xdvesper at 8:11 AM on October 19, 2022 [5 favorites]
This is an interesting issue, but not a great article. There are upwards of a million healthcare providers in the US. Each of us reads this and likely pictures their own primary physician, or maybe the dermatologist they see a few times a year. The article indicates a whopping 30 doctors, who might have been cosmetic surgeons, podiatrists, radiation oncologists, orthopedic surgeons, psychiatrists, participated , and discussed the difficulties that they have with patients who have disabilities. A psychiatrist will likely have more difficulties with a deaf patient than with an obese patient; a radiation oncologist will have more problems with a patient who can't leave a wheelchair than a podiatrist will. That doesn't mean that those providers treat all disabilities as an equal burden to their practices.
What this issue really needs is an actual deep dive into what disabled patients feel are the biggest obstacles to equitable healthcare , and what practical forms reform could take.
Healthcare is expensive, and time is money. It shouldn't be hard to see that any circumstance that makes a visit take longer, or be more difficult to accomplish, is going to put stress on a practice and seem suboptimal. Using a small sample focus group to pen a rage-filter article just seems like a way to get page-views not actually say anything meaningful.
posted by OHenryPacey at 8:52 AM on October 19, 2022 [7 favorites]
What this issue really needs is an actual deep dive into what disabled patients feel are the biggest obstacles to equitable healthcare , and what practical forms reform could take.
Healthcare is expensive, and time is money. It shouldn't be hard to see that any circumstance that makes a visit take longer, or be more difficult to accomplish, is going to put stress on a practice and seem suboptimal. Using a small sample focus group to pen a rage-filter article just seems like a way to get page-views not actually say anything meaningful.
posted by OHenryPacey at 8:52 AM on October 19, 2022 [7 favorites]
It's definitely fair to recenter the conversation on disabled people and I do apologize if my attempts to sympathize with rushed, indifferent care overly focused on billing came off as derail.
There's a fine line between noting that disabled people are particular victims of a system-wide issue and pulling back the focus until they drop out of the conversation.
The article itself wasn't maybe as deep a dive as would have provided easier launching points to maintain that focus, but it's still important to do.
(Section 504 was critical to me returning to and finishing college, so I don't take any of this lightly.)
posted by DirtyOldTown at 9:16 AM on October 19, 2022 [7 favorites]
There's a fine line between noting that disabled people are particular victims of a system-wide issue and pulling back the focus until they drop out of the conversation.
The article itself wasn't maybe as deep a dive as would have provided easier launching points to maintain that focus, but it's still important to do.
(Section 504 was critical to me returning to and finishing college, so I don't take any of this lightly.)
posted by DirtyOldTown at 9:16 AM on October 19, 2022 [7 favorites]
If nothing else I hope people take away from this thread that whatever your current level of bodily functioning, you have to protect it with every self-preservation instinct you can muster. Don't let other people take it from you. Protect yourselves, please.
posted by bleep at 9:21 AM on October 19, 2022 [3 favorites]
posted by bleep at 9:21 AM on October 19, 2022 [3 favorites]
A gentle reminder that, even if you are able-bodied right now, if you are fortunate enough to live a long life, you will not always be. Many of us will use wheelchairs in our later years. Many of us will lose our hearing and/or our sight. Many of us will develop dementia. Even if you are unable to find a shred of sympathy for disabled folks, your own selfishness should mean that you want your doctor's office to be able to care for you when (not if, but when) something goes wrong with your body and you find yourself in need of the ADA (or applicable disability accommodation where you live).
posted by hydropsyche at 9:38 AM on October 19, 2022 [31 favorites]
posted by hydropsyche at 9:38 AM on October 19, 2022 [31 favorites]
The irony of our health care system is that it's designed only for some statistically average person (that doesn't exist). That it is also for-profit is not a coincidence.
posted by tommasz at 9:38 AM on October 19, 2022 [7 favorites]
posted by tommasz at 9:38 AM on October 19, 2022 [7 favorites]
Finally, people with disabilities and other complex patients often have other systemic problems that limit the effectiveness of provider interventions or make it more difficult to determine the correct intervention. I’ll give a simple example. A homeless patient with diabetes has much less control over their food and may have much more difficulty managing to take blood sugars and work with a regimen of pills and shots. Getting an effective treatment in that situation takes a lot more work on the provider’s part.
Ding ding ding. There are a lot of systemic reasons for this finding--and yes, unsurprisingly, individual ableism is one of them--but I think that one of the deepest problems here is that doctors do not like having to handle patients whose problems are genuinely difficult, for which no obvious medical solution may be readily available. It is uncomfortable for someone who is used to being treated as an expert to have to admit that there are things they are not sure how to handle. It sucks to see a patient, note that they are doing all the obvious things you can initially think to try, and struggle to think of new ways to try and fix the problem. It makes people feel uncomfortable, and it's very common for people to handle that feeling of discomfort by dumping it back on the patient who "made" them feel like that.
You can actually see this particular manifestation of ableism tying neatly into obesity panic: obesity is framed as a common medical problem that doctors need to "fix" in patients, but from both observation (many people asked to change their weight do not) and from the published literature, "fixing" obesity and returning bodies to a set BMI range is extremely difficult. It's easy to admonish patients to do certain things that don't work, and the repeated "failures" to "fix" the problem, combined with outlooks that assume a certain level of hostility between doctors and patients, quickly create horrible quagmires that fat patients in particular get stuck in.
Now, add to this that medical training environments are intensely ableist in both passive and active ways: medical training departments are often resistant to students with any kind of accommodation needs, and the culture of long, long hours without pause, break, or restructure is difficult to survive with disabilities. Where disabled medical professionals exist, they're almost always people who become disabled after they have completed medical training. It is really hard to change cultures when there are structural issues that strong at the roots of whole professions.
I don't necessarily have a lot more respect for doctors who are guiltily going "no, person with a difficult problem, go the fuck away so I can deal with people I can actually fix" given the lens of that systemic issue, but I do think it's important to realize why systemic issues like this keep cropping up if we're ever going to do anything about fixing them.
posted by sciatrix at 9:38 AM on October 19, 2022 [28 favorites]
Ding ding ding. There are a lot of systemic reasons for this finding--and yes, unsurprisingly, individual ableism is one of them--but I think that one of the deepest problems here is that doctors do not like having to handle patients whose problems are genuinely difficult, for which no obvious medical solution may be readily available. It is uncomfortable for someone who is used to being treated as an expert to have to admit that there are things they are not sure how to handle. It sucks to see a patient, note that they are doing all the obvious things you can initially think to try, and struggle to think of new ways to try and fix the problem. It makes people feel uncomfortable, and it's very common for people to handle that feeling of discomfort by dumping it back on the patient who "made" them feel like that.
You can actually see this particular manifestation of ableism tying neatly into obesity panic: obesity is framed as a common medical problem that doctors need to "fix" in patients, but from both observation (many people asked to change their weight do not) and from the published literature, "fixing" obesity and returning bodies to a set BMI range is extremely difficult. It's easy to admonish patients to do certain things that don't work, and the repeated "failures" to "fix" the problem, combined with outlooks that assume a certain level of hostility between doctors and patients, quickly create horrible quagmires that fat patients in particular get stuck in.
Now, add to this that medical training environments are intensely ableist in both passive and active ways: medical training departments are often resistant to students with any kind of accommodation needs, and the culture of long, long hours without pause, break, or restructure is difficult to survive with disabilities. Where disabled medical professionals exist, they're almost always people who become disabled after they have completed medical training. It is really hard to change cultures when there are structural issues that strong at the roots of whole professions.
I don't necessarily have a lot more respect for doctors who are guiltily going "no, person with a difficult problem, go the fuck away so I can deal with people I can actually fix" given the lens of that systemic issue, but I do think it's important to realize why systemic issues like this keep cropping up if we're ever going to do anything about fixing them.
posted by sciatrix at 9:38 AM on October 19, 2022 [28 favorites]
I remember hearing another friend gripe about having to go to the eye doctor. Is this a problem? I asked. Oh yes, she replied. Eye doctors hate blind people, because their reason for living is to fix eyes, and they can't fix mine. So they just go on autopilot, and ask me to do things that I literally don't know how to do. Last time the doctor told me to look up, which I can't do, and he got frustrated with me.
Not legally blind, but low vision and can confirm that if it's not a problem with an immediate fix they just don't want to know. Yes, I can make out that letter on that line. It takes me several minutes and leaves me with a debilitating headache that might last for days, but all they put in my chart is that I can make out that letter on that line.
posted by The Underpants Monster at 10:21 AM on October 19, 2022 [17 favorites]
Not legally blind, but low vision and can confirm that if it's not a problem with an immediate fix they just don't want to know. Yes, I can make out that letter on that line. It takes me several minutes and leaves me with a debilitating headache that might last for days, but all they put in my chart is that I can make out that letter on that line.
posted by The Underpants Monster at 10:21 AM on October 19, 2022 [17 favorites]
In general, for good care, patients are inevitably required to be assertive in advocating for their health care, as well as being active participants. This burden is greatly increased for disabled people to the point that we very often get considerably less/worse health care than the abled. And that's not even including all the active ableism described in the article and this thread.
Also, women in particular are treated much worse by physicians than men, especially with regard to listening, taking them seriously, allowing them to be active participants in their health care. This is also true about people of color. When you add being disabled to all of that, I think it's obvious that many disabled people are getting very substandard care.
Relative to other people I'm fairly privileged and so, overall, I don't experience the worst of this. My doctors have, without exception, taken me seriously (as someone with a genetic condition) my entire life. They accept that I know more about this extraordinarily rare skeletal dysplasia than they do; they've always looked to me for my thoughts on treatment. I'm not yet in a wheelchair (though observation of the progression in my family indicates that I likely will be in a wheelchair in about 12 years or so) and therefore I've not experienced that particular discrimination described in the article.
All that said — that I've not experienced the worse or even much of what's being discussed — if I think about it I can identify numerous ways in which ableism of one sort or another has reduced the quality of my health care.
In particular, being mobility impaired and in varying levels of constant pain — pain which is greatly exacerbated by any activity — I don't leave home very much because, frankly, it's just so fucking exhausting. Constant pain is exhausting, facing the unceasing difficulty of doing everyday things is exhausting, and the spoon metaphor is in play: not only do I have no spoons left, I'm often operating on a deficit. So just going to the goddamn doctor is a difficult undertaking and thus I avoid it. And not just doctor visits, but lab work and the like. I have seven different prescriptions which must be maintained, three of them critical to my health, and doctors (and/or insurers) dislike renewing prescriptions without "regular" visits so every now and then I go without even though it's dangerous for my health.
When I do see the doctor, yeah, 15 minutes is insufficient. As it happens, probably because of my privilege, I almost always go long, at least 25 and often up to an hour. Frankly, it makes me uncomfortable and I feel guilty about it, because I know they're rushed and everything — I worry about some other patient being shortchanged in time because of me.
And, in the end, I'm not sure how much difference it makes because, basically, how much effective treatment I get really ends up being dependent upon how much I'm willing to work at it: be assertive, proactive, pursue possible treatment options including multiple surgeries (primarily joint replacements, which are a big deal), get frequent x-rays and lab work to diagnose developing issues and discover numerous other, less-common-but-possible things like ear, eye, heart, and spinal issues relating to my defective collagen that could range from nuisance to life-threatening, do unpleasant and painful exhausting physical therapy to maintain or improve range-of-motion. All of this, obviously, involves making appointments, leaving the house a lot. I haven't mentioned my other disability, a lifelong depressive disorder, but that really screws all this up, too, along with needing its own healthcare attention. You can see where I'm going with this: this has long been just too much for me; I don't have anyone like a spouse to assist on a daily basis (unlike my sister), and so I just don't do any of this. Instead, I simply live with constantly increasing pain and decreasing mobility whuch means I'm more and more isolated.
To be fair, unlike me my sister has always been more proactive, she has four artificial joints and an additional four other corrective surgeries, regularly sees a PCP and three specialists, has an incredibly supportive husband, and is ten years younger than I am, and nevertheless these days she spends almost all her day in bed, just as I do. So, to be entirely honest with you guys and myself, I'm not actually convinced that if I were to do all that stuff, I'd truly be much better off.
Those of us who are disabled try to talk about disability and ableism on this site from time to time, and we usually focus on all the ableism we experience generally out in the world and from our friends and family. It's a lot. It's exhausting and we who are disabled have to struggle every day just to live our lives — and that's without even accounting for all the difficulties with health care we're talking about now.
It's perverse, really, that the disabled face ableism in our health care when it's so centrally important for many of us. Ableism in health care has a compounding negative effect.
Thus, consider for a moment my experiences described above and then recall that with all my privilege, ableism in health care for most other disabled people is much more difficult to traverse than even it is for me.
posted by Ivan Fyodorovich at 11:41 AM on October 19, 2022 [37 favorites]
Also, women in particular are treated much worse by physicians than men, especially with regard to listening, taking them seriously, allowing them to be active participants in their health care. This is also true about people of color. When you add being disabled to all of that, I think it's obvious that many disabled people are getting very substandard care.
Relative to other people I'm fairly privileged and so, overall, I don't experience the worst of this. My doctors have, without exception, taken me seriously (as someone with a genetic condition) my entire life. They accept that I know more about this extraordinarily rare skeletal dysplasia than they do; they've always looked to me for my thoughts on treatment. I'm not yet in a wheelchair (though observation of the progression in my family indicates that I likely will be in a wheelchair in about 12 years or so) and therefore I've not experienced that particular discrimination described in the article.
All that said — that I've not experienced the worse or even much of what's being discussed — if I think about it I can identify numerous ways in which ableism of one sort or another has reduced the quality of my health care.
In particular, being mobility impaired and in varying levels of constant pain — pain which is greatly exacerbated by any activity — I don't leave home very much because, frankly, it's just so fucking exhausting. Constant pain is exhausting, facing the unceasing difficulty of doing everyday things is exhausting, and the spoon metaphor is in play: not only do I have no spoons left, I'm often operating on a deficit. So just going to the goddamn doctor is a difficult undertaking and thus I avoid it. And not just doctor visits, but lab work and the like. I have seven different prescriptions which must be maintained, three of them critical to my health, and doctors (and/or insurers) dislike renewing prescriptions without "regular" visits so every now and then I go without even though it's dangerous for my health.
When I do see the doctor, yeah, 15 minutes is insufficient. As it happens, probably because of my privilege, I almost always go long, at least 25 and often up to an hour. Frankly, it makes me uncomfortable and I feel guilty about it, because I know they're rushed and everything — I worry about some other patient being shortchanged in time because of me.
And, in the end, I'm not sure how much difference it makes because, basically, how much effective treatment I get really ends up being dependent upon how much I'm willing to work at it: be assertive, proactive, pursue possible treatment options including multiple surgeries (primarily joint replacements, which are a big deal), get frequent x-rays and lab work to diagnose developing issues and discover numerous other, less-common-but-possible things like ear, eye, heart, and spinal issues relating to my defective collagen that could range from nuisance to life-threatening, do unpleasant and painful exhausting physical therapy to maintain or improve range-of-motion. All of this, obviously, involves making appointments, leaving the house a lot. I haven't mentioned my other disability, a lifelong depressive disorder, but that really screws all this up, too, along with needing its own healthcare attention. You can see where I'm going with this: this has long been just too much for me; I don't have anyone like a spouse to assist on a daily basis (unlike my sister), and so I just don't do any of this. Instead, I simply live with constantly increasing pain and decreasing mobility whuch means I'm more and more isolated.
To be fair, unlike me my sister has always been more proactive, she has four artificial joints and an additional four other corrective surgeries, regularly sees a PCP and three specialists, has an incredibly supportive husband, and is ten years younger than I am, and nevertheless these days she spends almost all her day in bed, just as I do. So, to be entirely honest with you guys and myself, I'm not actually convinced that if I were to do all that stuff, I'd truly be much better off.
Those of us who are disabled try to talk about disability and ableism on this site from time to time, and we usually focus on all the ableism we experience generally out in the world and from our friends and family. It's a lot. It's exhausting and we who are disabled have to struggle every day just to live our lives — and that's without even accounting for all the difficulties with health care we're talking about now.
It's perverse, really, that the disabled face ableism in our health care when it's so centrally important for many of us. Ableism in health care has a compounding negative effect.
Thus, consider for a moment my experiences described above and then recall that with all my privilege, ableism in health care for most other disabled people is much more difficult to traverse than even it is for me.
posted by Ivan Fyodorovich at 11:41 AM on October 19, 2022 [37 favorites]
Here's the paper linked from the news article-- seems to be open access. Also the summary includes a breakdown of the physicians interviewed with demographic information (behold majority older white dudes).
posted by travertina at 11:59 AM on October 19, 2022 [5 favorites]
posted by travertina at 11:59 AM on October 19, 2022 [5 favorites]
The NYT article links to the original paper, ‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities’ in Health Affairs, which cites “physical inaccessibility of care settings;inadequate accommodations for communication needs; and pervasive ableism in medicine,including physicians’ implicit and explicit biases, attitudes, and behavior toward people with disabilities” as some bariers to appropriate health care for people with disabilities. One of its conclusions is that “[p]hysicians’ biases and discriminatory attitudes appear to play a significant role in perpetuating health disparities for people with disabilities.”
This tracks with my experience. There are lots of reasons people could find, like the system factors many have focused on, but at the core, and the explanation for these more distal responses, are discrimination and abelism.
The original article is open access, and gives a bit more context and information than the NYT or Boston Globe articles that covered it. I found it well done – thanks for posting the topic! A small pony request, could the original scientific papers be included in posts like this, rather than just the reporting on them?
(On preview, thanks travertina for also finding and linking the study!)
posted by narcissus_and_ambrosia at 12:07 PM on October 19, 2022 [11 favorites]
This tracks with my experience. There are lots of reasons people could find, like the system factors many have focused on, but at the core, and the explanation for these more distal responses, are discrimination and abelism.
The original article is open access, and gives a bit more context and information than the NYT or Boston Globe articles that covered it. I found it well done – thanks for posting the topic! A small pony request, could the original scientific papers be included in posts like this, rather than just the reporting on them?
(On preview, thanks travertina for also finding and linking the study!)
posted by narcissus_and_ambrosia at 12:07 PM on October 19, 2022 [11 favorites]
Wow the original paper is even more depressing. Quote below is itself a quote from one of the physicians:
"I think we can make a strong argument for some of these [accommodations].The problem with that is, we already know there are tons of barriers to access for these patients to come in to begin with, so fewer of them come in than probably need to come in, and because very few come in, so it’s hard to make the argument to bring these things to bear for one or two patients."
posted by travertina at 12:19 PM on October 19, 2022 [7 favorites]
"I think we can make a strong argument for some of these [accommodations].The problem with that is, we already know there are tons of barriers to access for these patients to come in to begin with, so fewer of them come in than probably need to come in, and because very few come in, so it’s hard to make the argument to bring these things to bear for one or two patients."
posted by travertina at 12:19 PM on October 19, 2022 [7 favorites]
Oh, that's sound reasoning.
posted by Ivan Fyodorovich at 12:39 PM on October 19, 2022 [7 favorites]
posted by Ivan Fyodorovich at 12:39 PM on October 19, 2022 [7 favorites]
As a partially-disabled person who can manage a lot of the requirements for care but still has overall disability issues, this article is unsurprising and depressing. One of the best things that's happened to me in the last few years is that my GP referred me to a teaching hospital for my autoimmune problems. For a research faculty member, the idea that I'm an interesting case is less threatening than it might be for the rest of the medical universe.
Hopping back to the intersection of cost and medical care, another issue that I've encountered personally with doctors and disability is that the US profit-driven health care system really seems to focus on metrics (reduce weight by x amount/%, bring down cholesterol, etc.) in ways that disabled bodies struggle to do even more than abled bodies and without reference to quality of life. I'm certain there are financial incentives there just as there are financial incentives in general wellness programs run by insurance companies.
I had to ditch one GP about 10 years ago for pressing too hard for me to take a drug that significantly reduced my quality of life without showing any real improvement on the metric she wanted me to fix. I'm old enough and privileged enough to have confidence and assertively push back or leave a practice when a doctor screws me over. I worry about patients who lack my resources and have to deal with doctors who are more interested in meeting their numbers than in solving their patients' medical problems and concerns.
posted by gentlyepigrams at 1:27 PM on October 19, 2022 [6 favorites]
Hopping back to the intersection of cost and medical care, another issue that I've encountered personally with doctors and disability is that the US profit-driven health care system really seems to focus on metrics (reduce weight by x amount/%, bring down cholesterol, etc.) in ways that disabled bodies struggle to do even more than abled bodies and without reference to quality of life. I'm certain there are financial incentives there just as there are financial incentives in general wellness programs run by insurance companies.
I had to ditch one GP about 10 years ago for pressing too hard for me to take a drug that significantly reduced my quality of life without showing any real improvement on the metric she wanted me to fix. I'm old enough and privileged enough to have confidence and assertively push back or leave a practice when a doctor screws me over. I worry about patients who lack my resources and have to deal with doctors who are more interested in meeting their numbers than in solving their patients' medical problems and concerns.
posted by gentlyepigrams at 1:27 PM on October 19, 2022 [6 favorites]
Let's keep the focus on problems people with disabilities face for a bit longer before we get into the issues with various medical systems at large, please.
If people here haven't read Alice Wong's My ICU Summer: A Photo Essay, it's very much worth your time, and it's highly relevant to the discussion here (it was posted to Metafilter a little while back).
posted by mandolin conspiracy at 1:27 PM on October 19, 2022 [8 favorites]
If people here haven't read Alice Wong's My ICU Summer: A Photo Essay, it's very much worth your time, and it's highly relevant to the discussion here (it was posted to Metafilter a little while back).
posted by mandolin conspiracy at 1:27 PM on October 19, 2022 [8 favorites]
I'm physically disabled, fat, and sex-variant. I feel like cis, abled, white people have similar attitudes toward doctors that they tend to have toward the police. They have faith that these are laudable people who will, in their hours of need, bring their remarkable skillsets to bear to rescue them. And in times of minor need--they need driving directions, or have a scratchy throat--they can casually call upon them and receive quick and competent help.
In fact, both police officers and doctors are people given a huge amount of power over lifechanging--and sometimes life-ending--decisions. And while there are lots of policies and procedures around this, both are expected to rely on their "gut"--a supposedly-well-honed professional intuition--that is in reality strongly shaped by social biases. Further, a subset of the people both careers attract are in large part driven by a will to power, and within their institutions, this is often an asset to their careers, but a detriment to some of those under their authority.
I was nearly killed by a surgeon who was ranked one of the best in my state, because he despised me. He was a famous ob/gyn surgeon, and also famously conservative and Catholic. He did not perform abortions; he only performed hysterectomies for diagnosed uterine disorders, on women married to men who had tried to conceive for multiple years without success--and required the testimony of the husband that the couple had used no birth control. His attitude when I was in the room with him was sneering distate, but everyone said he was the best and that I was lucky to have him as my surgeon. He removed my nonstandard intersex internal reproductive organs, using a giant classic abdominal incision, then discharged me 10 hours later, not the 2-3 days I'd been told I'd be in the hospital, without even speaking to me. And I presume he wasn't very careful about the whole surgery, because by the time I got home, I was already running a fever and feeling extremely ill. I tried to call the surgeon to report this; he spoke at me for 20 seconds, only to tell me that "surgery is supposed to hurt and you can't have more pain medication." I hadn't asked for more pain medication, but he hung up. By the next morning my fever was high and I was obviously in serious trouble, so I had to get someone to take me to the ER. I had a raging MRSA infection; I nearly died; I needed two repair surgeries; I wasn't free of the infection for a year and a half.
At the required 3 month follow-up, the surgeon saw me for at most 5 minutes. He said I had probably given myself the infection with improper hygiene but that he would (magnanimously) write me a doctor's excuse note for the extra weeks of missed work if I wanted. I did not want. I wanted out of the appointment.
This is a story that illustrates, not the problems of being turned away by doctors who don't want to figure out how to get a mobility-impaired person up onto an exam table, but the problems that occur when people with marginalized body types DO access care. Because these are interactions in which our health is at risk, and the person with the power in the interaction can withhold care that would help, and impose "treatments" that harm.
Most of the intersex people I know live with the sequelae of medical trauma. We are all doctor-avoidant, because we've had our bodies gawped at and put on display in medical settings. We've grown up having our genitals pawed at over and over without our consent. We've had hospital staff come by to take photos of our bodies while we are lying in the ER after an accident. We've experienced stares of fascination and disgust that are no different from those people with atypical bodies experienced in the freak shows of prior eras, if limited to a medical setting.
And yes--we may also have encountered plenty of caring medical staff, well-intentioned doctors, people who have treated us respectfully. But we haven't had the opportunity to be naive about the power doctors have, and how they can use it to harm people with marginalized body types.
As others have noted, doctors are used to being treated as, and feeling like, the experts in the room, with the miraculous power to save people with their arcane knowledge. And so they are often uncomfortable with people they can't "fix"--those of us with permanent disabilities. Moreover, they are often enraged when they find themself in a room with a person who has a bodily status about which the doctor knows little, but the patient knows a great deal, having lived in their body their whole lives. I'm in that position a lot. It causes some doctors to defensively frame the patient's knowledge as proof of hypochondriasis--why would any "normal" person have done so much medical research, or use so much medical terminology? Or they want to reassert dominance over you, treating each of your suggestions as a power play in your treatment plan that they should fight. They want to put you in your place. You are not on par with a doctor! In fact, you are lesser even than an ordinary patient.
And that's the fundamental problem. Doctors are not more enlightened than the general populace when it comes to issues of bias. They get a single desultory course on cultural competence in medical school, which is constantly being pooh-poohed, and in which they are often just taught a series of stereotypes. "Hispanic women disproportionately vocalize their pain" [so don't pay much attention to their cries]; "Promiscuity is common among gay men" [and that's something this textbook takes a judgy tone toward]. That's how you get doctors in the focus groups reported on here feeling comfortable coming out and claiming, as Is It Over Yet? notes, that the ADA is actually a bad thing because it makes doctors feel afraid of committing malpractice and thus avoidant of disabled patients. Because doctors should apparently feel more comfortable committing malpractice on disabled patients? Well, we've gone too far, and coddled disabled people are allowed to bring pet peacocks on planes! Roll that ADA back!
Look: the fact is that Black pregnant people die at much higher rates than Anglo white ones due to racism--and a substantial part of that racism is being implemented in care decisions by doctors. You name a bias, and doctors are no less likely to hold it than people in other professions: colorism, fatphobia, transphobia, ableism. The difference between doctors and laypeople is that--like the police--doctors are empowered to manifest their biases in ways that can kill a person. That means that for folks with marginalized bodies, every encounter with a doctor carries the risk of making our lives worse, not better. We're stuck with an ironic battle where it can be hard to get a doctor to see us--but the risks involved if they do see us make the whole endeavor a real gamble.
posted by DrMew at 2:03 PM on October 19, 2022 [47 favorites]
In fact, both police officers and doctors are people given a huge amount of power over lifechanging--and sometimes life-ending--decisions. And while there are lots of policies and procedures around this, both are expected to rely on their "gut"--a supposedly-well-honed professional intuition--that is in reality strongly shaped by social biases. Further, a subset of the people both careers attract are in large part driven by a will to power, and within their institutions, this is often an asset to their careers, but a detriment to some of those under their authority.
I was nearly killed by a surgeon who was ranked one of the best in my state, because he despised me. He was a famous ob/gyn surgeon, and also famously conservative and Catholic. He did not perform abortions; he only performed hysterectomies for diagnosed uterine disorders, on women married to men who had tried to conceive for multiple years without success--and required the testimony of the husband that the couple had used no birth control. His attitude when I was in the room with him was sneering distate, but everyone said he was the best and that I was lucky to have him as my surgeon. He removed my nonstandard intersex internal reproductive organs, using a giant classic abdominal incision, then discharged me 10 hours later, not the 2-3 days I'd been told I'd be in the hospital, without even speaking to me. And I presume he wasn't very careful about the whole surgery, because by the time I got home, I was already running a fever and feeling extremely ill. I tried to call the surgeon to report this; he spoke at me for 20 seconds, only to tell me that "surgery is supposed to hurt and you can't have more pain medication." I hadn't asked for more pain medication, but he hung up. By the next morning my fever was high and I was obviously in serious trouble, so I had to get someone to take me to the ER. I had a raging MRSA infection; I nearly died; I needed two repair surgeries; I wasn't free of the infection for a year and a half.
At the required 3 month follow-up, the surgeon saw me for at most 5 minutes. He said I had probably given myself the infection with improper hygiene but that he would (magnanimously) write me a doctor's excuse note for the extra weeks of missed work if I wanted. I did not want. I wanted out of the appointment.
This is a story that illustrates, not the problems of being turned away by doctors who don't want to figure out how to get a mobility-impaired person up onto an exam table, but the problems that occur when people with marginalized body types DO access care. Because these are interactions in which our health is at risk, and the person with the power in the interaction can withhold care that would help, and impose "treatments" that harm.
Most of the intersex people I know live with the sequelae of medical trauma. We are all doctor-avoidant, because we've had our bodies gawped at and put on display in medical settings. We've grown up having our genitals pawed at over and over without our consent. We've had hospital staff come by to take photos of our bodies while we are lying in the ER after an accident. We've experienced stares of fascination and disgust that are no different from those people with atypical bodies experienced in the freak shows of prior eras, if limited to a medical setting.
And yes--we may also have encountered plenty of caring medical staff, well-intentioned doctors, people who have treated us respectfully. But we haven't had the opportunity to be naive about the power doctors have, and how they can use it to harm people with marginalized body types.
As others have noted, doctors are used to being treated as, and feeling like, the experts in the room, with the miraculous power to save people with their arcane knowledge. And so they are often uncomfortable with people they can't "fix"--those of us with permanent disabilities. Moreover, they are often enraged when they find themself in a room with a person who has a bodily status about which the doctor knows little, but the patient knows a great deal, having lived in their body their whole lives. I'm in that position a lot. It causes some doctors to defensively frame the patient's knowledge as proof of hypochondriasis--why would any "normal" person have done so much medical research, or use so much medical terminology? Or they want to reassert dominance over you, treating each of your suggestions as a power play in your treatment plan that they should fight. They want to put you in your place. You are not on par with a doctor! In fact, you are lesser even than an ordinary patient.
And that's the fundamental problem. Doctors are not more enlightened than the general populace when it comes to issues of bias. They get a single desultory course on cultural competence in medical school, which is constantly being pooh-poohed, and in which they are often just taught a series of stereotypes. "Hispanic women disproportionately vocalize their pain" [so don't pay much attention to their cries]; "Promiscuity is common among gay men" [and that's something this textbook takes a judgy tone toward]. That's how you get doctors in the focus groups reported on here feeling comfortable coming out and claiming, as Is It Over Yet? notes, that the ADA is actually a bad thing because it makes doctors feel afraid of committing malpractice and thus avoidant of disabled patients. Because doctors should apparently feel more comfortable committing malpractice on disabled patients? Well, we've gone too far, and coddled disabled people are allowed to bring pet peacocks on planes! Roll that ADA back!
Look: the fact is that Black pregnant people die at much higher rates than Anglo white ones due to racism--and a substantial part of that racism is being implemented in care decisions by doctors. You name a bias, and doctors are no less likely to hold it than people in other professions: colorism, fatphobia, transphobia, ableism. The difference between doctors and laypeople is that--like the police--doctors are empowered to manifest their biases in ways that can kill a person. That means that for folks with marginalized bodies, every encounter with a doctor carries the risk of making our lives worse, not better. We're stuck with an ironic battle where it can be hard to get a doctor to see us--but the risks involved if they do see us make the whole endeavor a real gamble.
posted by DrMew at 2:03 PM on October 19, 2022 [47 favorites]
Mod note: Just hopping in to say, I am now on duty and will delete any deraily/noise comments from this point on. Please stop derailing the thread more than it already has been.
posted by travelingthyme (staff) at 3:19 PM on October 19, 2022 [4 favorites]
posted by travelingthyme (staff) at 3:19 PM on October 19, 2022 [4 favorites]
The comparison of doctors to police is an apt one; this is not the first time I've seen it made, but it's always worth considering. Also: social workers.
Also like police, medical professional training does not address these concerns to any meaningful extent. I can't speak for medical school, but I'm constantly appalled at every single discussion of ability, race, and ethnicity I've seen coming out of nursing school classes. (Like police, nurses are largely trained by retired nurses, which does not help.) The diversity training is inaccurate, offensive, or outright wrong, and it is handled apathetically.
And again, with respect to medical training, there is so little motivation to change medical training or even professional medical networks to teach people what ableism even is. Disability advocacy is, where it does exist, being carried on the backs of very junior young people working with minimal institutional support. Consider the planning committee of the Second Annual Disability Advocacy Committee in Medicine networking meeting--almost exclusively medical students, which makes sense: the organization was founded by a couple of second-year med students. Consider also Medical Students with Disability and Chronic Illness, which is also only a few years old and being carried by, again, med students with some formidable organizing chops.
I wasn't looking for medical students when I dug those two groups up. I was looking for any representation or attempts to organize groups aiming to advocate for disability access and education in medicine. I am frankly impressed--they're doing very good work, for having started so recently and with so little--but they have one hell of a long road to haul with their professional organizations. If anyone reading here is well placed enough to act as an ally to one or the other organization, kicking a little networking support and institutional aid--or a new chapter--to one or the other would be one hell of a tangible change.
posted by sciatrix at 3:30 PM on October 19, 2022 [15 favorites]
Also like police, medical professional training does not address these concerns to any meaningful extent. I can't speak for medical school, but I'm constantly appalled at every single discussion of ability, race, and ethnicity I've seen coming out of nursing school classes. (Like police, nurses are largely trained by retired nurses, which does not help.) The diversity training is inaccurate, offensive, or outright wrong, and it is handled apathetically.
And again, with respect to medical training, there is so little motivation to change medical training or even professional medical networks to teach people what ableism even is. Disability advocacy is, where it does exist, being carried on the backs of very junior young people working with minimal institutional support. Consider the planning committee of the Second Annual Disability Advocacy Committee in Medicine networking meeting--almost exclusively medical students, which makes sense: the organization was founded by a couple of second-year med students. Consider also Medical Students with Disability and Chronic Illness, which is also only a few years old and being carried by, again, med students with some formidable organizing chops.
I wasn't looking for medical students when I dug those two groups up. I was looking for any representation or attempts to organize groups aiming to advocate for disability access and education in medicine. I am frankly impressed--they're doing very good work, for having started so recently and with so little--but they have one hell of a long road to haul with their professional organizations. If anyone reading here is well placed enough to act as an ally to one or the other organization, kicking a little networking support and institutional aid--or a new chapter--to one or the other would be one hell of a tangible change.
posted by sciatrix at 3:30 PM on October 19, 2022 [15 favorites]
One of the reasons this is hard is because disabled people encounter people every day who have no idea what it's like to be disabled, and they encounter inaccessible locations often. We look to the medical field and think, "finally, someone who understands what I am going through." We look at medical facilities and see wheelchairs and gurneys and other medical equipment, and think, "finally, a facility that was custom-made to accommodate people like me."
Then neither of those things ends up being true; it's just a bigger pill to swallow that we don't even fit in in the one place we thought might have the easiest time accommodating us.
posted by hydra77 at 4:18 PM on October 19, 2022 [14 favorites]
Then neither of those things ends up being true; it's just a bigger pill to swallow that we don't even fit in in the one place we thought might have the easiest time accommodating us.
posted by hydra77 at 4:18 PM on October 19, 2022 [14 favorites]
Some of these problems could be solved by more aggressive regulatory mandates: e.g., every practice over a certain size must offer at least one set of accessible equipment.
Regulation won't solve the "ugh, go away" attitude, though.
posted by praemunire at 6:19 PM on October 19, 2022 [3 favorites]
Regulation won't solve the "ugh, go away" attitude, though.
posted by praemunire at 6:19 PM on October 19, 2022 [3 favorites]
Oh, I mean, all of these problems could be fixed just fine if we had an office to enforce the ADA beyond civil lawsuits litigated by disabled people, who of course famously have infinite money and energy for lawyers and cease and desist complaints.
That bit about hiring the 'terp for the Deaf client, for example; that's an ADA thing. We could also try having public or state funds for accessibility services or grants, which I think some areas have--but just having accessible ways to enforce the laws we already have would go one hell of a long way.
posted by sciatrix at 8:00 PM on October 19, 2022 [7 favorites]
That bit about hiring the 'terp for the Deaf client, for example; that's an ADA thing. We could also try having public or state funds for accessibility services or grants, which I think some areas have--but just having accessible ways to enforce the laws we already have would go one hell of a long way.
posted by sciatrix at 8:00 PM on October 19, 2022 [7 favorites]
In a general situation like this, more explicit regulation tends to be more useful. If every practice of [x] size had to have a properly adjustable table and one of those hoists for transfer in order to receive Medicare reimbursement, it would happen.
posted by praemunire at 9:16 PM on October 19, 2022 [5 favorites]
posted by praemunire at 9:16 PM on October 19, 2022 [5 favorites]
He hesitates to complain. “You want the doctor to be on your side,” he said. And he worries that the doctor might spread word that he is a difficult patient, making other doctors spurn him.
This is so true. And a horrifying thing is that even if you get a very good doctor who isn’t scared of disability and makes it possible for you to live, if you say this to them their response is “oh that would never happen! Doctors aren’t like that.”
So you know, thank you to my doctor who went “you are in horrible pain when you move and that makes a wheelchair appropriate for you, I will help you make that happen” but also, she constantly wants to refer me to specialists that don’t exist in my state, gets overwhelmed by my problems and tells me I need to see someone else and reluctantly helps during the actual literal year it takes me to get an appointment for something acute. Even my Very Good doctor who is generally ok with me being disabled is 100% not equipped to treat me. She does her best, bless her, but it’s only because she has personal experience with disability and a very small personal frame of reference for understanding that allows her to extend her compassion without ego damage.
Because most of my doctors, ugh specialists especially, have the most fragile egos *possible* and forbid that you have knowledge about your condition. They don’t want to treat disabled patients because they 1) believe the just world fallacy and 2) we hurt their feelings and egos.
And then abled people come along and say it’s because of insurance companies. No. I am old enough to remember long appointments. It was actually *worse* in those days. It’s abelism. And medical school churns out abelist doctors.
posted by Bottlecap at 2:11 AM on October 20, 2022 [12 favorites]
This is so true. And a horrifying thing is that even if you get a very good doctor who isn’t scared of disability and makes it possible for you to live, if you say this to them their response is “oh that would never happen! Doctors aren’t like that.”
So you know, thank you to my doctor who went “you are in horrible pain when you move and that makes a wheelchair appropriate for you, I will help you make that happen” but also, she constantly wants to refer me to specialists that don’t exist in my state, gets overwhelmed by my problems and tells me I need to see someone else and reluctantly helps during the actual literal year it takes me to get an appointment for something acute. Even my Very Good doctor who is generally ok with me being disabled is 100% not equipped to treat me. She does her best, bless her, but it’s only because she has personal experience with disability and a very small personal frame of reference for understanding that allows her to extend her compassion without ego damage.
Because most of my doctors, ugh specialists especially, have the most fragile egos *possible* and forbid that you have knowledge about your condition. They don’t want to treat disabled patients because they 1) believe the just world fallacy and 2) we hurt their feelings and egos.
And then abled people come along and say it’s because of insurance companies. No. I am old enough to remember long appointments. It was actually *worse* in those days. It’s abelism. And medical school churns out abelist doctors.
posted by Bottlecap at 2:11 AM on October 20, 2022 [12 favorites]
I think that one of the deepest problems here is that doctors do not like having to handle patients whose problems are genuinely difficult, for which no obvious medical solution may be readily available. It is uncomfortable for someone who is used to being treated as an expert to have to admit that there are things they are not sure how to handle. It sucks to see a patient, note that they are doing all the obvious things you can initially think to try, and struggle to think of new ways to try and fix the problem. It makes people feel uncomfortable, and it's very common for people to handle that feeling of discomfort by dumping it back on the patient who "made" them feel like that.
posted by sciatrix
They call us 'heart sink' patients. When we walk into the clinic, their heart sinks.
Must be terrible for them.
Now, add to this that medical training environments are intensely ableist in both passive and active ways: medical training departments are often resistant to students with any kind of accommodation needs, and the culture of long, long hours without pause, break, or restructure is difficult to survive with disabilities.
posted by sciatrix
Medical training ruthlessly selects for stamina.
posted by Pouteria at 4:32 AM on October 20, 2022 [8 favorites]
posted by sciatrix
They call us 'heart sink' patients. When we walk into the clinic, their heart sinks.
Must be terrible for them.
Now, add to this that medical training environments are intensely ableist in both passive and active ways: medical training departments are often resistant to students with any kind of accommodation needs, and the culture of long, long hours without pause, break, or restructure is difficult to survive with disabilities.
posted by sciatrix
Medical training ruthlessly selects for stamina.
posted by Pouteria at 4:32 AM on October 20, 2022 [8 favorites]
I posted this article to my FB wall and a friend (RL college friend, generally compassionate person, knows perfectly well I'm in the disabled camp) commented: "Some percentage of doctors, like some percentage of humans at large, are shitbags. Film at 11." with a shrug emoji. I mean, sure, it's true, but what a way to approach confirmation that the people I'm depending on to keep my health from deteriorating and/or me from dying may just fucking not care because I'm inconvenient.
posted by gentlyepigrams at 7:58 AM on October 20, 2022 [18 favorites]
posted by gentlyepigrams at 7:58 AM on October 20, 2022 [18 favorites]
I could die if one of these shitbags gets assigned to me. Film at 11.
posted by bleep at 1:15 PM on October 20, 2022 [9 favorites]
posted by bleep at 1:15 PM on October 20, 2022 [9 favorites]
Doctor here. Late to this discussion because literally all of my patients are disabled. I don't have any coherent Thoughts to share yet but here's some data.
Medicare's 2022 reimbursement rates for primary care office visits with the associated 5-digit billing codes:
The per-minute rate does decrease with longer visits.
There is a way to get extra reimbursement for visits that required extra time but I don't know anything about them now (I work for the government).
posted by neuron at 11:03 AM on October 22, 2022 [6 favorites]
Medicare's 2022 reimbursement rates for primary care office visits with the associated 5-digit billing codes:
99213 15 minutes $ 68.10
99214 25 minutes $110.43
99215 40 minutes $148.33The per-minute rate does decrease with longer visits.
There is a way to get extra reimbursement for visits that required extra time but I don't know anything about them now (I work for the government).
posted by neuron at 11:03 AM on October 22, 2022 [6 favorites]
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