Fat People Are Not Entitled to Autonomy

Medical autonomy is supposedly a fundamental pillar of healthcare - the right to make informed decisions about your own body without coercion. But as I discovered in a conversation with my husband Junior, a fat dentist, this principle simply doesn't apply when you're fat. In this episode, I expose how the medical profession systematically denies autonomy to fat patients, exploring the difference between theoretical rights and practical agency, and why doctors can get away with withholding treatment until you lose weight. I also introduce The Weigh Forward - my new service to help fat patients fight back against medical discrimination through formal complaints and advocacy. 

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Chapters

• 0:41 Introduction and Junior's Dental Perspective
• 5:33 What Is Medical Autonomy?
• 10:55 Agency vs Autonomy in Practice
• 21:47 The Reality of Fat Patient Experiences
• 28:12 The Weigh Forward - Taking Action Against Medical Discrimination

Transcript

Hello, everyone, and welcome to the Fat Doctor podcast. This is episode 26. I've had a week off, and that's why I don't know what episode it is. Actually, let's be honest, I'm recording these podcasts now all in one go at the beginning of the month, and then I don't have to think about them for the rest of the month, and that, I have to say, has been quite liberating.
It's given me a lot more time to think and reflect and plan, and do all sorts of things, so yeah, feeling very refreshed. Wearing one of my favorite t-shirts, got my little panda on it in what looks like a Nike tick. And the panda is lying on it, and the panda just says, "No. You do it." And I love this t-shirt so much, it reflects me, I think, as a human being.
So welcome to episode 26. I had this conversation with my husband yesterday. And it was such a profound conversation, I was like, oh, that's a podcast episode right there. And so shall it be.
We were talking about joint pains. Most of you know now that I've written a book. Book is perhaps somewhat of an exaggeration, but "booklet" seems more appropriate. It's only 45 pages long, but 45 powerful pages, and they are A4 pages, so they're quite big pages. But yeah, powerful. 29 clinical references, all about this poor woman, Jenny, who needs a new knee, but she's too fat to get one. And so, I've been talking about it, and I've been writing it and stuff, so obviously, my husband knows what's going on. His name's Junior, by the way, in case you didn't know, Junior. As in not senior.
So Junior and I were having a chat about it, and he was like, you know, I just find it really hard to believe, because Junior, for those who don't know, is a dentist. Doesn't work as a dentist anymore. Thank God, because I'm kind of afraid of dentists, so never mind. You make of that what you will.
But he was saying, you know, when I'm pulling a tooth out, whatever, there are always risks. Taking out a tooth, you know, I could damage the nerves, I could do this, I could do that, and he was like, so, we do this thing called informed consent. He says, "Don't you think it's odd that there are doctors out there just saying you can't have this operation, instead of saying, well, here are the risks, here are the benefits, you choose, you decide."
And so he was saying, because, you know, at the end of the day, if I pull out a tooth and I damage the nerve, but I've told the patient that I could potentially damage the nerve. If I damage the nerve, then the patient was warned beforehand, and you know, at the end of the day, they knew that that could happen, and it did happen, and it's unfortunate, but it's one of those things that's just the reality that we all accept.
And I was like, "Yeah, that's right, that's what we learned," you know? We actually went to the same university, so yeah, it's what we were taught in our first year. Unfortunately, it doesn't work like that when you're fat. And he was like, "What happened to autonomy?" And I went, "Babes. Fat people are not entitled to autonomy."
And that, my friends, is the title of this podcast. For some reason, well, not for some reason, for many reasons, we are now living in a world where healthcare, the medical profession, has decided that autonomy is a great thing. In fact, it's one of the pillars of medical practice. However, it does not apply to people with a BMI over 35, 40, kind of depends on where you live, really. 30, if you're unlucky. Because then autonomy just gets thrown out the window. Just doesn't apply.
Now, some of you might be thinking, what is autonomy, Dr Asher? Especially in the context of medicine, and that's fair enough. Junior knows, because he went to medical and dental school with me. He likes to remind me that he is also Dr. Larmie, because he's a dentist. I like to remind him that if someone is having a heart attack in the middle of a restaurant, who are they going to want? The GP who's well-versed in how to manage heart attacks, or the dentist, who knows how to pull out teeth. We have this back and forth quite a lot, the kids get involved sometimes, it's all very funny. But yeah, we learned all about autonomy.
As I said, it was this fundamental principle that was taught to us. And I guess when you're pulling out wisdom teeth, or just teeth in general, or you're doing fillings, or root canal, or whatever gross things dentists do, maybe we're not so worried about BMI, you know, because a tooth is a tooth. But not so much when it comes to the rest of surgery.
So, what is autonomy, and what is autonomy in the context of medicine? Because obviously, you know, I'm sure the word applies to things outside of medicine, but basically, it's the fundamental right to make informed decisions about your own healthcare. And here is a very important part, without coercion. Right? You have to be able to make that decision without coercion. Otherwise, it's not autonomy. Doesn't count.
And so, that includes a lot of things, actually, not just, you know, the fundamental right to make an informed decision. That just sounds great. You have a fundamental right to make an informed decision. Sure. Okay, what does that actually mean? In order to be able to make that informed decision about your own healthcare without coercion, first of all, you need informed consent. You need comprehensive, understandable information before deciding.
Last podcast episode, I was talking about bariatric surgery, and I was talking about how many people have weight loss surgery, and then develop a complication and go, "Oh, no one actually told me this might happen." I'm like, "Ooh, that's a bit unfortunate, that's not informed consent. It's a bit illegal."
Same goes with medications. People start on medication. Common one is a blood pressure medication, a calcium channel blocker for your blood pressure. In the vast majority of patients, it causes ankle swelling. I don't know what the statistics are, but I don't believe the statistics, because pretty much all the patients that I deal with have some degree of ankle swelling, right? The lower the dose, the less likely, but, you know, it's quite obvious, it's quite common.
So, whenever I prescribe this drug, I go, "It's a great drug, doesn't have many side effects, apart from ankle swelling, tends to be worse in the summer, you can probably expect some degree of ankle swelling." So if it doesn't happen, it doesn't happen. Great, but if it does, it does. And patients just need to know. And 9 times out of 10, they're like, "Alright. Fine. That's fine, I still want to take the medication because of my blood pressure, and you've told me the benefits."
I've told you the benefits, I've told you the risks. I've given you other options, it's another important part. I've given you other options. I haven't just gone, "This is the only drug I'm going to give you," I've gone, "We could go with another one. Maybe not as good, maybe not as effective, but if you don't want ankle swelling, there are other options."
And the patient will normally go, "Well, I'll take that one, and I'll deal with the ankle swelling," and then maybe they come back to me and they're like, "Phew, I didn't realize it was going to be that bad. Can we swap?" "Yeah, sure," but at least they were informed.
Right? That's informed consent, and that is just how we should be practicing medicine. If you get given a medication and no one warns you about the side effects, then they are not practicing medicine correctly. That is not informed consent. They are not respecting autonomy. And I'm sorry, but they're not doing their job. That's not good enough. That is not good enough. It's not good enough to say, "Read the information leaflet" either, that's a cop-out.
I'm not saying we're supposed to give every single side effect, because that's not helpful, and a lot of times they're rare ones that don't happen very frequently, so I'll often say, "Now, these are the common ones. There are other ones, but yeah, there's the patient information leaflet if you want to know about it." But the common ones, we have a responsibility to our patients, right? And it's the same for surgery, it's the same for anything, really. We need to be able to tell people about the benefits and the risks, and the alternative treatments, that is informed consent. That's what Junior was talking about.
Now, that's part of autonomy. A small part of autonomy, informed consent.
There's another important part. Which is the right to refuse any treatment, procedure, or even lifestyle change. Even when the doctor disagrees. I remember when we were studying medical ethics, we were being faced with all kinds of dilemmas. What would you do in this situation? And the classic one: a child is rushed into hospital having been in some terrible road traffic accident. They come in, they need a blood transfusion, the parent says, "Nope, we're Jehovah's Witnesses, you can't give them a blood transfusion. It goes against our religious beliefs." What would you do? And we'd have all these big conversations and debates about the right to refuse treatment, and what about in children, and blah blah blah. I'm not going to bore you with the laws and the ethics, and of course it's different around the world.
But suffice it to say that every patient, every patient over the age of 18 who has capacity to consent. Because there will be some people who do not have capacity, because they're unconscious, or because they lack capacity for various reasons. So anyone who has the capacity to consent also has the right to refuse consent. Even if their doctors disagree, even if their doctors say "You're making a huge mistake," even if their doctors say "You're gonna die if you don't do this."
And more importantly, just because the patient refuses that particular treatment doesn't mean the doctor can wash their hands and go, "I'm no longer your doctor." No, that's not how it works. You're still a doctor, you still have to treat the patient. Now, you might say, "Listen. Your appendix is about to rupture. Either I go in and take it out, or you deal with the consequences." And if I say, "I will deal with the consequences, Doc," then I will deal with the damn consequences. And that might mean I die. But if my appendix ruptures, and I develop peritonitis, which is infection and inflammation within the abdominal cavity, you're still duty-bound to treat me.
You still have to give me the pain relief, you still have to give me the antibiotics, and probably say a prayer, because chances are I'm not going to make it. But I made that decision, and that, in the UK, I know, there is legal precedent, I can't remember the name of the case, it was a long time ago now, where a person who was schizophrenic, I believe, who had a serious mental condition, which meant that they didn't always have capacity to make decisions.
So it had been ruled, they didn't have the capacity to make a decision about their mental health. And one day, that patient developed gangrene, I think in a toe. The doctors wanted to remove the toe, and the patient said no. "I'm not letting you." And the doctors were like, "You don't get a say-so if we don't remove your toe, it's gonna spread up your leg, you're gonna lose your leg, and you're gonna die."
And the patient said, "No. You are not operating on my toe."
And so then they had to have this whole thing where they had to assess whether this person had capacity to consent, and it was decided, yes, they had capacity to consent, and therefore, even though they couldn't make treatment decisions about their mental illness, they could make treatment decisions about their physical illness, and had the right to refuse treatment of their gangrenous toe. That's the law.
Right? Even in such a situation, that is the law. Unless the law has been repealed since then, but I don't believe so.
So being able to refuse treatment without consequence, without fear of consequence, is enshrined in law, certainly in the UK, and I imagine in many other countries, and also is your right as a patient wherever you are. Autonomy.
So, informed consent, right to refuse. Self-determination, and this is kind of like right to refuse, but self-determination isn't just about refusing, it's also opting in as well as opting out.
So you should be able to make choices that align with your values, your beliefs, your circumstances. If a doctor says, "I want you to do this," and you go, "I can't do that, it's not possible because of the job that I work, or because it goes against my beliefs, or because I don't want to." And you get to determine that. Self-determination is part of autonomy.
And then, I guess the opposite of informed consent and the right to refuse treatment and self-determination, the opposite of autonomy is paternalism, or medical paternalism. I don't know if you've ever heard this term, but basically it refers to dark times. Dark times, like, they're over, you know, it's like saying slavery was abolished. Yeah, theoretically, but not really.
And in the same way, we've abolished medical paternalism, theoretically, but not in reality. Because medical paternalism was basically the belief, or the premise that doctors know best. Doctors know best. And patients don't really get any input in their care, just doctors say, "This is what you do," and you do it.
And so medical paternalism, you know, for a very long time was the guiding principle of practicing medicine for physicians and surgeons, and eventually, we kind of went, "Yeah, maybe people have human rights, and maybe we should be listening to them," and so paternalism supposedly went out the window.
As we all know, it didn't, because as I said to Junior, consent and self-determination, the right to refuse treatment, freedom from paternalism, all of these things that fall under the umbrella of autonomy, that doesn't apply if you're fat. It only applies if your BMI is under a certain limit. Because once you're fat, tough shit, right? That's the reality.
I want to talk about something that is even more fundamental, because Junior and I got into this conversation, you know, and there was a lot of back and forth, and he just... "I can't believe it, I just can't believe it, I can't believe it." I was like, "Believe it. You better believe it. I've been talking about this for years. What do you mean you can't believe it?"
And he was like, "But it can't be, because we were told, because we were taught, because that's what we talk about, like, how can it be?" And I'm like, "It is. It's not whether it can or it can't be, it is reality." For so many people, and a lot of the people listening will say, "Oh no, I don't have autonomy. I don't get to choose. My doctor is refusing me treatment unless I lose weight." That's the opposite of autonomy.
And so there's something here that goes beyond autonomy and just the healthcare experience. It's something about agency. And again, a term that we could apply to many situations, but when I'm talking about it in the context of medicine, I'm talking about having the actual power and the resources, and this is really important, both the power and the resources to act on my autonomous decision. Right?
There's autonomy in theory, and then there's autonomy in practice. Because autonomy is the right to choose, but agency is the ability to meaningfully exercise that choice. One is theory, one is reality.
And in order to have agency, you need to be able to get the information. And it's not just getting the information, it has to be information that you understand. It has to be information that you trust! It has to be information that you are able to process. In other words, you have enough time to process it, you know, you're given the options, you're not being coerced into doing it.
But just the information alone is problematic. Because most times, the doctors who are giving the information are not telling the truth. They are lying, they are withholding information, they either they don't know it, or they do know it, and they don't want to share it. So we can't even trust the information that we're being given. So that's not agency, is it? We can't trust what we're being told. Then how can we make an informed choice?
And then there's also financial agency, which is really important here, because the more financial resources you have, the better access to healthcare you have. Right? In the UK, we have a nationalized health service, and you might say, "Oh, everyone's entitled to the same care." Bullshit. Where you live, your postcode, in America, you'll call it zip code, very much determines the quality of healthcare. Everybody knows that. There's loads of evidence to support that.
So where you live, how much, you know, whether you were university educated, or you know, have a postgraduate education, whether you left school at 16, you know, it depends. This will all have impact. And also, in a very practical way, people who have the financial resources can pay for healthcare. In the US, it's all about insurance. What insurance coverage do you have? You know, wherever you go, money is going to make a difference to the healthcare that you can access.
So there's information, there's financial agency. And then there's social agency, and this is something that really applies, I think, to us as fat people, and also as a trans person, as a queer person, as an autistic person. If you're a disabled person, if you're a Black person, if you're a person of color, any of those marginalized or oppressed identities. You need to be able to, in order to have social agency, you need to be able to advocate for yourself. Right? Without facing discrimination. How can you advocate for yourself without facing discrimination?
When discrimination is endemic, it's systemic, it's everywhere you go, it's part of the medical profession. There were these studies that say, yeah, doctors are racist. And we know this. Doctors are racist, we're not doing anything about it, we're just aware that doctors are racist, and every so often we say a few words about how it's not right that doctors are racist.
How can you, as a Black person or a person of color, advocate for yourself, knowing that the system is discriminating against you, let alone the individual. The system itself is discriminating against you. Also, you have to be able to advocate for yourself knowing that if you do, you will not be penalized or punished, or dismissed, or... You know, we live in a world where if you use the words Palestine and action in the same sentence in the UK at the moment, you will be arrested!
If you wear a t-shirt that says, "Take action on Palestine," you will be arrested for terror offenses. That's how bad it's gotten in this world. Talk about our lack of agency. You can't even say a word now without fear of repercussions, and we live in a time, you know, even beyond the medical world, where really we fear speaking up for ourselves.
We're being made to fear speaking up for ourselves. So we live in a situation where we're like, either I stand up for myself and face the consequences, or I keep quiet. And for most of us, it's easier to keep quiet. But that has always been the case when it comes to medical treatment in our fat bodies.
And then, you know, there's cultural agency, so your values, your languages, et cetera, et cetera. Those have to be respected, that's always a problem. I love how we think we've got it right, because we now have patient information leaflets in different languages.
I remember working when I first started working, I worked in a place called Tower Hamlets in London, and it had a really large Bangladeshi and Somali community. And from what I understood about the Bangladeshi community, and I'm not an expert, they are much more commonly used to the spoken word rather than the written word. So not everybody is able to read and write. But was obviously able to communicate. So we're handing out these patient information leaflets, and I said, "Don't worry, I've got one in your language."
Yeah, what an assumption. What an assumption, because of course people who are unable to read are considered less than acceptable in this day and age, you know, because who can't read, honestly? Honestly. So we didn't respect that cultural difference. Many cultures do less writing and more talking. Stories and everything are passed down by word of mouth, right? Anyway, I'm getting, I'm going away on a tangent here. I won't carry on.
We need healthcare systems that actually support patient choice rather than creating barriers. That's what we need. We don't have that. We have the opposite of that. And yeah. That's what I was trying to tell Junior. And he was like, "I don't believe it." Eventually, he did believe it, because I didn't back down. And the reality is, the reality is, I am hearing these stories, I am listening to you, you are sharing your stories on Instagram, you are sharing your stories in my emails.
You are writing to me, you are talking to me, occasionally you're even stopping me in the street. You are telling me this is what's happening to me. And every time you tell me your story, I'm like, "Oh, what happened to autonomy?" Doesn't exist, doesn't exist because you're fat.
So we have theoretical autonomy on paper. But we don't have any real agency. And there's an even bigger problem here in that legally, the law, ethics and the law should work together, right? If medical ethics say a patient has the right to autonomy, then the law should protect that right to autonomy. Unfortunately, it doesn't.
And maybe it does, I'm not a legal expert, but what I have noticed is that when people tell me their stories, and I'm like, "Oh, that's an egregious, negligent, unacceptable act." It's actually technically called assault. When you touch someone, operate on them, perform a procedure on them without consent. That's assault. So when people tell me about that, and I'm like, "That's horrendous. You can, you should pursue that legally."
They laugh in my face. "We'll never be able to win that case, forget about it." Because, of course, the law is about money just as much as everything else is about money. So, yeah, we don't even have legal protections. We literally can't call the police. There's nothing you can do. Call a lawyer? No, no one cares, no one's advocating, no one's doing anything. I don't know of any medico-legal people. There should be!
People saying, "Hang on a second, what happened to autonomy? What happened to consent? What happened to informed consent? What happened to agency? This is wrong." We should be shouting this from the rooftops, but I hear nobody talking about this. I mean, not nobody. Patients talking about it, but I don't hear anybody in the medical profession, or the medico-legal profession, why not? What is happening is absolutely unacceptable. And my sweet, beloved husband who learned how to pull teeth and do things in mouths, whatever they may be, and was taught the same principles as I was taught about consent, cannot understand how doctors are allowed to get away with it.
Here we are.
Well, on that note, I have been thinking a lot about, as I said, I had a week off, it was great. I did a lot of thinking. What can I do? What can I do? Because I want to change the system, but that's a really big ask. How do we change the system? And I think the only answer I can come up with is we do it one step at a time. And I know it sounds a bit corny and trite, but that's the only solution. It's one step at a time.
I think if one person stands up to their doctor, probably nothing is gonna happen. If 100 people stand up to that doctor, that doctor is going to learn a lesson very quickly. And it's probably not possible to get 100 people to stand up to each doctor, but I reckon it's possible to make enough of a fuss, enough of a stink, to cause enough trouble, that doctors start paying attention. And they don't change their ways because they agree with us or they care about us, or they respect our autonomy and all of that stuff. They change their ways because they're afraid of the consequences.
I think less carrot, more stick, right? And so what are the consequences? Well, certainly in the UK, nobody wants a complaint. Let me tell you why you don't want a complaint. If you receive a patient complaint, especially if you're a GP, you have to respond to the complaint, right? It's a whole thing, you have to respond to the complaint. And 9 times out of 10, if you're a sensible doctor, you take that complaint, you send it to your medical defense team, your legal team, and you say, "Hey, can you help me craft a response?" And your legal team will tell you if you messed up and how to respond to avoid it escalating. That's what we're supposed to do. Sometimes I read the responses to complaints, and I'm like, "Wow, you really didn't try that hard here, you're really asking for it."
But you can complain, and if you're not happy with the response to that complaint, you can complain again, and you can escalate it all the way up to the very top, if you want to. So, you might think, "Oh, that's not the end of the world," but it is a pain. And it actually, it's actually quite upsetting. Nobody likes getting a complaint, it's not fun.
Sometimes you get called into a room, you get scolded, you feel like a child that's been sent to the head teacher's office. Uh, sorry, principal, if you live in America. So, it's not very nice, nobody wants that. One complaint, maybe okay. 10 complaints, not okay. The more complaints you get, the more people will be asking questions, so there's that.
And also, you have to discuss these complaints at your annual appraisals, so you don't just respond to the complaint, but you also have to discuss it at your annual appraisal. Now, this is just in the UK, and this is GPs, and it's not everyone, but it's a headache. Try to avoid them where possible. As I said, you can also escalate it, and escalate it, and escalate it if you want to. So what I'm trying to say is, one complaint's probably not going to make a difference.
But the more complaints we file, the more we say, "This is unacceptable," the better it is. And I think a lot of you will hear this and go, "That's great, Asher, but I don't have the time, the energy, the resources to do this. I am exhausted," and I understand this, because I have been in situations where I'm like, "That doctor, I'm gonna write a complaint," but I never do. Because it's just too traumatizing, it's too, you know, I just want someone to do it for me. I want a complaint-writing fairy. Like, bippity-boppity-boop, there it is. That's what I need.
So I was thinking about that, and I was like, "Huh, I could be that complaint fairy." I could bippity-boppity-boop the shit out of this, because I know how to write a complaint. Because I'm a doctor, and I know the kind of things that get you in trouble. So, I'm not trying to get my colleagues in trouble, I'm just trying to hold them accountable for their shitty behavior, just so that we're clear.
So yeah, I was like, "Yeah, that's, let's think about this." So I created a package. I gave it a name. You know me, I like wordplay. The name is, wait for it, I need a drum roll. The Weigh Forward. Except it's weigh spelled W-E-I-G-H, do you get that? The Weigh Forward, yeah, you got it. You liked it. I know you did. You smiled to yourself, I saw it.
Yeah, so I came up with The Weigh Forward. It's a package where you get a 90-minute consultation with me, and then I will bippity-boppity-boop the shit out of that complaint, whether it's a written, formal complaint, whether it's just a script for you to read to your doctor. You know, some people are like, "Oh, I'm not ready to write a complaint. That feels too much. That feels too intense." Whatever. It could be a formal appeal, whatever it is, but we'll make a plan, we'll discuss in your consultation what you think is the best course of action. And then after that, you get 30 days of support, where you can just email me or message me anytime to say, "Oh, actually, this has happened," or "I'm worried about this," or "Can we change this," or "Can you know," because there's always going to be bits I want to change, I want to add this, et cetera, et cetera.
So yeah, I want to take the hard work out for you. So, The Weigh Forward, it's a package that I've launched. If you've read "Jenny Needs a New Knee, but She's Too Fat to Get One," and you're thinking, "I'm Jenny. I need a new knee, but I've given up on the fact," no, you don't have to give up.
Your doctor does not have the right to force you to coerce you, to pressure you into losing weight in order to access the care that you deserve. They do not have the right, they think they have the right. But they don't. They will tell you, "Well, it's policy, hospital policy," "Oh, you know, I'm not allowed to, it's not my fault, it's their fault." They will have all sorts of excuses and reasons, and they'll tell you the insurance company won't allow it, and blah blah blah.
I know my way around these issues, and yeah, whatever they say, I'm like, "Okay, cool. But that's not acceptable." So, yeah, let's do this thing. If you're listening and you're like, "Hmm, this is me," I'm only doing, I'm only, I'm limiting the amount I do, because obviously it's quite intense work. So, I have 5 spots at any one time, because I'm doing 30 days of follow-up, right? So 5 spots at any one time, and then if I'm too busy, then there's a waiting list, and you just go on the waiting list. But if you think that might be you, just message me, do me a favor, message me. You can go onto my website and click on the thing that says, The Weigh Forward. I'll even link it into the show notes here. But, you know, if you just want to chat, message me.
And let's talk! Let's make a decision. Let's, yeah, let's do this thing. So that's me. I'm now going to stop recording, and then 2 seconds later, I'm going to record episode 27, which is very exciting. What is episode 27?
I should have looked that up. What is episode 27? It's basically about how my size does not define who I am. But I don't have a name for it yet, so that's probably not very good.
I should probably have a name for it next time I sit down to record. Notes to self: Turn off phone, and make sure that you know what you're doing before you press record. Okay, that's fine. Lesson learned. Thanks very much, have a lovely week, see you next week.
Bye.