Health Care Rationing and Discrimination: A Vicious Cycle?

Discrimination in our healthcare is one of the more unpleasant facts of life for the fat. It’s a pervasive problem that results in undertreatment, mistreatment and treatment delays:

  • Having important symptoms dismissed as “weight-related.”
  • Having a prescription for “weight loss” subsituted for effective treatments that would be offered to thinner patients.
  • Being treated and diagnosed with medical equipment inappropriate for our size.
  • Receiving inadequate physical exams
  • Being labelled as “noncompliant” because of a “failure” to lose weight.
  • Being faced with old-fashioned bigotry and hostility in people we need to trust with our health.
  • etcetera (yeah there’s more but you get the idea.)

It makes you wonder how much our supposedly poorer health is really a product of poorer healthcare.

Discriminatory Guidelines and Heart Transplants

One of the things we may not think about is how medical “guidelines” can actively encourage even the most conscientious doctors to undertreat us. Or to delay treatment until a magical “ideal weight” is (never) achieved.

An interesting article at Web MD reports on a study urging revision of discriminatory heart transplant guidelines, which recommend doctors keep “obese” patients off transplant lists. The study was presented at the Annual Meeting of the International Society for Heart and Lung Transplantation (ISHLT) which puts out said guidelines.

According to the study, which examined the outcome of 18,662 patients who had heart transplants, patients with a BMI of between 30 and 35 (the vast majority of the “obese”) had no significant difference in survival from “normal weight patients.”  Another smaller study presented at the Conference looked at results for children and found — again — that “overweight” children receiving heart transplants do just as well as normal weight children.

In other words, “official guidelines” tell doctors to deny and delay lifesaving transplants to fat people even though they’d do just as well as anyone else. What did the guidelines ask physicians to tell their fat patients in need of heart transplants? According to the guidelines: “weight loss should be mandatory to achieve a BMI <30 kg/m2 or PIBW <140% before listing for cardiac transplantation.” 

If weight loss is a grueling and ineffective process for us healthy fatties, imagine trying to do it when you’re close to death. The mind boggles.

I hope the ISHLT will revise its guidelines. But it sounds like we can still expect people who are at the heaviest BMI ranges — with a BMI over 35 — to be denied transplants. Not because they wouldn’t be far better off with them, but because they fare slightly worse than an “ideal” candidate. But rationing is the logic of transplantation. For organ transplants, a tragically finite quantity, those may just be the breaks.

Rationing and the Vicious Cycle

Of more concern, I think, is increasingly we’re seeing “rationing” used as an excuse to deny treatment even where there is no fundamentally limiting factor like organ supply, but where certain quarters simply want to find reasons not to pay. In cases like that combing the data for groups which don’t do quite as well as an “ideal” candidate seems like a good excuse for denying treatment. That the patient can still vastly benefit from the treatment is, I guess, not the main consideration.

Sandy Swarcz recently wrote one of her characteristically thoughtful and comprehensive articles on denial of join replacement to the fat on the grounds of a supposedly “worse outcome” (pointing out, by the way, that the data doesn’t actually show that fat patients do worse). Fertility treatments is another area where the same logic has been used to deny fat people extremely effective treatments.

My worry is that healthcare “rationing” just perpetuates a vicious cycle. Where rationing, combined with the myriad forms of healthcare discrimination, leads to poorer outcomes for the fat, which in turn makes us look sicker and riskier to treat. And this in turn could lead to further discrimination and further “rationing,” as fat people become increasingly viewed as “too much of a risk” to get the care and procedures we need.

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5 Responses to “Health Care Rationing and Discrimination: A Vicious Cycle?”

  1. La di Da Says:

    Last year I went to an otolaryngologist (ear nose throat) specialist to check out why I wasn’t hearing so well and why my sinuses are crappy. Had a CT scan, which revealed inherent phyiscal problems (ie, I have Too Much Skull). The dear doctor said if I wanted to have septum/adenoid surgery I should lose weight, because having general anaesthetic is very dangerous for fat people and my neck fat would make it hard to breathe while my nose is blocked.

    Well, given that these days we have the internet where anyone can look up medical journals and advice from other doctors, I did just that. Turns out that general anaesthetic isn’t dangerous for fat people who aren’t systemically ill anymore than slim patients, just like the anesthetist who did my dental surgery said (fancy that) – especially if the anesthetist isn’t an asshole too. And the kind of surgery he wanted to do that would plug up my nostrils with nose tampons afterwards was considered old-fashioned – and given that I am perfectly capable of breathing through my mouth when my nose is blocked (as it perpetually was) even when lying down and asleep despite having OH NO! NECK FAT! I don’t see what he was fussing about. The dental surgeon didn’t have a problem with my mouth surgery. OK, the ENT wasn’t blatantly rude, he just had a lot of assumptions that have apparently gone unchallenged, and had I decided surgery was the best treatment, could have led to a lot of angst and annoyance.

    Also he wrote on the report back to my PCP “she has a weight control problem”. WTF does that have to do with my hearing and blocked nose, and actually I don’t have a weight control problem thank you – I’ve been about the same weight for 10 years now since I stopped dieting.

    Also some other specialist I went to a few years back for a different problem put on the report for my PCP I was “super extremely obese” (based solely on looking at me while I was wearing a big thick winter coat that would make Kate Moss look fat) and that I ” “Seemed” intelligent” (with the implication I might not actually be because no smart person would ever be so fat). Luckily my PCP is not an asshole and thought that was a dumb thing to say.

  2. fatfu Says:

    La Di Da – I’m really sorry you had to go through that. At least the guy was upfront about his stupidity that you knew what you were dealing with. I worry that a lot of the time we’ll get doctors who won’t say what they’re thinking, but will be holding all of these ridiculous prejudices and making bad decisions based on our weight, and we’ll never really understand that’s what’s going on.

    And your experience is so exactly to the point. If we’re not treated adequately for health problems because doctors think we are so much more unhealthy…then guess what? We will become much more unhealthy.

    I thought it was interesting that you thought the guy assumed you were stupid. Those kinds of prejudices also can have an impact on our care. If they think we’re stupid, how does that affect our care? They also often assume we’ll be noncompliant. Or that we don’t care about our health.

  3. Kunoichi Says:

    Just found your blog and starting to go through your older posts. I just had to comment on this one!

    About 14 years ago, I had a repetitive stress injury to both my feet. Alone at home with a new baby, hubby at sea and no support system to help me out, I wasn’t able to give my injuries the care and time they needed to heal. It was about 3 years before I was walking pain free (most of the time, anyways), but they were never the same again. Stairs were always difficult to do, and the bones in my feet would occasionally pop in and out of place, but overall, it had gone away.

    Flash forward another 3 years. We’d moved to a new province, and suddenly the pain started to return. Within a year of living there, I was in so much pain, just *thinking* of getting out of bed in the morning to go to the bathroom had me in tears. Those first few steps of the morning were like walking with razors between the bones of my feet, but walking on them was the only thing that made the pain lessen. My legs hurt so much, I could hardly walk from one end of the house to the other – and I had young children to care for. The pain in my feet was as bad as it was during the worst of my original injury, plus I was having shooting pains in my lower legs that happened even if I were just sitting, with no weight on them.

    I finally went to a new doctor, recommended by a co-worker of my husband’s. When I first saw her and was telling her about the problems I was having, she tentatively suggested that it might be because of my weight. I told her flat out that I had gained weight *because* of the injuries, not the other way around.

    Being a new patient, she was getting my info, including my measurements and weight. Then she got out this little wheel, similar to a BMI chart (with the brand name of a diet pill prominently printed in the middle) and used it for my height and weight. Suddenly, she was all alarmed, telling me I was Class 3 Obese. When I laughed out loud, she admonished me, saying that this was a serious thing. She somehow missed the irony of the whole thing. Anyhow, since I insisted that I was eating healthy and, until the pain rendered me almost immobile, getting plenty of exercise, she sent me for a full blood workup to rule out things like thyroid problems as being a cause of my weight. I didn’t bother arguing, since I was overdue for blood work anyways, and I figured it was the fastest way to get the issue out of the way. Sure enough, the next time I saw her with the results, my blood was, in her word, “perfect.” She then had to ask, “so why are you here?” I reminded her of my legs. That’s when she sent me for xrays.

    The result? My original injuries had come back to haunt me. I had developed severe osteoarthritis not only in both feet, but both knees as well. I’d also developed bone spurs in both knees, and one heel (since then, the other heel has developed a spur, too). Much to her surprise (because of my weight, apparently), I have no arthritis of any kind in my hips or lower back. I’d actually developed the arthritis years before, but hadn’t really noticed until we moved to a humid climate. When we moved back to drier climates, the pain went away almost completely.

    My diagnosis was delayed by several weeks, because the doctor was more focused on my weight, rather than what I’d come to see her for.

    Thankfully, doctors I’ve had since then have never made issue with my weight, but focused on the actual reasons I’d gone to see them.

  4. vesta44 Says:

    I can so relate to this. About 20 years ago, I had severe gallbladder attacks and went to my doctor to see what could be done. He said it needed to come out, but not until I lost weight, as surgery on obese people was just too dangerous. I asked what the dangers of a burst gallbladder were, and were those dangers worse than the risks of surgery. He wouldn’t answer me, and I told him if he waited for me to lose weight to do the surgery, he’d be doing emergency surgery on a hot gallbladder with me still overweight. I ended up going over his head to the surgeon and anesthesiologist, who said since I didn’t have high blood pressure or heart problems, wasn’t diabetic, they saw no reason to postpone surgery until I lost weight (I told them that I had been 350 lbs for the last ten years, and my weight only varied by about 10 lbs either way in all that time). They said that even though I was considered morbidly obese, I was still healthy enough for the surgery. My original doctor said I would be in the hospital for 7 to 10 days to recover, but guess what? I went home on the 5th day and did just fine. I don’t get all the minor ailments that my skinny friends do, and when I do get a cold, I get over it in about 2 weeks (without having to see a doctor).
    I do have arthritis in my right knee (diagnosed when I was 33) and I figure it’s from all the damage done from the falls I took on it as kid roller-skating all the time. Not to mention that every time I fall, I land on that knee. I have back problems, but those I think, come from getting hit by a car when I was 18 (fractured my pelvis in 3 places), and maybe aggravated by my weight. I also have veinous insufficiency in my lower legs, current doc says from having jobs where I either had to stand all day or sit all day. Other than that, I’m healthy. My cholesterol isn’t high (199), my blood pressure is 132/82 (not bad for 53 and 390 lbs), I’m not even borderline diabetic (blood sugar runs about 100 most of the time, hubby is diabetic, so I test mine every so often). My thyroid is normal. The only thing I can attribute for cause of my size is genetics. Check out all the women on both sides of my family, and they are ALL larger women. None of them are less than a size 16, and my mother is a size 22/24.
    About 8 years ago, I took one doctor’s advice and had a vertical banded gastroplasty. I lost 70 lbs in the first couple of months, and when I started back on regular foods, in the quantities allowed, I couldn’t keep anything down. I ended up with the stapling coming undone, and gaining back the weight I had lost and another 40 lbs. My current doc asked if I would be willing to try another type of bariatric surgery, and I told her no way, in no uncertain terms. It can’t be done laparascopically, since I have mesh in my abdomen from a ventral hernia repair (a complication from the gallbladder surgery). And I am not going to have any more open abdominal surgeries if I can possibly help it.
    The myths out there about fat people being unhealthy are just that, MYTHS! I don’t think we are any unhealthier than our skinnier counterparts, and in some cases, may be much healthier. At least we have reserves to fall back on when we get sick, which is more than I can say for the Kate Moss/Twiggy wannabes.

  5. fatfu Says:

    Sorry for the late reply I’ve had some of my comments eaten by the spamfilter.
    Kunoichi and Vesta thanks so much for posting your stories. They were really fascinating and illuminating to read in such detail.
    Kunoichi your doc’s problem seems to be just a complete inability to see past the weight. Been there, done that (or had it done to me, anyway). It’s no fun, but at least I see a light at the end of the tunnel there. When you realize that’s what’s happening you can usually kind of take your doc by the hand and guide them towards better care, e.g. saying: ok, I know you want me to lose weight, but what ELSE can we do that might also help? Or: what would you do if it were a thin patient? Would you do further tests? Offer another treatment?
    Vesta the problems you had scare me a bit more. That seems like a reluctance to treat just out of “fear” that we’re so “fragile.” (Or cynically: that their “success rates” will be brought down by operating on a fat patient). There it’s very hard to tell if the doctor is being reasonably cautious about a dangerous procedure or just believes fat people are ticking time bombs or what. I do find it interesting that they don’t seem at all worried about our surgical risks when the surgery is WLS. We’re a horrid risk to die on the table for gallbladder surgery, but if its weight loss surgery it’s worth it!
    Vesta I don’t know whether we’re unhealthier or not, to be honest. I certainly know I can’t just look at a person’s size and be able to know how healthy they are. But I’ve looked hard at the studies, and I think the risks for most people who are told to lose weight are exaggerated. But for somebody at my weight (250) I’m pretty sure I do have a number of increased “risks.” Although, like you, so far none have come to pass. No diabetes, no bp problems, no arthritis, no sleep apnea, etc. Nevertheless I think it’s just common sense to make sure that my doc takes my bp, checks my glucose, and that I’m careful to do low-impact exercises. But realize that every category of humanity has its own “risks.” And that can be used to help us and empower us (for instance when women are screened for osteoporosis or breast cancer because of an understanding that we’re at “risk” for these)…in which case it’s great. But when it’s used to bully us or to insist we MUST BE SICK if we’re fat or MUST LOSE WEIGHT, or causes docs to undertreat us, or when those risks are wildly exaggerated to caricature us as sickly walking heart attacks…then that’s epidemiology being totally abused and abusive.


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