Thursday, May 07, 2009

What will it take?


I write this post in sorrow and distress, after reading this story about a 57-year-old woman in the U.K. who died after 40 years of being anorexic.

It's a tragedy when anyone dies from an eating disorder, especially someone like this woman who, according to the article, died friendless, without family, alone in the world.

But the overarching tragedy here is the profound misunderstanding of anorexia expressed by the medical establishment here. While her doctor obviously cared enough about her to be checking up on her at home (he's the one who spotted her lying on the floor), he clearly doesn't get some of the most basic facts about anorexia.

Here's a quote from the story:

Discussions of her case with psychiatrists and other experts in the past had all concluded that any effort to force her to eat would only make matters worse.

"I believe that she understood the nature of her illness and its perils," Dr Knight told the inquest. "She seemed to have a very firm understanding of her condition. The anorexia was a long-term chronic condition which would not be significantly modified – she was set in her ways."


This makes me want to cry. Then scream. Then change something.

"Any effort to force her to eat would only make matters worse." Let's say a person was delusional about the act of breathing. Breathing makes you sick, they say, and they spend as much time as possible holding their breath. They have to breathe sometimes, but they do it as little as possible. Now imagine a doctor saying "Any effort to force her to breathe would only make matters worse."

I didn't think so.

When someone has been chronically ill with anorexia, their delusions are, as the doctor goes on to say, "set in their ways." But that doesn't make those delusions true. Efforts to force this poor woman to eat would have caused enormous upheaval and distress for her and likely everyone around her. That's the nature of the illness, especially when it's become chronic. (Which is why I'm a big proponent of the Maudsley approach; if you can cure anorexia while someone is still young, they often don't go on to become chronically ill. And that's why it makes me so angry when doctors still take this line with teens who are sick; don't they understand what's at stake? But I digress.)

One of the most well respected ED docs/researchers in the world, Dan le Grange, once told me that there is something about anorexia that seems to affect the people around the anorexic as well as the ill person herself. This story is a heart-breakingly good example of that kind of distorted thinking legitimized. Why is it OK for someone under a delusion like anorexia to starve herself to death? Could it be because of our messed-up ideas about body image and weight?

Here's a later quote from the doctor: "Her body image was such that she thought that she looked the right way even though to everybody else she was very, very thin."

One of the hallmarks of anorexia is an inability to see your physical body realistically. People with anorexia literally look at themselves and see oozing fat even when they're emaciated. This is one of the profound neurological distortions that we know is part of the disease even if we can't understand it yet.

So yes, this woman "liked" the way she looked. But she was in no position to "like" anything about her body, because her self perceptions were profoundly and utterly distorted.

So here's what I want you to take away from today's post:
1. People with anorexia cannot choose to get well. They need at the very least support and help from others. Often they need others to begin the recovery process for them, and stick with it for a long time, until their thinking and ideation is restored to normal.

2. There's nothing sacred about anorexia. It's a terrible, tragic illness. There is nothing glamorous about it.

3. As a society we have a responsibility to help people with this disease recover. Which doesn't include letting someone starve herself for 40 years, only to die, alone and friendless and emaciated, on her bedroom floor.

To this woman's doctor in particular I say: You meant well but you failed. And guess what? Good intentions don't count for shit. What will you do differently with your next anorexic patient?

To the rest of you, I ask that you think about this woman the next time you talk to a friend with anorexia or bulimia. And see if there's anything at all you can do to help your friend recover.

21 comments:

Rosemary said...

We live in a society with an exaggerated respect for the individual that often translates into a failure to intervene when we see someone doing something harmful to themselves. Thanks for the clear thinking here.

seeleelive (for the love of peanut butter) said...

"One of the hallmarks of anorexia is an inability to see your physical body realistically. People with anorexia literally look at themselves and see oozing fat even when they're emaciated."


Although this is true in some cases, it is not true in all. I was diagnosed with anorexia when I was 17 years old (I am 19 now and maintaining a normal weight although I do have my bumps in the road) when I was sick and at my lowest weight, I did not see *OOZING* fat, not one bit. I did see myself as thin, but not THIN ENOUGH. This is the difference--there seams to be a misconception of anorexia: and please make this noted on your blog, people with anorexia; at least in the beginning, see themselves as thin and KNOW that they are losing weight. but when they are at their thinnest and most ill, they become numb to it; like it is not thin enough, and that is what keeps them sick and wanting to lose more and more.

Harriet said...

Thanks for your perspective. You are correct that I was making a generalization, which of course is not true for everyone in the same way. Everyone responds differently.

But while you may have perceived yourself as thin, just not thin enough, others do see the "oozing fat" phenomenon.

Best wishes on your recovery journey.

Chelsea said...

This is a tragedy, plain and simple. Perhaps because anorexia is considered a lifestyle choice people think it's acceptable to ignore it. I even have had trouble with friends in the past who clearly had eating disorders. I didn't know what to do, and honestly, now, I still am not sure what I would do. But, one thing is for certain: for someone with disordered eating, food is the medicine. You wouldn't allow a diabetic to choose to not take their insulin injections just because the needle hurts. Why? Because without it, they can die. The sting of needle is far less horrendous than losing them. It's the same for this. Someone, somewhere should have done something. I know it's difficult with an older person because it's perceived as a choice made by her, but this woman needed treatment...she needed food. It's completely awful that she had to die like this...needlessly.

sannanina said...

Rosemary - while found this post interesting and while I agree that there are situation when one has to intervene I think you are overgeneralizing.

I cannot say anything about anorexia, I never had it but from what I have read your statement might be correct in that case. But as a fat, depressed woman with binge-eating disorder who used to cut herself during several periods of her life I can tell you that there are plenty of people who really had no problem at all to intervene in my life without my consent and without the necessary knowledge and it really did more harm than good.

Any interventions need to be a) based on scientific evidence b) need to take the individual's situation into account and c) need to be as limited as possible. Personally, I had people (including doctors) try to intervene in ways that are not based on evidence or an understanding of my individual situation by encouraging weight-loss dieting, telling me to stay on anti-depressants that had not had a single positive effect on me after over six months of taking them and several changes in dosage, trying to threaten me into stopping to self-injure (something I did never do to an extend that would have required medical attention), and even force me to leave a job I did well and a place I loved for "my own good". I am no exception and I can tell you that all these things left me a) very careful what I tell even close friends and family members about my mental health issues (I am in the priviledged position that I can still hide most of my problems), b) nervous and afraid to seek professional help and c) with feelings of guilt and wothlessness that I had destroyed something I loved by my own behavior. Nobody should be left alone with mental illness (or with other life altering problems), but any intervention needs to be carefully researched and executed.

peggynature said...

"There's nothing sacred about anorexia. It's a terrible, tragic illness. There is nothing glamorous about it."This. Quoted a hundred-thousand times for truth.

Harriet said...

With all due respect for you and your suffering, this is exactly the kind of attitude that leads to tragedies like this one. I can't agree.

sannanina said...

Harriet - I suppose that your comment was a replie to mine. Now, I guess that we just disagree on this to some extend. I just want to say that I am well aware that there are situations in which a person becomes a serious danger for him or herself, and I do think that at this point it is usually a good idea to "take over" for that person. The question is when that point is reached.

When I worked as a volunteer in hospital right after high school I myself saw how one of our patients had to be compulsory committed to the psychiatric ward because she had bipolar disorder and her manic state worsened after an operation. It was heartbreaking to watch and hear how she was calling out to everyone in sight to help her not to get admitted. And yet it was the right to commit her - she behaved completely irrational and in addition she had at that point dangerously high blood pressure that urgently needed treatment, treatment she refused.

I also am aware that bipolar disorder is hardly the only condition that can leave someone temporarly unable to decide rationally for him or herself and I do not doubt that anorexia is one of these disorders. People in these situations need help.

Yet, I think it is equally dangerous to promote more aggressive interventions, especially in cases if these interventions are not very well investigated. There are literally thousands of accounts of people with mental disorders on the internet who have been forced into treatment and for whom it was a terrible experience without any benefit - my examples are rather mild. The problem is not just that it is often a traumatic experience to have control taken away from you, but also that even well meaning helpers are not always insightful and do the right thing. And then there are unfortunately also people who are not well-meaning at all but who actually exploit the power difference in these situations. It is a fine line to walk, and we definitely need better guidelines to help decide when and for what conditions an aggressive intervention is warranted. But that does not change that interventions in themselves can be harmful and destructive.

Harriet said...

"The problem is not just that it is often a traumatic experience to have control taken away from you, but also that even well meaning helpers are not always insightful and do the right thing."

Sannanina,
It's hard for me to know what to say because many situations are different. I'm speaking only to the situation of having anorexia. In which case, the person who is starving herself really doesn't have control in any case--it's the disease that's in control.

And in which case I think it is a kindness to take that illusory sense of control away.

Jane said...

sannanina,

I would point out that anorexia nervosa (AN) differs substantially from binge eating disorder. AN is ego-syntonic. Patients in the depths of the illness find it extremely difficult to gain perspective and eat enough to reverse starvation. The nature of the disorder itself complicates treatment.

You are right that interventions ought to be researched and evidence-based. Unfortunately, there is relatively little randomized controlled treatment research on AN. That said, guidelines from the American Psychiatric Association, the National Institute of Mental Health, the American Academy of Pediatrics and the Society of Adolescent Medicine all emphasize nutritional rehabilitation as a first step in AN recovery.

There actually has been some research done on how AN patients view coercion and involuntary admission once they begin to recover. Perspective very often shifts as health is re-established.
http://tinyurl.com/guarda-study
http://tinyurl.com/guarda-comment
http://tinyurl.com/watkins-study

Tiana said...

I want to say something about the control issue that has come up in comments. It is something I think about a lot because I technically understand both sides, but I have trouble forming a rational opinion on the subject due to some personal experiences.

As I said to a friend once, sometimes when a mentally ill person tells you they don't want treatment, you are not actually talking to that person since it is technically their illness speaking. How are you supposed to know what their real opinion is if whenever you ask, that monster in their head replies?

Obviously that is not always the case. I have refused treatment myself at times, and only once was it an irrational decision. However, I still wish someone had realised what was going on that one time, and forced me to change my mind! I have also watched someone refuse treatment because he was paranoid and under the illusion that his doctor was making him sick on purpose, but a few weeks later when we had all convinced him to take his pills again, he suddenly told me how glad he was to have them.

So how do we know when it's time to intervene and when it's just the person making a rational decision for whichever reason?

It just occured to me that maybe we are looking at this from the wrong angle. Perhaps the question is not "Should we force treatment on people or not?" - perhaps it is a waste of time and instead we should be asking "How can we change the available treatment so that when we have to force it on someone, it does not harm them?" I don't know ... maybe I'm wrong.

Harriet said...

Tiana,

Think of it this way: What are the risks of intervening when it may not be necessary? And then, what are the risks of NOT intervening?

I'm guessing that 9 out of 10 interventions are for a good reason. And to me, the risks of not intervening far outweigh the possible annoyances of intervening overzealously.

Think about the analogy of child abuse. My brother in law once nearly lost his kids because he brought one to the emergency room with an injury that seemed suspicious to the docs there. Sure, he was upset. But he felt in the end that it's better to have docs who are zealous in protecting kids than to have them send a kid home to a situation that might be dangerous. It's better to check it out.

I feel the same here.

Chelsea said...

I agree that it's better to intervene, no matter what. Also, it seems like people are speaking on two different areas. With other psychological issues, perhaps it's not necessary to intervene 100% of the time. Sometimes, the person just needs some time and they'll be okay. But, if there is no intervention in the life of an anorexic or bulimic, it's only a matter of time before they die. Once again, it's not a matter of whether they're "ready"...it's not like choosing to not take anti-depressants, in which case a person might be okay without them. No one is okay starving themselves, and no one should be allowed that choice. I really believe that, just because in the case of other emotional issues intervention isn't always necessary, doesn't mean that the same treatment should be given to people with anorexia or bulimia.

sannanina said...

That said, guidelines from the American Psychiatric Association, the National Institute of Mental Health, the American Academy of Pediatrics and the Society of Adolescent Medicine all emphasize nutritional rehabilitation as a first step in AN recovery.And I truly do not doubt that these guidelines are reasonable and should be followed for AN. I only have an issue with Rosemary's statement because it did not refer only to anorexia.

It really depends on the condition a person has. It also depends on the specific behavior. And talking of child abuse: One example of a destructive intervention is to label parents of fat children as child abusers and to force fat kids into weight loss. This is totally different from anorexia - the thing is there are people, even health professionals out there that do think aggressive intervention is a good idea in these cases. And honestly, I cannot even blame people for believing that. That does not change that people should act if they are have any suspicions that real child abuse is happening somewhere - actually my family and I did intervene in such a case once, and I am glad we did.

Another example is self-injury. When I was actively self-injuring I very quickly learned not to ask for help anymore and to hide my scars very carefully because people around me threatened to intervene if I would not stop. I really do get that behaviors like that are very disturbing for others to see (when my goddaughter showed them a few years later I was very scared and disturbed as well). Yet this is another example of a situation were a forced intervention is usually not warranted and can be very destructive.

Harriet said...

You raise valid points off the topic of eating disorders. It's a complex set of issues.

But I do believe that when it comes to EDs, intervention is a good thing. The alternative is often death.

Jane said...

Okay, I understand. I was considering your comment as a response to Harriet's original post about Sally Reynolds.

Anonymous said...

The big issue, aside from self-determination concerns, is cost and allocation of resources. There are limited beds available in specialized eating-disorder units; chronic illness is notoriously treatment-resistant; benefits can be exhausted; acute-care hospitals often won't even admit a patient for "re-feeding" even by feeding-tube or PICC line unless there is a valid diagnostic code ... and protein malnutrition isn't one of them. If there is a qualifying condition ... low blood-pressure/pulse, what-have-you ... as soon as the condition resolves or improves, the hospital and docs have to discharge the patient b/c insurance won't reimburse for "unnecssary care." A clinician might be able to admit a patient to a nursing home, but the nursing homes often won't accept an anorexic patient on anorexia alone. They aren't equipped to deal with it, nor will staff enforce nutrition-compliance. I have had anorexia for more than 20 years and am in my 40s. I have had significant medical complications and at one point was discharged from an EDU to a nursing home ... to die (which I didn't, nor did I go to the nursing home ... my family brought me home, and we worked with my primary-care team and home-health). Only one nursing home, which a relative was an administrator for, would accept me. I have been an inpatient numerous times, sometimes voluntarily and a couple of times on commitment petitions or under medical power of attorney of a relative. The involuntary admissions were less effective than no care, because it made me wary of seeking *any* care ever again and avoiding all clinicians. The threat of involuntary commitment, however, was almost a gift. When I was admitted to NYSPI, I was told upfront that if I tried to leave at less than 75 percent of IBW, I would be held. They weren't forcing me to sign in, but they told me more than plenty times that once I did, that would be the deal. I wanted to leave almost immediately, but I was stuck ... and though I don't recommend the program on its whole, having to stay there and having weight restored to at least that point, left me more sane in the end and relieved the ruminating anxiety of trying to decide if I should leave AMA ... if I would regret it ... but feeling I just had to go anyway. The wave of anxiety passed and acceptance of 75 percent set in. I faced a similar situation at Hopkins, where I signed in voluntarily, but upon wanting to leave while still on the "under-60-percent-protocol" (IV, pulse oximeter, glucose sticks, 1:1) ... I faced the choice of deciding to stay or leaving the decision up to a judge. I was rational enough to know that Dr. Guarda would present a better case than I. It is absolutely true that at some point, a patient may want to change but just can't do it. I have found myself in that frustrating and heartbreaking situation ... realizing what I have done to myself and what it's going to take to dig my way out ... and it's never something I've been able to do myself. It always has taken a crisis of some sort, physical or emotional, but there is never an epiphany that lasts. There is never a bottom to the barrel, especially when you keep surviving. It adds to the normalizing of pathology, and by then you nor anyone around you is really all that clear on what is practical, ethical, philosophical, or anything in the middle. It is a muddy area for adults with chronic anorexia. We want to hope, but we tend to sabotage our own best intentions and wear out everyone else in our lives, loved ones and doctors.

Gwen said...

First of all, this story is just heart-breaking. This poor woman, left to starve to death and die alone. This should never, ever happen. Speaking as a person who has recovered from anorexia, I can tell you that deep down, beneath all of the protests, denials of illness, there is a measure of RELIEF when others intervene. In the depths of my illness it was difficult for me to ask for the help I so desperately needed, and at times I didn't want help at all. I felt unworthy of help, of love, of a normal life, of food. It is the loneliest feeling to starve and torture yourself and know that there is a world of people all around you just letting you do it. It reinforces all of the negative, hateful feelings you have about yourself to realize that you aren't worthy of intervention.

I understand that personal liberties and privacy are very important. But ill people who can't ask for help (like those suffering from AN) need intervention, sometimes at the expense of those things. Life is more important than privacy and freedom. And of course, once the illness is treated and cured, the person would be given back a happier more fulfilling life. And I just wanted to comment about what someone said above regarding cost of interventions. I was thinking that maybe if we were willing to intervene early in the illness, and ensured that enough weight was gained and normal brain function returned before stopping the intervention, cost of care of these individuals would decrease. I think to cure the individual (and anorexia is curable) would ultimately be less of a financial burden than a bunch of insufficient interventions over a lifetime of chronic illness.

A said...

I read this article and the woman's weight was included. Let's just say that even if she was very very short her BMI would be such that I am suprised she lived so long AND she should have been compulsory admitted to hospital.

Maybe we cannot force complete recovery, but perhaps this woman would have benefited from SOME weight gain or SOME stabilization -- even to a BMI of 13 or 14 -- where she had some quality of life.

The fact that she died alone in her home was inexcusable. Her mental illness was as severe and chronic as someone with schizophrenia who lives in squalor and repeatedly endangers themselves -- such a person is usually institutionalized while she was not.

I think the problem is that there IS no long term care for these women. If she were to weight restore she would likely have to more than double her body weight AND deal with countless psychological and physical repercussions. That alone might take a year whereas she may need rehabilitation for the next two to learn basic life skills and independance. I don't believe Maudsley would have been a possibility, Harriet. She was too far gone, but certainly she needed compulsary inpatient treatment and extensive rehabilitation afterward. Where would she have recieved this care? I can tell you that there is no such place in Canada. Perhaps in the US. Is there any such place in the UK where she lived?

A

Gaining Back My Life said...

What a heart breaking story, and a stark reality of the truth of our illnesses.

Anorexia kills.

Period.

Pixll said...

I need to comment on this. These are some of my experiences:

I have had a friend, who at 45, died of anorexia. Because she was strong, and stroppy and resisted help. Because people didn't want to upset her. Sometimes me included. But my god, how I wish we/me/somebody had taken a stand. I wish we had the resources here that could have seen that she got good, consistent nutrition in order to save her life. But there was nothing. We are so under resourced for cases like this. When someone is no longer a child, and no one is willing to stand over them and insist that they eat, then what? We let her die. We all let her down. We let the anorexia kill her. 'We' being all of us - the health system, the world.

I also know, from my own experience, what it is like to exist at a low weight. I didn't know quite how compromised my thinking/cognition really was until I went through the process of refeeding. I was always 'functional' able to hold down a job, have quality relationships, study.... But until my weight was at a much better level (I never quite made it to my IBW) I just could not think clearly or rationally.
Everything changed,,,in ways I never even imagined. It felt like I had woken up from a decade long nightmare. I guess I just wish my friend had had the chance to feel that rush of clarity.

Because I know for me, even though I am not still in such a good position, it was enough to give me hope and motivation to recover. I want that clarity and freedom of thought again. It wasn't until my BMI was over 19 (higher than it had been since i was a teenager) that i actually wanted to recover. And strangely, i felt small. A lot smaller than I feel now at 30lbs lighter. That is what it does to your brain.

I wish health professionals would really know the powerof starvation and malnutrition on your brain. Really know it!! Because then people wouldn't just be left to die anymore.