a bill of rights for people with eating disorders

earlier this year, the academy for eating disorders put together a bill of rights for people with eating disorders. i’m very surprised to see that pretty much no one on the web discusses it. so i’ll start. first, here is the bill:

  1. right to communication/partnership with health professionals
  2. right to comprehensive assessment and treatment planning
  3. right to accessible, high quality, fully funded, specialized care
  4. right to respectful, fully informed, age appropriate, safe, levels of care
  5. right of carers to be informed, valued and respected as a treatment resource
  6. right of carers to accessible, appropriate support and education resources

here’s a few points for discussion:

this bill, which is associated with the charter for action on eating disorders, was “produced through the collaboration between the academy for eating disorders and other professional and patient/carer organizations around the world.”

i’d be interested in what my friends in political science have to say about this (ray? ashok?) but the way i understand it, bills of rights are usually drawn up by and originate from the people who are to benefit from them. so i’m a little leery of a bill of rights that’s put together by “experts”.

the whole tone of this document is a bit patronizing: experts talking about and for (as opposed to with, or under the direction of) “people”. it’s interesting here to remember some of the political connotations of the term “people” – as in “we the people“.

for example, “the precise nature and degree of carer involvement should be based on the wishes of the person with the eating disorder and their carers [i.e. families and loved ones].” apart from the fact that this is ambiguous, it takes away power from the person with the eating disorder. which may partly be the very reason why the person got the eating disorder in the first place.

on the other hand, there are also some positives, for example

  • threats, coercion and punishments have no place in the treatment of eating disorders
  • people with eating disorders have a right to expect that healthcare practitioners will help them to plan for and manage the transition between hospital and the community
  • people with eating disorders should expect that their treatment will address both their nutritional and physical health and safety, and their psychological health and quality of life

all in all, i like the idea of a bill of right. there may be quite a bit of work to do yet to get it more in line with the interests of the actual people concerned but it’s good that the academy for eating disorders made a start.

let’s hear it from people who currently have or have in the past had eating disorders. what do you think?

isabella mori
counselling in vancouver

11 thoughts on “a bill of rights for people with eating disorders

  1. Kadisha

    I have had an eating disorder (bulimia) for 17 years now. I have been through various treatments and therapy for the past three years. The overwhelming thing that strikes me is that the treatment “world” is frustrating at best. Now, this is not to say that treatment is necessary or helpful, but navigating the insurance system and the never ending beaurocracy that exists in this country is maddening. Quite often the patient is removed from the equation. There are a multitude of people, insurance companies, government agencies, well meaning therapists, etc. making the decisions about what treatment is necessary and when, where, why and how and for how long it should administered. The patient gets shoved to the background and is left feeling more powerless than they did before.
    One of the traits that many people with eating disorders share is the inability to ask for what we need. We often feel guilty for advocating for ourselves, we feel as if we don’t deserve the very things we have a right to (food, security, love etc) One of the goals of treatment should be getting the person with an eating disorder to the point where they are not afraid to use their voice, to speak up and ask for what they need. We deserve to be heard and taken seriously, but sadly we often are not, even by the very people who are supposedly there to help us. Part of the fault of that I suppose falls on the the nature of eating disorders themselves. It is true that people with eating disorders do often lie and manipulate to hide their illness from prying eyes, but does that mean we should not be trusted at all? If part of being well means being able to make healthy choices for yourself, and that a person is ready and willing to start doing that, shouldn’t they be given that chance?
    A lot of women with eating disorders suffered abuse, in the form of sexual and or physical trauma. That is the ultimate in stripping a person of their personal power, and control, and the eating disorder becomes a means of attempting to regain that power. Unfortunatley it is a dangerous and misguided means of exerting control over our lives, and it inevitably backfires.
    Don’t we deserve to have a say in what kind of treatment we get, and where we go to get it? What ends up happening is that there are far too many people involved in treatment decisions that don’t have the best interest of the patient at heart. So what happens? The very women that already feel powerless and out of control, end up feeling more that way instead of less. We end up feeling we have no rights, no voice, and that we are incapable of making good choices for ourselves. How do you focus on treatment and getting better if you perpetually remain locked in a power struggle with people who are supposed to be helping you?
    I think that this patient bill of rights is a small step in the right direction. At least someone is willing to address the fact that we as patients are not getting what we need. I agree that there need to be changes made to this bill of rights. It does need to be more specific and more centered on the patient. Right now as it stands, it is not clear who is supposed to benefit from this bill of rights. It really does have to be up to us patients to start using are voice and ask for what we need, and keep asking until we get it. The bill of rights is a beginning. We have to start somewhere, don’t we?

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  3. ashok

    I have to abstain from commenting, because politics depends on knowledge of particulars.

    I would just say that Kadisha’s comment makes a lot of sense, as does your initial skepticism. What does it mean to declare that someone has a “right” in a sense that isn’t strictly legal?

  4. isabella mori

    ashok, i’m intrigued by your last question, both from a philosophical and a practical point of view.

    let me just say something about the practical aspect.

    let’s say psychiatrist X says to her patients, i subscribe to this bill of rights.

    would this constitute a contract, and, if the patient felt that one of the rights was violated, would she have recourse before the law?

    even more complicated, what if she wanted to claim one part of the bill of rights but was not in agreement with another part? would she still have recourse regarding the other?

    (i think that’s one of the flaws with this bill of rights – it’s ONE package but it gives rights to a variety of people).

    let’s see whether legal bloggers can help us with this …

  5. Maurice Bernstein, M.D.

    Though I have no doubt that much could be improved in the clinical and social management of eating disorders, I wonder if it is necessary to isolate the particular entity of eating disorders and setting really non-specific rights to those who suffer with this pathology. I didn’t see anything in the Bill that couldn’t be applied and should be applied to a whole host of medical conditions including simply the overall ethical practice of medicine by physicians, other healthcare workers and society in general. I feel the health care system should attempt to provide ethical treatment to all classes of illnesses, including those bearing major psychologic components.

    The problem of selecting groups to champion rights is to ignore the entire picture of medical care. An analogy would be what is happening in the bioethics community. There is much discussion amongst ethicists about individual bedside issues such as when to terminate life support or what to advise regarding a brain dead pregnant woman but containing a live pre-mature fetus. But where is the widespread discussion and emphatic ethical education of the politicians and public about the inadequate access to medical care for all peoples in the United States but also in countries throughout the world? Rights to proper medical management should be available to all groups (that’s the ethical principle of justice) and not just to those with eating disorders. ..Maurice.

  6. isabella mori

    good point.

    could one suggest then, perhaps, that the way to go would be for eating disorders specialists to subscribe to a general patients’ bill of rights, spelling out how that would need to be interpreted in their specific situation?

  7. Maurice Bernstein, M.D.

    Isabella, I fully agree with your suggestion to have eating disorder specialists define specific ways that they could comply with the basic principles of the rights, however that is not the whole story.
    Medical treatment is a two-way street. In addition to patient rights, patients also have responsibilities in the treatment of their illnesses.
    They must show and attempt to be responsible in providing and acknowledging their medical history to the physician and, within the limits of thier emotional and physical and social capacities, attempt to be complientin the treatment plans. With the cooperation between the patient and physician or therapist, I think more can be done for those patients suffering from potentially lethal eating disorders. ..Maurice.

  8. isabella mori

    what i’m thinking right now is that the whole idea of patients’ rights and responsibilities and doctor’s rights and responsibilities is ultimately based on an “us vs. them” system.

    the point above, that “threats, coercion and punishments have no place in the treatment of eating disorders” illustrate that quite nicely.

    the term “compliance” illustrates it nicely, too – it’s not a term that would be used among equal partners.

    how, then, can we work towards patients and doctors (clients and therapists, healers and healees) becoming equal partners?

    the answer, if there will ever be one, would be founded on a very delicate balance.

    i’ll never forget many years ago, when my then 2-year-old son ran out into the street. my antiauthoritarian ideals flew out the window, i just yanked him back with all my might. in that instant, we were NOT equal – i was stronger and more experienced than him, and i’m happy of it.

    what we need is wisdom in making the decision when to act in such a parental/authoritarian fashion and when we to strive our best to acknowledge the fact that ultimately, we are all equals.

    can this wisdom be encapsulated in a bill of rights?

  9. Maurice Bernstein, M.D.

    I know that the word “complient” to some raises concerns of “threats, coersion and punishment” but I look upon the word as signifying the following of a hopefull ageed upon plan for management. Remember, in this “two-eay street” of the doctor-patient relationship toward attempting to arrive at a goal, the physician must also be complient with regard to his or her responsibilities in the agreement.

    Perhaps in the past paternalistic medical era, physicians thought of themselves as the “parent” of the patient who would rush in and pull their patient out of harms way. These days, we teach our medical students that physicians are moral equals of their patients and that each individual in the relationship has something to contribute. Physicians are there to examine, evaluate and educate the patient but a patient who has the capacity for medical decision-making is the one, after being informed, to set their own course. As physicians we may disagree with the patient’s decision and we may decide not to participate but the final decisions are up to the patient. ..Maurice.

  10. Sara McNulty

    I had anorexia/bulimia for about 9/10 years and for 6 years have been getting my life back…very very slowly. However last year i was accepted into nursing school, which i have put off for years because “I” wasnt ready. Its a small college and was excited because i learn best in small environments. Well as we know our level of trust in people is extremly low and slowly i opened up. Throughout 7 months balancing my emotions, eating disordere thoughts and habits at night (io would be ok durin the day, i set that boundaryt because I need to be well to learn and to care for pt’s in practicum). So since then i had 3 seizures due to fainting and hitting my head….which duh triggered them. My brain scans were normal and i was getting a better handle on things and opening up more and more. expressing myself emotionally and trusting the school since ” they are there to support our learning and are there if we need to destress” Yesterday i was informed i that i was not allowed to continue with second year, oh yeah informed me a couple days after paying tuition. I have been working on controlling my emotions, take my meds…adderall has been a life saver, suspected adhd and i have better control and can implement all the learning from 9 yrs of treatment….trial and error. In class we had a guest speaker, he had suffered a brain injury and it seemed he spoke to me. a ha the source of everything….i have hit my head numerous times and each time slight personality changes especially with my eating….had not cues….overate as a kid…never felt full, same as this guy. And i have had major blows and changes have been more significant and symptoms mimic adhd. neat, i was excited and frustrated because I have figured everything out about myself….my dr with ed program would cut me down and made me feel i was stupid. i expressed this to my nursing coordinators and the two day later, yesterday recieved a note about my dismissal. They didn’t have clear answers as to why, they kept saying it was because of the professionalism issue…..yet i have been making changes and working on that because i had never cared about anything and was unprofessional. I was calm and collected, mature, spoke clearly and provided confident exapmples of what i was doing to change. I even asked them to provide specific examples because well i would like to know so i can work on things. well they avoided things and i even caught them blatently lying to me about who was saying things about my professionalism. I stood up for myself and kept my dignity entact because I know i have done nothing wrong and have been learning about better communication. Heck in class most cannot speak or understand english and cheat. so just for finally being honest and taking responsibility and having the courage to open up and have grades above 85% and be descriminated regarding an issue that i have been doing something about. Then they started telling me i wasn’t ready, they have no right. i am or my doctor/councellor/psychiatrist has that right. so i am fighting this not to get back in but for all the time lost from my bf, friends, mom and all the money lost as well from tuition, and my mother supporting me. And i had insurance coverage until 25 with my moms insurance and military benefits (my father passed). If i’m not in school i can\t get my meds covered, my insurance was covered on my car from the benefits. It helps because my mom is a single parent and she has been through alot emotionally…..its been hell and when im finally doing well, seeing the light at the end of the tunnel and to be denied education and a future. i even checked my rights from government documents and its discrimination to act in that manner in terms of mental illness. well i agree with this “act” and the one’s who really understands the pain and torture need to form it, not biased drs and individuals. geez it seems that no one wants to talk about things because the reality is, the majority of the population have issues with food, body image….etc. they dont really its more about the food there’s so many other issues which need sorting through. as soon as its mentioned either ED or any mental health issue, society acts as if they can catch it. i dont get it, there needs to be more awareness and i was planning after nursing school to get into community health nursing or go for my RPN (psychiatric)….well i found a program i can get into, so maybe it was meant to happen. i shouldn’t be suprised though because eveything in my life good or bad comes at the write moment when i am ready for some reason….so i will not give up on myself or for anyone experiencing this madness (themselves or loved ones)….it affects EVERYONE!!!!!!!!! Thank You and if anyone advice as to legal help if being civil doesn’t work?

  11. Sara McNulty

    I have been in recovery from anorexia/bulimia for the past 6 yrs and within the last 4 or 5 months I have made more strides in my recovery being my own advocate and treatment guru than the “experts” have been. Believe me I have been through it all, 3 times in 12 week intensive inpatient treatments, 4 times in hospital (usually for 1-1.5 months), 1 yr at a private tretment centre….which my mom had to fork out the money because its not covered under health care….and right now trying a new form of therapy for myself called dbt, which my mom has to fork out the cash. We have even spent lots of time fighting with health benefits company’s through the job i was at. They wouldn’t cover my long term disablity because they felt that I was not “sick”…even though i was passing out regularly, had irregular heart rates, blood pressures, blood work, and mentality. I was an at an extremely low weight and my mom feared daily because of my depression and physical state. Oh yeah and my dream for the loingest time has been to help others….having that focus gave me strength to persue nursing. Throughout my program I gained trust in the people in charge of my program and felt it was my responisbility to let them know what was going on with me….health wise. And because of my honesty they kicked me out for no freakin reason. They claimed that I was having issues with everyone around me..even in clinical. they had no proof what so ever, they just wanted my money because after i took the initiative to make the appropriate appointments to get through it, i was kicked out 1 week after payment of my 2 yr tuition. And then a few days after i got a volunteer position at the facility that i appraently had tonnes of issues at. I was definately discrimiated for what i am going through…and it was a medical related school, i thought they of all people would understand. In public i feel so ostrisized for because of how the media and everyone portrays eating disorders. i would love for EVERYONE to know its sooooooooooooooo much more than the food. And all of the judgment adds to it. I mean when i got kicked out of school, my health care got cut; which was a huge help for my supporting mother in terms of medication, my LATE fathers military pention support got cut, my boyfriend broke my heart 1 day after the news and my recovery was compromised because of peoples greed and lack of suppor. ANYONE with an eating or any mental health issue (because there are usually tonnes of co-occuring illness with this) deserves respect and help. We are no different than anyoine else….we are creative, kindhearted, caring, loving, PEOPLE. we deserve this….I deserve to be treated way better than I have by those around me. It only takes a few to speak out and I am passionate in helping others and have had such proffound influences on those around me…whether people like me or the general public. I am a grateful recovering anorexic/ bulimic because I see the world as what it truly is. And that is its utter and complete BULLSHIT!

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