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:
- right to communication/partnership with health professionals
- right to comprehensive assessment and treatment planning
- right to accessible, high quality, fully funded, specialized care
- right to respectful, fully informed, age appropriate, safe, levels of care
- right of carers to be informed, valued and respected as a treatment resource
- 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
9 responses so far ↓
1 Kadisha // Dec 14, 2006 at 12:12 am
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?
2 Help With Eating Disorders» Blog Archive » People find help with emotional abuse with compulsive overeating all over (definition of anorexia nervosa) the internet. Take a look and see if you can find something. // Dec 18, 2006 at 12:04 am
[...] a bill of rights for people with eating disordersearlier this year, the academy for eating disorders put together a bill of rights for people with eating disorders. im very surprised to see that… [...]
3 ashok // Jan 1, 2007 at 1:51 am
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 // Jan 1, 2007 at 9:31 am
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. // Jan 1, 2007 at 11:34 am
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 // Jan 1, 2007 at 11:45 am
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. // Jan 1, 2007 at 6:04 pm
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 // Jan 2, 2007 at 12:59 pm
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. // Jan 2, 2007 at 1:52 pm
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.
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