When Clinicians Do More Harm Than Good (Attitudes Toward Patients with Eating Disorders)

If you have an eating disorder or are close to someone with an eating disorder, you’ve likely heard many stories about dismissive or down-right negative and harmful attitudes that clinicians often have toward patients with EDs.I’ve experienced it myself: I had to find another doctor to refer me to an outpatient clinic, because the first one didn’t – he didn’t think I needed help (probably because I was very aware that things were not heading in the right direction even before I was at a low weight). Needless to say, my new doctor refereed me ASAP, thankfully, and by the time I got diagnosed, I more than fit the diagnostic criteria. So there’s that: a clinician standing in the way of early detection and treatment.

These attitudes hurt patients, a lot.

The goal of Thomspon-Brenner et al was to review published studies on clinician reactions to patients with EDs. They found 20 such studies (from 1984-2010). The summary of their analysis revealed:

Clinician negative reactions in regard to patients with eating disorders typically reflected frustration, hopelessness,lack of competence, and worry. Inexperienced clinicians appeared to hold more negative attitudes toward patients with eating disorders than toward other patient groups, but experienced psychotherapists did not experience strong negative reactions to patients with eating disorders. Medical practitioners consistently reported strong feelings of lack of competence in treating eating disorders. Negative reactions to patients with eating disorders were associated with patients’ lack of improvement and personality pathology and with clinicians’ stigmatizing beliefs, inexperience, and gender.

Highlights of studies of inexperienced clinicians and trainees revealed:

• first year residents (including psychiatry residents) had more negative attitudes toward patients with anorexia nervosa than obesity or diabetes
• medical and nursing students considered patients with eating disorders to be significantly more responsible for their illness than schizophrenic patients
• 31% of therapists from a variety of disciplines (psychiatry, psychology) preferred NOT to treat eating disorder patients
• most common feelings toward ED patients included frustration and anger
• nurses working WITH ED patients reported increasingly MORE negative impressions of ED patients as their interactions with them continued

Specialists and highly experienced psychotherapists had overall better responses:

• clinicians in this category did not experience the same degree of negative feelings toward ED patients
• high alliance between physician and patient was reported in highly trained psychotherapists
• the most common negative reactions were: frustration, lack of competence, worry and boredom.
• difficulties that experienced clinicians report when working with ED patients: lack of readiness to change, resistance, nature of illness, negative affect

General surveys of medical professionals that do not work specifically with ED patients:

• clinicians often felt lack of confidence or competence in treating ED patients
• a 1990 survey found that 54% of physicians felt incompetent in treating patients with eating disorders (second most common area of perceived lack of competence).
• many desired increased training in EDs

Why do clinicians react the way they do?

Thompson-Brenner attempted to identify predictors that account for the negative reactions.

Clinicians’ reactions to patients with eating disorders appeared to vary according to the perception of the patient’s response to treatment, the degree to which clinicians endorsed stigmatizing beliefs about the patient’s responsibility for his or her illness, the amount of experience they had had generally and specifically with eating disorders, their gender [male clinicians held more negative attitudes than female clinicians] and discipline, and the patient’s personality pathology [reactions were worse to patients with Axis II personality disorders].

Importantly (and this is true for everything, not just mental health):

Negative reactions to patients with these disorders in the form of stigma may contribute to the reluctance of patients to seek or continue treatment. Decreasing providers’ stigmatizing beliefs and behaviors would likely result in better access to care and more successful referrals and outcomes for patients with eating disorders….. clinician attitudes, knowledge, and stigma likely adversely affect both the quality and the availability of services for patients with eating disorders. 

In reading this review, keep in mind: the studies were collected over 3 decades of research and a lot (arguably) has changed in our collective understanding of the biological nature of eating disorders and how to treat them. How much of this is still true today? I don’t know – more research is definitely necessary.

What about depressing findings such as this:

Data indicating that clinicians commonly hold blaming or stigmatizing attitudes toward patients with eating disorders were collected across a wide range of years, locations, and professional disciplines. When asked in 1992 to consider the origins of psychiatric illness among patients with anorexia nervosa, schizophrenia, and recurrent overdoses, medical professionals considered patients with the eating disorder significantly more responsible for their illness than patients with schizophrenia and about as responsible as patients with recurrent overdoses. Furthermore, the same study found that these attitudes did not change over the course of training.

What can be done about this?

I think it is abundantly clear that healthcare professionals – nurses, doctors, dentists, therapists, nutritionists, etc.. – would benefit from improved training on issues in mental health, particularly eating disorders. The first few years of training seem to me to be a critical time to really emphasize the importance of taking mental health concerns seriously. I think the best way to achieve this is by educating students on the etiology of mental disorders (as much as we know), on what treatments are available and how well they work, on whypatients may behave the way they behave, and how to interact with patients in a way that validates their feelings and makes them an ally, not an enemy. Maybe brining in patients with eating disorders to share their stories (I’d definitely do that if I had an opportunity). Brain & Behaviour is a huge section of my University’s first-year medical school curriculum – yet, with the exception of a problem-based learning module, eating disorders were not covered (in the year my boyfriend was a first year medical student). It seems other mental health issues suffer the same trajectory. Why are rare neurological diseases covered but more prevalent mental disorders not?

In my view: this training needs to happen in the first 2 years of medical school. Not during residency. Why? Because much of what needs to be taught will impact the quality of clinicians’ interactions with patients – all patients. Why else? Because in the case of eating disorders, as I blogged earlier, they are mental disorders with physical consequences. From dental erosion, to numerous GI and cardiac problems, amenorrhea and possible infertility – it is likely that if you are in or plan to go into medicine, you’ll encounter patients with eating disorders (whether you know or not). It is important to be aware of that, be aware of your prejudices and preconceived notions: because the implications are huge.

Importantly, eating disorders are not the only problems that get ignored, dismissed or not taken seriously by clinicians – unfortunately. A 30 minute CBC radio podcast (by an ER physician that works in the same hospital where my lab is located, actually) had a very good show on this very topic (he didn’t cover ED’s): Diseases that get no respect. I highly recommend it – it includes perspectives from patients, clinicians and delves into some of the reasons for the problem.

Readers – share your experiences with clinicians (good or bad) and your thoughts on the matter: how would you go about improving the situation?

EDIT: accompanying news article on this paper from Psychiatry Online (with quotations from Thomspon-Brenner) can be found here.

FOLLOW-UP POST: When Clinicians Do More Harm Than Good – Part 2: This post looks at some negative consequences of treatment and asks the question, can treatment do more harm than good?

Thompson-Brenner, H., Satir, D., Franko, D., & Herzog, D. (2012). Clinician Reactions to Patients With Eating Disorders: A Review of the Literature Psychiatric Services, 63 (01), 73-78 DOI: 10.1176/appi.ps.201100050

My previous post on the effectiveness of residential treatment centers (RTCs) generated a lot of discussion. A point that was raised several times, on the blog, on Facebook and other forums was the fact that there are risks in choosing an RTC for treatment.
Laura Collins did a great job of articulating some of the risks in her comment:
Among the risks: delaying necessary changes at home, disempowering or alienating relationships at home that are necessary for longterm health, exposure to behaviors and habits that had not been an issue previously, exposure to unhealthy relationships with other clients, an artificial environment that can’t translate to life after RTC, and therapeutic methods or beliefs that are false or don’t apply.
There risks are not specific to RTCs. They hold true for inpatient treatment, partial hospitalization and to a lesser extent, outpatient treatment. I thought it would be nice to explore in more depth some of the risks associated with treatment. If you are receiving treatment or are the caregiver of someone who is, hopefully this will help you in recognizing what to avoid and when to seek alternative treatment options.
Inadvertent effects that are associated with the treatment itself, whether it is due to medication or actions of the physician/healthcare provider, are called iatrogenic.

Also, if you are wondering about Part 1, you can check it out here: When Clinicians Do More Harm Than Good (Attitudes Toward Patients with Eating Disorders). (Check out the comments, too!) The title of that entry is self-explanatory and I never meant to do a follow-up, but the content of this article is relevant, and so I titled it “Part 2″.

In 2011, Dr. Janet Treasure and colleagues published a nice article exploring some of the iatrogenic factors that may perpetuate and maintain eating disorder behaviour. The paper was inspired in response to a carer’s concern that physicians may often hamper treatment. Potentially damaging behaviours included (but weren’t limited to):

• telling parents/carers that they caused the illness
• telling parents/carers that the patient is not “sick enough” and/or doesn’t need treatment
• keeping parents/carers out of the treatment process, telling them to “take a back seat”
• telling them they are sick because they are too ‘attached’, or due to ‘bad parenting’
• not educating parents/carers what to do once out of treatment

Treasure et al. summarize different “therapeutic interactions in AN that may cause iatrogenic harm” (see Table 3 below). The paper focuses particularly on anorexia but I think most – if not all – points apply to bulimia and EDNOS as well. Perhaps there are slight differences, but I do think there are more similarities than differences.

It is not uncommon for parents (and/or caregivers), upon learning about their child’s (or partner’s, friend’s, etc..) eating disorder, to react in a highly emotional and anxious manner. Although this reaction is almost to be expected, it may act to reinforce the eating disorder. Conversely, failure to act, choosing instead to accommodate behaviors (even unknowingly) may also perpetuate symptoms.

It is a tough stop to be in, no question. Knowing how to act and what to say to a patient with an eating disorder is difficult. In my personal opinion, I think age and length of ED history are among the most important factors in guiding what to say and do and when to do or say it.

Knowing what to do is really hard if not impossible. And doing the right thing can also be really hard. There is no recipe, no protocol, no guidebook on how to successfully care for someone with an eating disorder. (And by care, I mean help in the recovery process.) But there are common ways that parents, partners, caregivers and clinicians often fail. I’d bet usually because they just don’t know that their behaviours and attitudes end up being counterproductive.

Treasure organizes the risks into several categories: overprotection, criticism or confrontation-coercive treatments, accommodation and enabling.

I’ve made a point form summary of the points Treasure et al.  raised for each category:

Overprotection

• rushing to utilize intensive treatment too early on and for too long
• inpatient environment can be unhelpful (and often  the content and precise goals of treatment are unclear)
• environment is very controlled (i.e. no ability to practice normal eating habits in the “real world”)
• families and caregivers are often excluded from treatment which prevents them from learning how to provide support outside of the hospital/residential setting
• even if home environment is toxic, the ‘abrupt reintegration upon discharge” creates a whole set of other problems, particularly if there’s no step-down process.

Criticism or Confrontation-Coercive Treatments

• there is a need to maintain a calm, compassionate and respectful relations between the physician and the patient, otherwise, “an attitude of defiance, rebellion and lack of compliance with treatment” may arise, leading to a “me versus them” mentality
• “Restricted activities, chaperoned exercise, limited use of computers/cell phones and increased meal plans can seem like a punishment, especially where the reasoning behind them is not explained and the patient is not given the opportunity to express their views.”
• Motivational interviewing technique may be useful in cases where patients are unmotivated to change

Accommodation

• Accommodating the patients desire to delay weight gain and physical stabilization might enable the ED behaviours to become even more habitual and entrenched, protracting the recovery process

Enabling

• Prolonged inpatient stays may result in patients learning new behaviours or compete with other patients, delaying the recovery process
• This point is crucial, and one I’ve seen manystruggle with: “services can set up a vicious circle whereby the clinician or inpatient service provides the main social network…. the sufferer may feel compelled to ‘hang on’ to their illness in order to keep within the service loop.” (If you recover and you don’t need your “team”, then what?! This is made worse if outside contact is very limited.
• Often patients believe that in order to receive care, or the same level of support, they can’t recover and must remain sick. I’ve experienced this myself, feeling that I wasn’t ‘sick enough’, but wanting more help. Thankfully, as I’ve gotten older, that feeling has passed. I realize when I need help and I don’t hesitate to ask for it.
• A stepped-care approach is crucial in helping the patient reintegrate into the world outside of the ED

Treasure et al. raise several other points that should be taken into account during treatment.

Nutritional stabilization is a necessary and crucial step in the treatment of anorexia nervosa as well as bulimia nervosa. Refeeding in the case of anorexia is difficult and has to be done with care:

Frequently all the foods used to refeed become associated with weight gain. A fear is produced which can stop the person from feeling they can maintain their weight whilst eating these normal foods, or leads them to act out their anger and frustration by bingeing on the foods that they were forced to eat. Graded meal plans where foods like puddings and calorific drinks are added last, or do not feature in maintenance plans, again fuel these beliefs.

There’s another important point that Treasure points out that is particularly true for patients in inpatient and residential treatment: the stable, structured environment filled with routines and rules.

Sounds great, right? Most anorexics and those with a history of anorexia thrive in such an environment. I do.

In fact, as I’ve mentioned earlier, people in my life can probably readily observe when I’m entering a period characterized by bulimic behaviours: structure, routine, and stability fly out of the window. In my healthy state, I’m an organized and habit-loving person. Conversely, during my worst periods of anorexia, it was obsessive: a break from routine was catastrophic. Quite literally, it would make me incapable of focusing or doing anything.

Often the inpatient environment is highly structured with routine and rules pervading the day. This can be highly valued by those with an obsessive-compulsive temperament since it produces a sense of security, but on the downside allows the obsessive-compulsive traits to dominate. The nature of a daily inpatient routine with activities planned, meal times arranged and predictable menus leads to lack of practise in decision making involving everyday tasks. Additionally, such a rigid routine can lead to panic and distress when, in the ‘real world’ things do not run on time, plans are changed and portion sizes vary.

Of course, some routines are great. Learning to eat at normal times and training my body to be hungry at normal times of the day was very important. Going to bed and waking up at the same time was almost miraculous in its ability to extinguishing bulimic behaviors and chaotic eating.

But as I got more comfortable with it, I began performing experiments: what if I go to bed later (I’m at a concert, or at a friend’s party)? What if I eat lunch later, or earlier because of convenience? What if I don’t work out at that time, but at a different time? Sometimes those experiments went well, other times they didn’t.. and I learned something then, too.

Learning to be more flexible and generally more “chill” was very important to me. I would’ve thrived in a structured inpatient/residential environment and then fallen flat on my face upon discharge.

Treasure et al. also suggests that clinicians and families drop the “all-or-nothing” thinking about recovery. Patients can feel like they failed if they didn’t achieve recovery during a 3 month residential treatment stay, or after 20 sessions of CBT, for example. Feelings of failure can themselves lead to falling back into eating disorder behaviours. Viewing recovery as a process might be more beneficial in such cases.

Recovery is by nature a prolonged staged process and clinician and patient need to have nonperfectionist goals. Treatment needs to focus on developing flexibility, turning from detail to seeing the bigger picture and learning to cope with chaos.

Exactly. I really agree with this, particularly for patients who might not have an adequate support system, or have a long history of eating disorder behaviours.

Recovery is HARD. And I used to get really angry and mad at myself for not being recovered. I recall when I first started treatment at 14 I told myself: by the time I am 18, this bullshit has to stop. I thought, this is a waste of my time, I have better things to do than this. (Learning neuroscience, for one!)

At 18, however, I wasn’t recovered. I felt really sad. Every year I used to get really sad around my birthday as I’d realize another year has gone by, and I’m still dealing with this stupid eating disorder. I’m bored of you, go away. Of course, it is not that simple.

And, I’m not recovered now either, at 23. But I’m less angry at myself when I slip up. I realize that some habits are hard to break. Sometimes life gets really stressful and unpredictable and it is hard not to fall back into ED behaviours.

But I noticed that when I would get really disappointed and frustrated at myself for screwing up, I’d fall harder and for longer. I’d feel like I failed, and that fueled more behaviours. But once I started actively trying to forget about the slip-up and return to normalcy at the next possible point (ie, the next meal), things would get better quicker. I’d be back to healthy routine in no time. Once I started accepting that I’ll continue screwing up on my way to full recovery, I became calmer and less depressed when I did slip-up, acknowledging the progress that I made, and try to move forward. Of course, this is all just my experience, my recovery.

This is getting long again, so I’ll end here.

Readers, what experiences have you found to be (maybe inadvertently) harmful in your recovery process? Can you relate to any of the points raised by Treasure et al.? Do you disagree with any of them?

(Side-note: I’m being very open and honest, so the only thing I’d ask is that you spare any advice on how to recover and what I should do. I am doing quite well at the moment; I’m happy where I am in my recovery and my life.)

Treasure, J., Crane, A., McKnight, R., Buchanan, E., & Wolfe, M. (2011). First do no harm: iatrogenic maintaining factors in anorexia nervosa. European Eating Disorders Review: The Journal of the Eating Disorders Association, 19 (4), 296-302 PMID: 21714039