When Clinicians Do More Harm Than Good – Part 2 (Risks Associated with Treatment)

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.

DAMAGING BEHAVIOURS BY CLINICIANS (CARERS’ PERSPECTIVES):

• 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.

Now 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.)

References

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