From Standardized to Individualized in Eating Disorder Care

In the first and second parts of this miniseries, I’ve suggested that mental healthcare can get tangled up in damaging ways with loss of agency and identity. Standardization is a ubiquitous capitalist method, and it breeds drabness: here, the drabness of targets and clipboards, of pastel-coloured art and bloated treatment teams, of BMI requirements and tasteless lunchtime mush. And, as we’ve explored, the well-meaning drabness may have the unintended consequences of directly disempowering the individual and/or encouraging them to foster counterproductive kinds of rebellion. So now it’s time to ask: What can we do about any of this?

In brief, my answer is twofold: 1) behaviour needs to be put back in the centre of mental healthcare, where it always should have been, and 2) more responsibility needs to be given back to the individual who is ill, who should always have had it. The two naturally support each other: Taking meaningful responsibility for your own choices means making them tangible through action. Both are also likely to solve the drabness problem, since once you take away the blanket incentives for standardization, micro-creativities tend to pop up in its place.

And if we ask what these changes mean for the institutional scale of health-care for eating disorders, how feasible is it to get more individual about the giving of care? Of course there are reasons for standardization. It increases efficiency (which is code for: it decreases financial cost per individual or per otherwise calculated unit of care). In theory it reduces risk, because standardized protocols can be subjected to standardized tests of efficacy and ethics.

But when standardization (and its supposed links to efficiency, i.e. cheapness) becomes the driving force behind testing, what the tests are testing for can easily come unmoored from what matters to the individuals whose bodies and views are subjected to it. The discrepancy between “clinical recovery” and “personal recovery” (Slade & Wallace, 2017) may grow so wide that efficacy testing becomes an echo chamber supporting the achievement of treatment outcomes that nobody having treatment ever wanted, like a particular score on the EDE-Q or an arbitrarily imposed BMI threshold. Slade & Wallace encapsulate the disempowerment in this when they describe “the need to avoid attempts to ‘do’ recovery ‘to’ service users”.

Of course there are risks in any alternative. But as ever with eating disorders, we must remind ourselves of the simple fact that the status quo is not working well. (See Troscianko & Leon 2020 for an overview that remains pretty accurate.) This fact gives us a mandate to consider something different—including something less standardized, more individualized, and therefore potentially less drab. The obvious twin dangers of treading this path are the unregulated free-for-all and the burden of excessive choice.

But I can imagine a future where individuals choose a professional to support their recovery whose approach resonates with them, and where arrange their sessions together to suit the individual, and where they design the recovery process together, and where the outcomes may never be compared with anyone else’s outcomes because they too are determined by what the individual wants. Standardized thresholds for being sick enough for treatment and well enough for discharge would give way to individuals making the call at both ends.

My sense is that if we keep things (1) behaviour-focused and (2) guided by individual priority-setting, and ensure that all practitioners are trained and supervised to support both, then we limit the potential for the most obvious negative scenarios. Tricky questions arise about accreditation, about insurance, about cases of extreme cognitive impairment, and maybe I’ll explore some of them in a future post; for now this is just a first draft of a draft. But I don’t think that ethical and effective healthcare provision depend on anything like the level of medicalized standardization that is now typical—and still increasing.

And yes, I hear you asking where on earth the cash comes from for beautifully individualized programs of the kind I’ve begun to sketch out. Well, there’s nothing more expensive than something that doesn’t work. A Deloitte report on the costs of eating disorders makes this clear, indicating that around 10,000 mostly young adults will die of an eating disorder in the US every year, and the overall cost to healthcare services for ED treatment (excluding medical research) can be estimated at $4.5 billion in the USA for 2018–19. And that’s ignoring the wider economic costs estimated at around $60 billion in things like lost productivity by those with an eating disorder and those who care for them (Streatfeild et al. 2021). The current version of standardized, with the current success rates, doesn’t come cheap.

In the fourth part of this series, I’ll expand this thought about radical individualism from recovery to prevention, with the help of the twin principles of exploration and inoculation.