What Does Harm Reduction Mean for an Eating Disorder?
Harm reduction is an approach in eating disorder treatment that is not an eating disorder treatment. It has been around as a care construct for eating disorders for over a decade. It originates with approaches to supporting patients with severe and enduring eating disorders (SEED) who have relapsed repeatedly and are progressively worsening with symptoms and prognosis.
Relapse rates from all science-based eating disorder treatment protocols are in the range of 30-40%. [1] Beyond that, a further estimated 30% neither maintain remission nor meet the criteria for relapse— a kind of treading water that results in a slow increase in health-related issues, disability and an early death. It means that despite all our current improvements in eating disorder treatment options, best case is that 60% who meet the clinical criteria for one of the classifications of an eating disorder within the DSM have a pretty intractable and life limiting trajectory. There is also an even larger contingent “below the waterline” who don’t meet the criteria for DSM diagnosis but are cycling through eating disorder behaviours and experiencing albeit a shallower but nonetheless still progressive accumulation of physical damage and mounting health concerns.
The eating disorder practitioner communities have grappled with the ethical dilemma of agreeing to stop pushing treatment in favour of buoying up the patient’s mounting health issues and reducing the harm and damage of an active eating disorder, knowing that essentially the patient has been assigned a palliative status and death awaits. Furthermore, we know that the cognitive capacity of a starved person is profoundly impaired and therein lies the tremendous conflict that many practitioners experience when agreeing to support a harm reduction pathway for any patient. Does the patient have the cognitive capacity to make the same decision that they would choose for themselves were the eating-disorder-generated cognitive impairment not present? They say they don’t want to recover, but would they say that once recovered?
The stakes are high and remission does realize a reversal of almost all of the physical and life-limiting damage that an active eating disorder wreaks on the body. Eating disorders have a mortality rate second only to opioid dependence. [2]
The Dark Realities of Treatment
While working in BC, I reviewed several care quality complaints from parents where their children were killed by either toxic street opioids or eating disorders and I understand the anguish of the parents and the need to blame the system for having failed their adult children. The parents are not wrong and yet they are often misguided on what is, or could be, in the locus of control of the system or the practicing professionals.
Having anything done to you against your will result in trauma. Having to be the one who does something to someone against their will results in vicarious trauma, burnout and subsequently leads to a heightened risk of enacting torture and abuse. Most inpatient eating disorder treatment settings are awash in trauma. Most families that have endured one member’s eating disorder and effort to recover are also awash in trauma.
Eating disorder recovery treatment spaces are deeply unpretty places. Despite all this, enduring the trauma and then working to heal from the trauma is also deeply worth it because patients who do reach remission unequivocally are relieved to have had their lives saved and their newly/once again capable cognitive function expresses deep gratitude that people helped them to refeed when they were adamant they did not want it.
While your child is your child you may have the ability to override what your child thinks they want because you also inherently know that your child does not want to die; they simply cannot approach and eat the food to ensure that they live. Once your child is an adolescent, never mind young adult, the ability to override has all but vanished. The nightmare of this condition is that while you know your child would choose life, they are, against their own will, choosing death.
It is natural to turn to the healthcare system and healthcare practitioners to want them to step in where your influence has all but disappeared at that point. Those healthcare practitioners do what they can, and often suffer for it. I have no nice, just-so wrap up to these realities. Living with an eating disorder is torture and watching it takeover a loved one is torture. If you’re a practitioner in the field, or a loved one, make sure you are well supported with a good therapist just for you.
Also know, that as a practitioner or a loved one, you will always place the patient’s safety above their autonomy and therein often lies the path of cruel and traumatic interventions in the name of saving them.
Listen. Truly listen. Your patient or loved one may be cognitively impaired due to starvation, but they may need you to hear that they cannot undergo any more trauma. Many times, they won’t be saying that at all and they are asking you to fight for them. But when they say they are done with the fight and they don’t want you fighting for them, then hold their autonomy as close to you as you would hold your own.
But in all this darkness, there is harm reduction as an alternate path allowing for space and time, two things that often feel unavailable to someone forced into treatment and recovery.
Where does AMAC fit into the Greater Harm Reduction Approach for Eating Disorders?
Anicca Active Managed Care (AMAC) is not about giving up, palliative pathways, or making a patient “comfortable” in their final decline. The framework is entirely about grace, healing and possibility.
Of course it could very well be applied during a final decline to death, but it is designed for the vast majority of patients below the waterline of clinical diagnosis as well as those who have cycled through inpatient stints and relapses. It is the great space of the in between, or liminality– essentially Anicca: impermanence.
AMAC is suitable for the patient who has awareness of the eating disorder and its influence on life, wellbeing and decisions. They are not in denial of its existence or impact. The state of denial or minimizing its impact is pre-contemplative in the framework of coming to terms with the need for change and then applying it.
That doesn’t mean the patient never minimizes or rationalizes the impacts of the eating disorder; it’s human nature to minimize any of our habits and behaviours that have negative consequences at times. In spaces where they do not feel threatened or that there is an imminent likelihood that something will happen to them against their will, they will reveal the reality of the condition’s impact on them.
AMAC is not about letting the the eating disorder have free rein. It’s a managed active condition, not an unmanaged one. It is akin to going into a stretch; it’s possible to move deeper into a stretch with some focus on your breath and entertaining the possibility that you can move further into it without snapping and breaking.
AMAC is designed to take practitioners, family members and the patient out of the battle of wills and cycle of trauma, to recentre to the patient’s autonomy, decision-making and experience. The whole team and patient get curious about where the edges are.
The patient thinks in terms of what rules can they apply to keep the eating disorder from expanding in their life like a gas. One woman I came across on socials who struggles with anxiety and depression has created a rule for herself that she is allowed to spend as much time as she likes picking out her outfit for the day, but whatever she puts on is now what she is committed to wearing for the day. She cannot keep pulling on and off clothes.
When there is no pressure to undergo imminent inpatient care, AMAC is not about sliding into another round of deep denial and avoidance, but rather challenging oneself to imagine what a good recovery process might look like.
In other entries in this section on EDI, I will flesh out further what standard rules and what imagination might get applied to really highlight the management piece of Anicca Managed Active Care.
There are also very dense papers in Brain Retraining grappling with the concept of possibility and nudging yourself towards possibility. The foundation of AMAC is possibility and not limitation.
Hudy D. The Implementation of Harm Reduction Strategies in Eating Disorder Treatment: A Systematic Literature Review.
Bermudez O, FSAHM F, Fiaedp CE, Hay P, Touyz S. Harm Reduction. Tipping the Scales: Ethical and Legal Dilemmas in Managing Severe Eating Disorders. 2020 Oct 27:139. p.153
