Eating Disorders and Decision-Making: Understanding Capacity, Consent, and Power of Attorney
By: Ruby Dee Kagan
A person suffering from an eating disorder can want their life back but remain ambivalent about the treatments offered to help them reclaim it. A parent can recognize their adult child’s right to make their own decisions and also lie awake wondering whether respecting treatment refusal will mean watching their loved one deteriorate. A sibling might know what goes unsaid in appointments yet feel uncomfortable and unsure about where they belong in conversations about their sibling’s care.
In adult eating disorder care, the question of who gets to decide when and how help is provided extends well beyond a consent form. It concerns what happens when a person’s wishes, their ability to make personal decisions about seeking care, and other people’s understanding of what will keep them safe no longer appear to align. It also concerns how relationships survive decisions made under such complex circumstances.
On October 14 at 6:30 to 8:30 p.m. ET (register here), NIED will bring together clinician Dr. Anita Federici, lawyer Lisa Feldstein, and family members Pamela Kalsner and Noah Kalsner for “Whose Decision? Navigating Capacity, Consent, and Power of Attorney in Eating Disorders.” The conversation offers a safe space to consider these important questions.
Adult decision-making capacity is easily misunderstood. In Ontario, the starting point is the presumption of capacity (CPSO, 2025). The question is whether someone can understand information relevant to a particular treatment directive and appreciate the reasonably foreseeable consequences of deciding, or not deciding, to move forward. Capacity can differ between decisions, change over time, and disagreement with a recommendation does not, by itself, establish incapacity (CPSO, 2025).
These distinctions matter when an illness coexists with considerable intelligence, insight, and competence elsewhere in life. Someone may discuss treatment fluently while struggling to recognize what the risks mean for them personally. Another person may understand those risks and make a decision others find inconceivable or dangerous. Those situations require different responses.
In an exploratory study of 70 adult women with severe anorexia nervosa, clinicians judged approximately one-third to have diminished capacity to consent to treatment (Elzakker et al., 2016). Their difficulties included a reduced appreciation of illness and treatment with a tendency toward rigid thinking. While this finding warrants careful assessment and can’t be generalized to everyone with an eating disorder, it also needs to be taken seriously.
Much of this literature centre on anorexia nervosa among girls and women (Gustafsson et al., 2021). We need to be mindful of whose experiences become the default account of eating disorders, particularly when critical decisions are at stake.
It is important to realize that when an eating disorder has become entangled with identity, safety, or the management of distress, treatment can feel like it threatens survival strategies needed to get through each day. Qualitative research describes people feeling constrained and coerced by both their illness and treatment (MacDonald et al., 2023). Wanting relief doesn’t necessarily make the changes involved feel tolerable, and understanding the justification for treatment often isn’t enough to reduce the fear it produces.
This complexity deserves attention without discounting every objection as a symptom. A person may be describing something important about a previous harmful experience, a treatment that does not fit their needs, or a concern that has not been adequately answered. If disagreement is automatically dismissed as the eating disorder speaking, little room exists for persons to share how their care might be misaligned.
There is a name for the paradoxical harm caused by healthcare itself: iatrogenic harm. Drawing on his own experiences of treatment, James Downs (2025) describes how harm that goes unacknowledged can make seeking help again more difficult, even when someone desperately wants to get better. In a recent commentary on eating disorders, he examines how exclusion from care, coercive encounters, and being disbelieved about one’s own distress can deepen mistrust between sufferers and their carers. When these responses are interpreted only as poor motivation or “treatment resistance” the utility of care itself can become questionable on both sides (Downs, 2026).
Someone’s reluctance may carry a history we have not asked about. Understanding it requires attention to previous care experiences alongside the illness itself, including what would need to change for another attempt at treatment to feel more possible. Asking a person to trust again carries a responsibility for carers to consider whether the conditions that damaged their trust have changed.
Research on involuntary treatment does not offer a simple account. In interviews with 30 adults who had received involuntary treatment for anorexia nervosa, participants described mixed views, including consequences for relationships, education, and employment. Some ultimately saw treatment as beneficial, while others emphasized adverse consequences (Rienecke et al., 2023). A separate, smaller study of people who had experienced repeated involuntary treatment described both help in resisting the illness and enduring distress associated with the coercion involved (MacDonald et al., 2023).
These accounts complicate the assumption that people will inevitably be grateful later, as much as they challenge the claim that intervention never helps. Interventions may be lifesaving and still leave harm that needs to be acknowledged and addressed. Clinical outcomes, one way or the other, don’t settle every question about how someone was treated.
Relationships also shape these experiences. Tan et al. (2010) found that participants’ perceptions of coercion were closely connected to their relationships with parents and professionals, rather than simply the extent to which their choices were restricted. That finding highlights the significance of ordinary interactions: whether someone receives an explanation, whether their questions change the conversation, and whether they continue to be addressed directly when others become involved in decision-making.
For caregivers, these interactions can carry an almost unbearable sense of responsibility. A parent may fear both acting too forcefully and failing to act soon enough. A partner may try to preserve intimacy while becoming increasingly involved in monitoring an illness. Families can disagree because they understand the risks differently, because previous attempts at help ended badly, or because exhaustion has narrowed everyone’s patience. A synthesis of qualitative research describes the strain of negotiating control and the importance of trust across patients, families, and care teams (Gustafsson et al., 2021).
Siblings have their own relationship with all of this. They may want to remain a brother or sister while feeling pulled toward responsibilities they never signed up for. Their knowledge can be intimate, their worry substantial, and their own support needs easy to overlook. In a UK study involving ten siblings and five partners, many reported experiences of support fell short of existing guidance for carers (Batchelor et al., 2022). Including sibling perspectives matters because “the family” is not a singular experience or uniform voice.
Clinicians also work within conditions that shape what they can offer. An Ontario study drawing on interviews with six clinicians and analysis of treatment documents identified tensions between collaborative care and institutional demands to enforce standardized, time-limited treatment plans and rules (Costantini & Rice, 2025). Studies like this raise the question families may be all too familiar with, namely, how much meaningful choice exists altogether when the available options are already so tightly constrained?
Questions around autonomy in this context are difficult because they ask us to examine power within relationships organized around care. Patients may worry that admitting ambivalence will weaken their authority over their own lives. Caregivers may hear a discussion of autonomy as criticism of actions taken in fear. Professionals may be trying to explain a necessary boundary while a patient hears yet another door closing. Legal terminology can add distance just when people need to understand one another most.
Clear information can potentially reduce some of this uncertainty. In Ontario, a power of attorney for personal care allows a person to choose someone to make personal-care decisions if they become incapable of making those decisions themselves. Appointing an attorney does not automatically transfer control of a capable person’s treatment decisions. Nor does the absence of a power of attorney mean there is nobody legally authorized to decide; Ontario has a hierarchy for identifying a substitute decision-maker (see CPSO or CLEO for more information).
Substitute decision-making also comes with legal limits, including rules about prior capable wishes and best interests. The role does not give someone unrestricted authority to choose what they personally prefer (CPSO, 2025).
These are Ontario-specific examples. The details vary across jurisdictions, and the distinctions between power of attorney, guardianship, and consent deserve far more than a rushed explanation in the middle of a crisis. Our upcoming panel will explore all of these issues, questions, and more.
Advance care planning creates an opportunity to discuss wishes, values, and who will speak on someone’s behalf if/when needed. It can apply to future periods of illness and is not confined to end-of-life care.
Importantly, these conversations help prepare future substitute decision-makers on how to proceed but do not in themselves constitute consent to future treatment.
For someone with an eating disorder, a starting point might be what they would want others to understand if treatment became difficult again. Who helps them ask questions? What has made care feel unsafe in the past? What would help them stay involved when overwhelmed? A caregiver might ask what kind of support feels possible now, before trying to resolve every future disagreement. The conversation needs room for an answer that is more complicated than agreement.
Planning also needs to respect who the person trusts. Family relationships vary, and a close relative may not always be the person someone wants in that role. A power of attorney must be made voluntarily, by someone capable of making it (CLEO, 2025). Pressuring someone to sign a document intended to represent their wishes defeats the purpose of asking what those wishes are.
The practical challenge is to make collaboration hold up when people are afraid. Research with 123 Canadian eating disorder clinicians found an association between compassion for others and clinicians’ reported use of collaborative support (Geller et al., 2023). This does not establish causation, but it directs attention towards how care is delivered. Being curious about someone’s concerns, explaining the reasoning behind a recommendation, and identifying where meaningful choices remain are critical to protect when pressure rises.
This attention to collaboration is central in MED-DBT, an adaptation of dialectical behaviour therapy for people with eating disorders and co-occurring difficulties, developed by Dr. Anita Federici and Dr.
Lucene Wisniewski (2026). Its training framework describes collaborative contingency management, which entails working with clients to understand and change what reinforces eating disorder behaviours, while simultaneously aiming to preserve autonomy and the therapeutic relationship, connecting treatment to the life the person wants to build.
NIED’s panel brings clinical, legal, and family perspectives into the same conversation. Dr. Anita Federici will contribute the clinical perspective, Lisa Feldstein the legal perspective, and Pamela Kalsner and Noah Kalsner their lived experiences as a mother and a sibling. Together, these perspectives create an opportunity to examine how formal responsibilities are experienced within relationships, and what preparation can look like before decisions become urgent.
If you are living with an eating disorder, supporting someone who is, or working in their care, this discussion has something for you. How can we recognize when decision-making needs support? What happens when recommendations and willingness conflict? How can parties remain meaningfully involved if/when legal authority shifts? Sufficient time to ask these questions, and return to them as needed, should be part of care.
Join NIED on October 14, 2026, from 6:30 to 8:30 p.m. ET, for “Whose Decision? Navigating Capacity, Consent, and Power of Attorney in Eating Disorders.” Visit nied.ca/upcoming for further event details and registration.
References
Advance Care Planning Ontario. (n.d.). Understanding advance care planning (ACP) in Ontario: Prepare for future healthcare decisions. https://www.advancecareplanningontario.ca/acp
Batchelor, R., Cribben, H., Macdonald, P., Treasure, J., Cini, E., Nicholls, D., & Kan, C. (2022). The experiential perspectives of siblings and partners caring for a loved one with an eating disorder in the UK. BJPsych Open, 8(2), Article e76. https://doi.org/10.1192/bjo.2022.43
College of Physicians and Surgeons of Ontario. (2025, March). Guide to the Health Care Consent Act. https://www.cpso.on.ca/physicians/policies-guidance/policies/consent-to-treatment/guide-to-the-h ealth-care-consent-act
Community Legal Education Ontario. (2025, February). Power of attorney for personal care.
Costantini, S., & Rice, C. (2025). Exploring the ruling relations of eating disorder treatment in Ontario.
Journal of Eating Disorders, 13, Article 176. https://doi.org/10.1186/s40337-025-01362-3
Downs, J. (2025). Whose trauma is it anyway? Creating more equitable mental healthcare in a system that harms. BJPsych Bulletin, 49(4), 265–268. https://doi.org/10.1192/bjb.2024.103
Downs, J. (2026a). Conceptualising trauma in eating disorders: A reflexive commentary on the role of neglect, iatrogenic harm, and epistemic injury. Journal of Eating Disorders, 14, Article 94. https://doi.org/10.1186/s40337-026-01610-0
Elzakkers, I. F. F. M., Danner, U. N., Hoek, H. W., & van Elburg, A. A. (2016). Mental capacity to consent to treatment in anorexia nervosa: Explorative study. BJPsych Open, 2(2), 147–153. https://doi.org/10.1192/bjpo.bp.115.002485
Federici, A., & Wisniewski, L. (2026, September 15–18). MED-DBT 4-day intensive live training: Treating multidiagnostic eating disorders using MED-DBT [Training outline]. Eating Disorder Training Institute.
Geller, J., Fernandes, A., Kelly, A. C., Samson, L., & Srikameswaran, S. (2023). Collaborative care in eating disorders treatment: Exploring the role of clinician distress, self-compassion, and compassion for others. Journal of Eating Disorders, 11, Article 57. https://doi.org/10.1186/s40337-023-00741-y
Gustafsson, S. A., Stenström, K., Olofsson, H., Pettersson, A., & Wilbe Ramsay, K. (2021). Experiences of eating disorders from the perspectives of patients, family members and health care professionals: A meta-review of qualitative evidence syntheses. Journal of Eating Disorders, 9, Article 156. https://doi.org/10.1186/s40337-021-00507-4
Mac Donald, B., Gustafsson, S. A., Bulik, C. M., & Clausen, L. (2023). Living and leaving a life of coercion: A qualitative interview study of patients with anorexia nervosa and multiple involuntary
treatment events. Journal of Eating Disorders, 11, Article 40. https://doi.org/10.1186/s40337-023-00765-4
Rienecke, R. D., Dimitropoulos, G., Duffy, A., Le Grange, D., Manwaring, J., Nieder, S., Sauerwein, J., Singh, M., Watters, A., Westmoreland, P., & Mehler, P. S. (2023). Involuntary treatment: A qualitative study from the perspectives of individuals with anorexia nervosa. European Eating Disorders Review, 31(6), 850–862. https://doi.org/10.1002/erv.3010
Tan, J. O. A., Stewart, A., Fitzpatrick, R., & Hope, T. (2010). Attitudes of patients with anorexia nervosa to compulsory treatment and coercion. International Journal of Law and Psychiatry, 33(1),
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