Scoping review of end-of-life care for persons with anorexia nervosa

Introduction

Background & knowledge gap

At some point in their life, between 1 to 4 out of 100 women in high-income countries suffer from anorexia nervosa (AN) (1). AN is characterized by emphasis on fear of becoming fat, striving to achieve a lower than normal body weight by starvation (AN restricting subtype) or restriction plus purging (AN binge/purge subtype) (2). It is associated with a range of medical complications (3). With evidenced-based treatments, most persons with AN achieve at least partial remission (4,5). A significant portion of AN patients do not access, drop out of or do not respond to treatment, or experience relapse afterwards (6-8), resulting in 20% of patients developing a severe and enduring form of AN (SE-AN). The mortality risk is five times higher than in a healthy same-age sample (9), corresponding to one of the highest mortality rates among mental disorders besides opioid use disorder (10).

Despite these risks, patients with AN are often very reluctant to seek the life-saving treatment of weight gain, which is critical to the success of treatment (11). Here, coercion can come into play. In US legislation, for example, coercion rests on the assumption that the individual either lacks decision-making capacity (DMC) regarding treatment for his/her AN (guardianship) or is a danger to himself/herself and/or gravely disabled (civil commitment). Guardianship and certification differ in terms of the type of treatment that can be provided under each statute (medical care vs. psychiatric care), as well as the venue for that treatment. Guardians can make decisions regarding a ward’s emergent medical care (such as artificial nutrition). Once the ward is no longer medically unstable, coerced inpatient psychiatric care and further nutritional rehabilitation can only be authorized by the courts under civil commitment laws (12).

However, despite the risk of morbidity and mortality from untreated AN, there is often reluctance to use coercion. Such concern may be well founded in that such treatment may not necessarily be recognized in retrospect as helpful, especially by individuals with SE-AN whose ultimate goal is quality rather than quantity of life (13). This underscores the need to develop innovative treatment options for patients with SE-AN. If clinical remission¹ is in all likelihood unreachable, one possibility could be shifting the goal of care towards harm reduction and improved quality of life (14-16). This was studied in a seminal randomized controlled trial which showed high retention rates and improvements in quality of life (14). Focusing on quality of life and relief of suffering is a hallmark of palliative care (17) whose implementation in mental health care is known as palliative psychiatry (18). Palliative psychiatry also includes end-of-life (EOL) care. EOL care is the portion of palliative care that is directed towards persons nearing death (19) as is the case for patients with life-threatening AN in the absence of life-sustaining measures. EOL care has been proposed as alternative model of care for extremely ill AN patients (16,20-22) but strongly opposed by others (23-25). Leading eating disorders experts have called for the development of guidelines, eligibility criteria, and protocols (26). However, this process is hampered by the debate around EOL care for AN not having been synthesized yet.

Rationale and objective

To clearly delineate differing views and identify open questions as well as areas of possible consensus, we conducted a scoping review in accordance with the PRISMA-ScR reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-23-522/rc) (27). The review focusses on EOL care as alternative to coerced life-sustaining measures (typically artificial nutrition) in patients with life-threatening AN who refuse them. While we appreciate the need to make high-quality care available to all AN patients (including, when needed, coercive life-sustaining measures), our aim is to explore whether, when and how EOL care could and should play a role in providing optimal care in rare cases of extremely ill AN patients. The review does neither consider the provision of palliative care for AN outside of the EOL context nor medical assistance in dying.

Methods

Our aim was to portray the current body of knowledge on EOL care for AN, clarify key concepts, and identify knowledge gaps (rather than provide a definitive, quantitative answer to a narrow question such as the effect of EOL care on standardized measures of quality of life). Therefore, scoping review methodology was most appropriate (28). As first step, a detailed protocol was developed according to Peters et al. (29) with input from all authors. As standard registries such as PROSPERO currently do not accept scoping reviews (29), we did not pre-register the review. A systematic search of the existing literature was conducted guided by the Cochrane Handbook for Systematic Reviews (30) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 statement (see the PRISMA flow diagram in Figure 1) (31). Four electronic literature databases with the appropriate thematic focus were searched (EMBASE, PubMed, PsycInfo, and Web of Science^®). The search strategy was developed according to Bramer et al. (32) using controlled and natural language to search for the key concepts AN and EOL care and related concepts such as palliation, end-stage, terminality, and futility (see Table S1 for the full search strategies). The search strategy was optimized based on sensitivity assessments using pre-determined highly relevant publications, both supportive and critical of EOL care for AN (16,21,22,33-41). The database search closed on April 15th, 2023. To compensate for eventual shortcomings, the database search was complemented with:

• A search on Google Scholar^® for “anorexia nervosa palliative care” and “anorexia nervosa end-of-life care”, including the first 100 results each in the screening;
• A hand search of the archives of the three journals with the highest impact factor in the field of palliative care (Palliative Medicine, Journal of Pain and Symptom Management, BMJ Supportive & Palliative Care) for “eating disorders” and “anorexia nervosa” and in the field of eating disorders (International Journal of Eating Disorders, European Eating Disorders Review, Journal of Eating Disorders) for “palliative”, “hospice”, “end of life”, “terminal”, and “end-stage”;
• An expert search conducted by P.W., P.S.M., M.T., and F.E.

Figure 1 PRISMA flowchart. EOL, end-of-life; AN, anorexia nervosa; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

And for all publications included in the review:

• A search for citing publications on Web of Science^® (Google Scholar^® for publications not listed on Web of Science^®), and
• A hand search of the reference lists.

Citavi^® version 6.15 was used for managing the records. After deduplication, publications were selected in a two-step process guided by inclusion and exclusion criteria (see Figure 2). The criteria were pre-determined based on the purpose of the review, piloted on the first 100 records, and then refined for clarity and consistency. To broaden the scope of our review, we did not restrict our search by publication date or language and included a variety of article types such as case reports, ethical analyses, and legal opinions. However, conference abstracts were excluded because of their inherent lack of detail and grey literature such as guidelines was excluded for pragmatic reasons. In the first screening step, titles and abstracts were screened. When publications did not have an abstract and could not be excluded unambiguously based on the title alone, they were included in the second screening step. Here, records’ full-texts were screened. Nineteen publications included in full-text screening were not written in English (7%) of which 12 were written in another language the screeners are fluent in (German or French). The full-texts of the remaining seven publications were translated to English using DeepL^®. If they could not be excluded unambiguously based on this translation, the corresponding authors were asked to verify the accuracy of the translation (n=3 with a 67% response rate) prior to the final decision on inclusion or exclusion. Ultimately, seven non-English language publications were included (6% of the included publications).

Figure 2 Inclusion and exclusion criteria (18,40,42-55). Stakeholder refers to all persons with a vested interest in a given case such as patients, significant others, and healthcare professionals. Criteria in italics were changed or added during pilot screening. EOL, end-of-life; AN, anorexia nervosa; NCBI, National Center for Biotechnology Information.

All individual exclusion decisions after full-text screening are explained in the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-1.pdf). Screening was done independently by A.L.W. and S.W. with disagreements being resolved by discussion. In case of irreconcilable disagreement, M.T. and F.E. would have decided on inclusion or exclusion of the respective record. However, this did not become necessary.

Data extraction and analysis was aligned with the purpose of the review and the nature of the records included. As very little quantitative studies could be included in the review, only qualitative findings were extracted in a simplified qualitative content analysis (56). Using Citavi^®, relevant text segments were coded with broad pre-determined main categories based on the aspects reflected in the inclusion criteria—that is, ethical reasoning, legal opinions, stakeholders’ attitudes, practical aspects, stakeholder needs—and additional aspects whose relevance became apparent during screening and extraction—that is, case reports, conceptual questions, eligibility criteria, outcome. Coding was done separately by A.L.W. and S.W. with disagreements being resolved by discussion. The main categories were then structured by creating lower-level categories reflecting the content of groups of text segments. For example, the text segment “It is argued that treatment refusals can sometimes be overridden when there is a reasonable chance of recovery, even when those decisions are competent and accepted standards for DMC are satisfied” (57) was identified as relevant, coded with the main category “ethical reasoning”, and subsequently sorted into the lower-level category “calls for hard paternalism”.

We chose the term “life-sustaining measures” to refer to intensive care for persons with life-threatening AN which usually centers on artificial nutrition. While this term is not value-free (discussed further in the section on conceptual questions), it has the advantages of being concrete as it describes interventions (which the term “treatment” does not) and implying the context of life-threatening AN (which is the scope of this review). Similar reasoning applies to our choice of “EOL care”.

In the results, publications are cited when mentioning a specific concept or argument—regardless of whether they opposed or endorsed it. To improve readability, concepts and arguments were sorted into the dichotomy of providing either coerced life-sustaining measures or EOL care. Thus, we did not consider the options of providing voluntary life-sustaining measures (as this is outside the scope of our review), forgoing both coerced life-sustaining measures and EOL care (as this does not seem defensible) (58) or providing both at the same time (as they seem mutually exclusive)². Neither of these options was discussed in the publications included in the review. The section on ethical reasoning was structured using the framework of principlism³ as the majority of publications explicitly referred to it. However, the terminology of arguments from normative theories such as virtue ethics or rights-based ethics was preserved to portray the diversity of ethical reasoning.

Results

Through two-step screening, we identified 117 publications eligible for inclusion (Figure 1), of which 104 were articles in scientific journals and 13 chapters in books from scientific publishers. The publications were published between 1984 and 2023 and almost exclusively from high-income countries [Figure 3; see the online table for further description of included studies (available at https://cdn.amegroups.cn/static/public/apm-23-522-2.pdf)]. They reported on 26 different cases of EOL care for AN patients (11,21,22,33,38,41,60-78) [see the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-3.pdf)]. These patients were between 18 and 56 years old and almost exclusively female.

Figure 3 Publication year of included publications (n=117).

In the included publications, we identified 965 relevant text segments and developed a system with 428 codes and categories [see the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-4.pdf)]. The main categories were conceptual questions, ethical reasoning, legal aspects, stakeholder attitudes, practical aspects, outcome, and stakeholder needs. We synthesize the pertaining literature in what follows.

Conceptual questions

Key concepts in the debate around EOL care for persons with AN lack established, neutral definitions. These open conceptual questions pertain to terminality including the ethico-legal significance of treatment refusals, futility including the ethico-legal significance of artificial nutrition, and DMC.

Terminality

Recently, it was debated whether AN can become terminal⁴ (Table 1). Authors opposing the concept tend to (implicitly) view a lack of therapeutic options to prevent death as definitional characteristic of terminal conditions. They then argue that this is never the case in AN as the effects of starvation are almost always reversible and clinical remission is always possible (16,23,24,63,80,83-86) and stress that danger to life stems not from lack of treatment options but from treatment refusal (16,76,86,87). Authors supporting the concept frame terminal AN as a short life expectancy combined with futility of further treatment. They argue that in the absence of nutrition, a short life expectancy can reliably be established and that some patients have DMC to declare further treatment futile (61,94). Whether AN can be terminal thus hinges on the ethico-legal significance ascribed to treatment refusals: should they be disregarded when judging the prospects of life-sustaining measures? Or is treatment refusal an inherent feature of AN that sometimes amounts to an inability to show the minimum cooperation necessary for treatment to take effect, thus justifying futility judgements (41)? Or do some AN patients have DMC to declare futility and refuse life-sustaining measures, and should this then be respected? These questions are discussed further below.

Futility

Except for actively dying patients⁵, considerable controversy surrounds the conceptualization of futility and its applicability to coerced life-sustaining measures in AN (Table 2). Authors opposing the concept may frame futility judgements as rationalizations of negative feelings towards the patient (79,81,90,104). Or they (implicitly) conceptualize futility as impossibility of achieving at least a partial clinical remission and argue that this is never the case in AN (36,79,90,91,98). Authors supporting the concept tend to conceptualize futility as unacceptable benefit/burden ratio (11,68,83,95,100,103,105) and argue that this can apply to AN as coerced life-sustaining measures sometimes only prolong patients’ suffering (11,83,105). A conceptualization of futility as unacceptably low chance of achieving at least a partial remission is endorsed by proponents from both sides. Some argue that this applies to coerced life-sustaining measures in AN when subsequent treatment of AN (e.g., psychotherapy) has a very low chance of success because no viable options remain or all options have been consistently refused by the patient when competent (68,83,101). Others counter that individual prognoses cannot be made with sufficient reliability (88,90,102) and that low chances of clinical remission stem from treatment refusal which is a symptom of AN that can and must be treated (11,16,79,90). Whether coerced life-sustaining measures can be futile in AN thus hinges on the ethico-legal significance ascribed to treatment refusals (discussed above) and on the ethico-legal significance of artificial nutrition. Making the futility or utility of artificial nutrition (and associated intensive care) contingent on chances of clinical remission, that is, on the anticipated effectiveness of subsequent AN treatment, is grounded in a view of artificial nutrition as a mere life-sustaining measure. Endorsed by several authors (63,68,70,77,105,107-112), this view increases the need for ethical justification in the form of either a patient request or an acceptable chance of improving health (77). Others, however, hold that artificial nutrition is not only a life-sustaining measure but itself treatment for AN (63,68,107,109). Here, additional ethical justification in the form of effectiveness of subsequent treatment is not needed, and the question of futility of artificial nutrition is reduced to the likelihood of sustaining life and achieving weight gain.

Another open question about both futility and terminality in AN seems to be with whom the authority lies to declare it. Because of the normativity of futility, it has been argued that such judgements should not be made by healthcare professionals alone, but based on a societal consensus and/or together with patients (61,79,90,94,104,113). The ethico-legal significance of patient-declared futility, in turn, is intertwined with the question whether patients are ascribed DMC.

DMC

While there is consensus that DMC can be impaired in AN, it is debated whether AN patients can have DMC for refusing life-sustaining measures. At the heart of this debate is the open conceptual question of how DMC should be assessed in this context (Table 3). Some contend that particularities of AN justify deviations from the functional approach to DMC assessment (23,79,80,109,132,133), such as presuming incapacity (36,109,114,115), reversing the burden of proof (98), or adding criteria for DMC such as the authenticity of the refusal’s value base (35,57,104,109,125). These calls for ethico-legal exceptionalism are complemented by calls for hard paternalism⁶ (discussed further in the section on ethical reasoning).

Others defend the functional approach, arguing that it can (and frequently does) find AN patients incapacitated (78,116) and that diagnosis-based deviation from this standard would discriminate against AN patients (38,78,120) and violate their right to self-determination (68,72,102,110,129). They further contend that incapacity regarding nutrition does not equate incapacity regarding medical intervention (11,63,68,72,75,78,113,117,130), and that the ability to appreciate the quality of one’s life and the benefits and burdens of sustaining it can suffice for refusing life-sustaining measures (63,68,72,73,78,93,112,113,117,130). Thus, whether AN patients are deemed to have DMC hinges not only on how, but also for which question this is assessed (72,78).

Ethical reasoning

Whether providing EOL care in AN instead of coercing life-sustaining measures can be justified and thus appropriate is controversial. This ethical debate is detailed in Table 4.

Beneficence

Opponents of EOL care argue that the lives of most patients can be sustained (36,68,79,83,89,92,106,109,117,122,125,128), thus preserving their chance at clinical remission (22,36,86,92,98,108,121,140). Proponents of EOL care counter that some patients are highly unlikely to experience clinical remission and a quality of life they deem acceptable (16,36,61,63,78,83,98,99,103,106,110,112,117), which makes coerced life-sustaining measures unjustifiable (68,103,105,121-123). They further contend that EOL care improves patients’ quality of life and relieves suffering (61,77,80,83,99,104,109,119,145).

Non-maleficence

Proponents of EOL care argue that the burdens of coerced life-sustaining measures are high (35,68,87,105,108-110,116,121,122,129,146) and can outweigh the benefits (36,60,94,100,112,120,130). Opponents counter that life-sustaining measures are not objectively unbearable (35,82) and that discussing EOL care can undermine patients’ motivation for clinical remission (102,119,141).

Respect for autonomy

Opponents of EOL care hold that patients lack DMC for life-sustaining measures and that their presumed wish is to be kept alive (35,68,79,98,104,114,115,128). In addition, they contend that as DMC is impaired by starvation, life-sustaining measures in the form of artificial nutrition can restore it, thus respecting patients’ future autonomy (73-75,79,80,86,91,102,108,121,122,149). Some even argue that the reversibility of starvation and/or the inappropriateness of standard DMC assessment in AN (see above) justify coercing patients who meet DMC criteria, that is, hard paternalism (57,68,79,83,93,106,132,133,155). Proponents of EOL care counter that hard paternalism perpetuates stigmatization of persons with mental illness (57) and that treatability is not a sufficient reason for overriding patients’ right to have their competent refusal respected (33,57,91,93,109,113,121,122,135,137,147). Also, they argue that the possibility of EOL care encourages honest discussions about options and prognosis, enabling patients to make autonomous decisions (94,105).

Justice

Opponents of EOL care argue that it endangers patients’ access to care aiming at clinical remission (82,141) and violates their right to be treated regardless of compliance and costs (108,141) which is already infringed on by lack of affordable high-quality care (37,150-153). Proponents of EOL care counter that AN patients should have the same access to EOL care as persons with somatic illnesses (36,38,76,93,112,116). In addition, they contend that providing EOL care acknowledges that psychological suffering can be as real and painful as physical suffering, thus countering stigma (11,16,38,71,80).

Legal aspects⁷

It has been recognized that it may be more difficult to civilly commit a patient with AN than for other psychiatric illnesses. Compared to mental disorders such as schizophrenia or bipolar disorder (whose deficits are more likely global) individuals with AN tend to lack DMC in one circumscribed area (food and eating) with preservation of DMC in other areas. In addition, society’s tendency to revere thinness (underestimating the dangers associated with thinness is its most extreme form) may impede judicial findings in favor of civil commitment (12).

Legal cases involving patients with AN have addressed the role of the court in ensuring that appropriate criteria are used for coerced treatment, e.g., clarifying that medications may be warranted in treating patients with severe AN (12). We identified six legal cases, mostly from the United Kingdom, in which the courts declared it lawful to forgo coerced life-sustaining measures and/or provide EOL care for a patient with AN [see the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-3.pdf), column 10] (11,36,68,72-74,76-78,98,107,129). In another case, the court ordered EOL care to be discontinued in favor of coerced life-sustaining measures (11,36,68,77,98,129). Of note, in none of these cases was the patient found to have retained DMC by the court, and rulings were based instead on best interest considerations (see above for the debate on DMC assessment in AN).

To promote patients’ autonomy, advance directives are proposed in the literature (71,73,99). However, there is legal uncertainty as to how persons with AN can ensure that their advance directive is not declared invalid on grounds of incapacity (36,77,91,98,107,122).

The lawfulness of forgoing coercive life-sustaining measures and/or providing EOL care in AN is also discussed under human rights law. Regarding the European Convention on Human Rights, coerced life-sustaining measures interfere with patients’ rights under Article 3 (prohibition of inhuman and degrading treatment) and 8 (right to respect for private and family life). This can, but need not, be necessary and proportionate to defend their right under Article 2 (right to life) (36,77,78,98,107,121). In the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), persons with psychosocial disabilities such as AN are explicitly included. The UNCRPD monitoring committee has interpreted Article 12 (right to equality before the law) as ruling out incapacity judgements as legal grounds for coercion, rendering any coerced life-sustaining measures in AN unlawful (116,129,136). This has been contested by authors interpreting Article 12 as (I) only ruling out coercion of persons who have DMC while (II) calling for respecting the preferences of persons who do not have DMC to the greatest extent possible (111,135).

Stakeholder attitudes

We identified six empirical studies on attitudes towards forgoing life-sustaining measures and EOL care for AN. Two studies interviewed patients (n=10 and 29, respectively) and significant others from the United Kingdom (115,133). Participants in both studies mostly believed that persons with life-threatening AN lack DMC and supported coerced life-sustaining measures. The patients were 13 to 26 years old, only few had been subjected to formal coercion, and whether any had been subjected to coerced life-sustaining measures was not reported.

Four studies surveyed mental healthcare professionals. In a survey among senior psychiatrists in the United Kingdom (37), O’Neill et al.’s case report on hospice care for a 24-year-old AN patient (62) received little support (median score of 23 on a visual analogue scale from 0 to 100; n=43). Three studies (146,156,157) of mental healthcare professionals in Switzerland used the fictional case vignette of a 37-year-old patient with a 26-year history of AN, multiple failed high-quality treatment attempts, and a current body mass index of 9.5 kg/m², who was deemed to have DMC for her refusal of further treatment. Most respondents believed further curative treatment to most likely be futile (73% of n=453 psychiatrists) and would not be surprised if the patient died within 6 months (87% of n=454 psychiatrists) (157). Consequently, the majority would prioritize quality of life over life expectancy (82% of n=452 psychiatrists and 91% of n=30 mental health nurses) (156,157) and agreed that palliative sedation could be appropriate (73% of n=24 mental health nurses) (156). While the majority would forgo coerced treatment in such a case (62% of n=454 psychiatrists and 73% of n=24 mental health nurses), a substantial minority reported they would coerce treatment (21% of n=454 psychiatrists) (146,156), indicating either disbelief in the stated DMC of the patient or hard paternalism (discussed further in the section on ethical reasoning).

Practical aspects of EOL care

Practical aspects pertain to deliberating about EOL care including eligibility criteria and to providing EOL care. The overarching recommendation from the literature is to make voluntary treatment aiming at sustaining life and (at least partial) clinical remission available at all times (22,33,61,68,79,91,99,119,137). Procedural recommendations for deliberating about and recommendations for providing EOL care were highly consistent and are depicted in Table 5. In contrast, diverse eligibility criteria have been proposed, reflecting controversy even among authors who agree that EOL care for AN can be justifiable. Contested questions include: Can and should quantitative eligibility criteria be developed (such as number of previous treatment attempts) or only procedural criteria that describe which aspects need to be considered in a case-by-case evaluation (11,38,71,80,88,93,100)? Which moral weight should be given to the patient’s preferences, healthcare professionals’ assessment, and societal values (11,34,45,75,83,93,100,106,112,113,145)?

The proposed eligibility criteria pertain to confirmed DMC, unlikelihood of benefit from coerced life-sustaining measures, quality of life, and expiration of a waiting period. Proponents of DMC as eligibility criterion usually refer to DMC not for eating but for life-sustaining measures and call for very careful assessment (11,16,61,74,100,112). The criterion of unlikelihood of benefit can refer to somatic health and survival, meaning patients are deemed eligible for EOL care when actively dying and/or coerced life-sustaining measures cannot improve their prognosis quoad vitam (68,79,80,97,108). Unlikelihood of benefit can also refer to mental health and clinical remission and several proposed eligibility criteria attempt to operationalize it. These include higher age, long duration of AN, several high-quality treatment attempts including coerced treatment, lack of benefit from previous treatment attempts, and lack of motivation for clinical remission or harm reduction (11,12,16,22,38,61,69,75,83,85,93,97,100,102,105-107,110,112,119,158-160). Unacceptable quality of life is usually proposed as eligibility criterion in conjunction with unlikelihood of benefit, thus amounting to irremediable suffering (11,22,75,83,106,110,158). Additionally, many authors propose expiration of a certain waiting period as due-diligence criterion for eligibility for EOL care. This is deemed necessary to (I) treat the patient to competence for an advance directive (101,121); (II) allow for a thorough assessment of eligibility, e.g., verifying that the treatment refusal is consistent over time (11,16,61,74,75,100,110,121); or (III) give the family time to process the impending death (83,106).

Needs of stakeholders

We identified only one empirical study on stakeholder needs regarding forgoing life-sustaining measures and/or EOL care for AN, a qualitative interview study with Dutch mental healthcare professionals (119). These professionals struggled with diagnostic uncertainty in AN, proper timing for initiating discussions about EOL care, assessment of psychological and spiritual suffering, differentiation of capricious from competent treatment refusals, and with EOL care conflicting with their professional identity as healer. They identified the need for a clear concept of EOL care for AN and for support from other specialties.

Outcome of EOL care

We did not identify any empirical study on outcome of forgoing life-sustaining measures and/or EOL care for AN. In case reports [see the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-3.pdf)], quality of life during EOL care is described as good with subjective well-being and improved interpersonal relationships (22,41,61,62,64,75). The majority of patients died days to months after initiation of EOL care. Some patients, however, came to accept life-sustaining measures and even AN treatment and improved both regarding somatic and mental health, at least for some time (21,22,33,64,67).

Discussion

In this scoping review of EOL care in AN, we identified 117 publications eligible for inclusion. Controversy surrounded the question whether providing EOL care in AN instead of coercing life-sustaining measures can be justified and thus appropriate. Ethical reasoning centered on weighing the preservation of life versus quality of life in the context of uncertainty about DMC and likelihood of clinical remission. Studies on stakeholder attitudes reflected this challenge. While patients with life-threatening AN often meet legal criteria for coerced treatment, this should not be pursued automatically. In some cases, courts have ruled against coerced life-sustaining measures and/or in favor of EOL care for AN patients. While eligibility criteria were contested, procedural recommendations for deliberating about and recommendations for providing EOL care for persons with AN were consistent. We identified only one study on stakeholder needs and none on outcome. Case reports described quality of life under EOL care as good and death as the most frequent outcome but treatment acceptance and improvement in a minority.

Thus, our scoping review portrayed the complexity of the topic and associated debate and revealed two reasons for this, namely that several conceptual questions remain open and that it touches on fundamental normative questions. Regarding open conceptual questions, key terms such as terminality, futility, and DMC in AN are used by different authors in very different ways, often without making this explicit. Authors tend to use conceptualizations of key terms that promote their own stance towards forgoing coerced life-sustaining measures and/or providing EOL care in AN. For example, opponents of EOL care for AN tend to conceptualize futility as impossibility whereas proponents tend to view it as unacceptable benefit/burden-ratio. The conceptualizations are thus value-laden and intertwined with the arguments based on them instead of providing neutral terminological ground for the debate. In addition, some conceptualizations and pertaining arguments are circular. For example, it is argued that futility is not applicable to AN as AN cannot be end-stage or terminal (11,16,79) and that AN cannot be terminal or end-stage as treatment in AN is never futile (11,73,79,88,91). Thus, the debate around EOL care in AN would be furthered by consented, coherent terminology whose value base is reduced to a minimum and is transparent.

Another factor complicating the debate is uncertainty, especially regarding patients’ DMC and the likelihood of clinical remission after coerced life-sustaining measures. This uncertainty stems in part from the scarcity and usually observational design of outcome studies, which leaves much room for interpretation and thus subjectivity. For example, increased mortality after coerced treatment for AN has been reported in observational studies (161). For opponents of EOL care, this exemplifies the heightened need for intervention, if necessary against the patient’s stated wishes (109), while for proponents of EOL care, the same result indicates the ineffectiveness or even harmfulness of coercion (121,122,124). Therefore, many authors, regardless of their stance towards EOL care for AN, call for further research on these topics (80,88,105,136). And of course, reducing uncertainty would likely allow care to be better tailored to the individual and reduce moral distress in healthcare professionals. However, data will never tell us the exact prognosis of a given patient or whether she has DMC. How data is interpreted and applied to a specific case is a normative and thus subjective question. For example, opponents of EOL care tend to refer to aggregated data such as the proportion of AN patients experiencing at least partial remission to substantiate their claim that life-sustaining measures are always appropriate (24,70,79,86,88,91,109). Proponents counter by presenting cases to which they believe the aggregated data are not generalizable (38,61,75,103).

Therefore, the underlying normative questions need to be addressed: what is the appropriate balance between evidence-based and case-/experience-based prognostication? How do we factor uncertainty into decision-making in clinical ethics? How high do we set the bar for AN patients to be deemed competent to refuse life-sustaining measures? Are we prepared to make diagnosis-based exceptions to ethico-legal standards such as the presumption of DMC or the inappropriateness of overriding competent refusals? Which ethico-legal significance do we ascribe to treatment refusals? Should they be disregarded when judging the prospects of life-sustaining measures? Or are they an inherent feature of AN that sometimes amounts to an inability to show the minimum cooperation necessary for treatment to take effect, thus justifying futility judgements? Is it appropriate to weigh quantity versus quality of life and how do we do that? And regarding all these questions, which moral weight should be given to the patient’s preferences, healthcare professionals’ assessment, and societal values?

To help answer these questions, descriptive and normative ethics research is needed, prioritizing the voices of stakeholders. Important steps in this direction are recent publications co-authored by persons with lived experience of AN (61,100,104,141) and a qualitative study of persons with lived experience of coerced life-sustaining measures for AN (13). The attitudes of various stakeholder groups need to be measured and compared in representative studies, including possible determinants such as personality traits and religious beliefs. The needs of AN patients and their significant others during deliberation about and provision of EOL care need to be systematically assessed, especially as EOL care—like palliative care in general—should be provided based on needs (17). The outcomes of EOL care in AN need to be studied to allow for a better assessment of the benefits and burdens associated with this option, e.g., by comparing the accounts of significant others of patients that died from AN with versus without EOL care. Also, the meaning of concepts such as “suffering”, “unacceptable quality of life”, and “good death” in the context of AN needs to clarified, operationalized, and made reliably measurable (38,119).

Strengths and limitations

Strengths of this study are its wide thematic and methodological scope, the systematic literature search including four databases and complementary search strategies, the lack of restrictions regarding language or year of publication, and the in-depth analysis of included publications. However, the search’s sensitivity for legal analyses might be low as neither archives of legal journals nor databases of legal rulings were searched. Also, we excluded grey literature for pragmatic reasons and might thus have missed important information, e.g., contained in eating disorder guidelines. Due to the number of text segments analyzed and characteristics of the qualitative approach, especially the complexity of the category system, it was not feasible to tabulate all text segments coded with each category. However, we tabulated all cases of EOL care [see the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-3.pdf)] and provided the category system [see the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-4.pdf)]. In addition, all authors believe that providing EOL care (understood as not including medical assistance in dying) in AN can be justifiable in rare and extreme circumstances, which might have biased analysis and interpretation. Lastly, as a scoping review instead of a meta-analysis, our results do not allow for firm policy or clinical recommendations.

Conclusions

The debate around EOL care in AN needs consented, coherent terminology whose value base is reduced to a minimum and made transparent. While more empirical research into decision making in AN and (predictors of) outcome might help reduce uncertainty, it is vital to address fundamental normative questions, for example regarding the ethico-legal significance of treatment refusals, the weighing of quantity versus quality of life and the appropriateness of diagnosis-based ethico-legal exceptionalism such as hard paternalism. More research is needed on stakeholder needs regarding, outcome of, and concepts relevant for EOL care for persons with AN.

Acknowledgments

Funding: None.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine for the series “Ethics and Psychiatry Meet Palliative Medicine”. The article has undergone external peer review.

Reporting Checklist: The authors have completed the PRISMA-ScR reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-522/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-522/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-522/coif). The series “Ethics and Psychiatry Meet Palliative Medicine” was commissioned by the editorial office without any funding or sponsorship. P.W. has received royalties for a book on eating disorders from American Psychiatric Association Press (APA Press) and consulting fees and payment for expert testimony from her private forensic practice. M.T. served as the unpaid Guest Editor of the series. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

¹Following the DSM 5 (2), we define (full) clinical remission as absence of symptoms that are diagnostic criteria for AN, i.e., as return to normal body weight and absence of behavioral symptoms (such as restricted eating) and psychological symptoms (such as intense fear of gaining weight) over a sustained period of time. We define partial clinical remission as return to normal body weight with some remaining behavioral and/or psychological symptoms.

²This is not to say that coercion cannot be a justifiable part of EOL care. For example, in case of other-endangering behavior, coercion may be a necessary precondition for providing EOL care. However, this is hardly ever the case in AN, and coerced life-sustaining measures seem mutually exclusive with EOL care.

³Principlism is a normative framework developed by Beauchamp and Childress (59) that is based on the ethical principles of respect for autonomy, beneficence, non-maleficence, and justice. Normative means relating to value judgements (rather than facts alone).

⁴The current debate around terminal AN has many structural and material parallels to the earlier debate around end-stage AN. Also, the terms are often used interchangeably, e.g., by Geppert (79). Therefore, the concept of end-stage AN is not discussed here; relating categories can be found in the online table (available at https://cdn.amegroups.cn/static/public/apm-23-522-4.pdf).

⁵The term actively dying refers to the last days or hours of life, characterized by a breakdown of physiologic functions (96). In persons dying from starvation, a point of no return is reached when the molecular structures necessary for metabolizing nutrients have themselves been metabolized.

⁶Applying the definition of Dworkin (134), hard paternalism refers to coercing patients that have DMC, whereas soft paternalism refers to coercing patients that lack DMC.

⁷Legal opinions regarding the conceptualization of terminality, futility, and DMC in AN patients are incorporated into the section on conceptual questions (see above). Legal analyses on whether coerced life-sustaining measures or EOL care is in patients’ best interest are similar to ethical reasoning based on the principles of beneficence and non-maleficence (see above) and thus not detailed here.

References

1. Keski-Rahkonen A, Mustelin L. Epidemiology of eating disorders in Europe: prevalence, incidence, comorbidity, course, consequences, and risk factors. Curr Opin Psychiatry 2016;29:340-5. [Crossref] [PubMed]
2. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC; 2013.
3. Westmoreland P, Krantz MJ, Mehler PS. Medical Complications of Anorexia Nervosa and Bulimia. Am J Med 2016;129:30-7. [Crossref] [PubMed]
4. Brockmeyer T, Friederich HC, Schmidt U. Advances in the treatment of anorexia nervosa: a review of established and emerging interventions. Psychol Med 2018;48:1228-56. [Crossref] [PubMed]
5. Zeeck A, Herpertz-Dahlmann B, Friederich HC, et al. Psychotherapeutic Treatment for Anorexia Nervosa: A Systematic Review and Network Meta-Analysis. Front Psychiatry 2018;9:158. [Crossref] [PubMed]
6. Khalsa SS, Portnoff LC, McCurdy-McKinnon D, et al. What happens after treatment? A systematic review of relapse, remission, and recovery in anorexia nervosa. J Eat Disord 2017;5:20. [Crossref] [PubMed]
7. Gregertsen EC, Mandy W, Kanakam N, et al. Pre-treatment patient characteristics as predictors of drop-out and treatment outcome in individual and family therapy for adolescents and adults with anorexia nervosa: A systematic review and meta-analysis. Psychiatry Res 2019;271:484-501. [Crossref] [PubMed]
8. Zipfel S, Giel KE, Bulik CM, et al. Anorexia nervosa: aetiology, assessment, and treatment. Lancet Psychiatry 2015;2:1099-111. [Crossref] [PubMed]
9. Keshaviah A, Edkins K, Hastings ER, et al. Re-examining premature mortality in anorexia nervosa: a meta-analysis redux. Compr Psychiatry 2014;55:1773-84. [Crossref] [PubMed]
10. Chesney E, Goodwin GM, Fazel S. Risks of all-cause and suicide mortality in mental disorders: a meta-review. World Psychiatry 2014;13:153-60. [Crossref] [PubMed]
11. Westmoreland P, Mehler PS. Ethical and Medicolegal Considerations in Treating Patients with Eating Disorders. In: Mehler PS, Andersen AE, editors. Eating disorders: A guide to medical care and complications. 4th edition. Baltimore: Johns Hopkins University Press; 2022.
12. Westmoreland P, Johnson C, Stafford M, et al. Involuntary Treatment of Patients With Life-Threatening Anorexia Nervosa. J Am Acad Psychiatry Law 2017;45:419-25. [PubMed]
13. Rienecke RD, Dimitropoulos G, Duffy A, et al. Involuntary treatment: A qualitative study from the perspectives of individuals with anorexia nervosa. Eur Eat Disord Rev 2023;31:850-62. [Crossref] [PubMed]
14. Touyz S, Le Grange D, Lacey H, et al. Treating severe and enduring anorexia nervosa: a randomized controlled trial. Psychol Med 2013;43:2501-11. [Crossref] [PubMed]
15. Williams KD, Dobney T, Geller J. Setting the eating disorder aside: an alternative model of care. Eur Eat Disord Rev 2010;18:90-6. [Crossref] [PubMed]
16. Westmoreland P, Mehler PS. Caring for Patients With Severe and Enduring Eating Disorders (SEED): Certification, Harm Reduction, Palliative Care, and the Question of Futility. J Psychiatr Pract 2016;22:313-20. [Crossref] [PubMed]
17. Radbruch L, De Lima L, Knaul F, et al. Redefining Palliative Care-A New Consensus-Based Definition. J Pain Symptom Manage 2020;60:754-64. [Crossref] [PubMed]
18. Westermair AL, Buchman DZ, Levitt S, et al. Palliative psychiatry in a narrow and in a broad sense: A concept clarification. Aust N Z J Psychiatry 2022;56:1535-41. [Crossref] [PubMed]
19. Schüttengruber G, Großschädl F, Lohrmann C. A Consensus Definition of End of Life from an International and Interdisciplinary Perspective: A Delphi Panel Study. J Palliat Med 2022;25:1677-85. [Crossref] [PubMed]
20. Weber S, Paulzen M, Elsner F, et al. Wegen Anorexia nervosa auf die Palliativstation? Nervenarzt 2023;94:631-3. [Crossref] [PubMed]
21. Yager J. Managing Patients With Severe and Enduring Anorexia Nervosa: When Is Enough, Enough? J Nerv Ment Dis 2020;208:277-82. [Crossref] [PubMed]
22. Lopez A, Yager J, Feinstein RE. Medical futility and psychiatry: palliative care and hospice care as a last resort in the treatment of refractory anorexia nervosa. Int J Eat Disord 2010;43:372-7. [Crossref] [PubMed]
23. Starzomska M. Controversial issues concerning the concept of palliative care of anorexic patients. Archives of Psychiatry and Psychotherapy 2010;4:49-59.
24. Williams CJ, Pieri L, Sims A. Does palliative care have a role in treatment of anorexia nervosa? We should strive to keep patients alive. BMJ 1998;317:195-6. [Crossref] [PubMed]
25. Goldner EM, McKenzie JM, Kline SA. The ethics of forced feeding in anorexia nervosa. CMAJ 1991;144:1205-6. [PubMed]
26. Wonderlich SA, Bulik CM, Schmidt U, et al. Severe and enduring anorexia nervosa: Update and observations about the current clinical reality. Int J Eat Disord 2020;53:1303-12. [Crossref] [PubMed]
27. Tricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med 2018;169:467-73. [Crossref] [PubMed]
28. Munn Z, Peters MDJ, Stern C, et al. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol 2018;18:143. [Crossref] [PubMed]
29. Peters MDJ, Godfrey C, McInerney P, et al. Best practice guidance and reporting items for the development of scoping review protocols. JBI Evid Synth 2022;20:953-68. [Crossref] [PubMed]
30. Higgins JPT, Thomas J, Chandler J, et al. Cochrane handbook for systematic reviews of interventions. Version 6.3. Cochrane; 2019.
31. Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. Int J Surg 2021;88:105906. [Crossref] [PubMed]
32. Bramer WM, de Jonge GB, Rethlefsen ML, et al. A systematic approach to searching: an efficient and complete method to develop literature searches. J Med Libr Assoc 2018;106:531-41. [Crossref] [PubMed]
33. Trachsel M, Wild V, Biller-Andorno N, et al. Compulsory Treatment in Chronic Anorexia Nervosa by All Means? Searching for a Middle Ground Between a Curative and a Palliative Approach. Am J Bioeth 2015;15:55-6. [Crossref] [PubMed]
34. Paris JJ, Hawkins A. "Futility" Is a Failed Concept in Medical Decision Making: Its Use Should Be Abandoned. Am J Bioeth 2015;15:50-2. [Crossref] [PubMed]
35. Bruni T, Weijer C. A Misunderstanding Concerning Futility. Am J Bioeth 2015;15:59-60. [Crossref] [PubMed]
36. Coggon J. Anorexia nervosa, best interests, and the patient's human right to 'a wholesale overwhelming of her autonomy': a local authority v. E [2012] EWHC 1639 (COP) [2012] HRLR 29. Med Law Rev 2014;22:119-30. [Crossref] [PubMed]
37. Ramsay R, Treasure J. Treating anorexia nervosa. Psychiatrists have mixed views on use of terminal care for anorexia nervosa. BMJ 1996;312:182. [Crossref] [PubMed]
38. Campbell AT, Aulisio MP. The stigma of "mental" illness: end stage anorexia and treatment refusal. Int J Eat Disord 2012;45:627-34. [Crossref] [PubMed]
39. Forbes DA. Futility in adolescent anorexia nervosa and the question of withdrawal of care. J Paediatr Child Health 2020;56:5-7. [Crossref] [PubMed]
40. Westermair AL, Buchman DZ, Levitt S, et al. Palliative Psychiatry for Severe and Enduring Anorexia Nervosa Includes but Goes beyond Harm Reduction. Am J Bioeth 2021;21:60-2. [Crossref] [PubMed]
41. Kaplan AS, Miles A. The role of palliative care in severe and enduring anorexia nervosa. In: Touyz SW, Le Grange D, Lacey JH, et al. editors. Managing severe and enduring anorexia nervosa: A clinician's guide. New York, NY: Routledge/Taylor & Francis Group; 2016:223-30.
42. Bulik CM. Are we really paddling as fast as we can? Reflections on why eating disorders treatment and research always seem to be one step behind: commentary on Hay, Mitchell, and Stice & Becker: Prevention and treatment. Int J Eat Disord 2013;46:489-91. [Crossref] [PubMed]
43. Vandereycken W. Whose competence should we question? Eur Eat Disord Rev 1998;6:1-3. [Crossref]
44. Bianchi A, Stanley K, Sutandar K. The Ethical Defensibility of Harm Reduction and Eating Disorders. Am J Bioeth 2021;21:46-56. [Crossref] [PubMed]
45. Takimoto Y. Indications for involuntary hospitalization for refusal of treatment in severe anorexia nervosa: a survey of physicians and mental health care review board members in Japan. J Eat Disord 2022;10:176. [Crossref] [PubMed]
46. Fidelle G, Corcos M, Bochereau D, et al. Anorexia nervosa and artificial alimentation. Experience in psychiatric service for adolescents and young adults. Ann Med Psychol 1997;155:240-8.
47. Krüger MB. Eating disorders - A challenge for next level? Tidsskr Nor Laegeforen 2002;122:257. [PubMed]
48. Spadini S, Ferro M, Lamanna J, et al. Activity-based anorexia animal model: a review of the main neurobiological findings. J Eat Disord 2021;9:123. [Crossref] [PubMed]
49. Valcárcel Sancho FJ. Tratamiento de la anorexia y caquexia en el paciente terminal. Oncologia 2005;28:29-32.
50. Levitt G. Serious Mental Illness and Hospice Care. J Palliat Care 2022;37:13-4. [Crossref] [PubMed]
51. Coulter A, Schuermeyer I, Sola C. Evaluating Ineffective Treatments: A Proposed Model for Discussing Futility in Psychiatric Illness. Harv Rev Psychiatry 2021;29:240-5. [Crossref] [PubMed]
52. Wilson F. RANZCP Abstracts: Terminal Care in Anorexia Nervosa. Aust N Z J Psychiatry 2017;51:25.
53. Magagna J. 'Compelled to die': Psychotherapy with a girl who does not talk, walk, or eat. In: Magagna J, editor. The silent child: Communication without words. London: Karnac Books; 2012:191-220.
54. Gans M, Gunn WB Jr. End-stage anorexia: Criteria for competence to refuse treatment. In: Sisti DA, Caplan AL, Rimon-Greenspan H, editors. Applied ethics in mental health care: An interdisciplinary reader. Cambridge, MA: Boston Review; 2013:91-114.
55. Cowan J. Coercive and Compulsive Treatment of Eating Disorders: Surveying Treatment Providers? Attitudes and Behavior. Antioch University; 2020.
56. Kuckartz U. Qualitative Inhaltsanalyse: Methoden, Praxis, Computerunterstützung. 4th ed. Weinheim: Beltz Juventa; 2018.
57. Charland LC. Ethical and conceptual issues in eating disorders. Curr Opin Psychiatry 2013;26:562-5. [Crossref] [PubMed]
58. Trachsel M, Irwin SA, Biller-Andorno N, et al. Palliative psychiatry for severe and persistent mental illness. Lancet Psychiatry 2016;3:200. [Crossref] [PubMed]
59. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. USA: Oxford University Press; 2019.
60. Hébert PC, Weingarten MA. The ethics of forced feeding in anorexia nervosa. CMAJ 1991;144:141-4. [PubMed]
61. Gaudiani JL, Bogetz A, Yager J. Terminal anorexia nervosa: three cases and proposed clinical characteristics. J Eat Disord 2022;10:23. [Crossref] [PubMed]
62. O'Neill J, Crowther T, Sampson G. A case study: anorexia nervosa. Palliative care of terminal psychiatric disease. Am J Hosp Palliat Care 1994;11:36-8. [Crossref] [PubMed]
63. Draper H. Treating anorexics without consent: some reservations. J Med Ethics 1998;24:5-7. [Crossref] [PubMed]
64. Lopez A. Moral residue: difficult ethical choices in the treatment of refractory anorexia nervosa. Clin Soc Work J 2010;38:236-9. [Crossref]
65. Behandlungsabbruch bei Anorexie? Ethik Med 2010;22:131-2. [Crossref]
66. Mishra R. The case: Starving for perfection. Camb Q Healthc Ethics 2012;21:396-7. [Crossref] [PubMed]
67. What actually happened. Camb Q Healthc Ethics 2012;21:408. [Crossref] [PubMed]
68. Giordano S. Anorexia Nervosa: A Case for Exceptionalism in Ethical Decision Making. Philosophy, Psychiatry, & Psychology 2019;26:315-31. [Crossref]
69. Woodside DB, Twose RM, Olteanu A. Hospital admissions in severe and enduring anorexia nervosa: When to admit, when not to admit, and when to stop admitting. In: Touyz SW, Le Grange D, Lacey JH, et al. editors. Managing severe and enduring anorexia nervosa: A clinician's guide. New York, NY: Routledge/Taylor & Francis Group; 2016:191-204.
70. Sawhill C, Fipps DC, Palomo JV, et al. End-Stage Anorexia Nervosa: When to Say "When"-A Literature Review of an Ethically Complicated Case. Psychosomatics 2020;61:779-86. [Crossref] [PubMed]
71. Westmoreland P, Erickson L, Bermudez O. Eating Disorders and Palliative Care. In: Westmoreland P, editor. Tipping the scales. American Psychiatric Association Publishing; 2020:153-64.
72. Watkins MJB. Northamptonshire Healthcare NHS Foundation Trust V AB [2020] EWCOP 40-Mental Capacity and the Anorexic Patient in the Court of Protection: Understanding Values, Framing Matters and Specification of the Declaration. Med Law Rev 2022;30:364-79. [Crossref] [PubMed]
73. Westmoreland P, Mehler PS. Role of Palliative Care in Severe and Enduring Eating Disorders. In: Preedy VR, editor. Handbook of Nutrition and Diet in Palliative Care. CRC Press; 2019:361-9.
74. Westmoreland P, Parks L, Lohse K, et al. Severe and Enduring Anorexia Nervosa and Futility: A Time for Every Purpose? Psychiatr Clin North Am 2021;44:603-11. [Crossref] [PubMed]
75. Gans M, Gunn WB Jr. End stage anorexia: criteria for competence to refuse treatment. Int J Law Psychiatry 2003;26:677-95. [Crossref] [PubMed]
76. Jackson JZ. A Case Note Regarding Force-Feeding of Anorexic Patients and the Right to Die. MD Advis 2017;10:20-4. [PubMed]
77. Mackenzie R, Ms X. A Promising New View of Anorexia Nervosa, Futility, and End-of-Life Decisions in a Very Recent English Case. Am J Bioeth 2015;15:57-8. [Crossref] [PubMed]
78. Wang DWL. Mental Capacity Act, Anorexia Nervosa and the Choice Between Life-Prolonging Treatment and Palliative Care: A NHS Foundation Trust v Ms X. Mod Law Rev 2015;78:871-82. [Crossref]
79. Geppert CM. Futility in Chronic Anorexia Nervosa: A Concept Whose Time Has Not Yet Come. Am J Bioeth 2015;15:34-43. [Crossref] [PubMed]
80. Geppert CMA. Futility in Anorexia Nervosa. In: Cooper DB, Cooper J, editors. Palliative Care Within Mental Health. Routledge; 2018:255-66.
81. Pies RW. Anorexia Nervosa, "Futility," and Category Errors. Am J Bioeth 2015;15:44-6. [Crossref] [PubMed]
82. Melamed Y, Mester R, Margolin J, et al. Involuntary treatment of anorexia nervosa. Int J Law Psychiatry 2003;26:617-26. [Crossref] [PubMed]
83. Giordano S. Anorexia and Refusal of Life-Saving Treatment: The Moral Place of Competence, Suffering, and the Family. Philos Psychiatr Psychol 2010;17:143-54. [Crossref]
84. Riddle M, O'Melia AM, Bauschka M. First, do no harm: the proposed definition of "terminal anorexia" is fraught with danger for vulnerable individuals. J Eat Disord 2022;10:81. [Crossref] [PubMed]
85. Guarda AS, Hanson A, Mehler P, et al. Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined. J Eat Disord 2022;10:79. [Crossref] [PubMed]
86. Mack RA, Stanton CE. Responding to "Terminal anorexia nervosa: three cases and proposed clinical characteristics". J Eat Disord 2022;10:87. [Crossref] [PubMed]
87. Tumba J, Smith M, Rodenbach KE. Clinical and Ethical Dilemmas in the Involuntary Treatment of Anorexia Nervosa. Harv Rev Psychiatry 2023;31:14-21. [Crossref] [PubMed]
88. Crow SJ. Terminal anorexia nervosa cannot currently be identified. Int J Eat Disord 2023;56:1329-34. [Crossref] [PubMed]
89. Fedyszyn IE, Sullivan GB. Ethical re-evaluation of contemporary treatments for anorexia nervosa: Is an aspirational stance possible in practice? Aust Psychol 2007;42:198-211. [Crossref]
90. Geppert CMA. Psychotherapeutic futility. In: Trachsel M, Gaab J, Biller-Andorno N, et al. editors. The Oxford handbook of psychotherapy ethics. New York, NY: Oxford University Press; 2021:447-60 (Oxford handbooks in philosophy and psychiatry).
91. Tan JOA, Richards L. Legal and Ethical Issues in the Treatment of Really Sick Patients with Anorexia Nervosa. In: Robinson PH, Nicholls D, editors. Critical care for anorexia nervosa: The MARSIPAN guidelines in practice. Cham: Springer International Publishing; 2015:113-50.
92. Vialettes B, Samuelian-Massat C, Valéro R, et al. The refusal of treatment in anorexia nervosa, an ethical conflict with three characters: "the girl, the family and the medical profession". Discussion in a French legislative context. Diabetes Metab 2006;32:306-11. [Crossref] [PubMed]
93. Giordano S. Anorexia nervosa and refusal of naso-gastric treatment: a response to Heather Draper. Bioethics 2003;17:261-78. [Crossref] [PubMed]
94. Yager J, Gaudiani JL, Treem J. Eating disorders and palliative care specialists require definitional consensus and clinical guidance regarding terminal anorexia nervosa: addressing concerns and moving forward. J Eat Disord 2022;10:135. [Crossref] [PubMed]
95. Xu YE, Sisti D. Futility and Terminal Mental Illness: The Conceptual Clarification Continues. Perspect Biol Med 2021;64:44-55. [Crossref] [PubMed]
96. Hui D, Nooruddin Z, Didwaniya N, et al. Concepts and definitions for "actively dying," "end of life," "terminally ill," "terminal care," and "transition of care": a systematic review. J Pain Symptom Manage 2014;47:77-89. [Crossref] [PubMed]
97. Kirby J. Reconceptualizing 'Psychiatric Futility': Could Harm Reduction, Palliative Psychiatry and Assisted Dying Constitute a Three-Component Spectrum of Appropriate Practices? Am J Bioeth 2021;21:65-7. [Crossref] [PubMed]
98. Ip EC. Anorexia nervosa, advance directives, and the law: A British perspective. Bioethics 2019;33:931-6. [Crossref] [PubMed]
99. Bauwens I, Cottencin O, Rolland B, et al. Place des soins de support dans la prise en charge de l'anorexie mentale chronique réfractaire. La Presse Médicale 2014;43:263-9. [Crossref] [PubMed]
100. McKinney C. Is Resistance (N)ever Futile? A Response to "Futility in Chronic Anorexia Nervosa: A Concept Whose Time Has Not Yet Come" by Cynthia Geppert. Am J Bioeth 2015;15:53-4. [Crossref] [PubMed]
101. Nelson MT. Commentary: Practical wisdom and theory. Camb Q Healthc Ethics 2012;21:404-8. [Crossref] [PubMed]
102. Schmitz D, Ernst JP. Kommentar II zum Fall: “Behandlungsabbruch bei Anorexie?” Ethik Med 2010;22:135-7. [Crossref]
103. Yager J. The Futility of Arguing About Medical Futility in Anorexia Nervosa: The Question Is How Would You Handle Highly Specific Circumstances? Am J Bioeth 2015;15:47-50. [Crossref] [PubMed]
104. Elwyn R. A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope. J Eat Disord 2023;11:2. [Crossref] [PubMed]
105. Westermair AL, Perrar KM, Schweiger U. Ein palliativer Ansatz für schwerste Anorexia nervosa? Nervenarzt 2020;91:411-6. [Crossref] [PubMed]
106. Giordano S. Choosing death in cases of anorexia nervosa: should we ever let people die from anorexia nervosa? In: Grey W, Grote B, editors. Death And Anti-Death, Volume 6: Thirty Years After Kurt Godel (1906-1978). Ria University Press; 2008:79-100.
107. Coggon J. Alcohol Dependence and Anorexia Nervosa: Individual Autonomy and the Jurisdiction of the Court of Protection. Med Law Rev 2015;23:659-67. [Crossref] [PubMed]
108. Percutaneous feeding tube placement and severe anorexia nervosa. Gastroenterol Nurs 2006;29:484-6. [Crossref] [PubMed]
109. Matusek JA, Wright MO. Ethical dilemmas in treating clients with eating disorders: A review and application of an integrative ethical decision-making model. Eur Eat Disord Rev 2010;18:434-52. [Crossref] [PubMed]
110. Dresser R. Feeding the hunger artists: legal issues in treating anorexia nervosa. Wis L Rev 1984;1984:297-374. [PubMed]
111. Radden JH. Food Refusal, Anorexia and Soft Paternalism: What's at Stake? Philos Psychiatr Psychol 2021;28:141-50. [Crossref]
112. Draper H. Anorexia nervosa and respecting a refusal of life-prolonging therapy: a limited justification. Bioethics 2000;14:120-33. [Crossref] [PubMed]
113. Kendall S. Anorexia nervosa: the diagnosis. A postmodern ethics contribution to the bioethics debate on involuntary treatment for anorexia nervosa. J Bioeth Inq 2014;11:31-40. [Crossref] [PubMed]
114. Mitrany E, Melamed Y. Compulsory treatment of anorexia nervosa. Isr J Psychiatry Relat Sci 2005;42:185-90. [PubMed]
115. Tan JOA, Stewart A, Fitzpatrick R, et al. Attitudes of patients with anorexia nervosa to compulsory treatment and coercion. Int J Law Psychiatry 2010;33:13-9. [Crossref] [PubMed]
116. Boyle S. How should the law determine capacity to refuse treatment for anorexia? Int J Law Psychiatry 2019;64:250-9. [Crossref] [PubMed]
117. Draper H. Anorexia nervosa and refusal of naso-gastric treatment: a reply to Simona Giordano. Bioethics 2003;17:279-89. [Crossref] [PubMed]
118. Tomasini F. A Broader Notion of Competent Decision Making in Respect to What Is in the Best Interests of Patients Affected by Anorexia. Philos Psychiatr Psychol 2010;17:155-7. [Crossref]
119. Wojtkowiak J, Geusendam E, van Dijk R, et al. Perspectives on dying in severe and enduring eating disorders (SEEDs): A qualitative study among Dutch mental healthcare providers. Death Stud 2024;48:43-53. [Crossref] [PubMed]
120. Miller Tate AJ. Presuming incapacity in anorexia nervosa is indefensible: A reply to Ip. Bioethics 2021;35:596-601. [Crossref] [PubMed]
121. Giordano S. Treating Eating Disorders: Some Legal and Ethical Issues. In: Fox J, Goss K, editors. Eating and its disorders. Wiley Blackwell; 2012:102-16.
122. Bevens CL, Smith TS, Dunn PL. Lesson Eight: Does coercive treatment in moribund anorexia nervosa patients represent a violation of clinician obligation to patient autonomy? Ethical, legal, and practical considerations. In: Smith TS, Dunn PL, editors. Beyond Spinoza and Nietzsche: Applied Ethics for Mental Health Professionals. Elliott & Fitzpatrick; 2016.
123. Giordano S. The Fisherman and the Assassin: Reflections on Anorexia Nervosa. Philos Psychiatr Psychol 2010;17:163-7. [Crossref]
124. Trachsel M, Krones T, Wild V. Zwangsernährung oder Palliative Care bei chronischer Anorexia nervosa? Behandlungsstrategien aus medizinethischer Sicht. In: Moos T, Rehmann-Sutter C, Schües C, editors. Randzonen des Willens. Peter Lang; 2016:171-86.
125. Kluge EH. The ethics of forced feeding in anorexia nervosa: a response to Hébert and Weingarten. CMAJ 1991;144:1121-4. [PubMed]
126. Huxtable R. Autonomy, best interests and the public interest: treatment, non-treatment and the values of medical law. Med Law Rev 2014;22:459-93. [Crossref] [PubMed]
127. Muckle TJ. The ethics of forced feeding in anorexia nervosa. CMAJ 1991;144:1206.
128. Bratton M. Anorexia, Welfare, and the Varieties of Autonomy: Judicial Rhetoric and the Law in Practice. Philos Psychiatr Psychol 2010;17:159-62. [Crossref]
129. Clough B. Anorexia, Capacity, and Best Interests: Developments in the Court of Protection Since the Mental Capacity Act 2005. Med Law Rev 2016;24:434-45. [Crossref] [PubMed]
130. Fassino S, Daga AG, Leombruni P, et al. Problemi etici nella terapia dell'anoressia nervosa: una revisione della letteratura internazionale. Minerva Psichiatr 2008;49:157-73.
131. Tiller J, Schmidt U, Treasure J. Compulsory treatment for anorexia nervosa: compassion or coercion? Br J Psychiatry 1993;162:679-80. [Crossref] [PubMed]
132. Groopman LC. Commentary: Where ignorant armies clash by night. Camb Q Healthc Ethics 2012;21:400-4. [Crossref] [PubMed]
133. Tan JO, Hope T, Stewart A, et al. Control and compulsory treatment in anorexia nervosa: the views of patients and parents. Int J Law Psychiatry 2003;26:627-45. [Crossref] [PubMed]
134. Dworkin G. Paternalism. In: Zalta EN, editor. The Stanford Encyclopedia of Philosophy; 2020. Available online: https://plato.stanford.edu/archives/fall2020/entries/paternalism
135. Ryan CJ, Callaghan S. Treatment refusal in anorexia nervosa: the hardest of cases. Commentary on "Anorexia nervosa: the diagnosis: a postmodern ethics contribution to the bioethics debate on involuntary treatment for anorexia nervosa" by Sacha Kendall. J Bioeth Inq 2014;11:43-5. [Crossref] [PubMed]
136. Carney T, Yager J, Maguire S, et al. Involuntary Treatment and Quality of Life. Psychiatr Clin North Am 2019;42:299-307. [Crossref] [PubMed]
137. Wild V, Krones T. Kommentar I zum Fall: “Behandlungsabbruch bei Anorexie?” Ethik Med 2010;22:133-4. [Crossref]
138. Keywood K. My Body and Other Stories: Anorexia Nervosa and the Legal Politics of Embodiment. Soc Leg Stud 2000;9:495-513. [Crossref]
139. Woods A, Willison K, Kington C, et al. Palliative care for people with severe persistent mental illness: a review of the literature. Can J Psychiatry 2008;53:725-36. [Crossref] [PubMed]
140. Honig P, Bentovim M. Treating Children with Eating Disorders Ethical and Legal Issues. Clin Child Psychol Psychiatry 1996;1:287-94. [Crossref]
141. Downs J, Ayton A, Collins L, et al. Untreatable or unable to treat? Creating more effective and accessible treatment for long-standing and severe eating disorders. Lancet Psychiatry 2023;10:146-54. [Crossref] [PubMed]
142. Russell J. Treating anorexia nervosa. BMJ 1995;311:584. [Crossref] [PubMed]
143. Russell J, Mulvey B, Bennett H, et al. Harm minimization in severe and enduring anorexia nervosa. Int Rev Psychiatry 2019;31:391-402. [Crossref] [PubMed]
144. Starzomska M, Rosińska P, Bielecki J. Chronic anorexia nervosa: Patient characteristics and treatment approaches. Psychiatr Pol 2020;54:821-33. [Crossref] [PubMed]
145. Yager J, Carney T, Touyz SW. Is involuntary (compulsory) treatment ever justified in patients with severe and enduring anorexia nervosa? An international perspective. In: Touyz SW, Le Grange D, Lacey JH, et al editors. Managing severe and enduring anorexia nervosa: A clinician's guide. New York, NY: Routledge/Taylor & Francis Group; 2016:205-21.
146. Stoll J, Hodel MA, Riese F, et al. Compulsory Interventions in Severe and Persistent Mental Illness: A Survey on Attitudes Among Psychiatrists in Switzerland. Front Psychiatry 2021;12:537379. [Crossref] [PubMed]
147. Fost N. Food for thought: Dresser on anorexia. Wis L Rev 1984;1984:375-84. [PubMed]
148. Massie J. Letter to the editor. J Paediatr Child Health 2020;56:661. [Crossref] [PubMed]
149. Scolan V, Praline O, Carlin N, et al. Ethical Dilemnia of the Therapeutic Decisions in the Care of the Severe Chronic Anorexia Nervosa: About a Case. Linacre Q 2013;80:388-92. [Crossref] [PubMed]
150. Leichner P. The ethics of forced feeding in anorexia nervosa. CMAJ 1991;144:1206.
151. The Lancet Psychiatry. The (il)legitimacy of death as an option. Lancet Psychiatry 2023;10:71. [Crossref]
152. Russell JD. Update in eating disorders. Aust N Z J Med 1996;26:819-23. [Crossref] [PubMed]
153. Kaye WH, Bulik CM. Treatment of Patients With Anorexia Nervosa in the US-A Crisis in Care. JAMA Psychiatry 2021;78:591-2. [Crossref] [PubMed]
154. Russon L, Alison D. Does palliative care have a role in treatment of anorexia nervosa? Palliative care does not mean giving up. BMJ 1998;317:196-7. [PubMed]
155. Sato Y. Autonomy and anorexia nervosa. Lancet 2003;362:1937. [Crossref] [PubMed]
156. Gloeckler S, Trachsel M. Nurses' views on palliative care for those diagnosed with severe persistent mental illness: A Pilot Survey Study in Switzerland. J Psychiatr Ment Health Nurs 2022;29:67-74. [Crossref] [PubMed]
157. Trachsel M, Hodel MA, Irwin SA, et al. Acceptability of palliative care approaches for patients with severe and persistent mental illness: a survey of psychiatrists in Switzerland. BMC Psychiatry 2019;19:111. [Crossref] [PubMed]
158. Hébert PC, Weingarten MA. Drs. Hébert and Weingarten respond. CMAJ 1991;144:1206.
159. Goode ET. Commentary: Staying the swinging pendulum. Camb Q Healthc Ethics 2012;21:397-400. [Crossref] [PubMed]
160. Kaplan AS, Strober M. Severe and enduring anorexia nervosa: Can risk of persisting illness be identified, and prevented, in young patients? Int J Eat Disord 2019;52:478-80. [Crossref] [PubMed]
161. Ramsay R, Ward A, Treasure J, et al. Compulsory treatment in anorexia nervosa. Short-term benefits and long-term mortality. Br J Psychiatry 1999;175:147-53. [Crossref] [PubMed]