Legal and Ethical Issues in the Treatment of Really Sick Patients with Anorexia Nervosa

Abstract

Eating disorders present many moral and ethical dilemmas. Family-based therapy makes parents into both patients (in therapy) and therapists (insisting on the young person eating) and can distort the whole family. Imposed treatment under mental health or children’s legislation is viewed by some as a denial of human rights and by others as a right in itself, to effective treatment, even if it is against the patient’s will. Is the patient free to decide? Does he or she have capacity? What about the status of advance directive to “let me die if I become ill again”? Is it valid? And the converse, Ulysses agreement, “Treat me if I become ill, even if I refuse”. Is there ever a role for palliative care in anorexia nervosa? We will consider these and other moral and ethical issues that arise in the treatment of anorexia nervosa, and whilst we will usually not provide “the answers”, we hope that readers will be stimulated to ponder and discuss the issues themselves.

There is no escape. Moral risk cannot, at times, be avoided. All that we can ask for is that none of the relevant factors be ignored.

Isaiah Berlin

Appendices

Appendix

6.1.1 Summary Sheet 1: Assessing Capacity (Adapted from Tan 2012)

There are (at least) three scenarios where assessing capacity might be useful:

• 1. Where the disorder is considered by clinicians to be untreatable and they need to decide whether to accept patient refusal of treatment, nutrition or life-sustaining measures

• 2. Where the disorder may be treatable but there is doubt in the clinical team about whether formal compulsory treatment is appropriate, so knowing capacity status can guide the team as to how much weight they should give to patient decisions which may not be in their own best interests

• 3. Contentious cases, for instance, prolonged use of mental health legislation, where the assessment of capacity may help inform clinical and tribunal decisions

• 4. Where major decisions are being made by the patient which may be challenged (legally or otherwise) in the future, for example, advance directives or Ulysses agreements

A suggested format for assessment which should help clinicians to perform a full assessment of factors which may affect capacity is given below.

6.1.2 Format for the Assessment of Capacity in Eating Disorders

Using clinical interview, explore the following domains:

• 1. Assess ability to understand and retain information.

Checking understanding and retention is fairly straightforward—disclosure can be followed by a request for the patient to repeat the information back in his or her own words. The MacCAT-T (Grisso and Appelbaum 1998) competence instrument provides a validated structured and systematic framework for doing this.

• 2. Assess ability to use information.

This can be assessed in the course of the discussion and by asking the patient for his/her reasons for the decision—it should become evident whether the patient is able to use the information provided.

• 3. Assess appreciation of information and facts of the decision.

Appreciation, not seen in UK legislation but found in Grisso and Appelbaum’s definition of competence, is the ability to apply the information to oneself. This can be a problem in eating disorders, for example, a patient may say, “I understand that’s the definition of an eating disorder, I understand I have those features and I understand eating disorders need treatment; but I do NOT have an eating disorder and therefore I do not need treatment”.

• 4. Assess presence of compulsion.

Look for compulsions (or obsessions) that may prevent the patient from acting on the basis of his/her understanding or even desires. The Code of Practice of the Mental Capacity Act for England and Wales gives an example that patients with anorexia nervosa may be unable to “use and weigh” treatment information as part of the decision-making process: “For example, a person with the eating disorder anorexia nervosa may understand information about the consequences of not eating. But their compulsion not to eat might be too strong for them to ignore.”

• 5. Assess for changes in values due to the eating disorder.

It is part of the core criteria of anorexia nervosa that a person should either have a fear of fatness or an overvaluing or pursuit of thinness. This dread of fatness and overvaluing of thinness, found in many eating disorders, means that being thin or losing weight becomes disproportionately highly valued by sufferers; in some cases, this is even valued above life itself. This disproportionate value can drive some patients to decide, even after they have weighed up the options, not to have treatment because they would rather die than gain weight.

• 6. Assess for changes in identity due to the disorder.

One of the characteristics of eating disorders is that they can be egosyntonic disorders, that is, experienced as part of the self and also consistent with one’s own values. Further, many people with eating disorders become ill as adolescents and may as adults have little or no sense of who they would be without the disorder. This intertwining of the disorder with the sense of self can make it difficult to decide to have treatment in order to recover from it; for example, patients may be either unable to envisage a self without eating disorders.

• 7. Assess for depressive features, loss of hope and affective elements.

Eating disorders have clear effects on emotion and mood; there is a high rate of comorbidity of depression. It is important to assess for depressive features and particularly for suicidality, more covert wishes for death (e.g. wanting to die thin) and inability to envisage or hope for recovery, all of which would affect how options are weighed. Charland and colleagues further argue that beyond comorbid depressive disorder, anorexia nervosa itself may have clear affective components, fitting Ribot’s conception of a “passion” in its very nature. These components include having a fixed focus and motivational force and attachment; these may have an impact on decision-making.

6.1.3 Final Decisions Regarding Capacity

The final decision regarding capacity status is necessarily a clinical judgement by the assessor, informed by the findings from each domain (as in the MacCAT-T). This judgement should be only for the decision at hand in its context. It may be more useful to do a capacity assessment as listed above in order to guide clinical decision-making and discussions with patients and professionals, WITHOUT attempting to make a final dichotomous judgement about whether the patient has capacity.

Summary Sheet 2: Key Considerations for Professionals Treating Seriously Ill Patients with AN

6.2.1 Illness Factors

• ED thoughts and behaviours are often un-understandable to others.

• People with EDs often resist/refuse treatment.

• AN can affect cognitive ability and decision-making.

• People with EDs usually feel guilt, fear, isolation and misunderstood. These feelings are often expressed as resistant and challenging behaviours.

6.2.2 Professional Factors

• May have limited experience and common misunderstandings/misperceptions.

• Differing opinions and values held by professionals.

• Powerful countertransference is generated by people with EDs (emotional response of the clinician).

6.2.3 Treatment Factors

• Conflict is at the heart of treatment for AN—duty to treat patient versus duty to respect autonomy.

• Often shared responsibility between professionals and teams with transitions.

6.2.4 Tips for Optimising Care

• Multidisciplinary approach.

• Develop a shared formulation—integrated approach > enhance empathy.

• Involve specialist ED service as early as possible.

• Involve patient’s support network—other professionals, family, carers and voluntary sector.

• Adopt an open, honest respectful approach, involving patient in decisions.

• Supervision.

• Early discussion about sharing of information/confidentiality.

• Shared protocols/guidelines, e.g. MARSIPAN.

• Seek advice from ethicist, lawyer and courts if necessary.