Futility in adolescent anorexia nervosa and the question of withdrawal of care
Conflict of interest: None declared.
Abstract
Anorexia nervosa is a chronic disorder of children, adolescents and young people typically characterised by self‐starvation and resistance to interventions. Staff dealing with these young people frequently question patient motivations and the ethics of interventions that may be applied against the wishes of patients. The question of withdrawal of care in a subgroup of these patients has been raised. Futility is not an appropriate response to adolescent anorexia nervosa, and treatment withdrawal is not appropriate for a disorder in which most patients can be expected to recover, in which opposition to treatment is a characteristic of the disorder and in which brain dysfunction is precipitated by severe malnutrition.
Anorexia nervosa is now a relatively common diagnosis in children's hospitals. Young people with eating disorders consume extensive health service resources while frequently rejecting our best intentions and make us question what we do and how we do it. Treating severe adolescent anorexia nervosa, which is characterised by extreme malnutrition, marked rigidity of thought, opposition to well‐intentioned therapeutic interventions, skilful psychological manipulation and team splitting, is challenging and can undermine and divide teams. It is no wonder that some staff unfamiliar with the disorder and its natural history may question our therapeutic endeavours and consider withdrawal of treatment in individual teenagers with treatment‐resistant anorexia nervosa and expressed hopelessness. In the Netherlands and Belgium, anorexia nervosa has been acknowledged as a cause of unbearable suffering, justifying euthanasia among adults with anorexia nervosa, and in addition, patients have been deemed competent to make the request for assisted dying.1, 2 Recently, euthanasia of teenagers with anorexia nervosa has received media attention.3 Assisted dying is now legal in one Australian jurisdiction and is under consideration in another. In the face of persistent and forceful treatment refusal and expression of a wish to die, some staff in my own institution questioned whether withdrawal of treatment in teenagers with severe, treatment‐resistant anorexia nervosa should be considered. These experiences and the current Australian legislative considerations have prompted consideration of the concept of futility in adolescent anorexia nervosa and consideration of the question of whether treatment withdrawal may ever be an acceptable ‘therapeutic’ option for teenagers.
Groopman, in his commentary on the frustration and sense of futility in dealing with chronic anorexia nervosa, sums up the conflicts clinicians must confront. ‘When I think about and imagine treating Angela – smart, skeletal, manipulative Angela – I am at my medical and moral wit's end. After a while I have a hard time telling the difference between treatment and torture, between therapy and punishment. I don't know what palliation can mean in the face of Angela's will to mortify her flesh. What is palliation, other than a word we use to soothe ourselves, when Angela's very purpose seems to be to suffer? I feel torn between violating her will by forcing her to eat (in the name of beneficence) and getting rid of her by discharging her (in the name of respecting her autonomy)’.4
There is limited literature to guide thinking about potential withdrawal of care in adolescents with anorexia nervosa and nothing that specifically addresses this issue. The Royal Australasian College of Physicians document decision making at the end of life in children and adolescents notes that a key consideration around making a decision to withhold or withdraw treatment is a decision not to provide a treatment that no longer confers benefit to the patient.5 The Royal College of Paediatrics and Child Health goes further and outlines three sets of circumstances in which it considers limiting treatment to be appropriate, despite knowing that the decision will shorten life, because a view has been formed that treatments cannot provide overall benefit, and it is no longer in the child's best interests to continue with the treatment.6 The first two conditions emphasise the sense of futility of the physician and the third that of the patient. These are as follows: first, when life is limited in quantity; second, when life is limited in quality and treatment, although prolonging life will not alleviate the burdens associated with illness or the treatment; and finally, when there is informed, competent refusal of treatment.
How should adolescent anorexia nervosa be considered in relation to these guidelines?
The first criterion argues that treatment is futile because the natural history of the disease is so poor that recovery cannot be expected and that only a limited quantity of life can be anticipated. Anorexia nervosa, in general, has a relatively poor prognosis with a significantly increased mortality across the life‐span,7 and of those surviving, less than 50% fully recover, one third are significantly improved, and 20% are chronically ill.8 This poor prognosis is, however, not the experience of those with adolescent‐onset anorexia nervosa, of whom approximately 80% can be expected to fully recover, although their course is typically protracted.8, 9 In Strober's well‐documented Californian series, the mean time to partial recovery (loss of three of four diagnostic criteria) was 57 months and mean time to complete recovery was 79 months, with some patients still recovering 12 years after onset.9 We can expect most adolescents with anorexia nervosa to fully recover and would not expect adolescents with anorexia nervosa to meet the Royal College of Paediatrics and Child Health criteria for life limited in quantity.
The second criterion addresses the issue that the quality of life is so poor that the physician can see that treatment is futile. The label severe and enduring anorexia nervosa is applied to individuals with an illness duration of greater than 7 years, so this cannot usually be applied to adolescents. Severe and enduring anorexia nervosa has a poor prognosis and an associated poor quality of life.8, 10, 11
There are a few reports of individual adults with long‐standing anorexia nervosa where clinicians have agreed that treatment is futile and that the quality of life is extremely poor and have accepted that withdrawal of treatment is an appropriate step.12-15 I argue that this should never be the case for adolescents with chronic anorexia nervosa?
First, it is difficult to define end‐stage disease and to identify a point where there is no hope of recovery. Eckert noted that, while 6 % of adult patients in a chronic anorexia nervosa cohort died, a quarter eventually recovered and that almost two thirds of the remaining survivors experienced disease evolution so that they were able to live with their disease.16 Even when a decision to undertake palliative care has been undertaken, the individual may change their mind and decide to receive treatment and attempt some recovery.13, 17
One of the issues that physicians need to confront is understanding what they are dealing with. Geppert argues against seeing treatment refusal as treatment refractoriness.18 Reluctance to accept treatment is typically part of the disease process, driven by fear and guilt, and is not necessarily an indication of treatment unresponsiveness.18-20
It is possible to argue that the quality of life is so limited; in particular, ‘the severity and impact of the child's underlying condition is in itself sufficient to produce such pain and distress as to overcome any potential or actual benefits in sustaining life6’ that withdrawal of treatment is justified. However, most adolescents with severe anorexia nervosa do not consistently want to die, and some are ambivalent about recovery typically because the cost of change is too great to undertake this process at the time. We also know, as pointed out above, that reluctance to accept treatment is a manifestation of the disease. Thus, it is not acceptable to posit limited quality of life as a justification for palliative care in anorexia nervosa.
The third criterion for considering treatment withdrawal in the paediatric age group is informed, competent refusal of treatment. As noted above, treatment refusal is often a part of the disease and has been described as ‘pathological’.18 In fact, it is rare for adolescents to actively seek treatment or to accept it willingly. Almost all refuse elements of treatment, and acceptance of treatment often generates guilt and depression. Patients who are actively refusing treatment can rarely be said to be providing informed competent refusal of treatment. Holm cautions that willingness to accept the patient's view of their illness can actually contribute to mortality.21 In practice, it is common to have individuals with apparent intractable anorexia nervosa subsequently thank clinicians for saving their lives and apologise for the resistance they demonstrated and the abusive manner in which this was communicated. The third reason Geppert argues against accepting that treatment in anorexia nervosa is futile is because many individuals with long‐standing anorexia nervosa are, at different stages, not competent to make a judgement about their potential for recovery.18 Impairment of the capacity to make informed decisions in adolescents with anorexia nervosa has been noted by Tan,19, 22 and several groups have documented impaired capacity for judgement in association with structural and functional brain changes.23-25 Recovery of capacity with nutritional repletion and therapy has been confirmed.26 In adolescent anorexia nervosa, the situation is more complex than in adult patients given that there is often a gap between intellectual development and social, emotional and psychological functioning required to make complicated decisions. Tan emphasises that there may also be a difference between the declared wish of the patient (to not improve or to die) and the underlying or covert ambition to be kept safe and within boundaries.27
Clinicians may be placed in situations where they feel that all treatment options are exhausted and are tempted to consider palliative care. It is important to note that there have always been patients who have challenged our systems and required us to modify the ways in which we do things. The modern history of treatment of eating disorders indicates that treatment options have evolved dramatically over the last 20 years, so now, there are a range of treatment models and options that can be tailored to meet the needs of patients and available community resources. Treatment models in use today were not envisioned 20 years ago. Creativity and scientific inquiry have led to these changes and will continue to do so, as the outpatient and day patient options expand, and the inpatient population with eating disorders becomes more challenging. Any sense of futility regarding a patient's potential for recovery is typically a reflection of the treating team's inability to see treatment options. The modern history of involuntary treatment of anorexia nervosa reflects this view, but the situation is often not as bleak as it appears. Westmoreland, commenting on experience in a quaternary treatment setting that provided medical care to patients deemed untreatable elsewhere, noted that 85% of adults who initially resisted the idea of involuntary treatment withdrew their right to formal hearings and acquiesced to treatment. That is, even in the worst possible situations, treatment, and recovery, is achievable.20
It is extremely unlikely in paediatric practice that we would ever be in a situation in treating anorexia nervosa where we reach a point at which treatment is futile or where all options had been exhausted, and therefore, we should enter a stage of treatment withdrawal and palliative care. Furthermore, it is important that team leaders, those who have the most experience in dealing with this complex and devastating illness, should continue to be positive and express optimism for the young people we deal with, both to their team members and to the family of patients. Many staff will not be used to dealing with patients who repeatedly reject attempts at treatment and will need education and encouragement to remain positive as they attempt to deliver care. It is important that the whole hospital system accepts responsibility for the approach to these challenging patients. Health services have an ethical obligation to the staff and to the patients and their families. It is important that the burden of caring for these patients by the staff involved is appropriately recognised and that the staff are well supported.
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