The ethical dilemma Consent is the bedrock of medical treatment. Patients with anorexia nervosa (AN) don’t believe that they have a problem and therefore refuse treatment. Should physicians a) treat patients who do not consent; or b) not treat, possibly leading to morbidity and death.
What is anorexia nervosa? Anorexia nervosa is defined as: Intense fear of weight gain Weight consistently <85 th% for age and height (In women) three consecutive missed periods Together with one of following: –refusal to admit seriousness of weight loss –undue influence of shape or weight on one’s self-image –disturbed experience in one’s shape or weight DSM-IV-TR
Incidence Overall U.S. -.3 to 1% Women - 4% Men -.1% Harvard Mental Health Letter. Oct/Nov 1997.
Fatality rate Estimates of fatality rate: 4% to 18%. (Rate tends to increase given longer duration of illness.) Crow SJ. Am J of Psychiatry. 2009. Sullivan PF. Am J of Psychiatry. 1995. Harvard Mental Health Letter. Oct./Nov 1997.
50 years of treatment outcomes Comparison of outcomes 1950-1999 to gauge whether any improvement over time. 119 studies conducted 1950-1999 5,590 patients, adolescents and adults Follow-ups clustered into three time frames: - < 4 years after hospitalization; - 4-10 years; - >10 years after Steinhausen HC. Am J Psychiatry. 2002.
50 years of treatment outcomes 577 patients had <4 years of follow-up 2,132 had 4–10 years of follow-up 438 had >10 years of follow-up Steinhausen HC. Am J Psychiatry. 2002.
“The mortality rate was much lower in the group of younger patients than that in the group with a much wider age at onset of illness. The rates of recovery, improvement, and chronicity were more favorable in the group with the younger patients.” Steinhausen HC. Am J Psychiatry. 2002
“Anorexia nervosa did not lose its relatively poor prognosis in the 20th century.” Steinhausen HC. Am J Psychiatry. 2002.
How many patients are treated against their will? Three studies done in the U.S. and Great Britain estimate that the proportion of anorexia patients in treatment who have not consented is between 9% and 16.6%. Ramsey R et al. Br J Psychiatry. 1999. Crow SJ. Am J of Psychiatry. 2009. Royal College of Psychiatrists. Report from the Eating Disorders Special Interest Group of the Royal College of Psychiatrists. 2001.
The central debate Can we force treatment on patients with anorexia when the patients appear to be competent and are refusing treatment?
Elements of involuntary treatment Detention Forced self-feeding by mouth Feeding via nasogastric or intravenous tube Exercise restrictions Seclusion Withdrawal of other privileges Thiels C. Curr Opin Psychiatry. 2008.
The “when” of involuntary treatment Treatment generally is imposed when “without further nutrition the anorexic will begin an irreversible decline to death.” Draper H. Bioethics. 2000.
Time Course and Phenomenology of Anorexia Nervosa and Bulimia Nervosa Kaye W. Am J Psychiatry. 2009.
Proponents on both sides Heather Draper and Gunther Ratner argue that, with rare exceptions, we should not force treatment on patients with AN Jacinta Tan argues that there are many circumstances in which we should force such treatment on these patients.
Control and self-esteem “Control is the essence of the struggle in anorexia nervosa. Compulsory treatment may cause substantial injury to the already fragile self-esteem of anorexia nervosa patients. Autonomy should be maximized to avoid a situation in which the patient feels the only way to maintain some control over her life is by refusal of treatment.” Rathner G et al. Athlone Press. 1998.
Respecting autonomy “Respecting autonomy means that we are bound to (make) our own moral decisions and others are bound not to interfere; but it also means that we are responsible for the decisions which we make.” Draper H. Bioethics. 2000.
Two kinds of treatment refusal “…Two different kinds of refusal…may be confused in the assessment of a small minority of anorexics. The first is the refusal to eat, which may be regarded as involuntary and irrational. The second is the decision to refuse all therapy (including food) because the quality of life with anorexia is not good enough to outweigh the burdens of the therapy.” Draper H. Bioethics. 2000.
Draper (cont’d) “…offering palliative care in such cases should not be dismissed as collusion with a mental illness. Rather, it should be seen as offering the same services to incurable anorexics as are available to others who cannot be cured.” Draper H. Bioethics. 2000.
“We should be open to the possibility that sufferers are actually as competent as anyone else to make decisions about the quality of their lives, and to assess the relative value of their lives in the light of its quality. “For this reason, it is proposed that it may be wrong, as well as unlawful, to force patients to comply with therapy simply because they are anorexic.” Draper H. Bioethics. 2000.
Some people disagree Jacinta Tan studied patients with AN. Many reported impaired thinking skills and concentration. Some patients, themselves, suggested that forced treatment may be appropriate under some circumstances.
Study questions Is it ever acceptable to force treatment on a sick person? On a person with a mental illness? On a person with anorexia? If so, when is it justified? When is such treatment effective?
Values expressed by her subjects What does your anorexia nervosa mean to you? “It feels like my identity now…” “I remember getting some tests back saying how my liver was really damaged and all this, and I thought it was really rather good!... It’s sick, isn’t it? It was like somehow I’d achieved!” “I wasn’t really bothered about dying, as long as I died thin.” Tan J. Philos Psychiatr Psychol. 2006.
“When I haven’t got anyone forcing me to do anything, then I fight against my own thoughts, what my mind is telling me. Whereas when someone is forcing me to do something, then it makes it a hell of a lot easier to fight against them, and then in the end you’re fighting the wrong enemy.” - a patient Tan J. Philos Psychiatr Psychol. 2006.
Control is complicated “Some participants found that being given freedom of choice was essential to allow them to disengage from fighting the professionals and reason out their treatment choices; others found that being faced with stark facts about the severity of the illness, or being confronted with the need for compulsory treatment, helped them to be able to decide to get better.” Tan J. Philos Psychiatr Psychol. 2006.
PATIENT STATEMENTS “I think you're just so confused in your head that you need people to make the right decisions for you.” “I don’t know, but – once you’re up to healthy weight again, or, you can actually think better and concentrate longer, so you can see the sense of what’s being done to you.” Tan J. Philos Psychiatr Psychol. 2006.
“I think if somebody’s life is in danger and is threatened and they have to go into hospital then yes it’s very important to obviously re- feed them and to get them to a stage where they’re not, where they’re medically stable, but you can’t enter anybody into treatment if they’re not willing to.” - a patient Tan J. Int J Law Psychiatry. 2010. PATIENT STATEMENTS
“Although when I was back there [i.e., very ill] I’d say “No, that’s a stupid idea,” now being here I look back on it, I think “Hell yeah, you can’t not treat someone who’s going to die because they’re starving themselves.” - a former patient Tan J. Int J Law Psychiatry. 2010. PATIENT STATEMENTS
“Whatever their views about the use of compulsion in anorexia nervosa in general, or on issues of competence and capacity, all participants thought that it is right to impose treatment in order to save life.” Tan J. Int J Law Psychiatry. 2010.
Tan (cont’d) What mattered most to participants was not whether they were compelled to have treatment, but the nature of their relationships with parents and mental-health professionals. Indeed, within a trusting relationship compulsion may be experienced as care. Tan J. Int J Law Psychiatry. 2010.
Conclusions AN is a chronic illness with a high mortality rate. Treatment is more effective early in the course of illness than late. Coercive treatment early in the course of AN is justified because patients cannot assess the risks and benefits of their disease or treatment and because the prognosis for cure is good.
Conclusions When patients do not respond to initial treatment, their prognosis becomes much worse. At some point, refractory AN may be considered a terminal or incurable illnesses. In such cases, we should respect the patient’s refusal of treatment and initiate palliative care.
Resources Draper H. Treating anorexics without consent: some reservations. J Med Ethics. 1998;24:5-7.Treating anorexics without consent: some reservations Rathner G. A Plea Against Compulsory Treatment for Anorexia Nervosa Patients In Vandereycken W, Beumont PVJ (eds): Treating Eating Disorders: Ethical, Legal and Personal Issues. Athlone Press. 1998.A Plea Against Compulsory Treatment for Anorexia Nervosa Patients In Vandereycken W, Beumont PVJ (eds): Treating Eating Disorders: Ethical, Legal and Personal Issues Tan J, Stewart A, Fitzpatrick R, Hope T. Attitudes of patients with anorexia nervosa to compulsory treatment and coercion. Int J Law Psychiatry. 2010 Jan;33(1):13-19.Attitudes of patients with anorexia nervosa to compulsory treatment and coercion Tan J, Hope T, Stewart A, Fitzpatrick R. Competence to make treatment decisions in anorexia nervosa: thinking processes and values. Philos Psychiatr Psychol. 2006 Dec;13(4):267-282.Competence to make treatment decisions in anorexia nervosa: thinking processes and values Thiels C. Forced Treatment of Patients with Anorexia Nervosa. Curr Opin Psychiatry. 2008;21:495-498.Forced Treatment of Patients with Anorexia Nervosa Thiels C, Curtice M Jr. Forced Treatment in Patients with Anorexia Nervosa Pt 2. Curr Opin Psychiatry. 2009;22:497-500.Forced Treatment in Patients with Anorexia Nervosa Pt 2