The courts can face a real dilemma, legally and ethically, when it comes to patients with a life-threatening eating disorder. By Scott Trueman.
A highly cherished ethical principle that courts jealously guard is that of autonomy; the patient's right to exercise self-determining choice.
Accordingly, it is for the patient to decide what treatment or procedure they consent to. The principle does come under challenge in circumstances where a patient is not competent (lacks capacity) to make such decisions.
The difficulty is that a person's level of "competency" is not always easy to determine. Perceived unreasonableness of a patient's decision is not enough, it must be that the patient lacks the ability to undertake rational decision making.
The eating disorder anorexia nervosa can pose many dilemmas in this area; at what stage is it an illness which triggers provisions under a Mental Health Act (thereby overriding issues of consent on the basis of treatment being in the patient's "best interests").
At what stage of malnutrition does the patient physically become cognitively incompetent, if the patient gives an Advanced Directive when competent can this be overridden or should a patient be allowed to die by not eating if that is their choice?
A 2012 case is enlightening in response to these questions. It related to a UK woman, referred to as patient E, who as a former medical student was suffering from several chronic health conditions, including alcoholism, anorexia nervosa and unstable personality disorder.
Her anorexia was thought to stem from sexual abuse she suffered, unbeknownst to her family, earlier in her life. She had a long history of admissions to hospitals for physical and mental conditions.
In mid-2012, she signed advance consent forms stipulating that she did not want any medical intervention to prolong her life. At the time of the court hearing later in 2012 patient E had not eaten solid foods for more than a year, had a BMI of 11 to 12 and she was in poor physical condition. Patient E described her life as "pure torment". According to a psychiatrist and eating disorder specialist her chances of recovery in any event was between 10 and 20 per cent.
There existed a number of unique circumstances that made decisions very challenging for the court. Patient E appeared to be fully aware of her circumstances in that, whilst she did not desire to die (i.e. no suicide ideation) she did not desire to eat, she was aware of the certainty of death from such a decision and the actions of being "force fed" would deprive her of a relatively peaceful death.
Further complicating the matter was the existence of two previously drawn up Advance Directives, written whilst not subject to any Mental Health legislation, making her intentions and wishes abundantly clear.
A question which the court (retrospectively) had to determine was whether patient E had capacity at the time of making the Advanced Directives; could she understand all relevant information, retain it, use or weigh it to make a rational decision.
Such an assessment necessarily employs inexact science and a degree of subjectivity. Patient E was found to lack capacity to make a rational judgment at the time of the Advanced Directives and hence, her wishes (and autonomy) would be overridden. On the balance of probabilities, the court thought that force feeding would do more good than harm, whilst acknowledging it would deprive her of a relatively peaceful death.
The other concept is that of "best interests" often at the heart of thorny decisions involving medical ethics. Would patient E's best interests be served by letting her die or by forcing her to live? How does a court define what are those best interests in the face of someone wishing to die?
The court believed that, although force feeding patient E would be intrusive and difficult, this course of action had a chance of saving her life. The court stated it would not have ordered so if it felt that force feeding would be futile.
The judgment makes it clear that preservation of life must be accorded a very high value and in this case justified intervention. Yet in the balancing act of respecting the right to autonomy, against overriding the same the court acknowledged there were no prescriptive set of guidelines or rules which it could follow. In the final analysis the court stated it had to rely on "intuition" that it was making the right decision.
It may be that a civil libertarian does not believe in patient E's wishes being overridden due to the violence, duration, and trauma of forced feeding (with evidence equating this to being re-traumatisation of the child sexual abuse experiences) in circumstances of a grim prognosis, and that patient E's clearly articulated wishes (even without legal capacity) outweigh the preservation of life. In such a weighing process there is no easy and certainly no definitive "right" answer provided by either law or ethics.
As a footnote, contrast patient E's case with that of patient L who was 29 and during her last 15 years of life spent 90 per cent as an in-patient. At the time of the court hearing she weighed just 20kg and her BMI was 7.7. Like E, patient L did not express a desire to die, but stated that her severe anorexia "did not allow her to eat" - a "morbid fear" of ingesting any calories might lead to an increase in weight. In patient L 's case the court concluded that although nutrition and hydration should be offered, staff were not permitted to use force to administer food, water or medicine. Her autonomy was preserved; she died just as she wished.
Scott Trueman is a lecturer in the school of nursing, midwifery and nutrition at James Cook University.Do you have an idea for a story?
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