The right to be treated against her willBMJ 1994; 308 doi: https://doi.org/10.1136/bmj.308.6924.347 (Published 29 January 1994) Cite this as: BMJ 1994;308:347
Most people can empathise with those who have a close relative with a progressive and life threatening illness. But when your relative refuses all treatment, despite the possibility of considerable relief of suffering and perhaps the restoration of a degree of independent and useful functioning, it is particularly hard to bear. My sister has suffered from a serious mental illness for many years and has been able to accept very little treatment. She has suffered from anorexia nervosa since the age of 11. In her early 20s she spent two years in a psychiatric hospital, mostly as an inpatient.
* “She has fought the label of mental illness with extraordinary determination.”
At this time she was given an additional diagnosis of psychotic depression, which has now been relabelled schizoaffective psychosis, an indication of the increasing severity and complexity of her symptoms.
When I visit my parents I often lie awake listening to her moving furtively around the house. At four o'clock in the morning she is in the kitchen eating tomorrow's lunch. After this she may go to the rubbish bin and eat the leftovers from last night's supper. When she has finished she will go to her room and force herself to stay awake by kneeling on the floor, trying unsuccessfully to atone for the sins she believes she has committed.
After her initial stay in hospital she made a slow and partial recovery hampered by her frequent refusal to comply with treatment. Nevertheless, she eventually returned to university and managed to get a degree and then a job as a trainee librarian. Living in rented accommodation she looked after herself and made friends within the community of her local church and among postgraduate students.
That was eight years ago. Since then her ability to work, make friends, and care for herself has further declined. She is troubled by strange persecutory ideas and delusions of evil and of perverse acts being perpetrated by herself and others. She is emaciated and exhausted, haunted by horrible thoughts and imaginings. Unable to live alone she moves between brief stays in hospital and with our parents, unable to settle in either, unable to agree to take medication or stick to a treatment plan. When at home the day is punctuated by screaming. It is as if her distress and rage breaks out and she shouts and hisses abuse at anyone in her way. She survived her one serious attempt at suicide, but this threat of death still hangs over her and over us.
She has fought the label of mental illness with extraordinary determination. She cannot accept her illness because to do so she says fills her with such despair that she cannot live. At times she is grandiose in her dismissal of psychiatrists and all the help that is offered to her. The team of mental health workers responsible for her care has been patient, offering advice, support, asylum, and medication but only if she wants it. She is unable to accept the mind numbing effects of neuroleptic medication and regularly defaults from treatment. As a result she has never had a full trial of pharmacological treatment and is not thought to be well enough to be offered a cognitive or behavioural approach to her eating problems.
By any standards she is ill now. Physically she is pale, exhausted, and underweight. Her skin is dry and cold, her hair coarse, and her complexion grey. She wears an expression of despair and confusion. People meeting her for the first time are struck by how ill she looks. She needs sleep, warmth, rest, food, and safety. She needs asylum.
The strain on the family is great. In addition to coming to terms with a daughter suffering from an incurable and apparently progressive illness my parents are also subject to frequent verbal attacks and threats to kill herself. It seems that no one is able to help. The psychiatrists have occasionally discussed using the Mental Health Act to give her the treatment she needs. On each occasion she agrees to be admitted voluntarily and leaves a few days later; on a recent occasion because she thought the doctors were conspiring to send her to prison.
There is an understandable concern among psychiatrists about the possible misuse of the Mental Health Act and a reluctance to deprive people of their liberty. But the act provides for people like my sister who as a consequence of their illness are unable to accept treatment. When my sister agrees to enter hospital there is no need to impose any legal sanction on her. But there is adequate provision under the act to detain a voluntary patient in hospital if it is in the interests of his or her health or safety or for the protection of others. In her case her right to treatment has been forgotten.
At present she is not well enough to live independently outside hospital. The hospital based team caring for my sister has little contact with or knowledge about her life outside hospital. Someone as ill as she is requires more than a short weekly visit from a community psychiatric nurse and an injection. It is difficult to see how the structure and support she needs could be provided outside some form of residential community setting and there does not seem to be any such facility in her area. For two or three years she attended outpatient appointments regularly but despite the deterioration in her level of social and occupational functioning there was no attempt to liaise with the family or to provide support for her at home until the deterioration became a crisis and I took her, against her will, to hospital on a Sunday afternoon. Every time she returns to hospital she has left within days or hours. Sometimes no one knows where she is and my parents wait anxiously for news of her.
We arranged a meeting with the consultant and his team to discuss her care. We were told not to try and look after her at home when she is ill but to take her or send her back to her lodgings or hospital. As her sister I find it difficult to withstand the force of her pleading and distress. I do not believe it is reasonable or practical to expect a parent to do so. The new community care policy seems to leave families with a stark choice: to care for their sick relatives themselves or to abandon them to a system unwilling or unable to take responsibility for their well-being.
*“There is no legal provision which can require her to continue treatment outside hospital.”
With treatment my sister might become able to live independently again. Ideally she might also gain sufficient insight to continue treatment voluntarily as an outpatient. If not there is no legal provision which can require her to continue treatment outside hospital. Recent debate about such provision in the form of a community treatment order concluded that it could not be enforced, particularly in the absence of an adequate and active community support team. It would certainly not have been a substitute for such a team.
The newly proposed supervised discharge order would ensure that the team reviewed my sister urgently when things went wrong, but that is all. Another solution might be for her consultant to recommend that a guardian be appointed to tell her where she must live and attend hospital for treatment and rehabilitation. Such a guardian would not have the power to make her accept treatment. But guardianship would miss the point, curtailing her freedom without giving her the treatment she needs.
My sister's inconsistent and intermittent treatment over the past eight years is largely a result of her own indecision and the inconsistencies of her abnormal mental state. The professionals who might have taken control of the situation as her health and functioning deteriorated have not done so and I must presume that they believe they cannot do so. I do not think her case is unique. There are many more people living in the community who are severely ill and are being deprived of treatment they need.