MENTAL HANDICAP VOL. 15 DECEMBER 1987

People with Challenging Behaviours. Paper presented at BIMH Conference, Llantrisant, Wales, 1987.

King‘s Fund. Facing rhe Challenge: an ordiapry life forpeople wirh chdenging behaviours. London: King’s Fund, 1987.

Lewis, J . , Goodship, J . , Holden, P. A Community Support Team for Young Persons with a Severe Mental Handicap who Exhibit Very Challenging Behaviour. Ipswich: Suffolk County Council Social Service Department and East Suffolk Health Authority, 1987.

Maher, J . Ensuring quality in services for people with challenging behaviour. In Ward, L. Getting Better All the Time? London: King’s Fund, 1986.

Mansell, J., Brown, H., McGill, P., Hoskin, S., Lindley, P., Emerson, E. Bringing People Back Home: a stafTUaining initiative in mental handicap. Bristol: NHSTA, 1987.

McBrien, J . The Haytor Unit: s p c u a k d day care for adults with severe mental handicaps and behaviour problems. Ment. Hand., 1987; IS, 77-80.

Pahl, J., Quine, L. Families with MentnUy HMdicapped Children: A Study of Stress and of Service Response. Canterbury: Univ. Kent Health Services Research Unit, 1984.

Rusch, R. G., Hall, J. C., Griffin, H. C. Abuse provoking characteristics of institutionalized mentally retarded individuals. Am. 1. M a t . Defic., 1986; 90:6, 618-624.

South East Thamcs RHA. Mental Haodicpp Spcual Services. Bexhill: South East Thama RHA, 1985.

Special Development Team. Annual Reporr 1986. Canterbury: Univ. Kent Inst. of Soc. & Appl. PSyChOl., 1987.

Legal CONSENT TO TREATMENT AND PEOPLE WITH MENTAL HANDICAPS

Mike Gunn

Recently there have been several interesting legal developments relating to treatment and people with mental handicaps.

The Jeanette case T h e b e s t k n o w n of t h e s e

developments is the “Jeanette case”, reported legally as Re B (a minor) (wardship: sterilisation) [1987] 2 ALL ER 206. This case considered the question of whether a 17-year-old girl with mental handicap could be sterilised when she was not capable of deciding for herself. The House of Lords, the senior English court of law, held that in the exercise of the court’s wardship jurisdiction it could, in the particular circumstances, authorise a sterilisation operation upon this girl. It must be understood, however, that this decision will not make it easy for girls with mental handicap to be sterilised and it does not mean that girls can be sterilised just because they are categorised as having a mental handicap.

The House of Lords only decided that the girl in question should be sterilised. That this is a decision simply on its own facts is made clear by the fact that it does not overrule the decision in 1975 that a Sheffield girl with Sotos’ syndrome

could not be sterilised (Re D (a minor) [1976] Fam. 185). The difference in the cases is in the facts. The Sheffield girl was only 12, there was no immediate prospect of any sexual relationship, and it was possible that she would be competent to have children and marry when she was 18. This is in marked contrast to the facts given in the report of the case concerning Jeanette.

J e a n e t t e , aged 17 yea r s , was described, varyingly, as being severely mentally handicapped or as having “moderate” mental handicap. She had been in an institution since the age of four (when someone had described her as being like a wild animal). She had limited intellectual development, described as being the ability to understand speech at a six-year-old level and to communicate at a two-year-old level. She suffered from epilepsy (the drug for which would make many oral contraceptives unreliable). She was o b e s e ( u p o n w h i c h m a n y o r a l c o n t r a c e p t i v e s w o u l d have a n undesirable side effect). She was at times aggressive and violent (which could make the giving of a pill difficult, if not impossible, from time to time). In addition there was a possibility of

pregnancy since she was becoming sexually aware (evidenced from her touching herself in the genital area and making provocative approaches to male members of staff). Consideration, therefore, was given to the possibility of contraception in the circumstances that: she would not be capable of an adult relationship or of looking after a child; she did not understand the link between sex and pregnancy al though she understood the link between pregnancy and child birth; she could cope with her own menstruation; and she could not be taught about sex in any “abstract” manner. Contraception was also thought to be appropriate because pregnancy would not be advisable, particularly as a Caesarean section would be necessary and Jeanette’s high tolerance to pain would mean that she would be unlikely to let the scars heal. It was also stated that because of her obesity a pregnancy might not come to light until it was too late to permit termination. Jeanette would never be able to care for herself or return to her mother’s care.

A strong case, therefore, was put for some sort of contraception, even though there are many questions that might be asked. For example: What actually was

MIKE G U N N is a Lecturer in Law in the Department of Law, University of Nottingham, University Park, Nottingham NG7 2RD.

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the imminent likelihood of pregnancy? Were there non-abstract methods of teaching, such as hands-on teaching, that could be used?

Having decided that contraception was appropriate, the House of Lords had to decide what form they should a u t h o r i s e . F o u r o p t i o n s were considered:

0 separation from men, which was not practicable in the light of the modern philosophy of care;

0 mechanical means, which were rejected because of Jeanette’s “ l i m i t e d i n t e l l e c t u a l development”; (Question: Whilst this may affect the viability of such measures as the cap or the sheath, why does it necessarily affect the use of IUD?)

0 the progestogen pill, which was rejected because: it would have to be taken for 30 years, over which period the side effects were unknown; it might not be t aken re l iab ly every day because of her aggression; and there was no possibility of a trial because of her age;

0 sterilisation by occluding the fallopian tubes which was to be regarded as irreversible.

S t e r i l i s a t i o n was t h e alternative accepted, because it was thought to be a relatively minor operation carrying a very small degree of risk, a very high degree of protect ion, and minimal side effects.

There is no space to raise all the issues of concern about the particular decision in this case, although some of the doubts have been raised in passing. The House did state that no sterilisation would or could be authorised for eugenic or social purposes. This is presumed to exclude sterilisations for the benefit of any person other than the individual who would be sterilised.

Non-therapeutic sterilisations There is the question of whether

people with mental handicaps should ever be sterilised in circumstances which are not therapeutic. (Therapeutic indicators include, for example, cancer of the womb). This approach has been adopted by the Supreme Court of Canada in Re Eve [1986] 31 DLR (4th)

1. It is not surprising that the House of Lords rejected this approach, o,” the assumption that a sterilisation can be for a person’s benefit. It is interesting to note that in America, although courts are very reluctant to authorise such operations, the courts are prepared to a c c e p t t h a t n o n - t h e r a p e u t i c sterilisations can be for a person’s benefit. This result is achieved by analogy with other people who elect such an operation for themselves. People with mental handicaps should have the same right to such an operation.

Age One of the major concerns is the

problem caused by Jeanette’s age. Despite an aside by one judge, this does seem to have played a major factor in the decision, for example, in accepting that a trial of the pill was not possible since it could only be concluded after she reached the age of 18. The problem is that a person can be a ward of court, and thus a court can take treatement decisions on that person’s behalf, until the age of 18. After that age no-one has the right to make such decisions, even if the adult is incapable. This lacuna in the law is, therefore, very unfortunate.

Treatment for adults who are incapable

This leads into a second and perhaps even more important development. It has always been assumed that courts do not have power to make decisions over adults who are incapable in the way that they have power over children under 18 years of age. One of the House of Lords judges indicated that he thought the courts might, in fact, have this power. This matter was put to the test in a case which was reported in The Independent on 14th July, 1987 (the case is Re T). Here the judge refused to accept the invitation of the House of Lords to recognise a parens patriae power over adults in addition to the wardship jurisdiction over people under 18. Nevertheless, the judge was able to declare that an abortion and sterilisation on an adul t woman with mental handicap, who could not herself consent, would be lawful. The facts are not fully reported, but the judge indicated that such steps would be acceptable, because they were in the “best interests of T,” and a medical adviser was in these circumstances justified “in taking such steps as good medical practice demanded”.

Whether or not this decision is right it is very important because it indicates that much of the treatment and care offered to people with mental handicaps is lawful, as has always been assumed.’ The criteria are therefore:

0 the proposed treatment must be for the benefit of the individual; (Thus, is the dental treatment for the individual’s benefit or that of the staff? Does this person need to have the broken arm set?)

0 good medical practice must demand the treatment. (Thus, setting broken bones in the usual way is acceptable; conservation of teeth is demanded as a f i r s t o p t i o n , no t comple t e extraction.)

Whilst the decision makes it clear that treatment of a wide ranging nature can be provided, the approach is not wholly satisfactory. The main question is whether the rights of people with mental ’handicaps are properly protected. Would it be better for an independent person to be involved, with the ultimate decision being made by a court? If courts are to be involved, they need education in how to make decisions. It is unfair to expect courts to understand the issues fully, and this problem may lie at the heart of some of the criticism of the courts in the Jeanette case.

Competence to decide Lying at the heart of these decisions is

the question of competence. In both cases the court indicated that the decision was made only on the initial basis that the particular individual was he r se l f i n c o m p e t e n t . W h a t i s competence was partially addressed by the House of Lords in Gillick v. West Norfolk and Wisbech Area Health -- Authority [1985] 3 All ER 402. It was indicated, in the context of considering w h e t h e r peop le u n d e r 16 were competent to consent to treatment, that what mattered was whether they were “capable of understanding what was proposed and of expressing his or her own wishes”.

Whether individuals have that capacity is very much a personal

Footnote 1. In an unreported case it has been decided

that an abortion on a woman with mental handicap would not be “unlawful”. It is assumed that this was because the operation was necessary. The test put forward in Re T is wider and more usable.

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MENTAL HANDICAP VOL. 15 DECEMBER 1987

Age range (years)

question which is not dependent on the label that they carry and is not easy to answer. It would seem appropriate to involve numerous professionals in answering the question of people’s capacity (as well as the individuals themselves and their relatives). It is quite likely that some people may be

Under 16-19 20-29 30-39 40-49 50-59 60-69 Totals 16

Letters

Male Female

The nursing process in mental handicap services

The lively correspondence in Mental Handicap (1987; 15:3, 126-7) involving Elizabeth J. Williams and Robert W. Martin has gratified me as Chairman of the Frenchay Health Authority Nursing Process Team Leaders’ Coordinating Group.

The group, consisting of nurses from all Frenchay Health Authority Units - General, Mental Heal th , Mental Handicap, and Community - meets at six-weekly intervals to discuss progress, act as a support group, and generally encourage the implementation of care planning across the District. Members are joined by colleagues from the two neighbouring Health Authorities.

I have worked with Robert Martin and know that the work undertaken by him and his colleagues was locally and nationally respected. What is patently obvious to anyone who has an overview of several areas trying to implement care planning, is that continuity is impossible to guarantee.

All Units I know of, both locally and nationally, report on periods when care planning is of a very high order; then with inevitable staff changes, staff shortages, and policy changes, there are periods when all planning is in the doldrums.

Elizabeth Williams is an experienced nurse. Her comments, I believe, are not a criticism of Robert Martin’s work - which stands on its own merits. We need the Elizabeth Williamses and Robert Martins of this world because their commitment to client care is so obvious.

If energetic debate in respect of care planning results in better care, then all of us should feel that we are making progress. CYRIL FRAIN, Head of Frenchay Centre,

1 2 4 1 0 2 0 10 0 0 3 1 2 1 1 8

capable of making simple decisions but not more complex ones. They may be considered, therefore, competent to make such simple decisions and those decisions would have to be respected. There is no simple dividing line between people who are competent for all purposes and people who are not.

I

Total

Avon School of Nursing, Frenchay Hospital, Bristol BS16 1LE.

1 2 7 2 2 3 1 18

Why do people with mental handicaps c o m e to a psychiatrist?

Source

Male Female

Today the statement that people with mental handicaps do not need psychiatry is often made. Like most generalisations it is true in the sense that it can be seen to apply to the majority of people with mental handicaps. In practice, however, a minority continues to be referred to psychiatric specialists and clinics.

This letter presents a review of a six- month analysis of people newly referred to a psychiatric consultation service for people with mental handicaps. In the period studied, 1 January to 30 June 1987, one consultant psychiatrist was serving the whole population of 710,000 in the combined Leeds Western and Leeds Eastern Health Districts. All new referrals for a psychiatric opinion came to the one consultant, so recording was easy and consistent.

Family doctor CMHT Other specialists/ Total hospitals

7 2 1 10 4 0 4 8

Numbers and sex 18 new patients, that is, people who

had not previously been seen by a psychiatrist in mental handicap, were referred to the service in the period

1 analysed, 10 male and 8 female.

~ Age distribution

1 The age range of the people referred is given in Table 1. Nine (50 per cent) were in the 16 to 29 age range, confirming that this is a time of life during which people with mental handicaps have needs and pose challenges which are recognised as requiring psychiatric help.

Sources of referral The sources initiating the referrals are

given in Table 2. The Community Mental Handicap Team (CMHT) referrals were initiated with the knowledge of the family doctors concerned.

Intelligence categories The intellectual status of the people

r e f e r r e d b a s e d on t h e N i n t h International Classification of Diseases ( I C D 9 ) , S e c t i o n o n Men ta l Retardation, is set out in Table 3. The high proportion of people with mild handicap referred showed that the consultation service cannot confine itself to only those with a severe degree of handicap.

Reasons for referral The reasons for referral (see Table 4)

concurred with the impression that challenging behaviours were frequently a reason for referral. People referred for general advice were welcome and these referrals reflected the expectation that t he psychia t r ic special is t has a coordinating role in mobilising help. Even though it is now the declared

TABLE 1: Age range of people referred

I Totals I 11 1 2 1 5 I 18 1 TABLE 2. Sources of referral

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