LOOKED AFTER YOUNG PEOPLE,

TRANSITION AND

MENTAL CAPACITY

Roger Catchpole & Damian Hart

2 Case Vignettes

14 year old who has ADHD - Co- Morbid ‘Depression’ responds to Anti –

Depressants

In a relationship which ends very angry – Stops anti- depressants as he does not

want his mood “artificially improved” Still continues to take medication to control

symptoms of ADHD

12 year old girl who has Anorexia Nervosa is refusing all food and appears

withdrawn and perplexed. She recognises all living things need food for energy to

survive – claims she does not want to be incapacitated or die

14 Year old Inconsistency, rejecting anti – depressants potentially motivated by

anger due to relationship breakdown but continuing ADHD medication . There is

no suggestion that capacity to understand is impaired .

12 Year old: Does the girl appreciate the physical dangers of not eating

Although she can understand and retain the relevant information – she is unable

to believe it (in the sense of seeing how it applies to her) or weigh in the balance

Young Peoples Consent to Treatment and Competence is both complex and contradictory . When obtaining consent the Doctor must establish if the child is legally competent legal term ‘have capacity’ to give consent . All people over 16 and over presumed to have capacity to consent to medical treatment – unless evidence to suggest to the contrary If the child is not deemed legally competent consent will need to be obtained from someone with parental responsibility – unless in an emergency Emergency treatment can be provided without consent to save life or prevent serious deterioration in the health of child or young person

Children under 16:

Courts have determined that such legally competent if they have ‘sufficient

understanding and maturity to enable them to understand fully what is proposed’

A minor can consent but their refusal can be overruled by the consent of a person

with parental authority or by the court.

A young person who has the capacity to consent to straightforward , relatively risk

–free treatment may not necessarily have the capacity to consent to complex

treatment involving high risk or serious consequences .

The concept of competence is central to the law’s approach to consent – the ability

to understand information includes the treatment purpose, nature, likely effects

and risks, chances of success and the availability of any alternatives .

Unwise choices are permitted – e.g. a doctor and a patient may view and weigh the

information differently - understanding does not imply that a decision is made on a

rational basis – we all make critical decisions about our lives – such as whom we

want to be in a relationship with, car we buy, holiday, job choice may be made on

our ‘gut feelings rather than rational analysis.

The law may impose a dichotomy

Competent v Incompetent

We could view this from a development perspective

‘A spectrum of ability’. Welthorn and Campbell (1982) compared decision

making in four age groups: (9, 14, 18 & 21 year olds) healthy subjects and

hypothetical situations

14 years olds level of competence similar to 18 and 21 year olds

Deficits in the 9 year olds understanding and reasoning but their conclusions

were very similar to the 14, 18 and 21 years olds.

Alderson (1983) interviewed 120 young people (8- 15 year olds) all undergoing

orthopaedic surgery and also talked to parents and medics to determine

answers to the following question:

“How old do you think you were or will be when you’re old enough to decide

about surgery” Parents asked when they thought their child could make a wise

decision

Young People aged 14

Parents thought 13.9 years

Alderson then researched 983 school children same age but not undergoing orthopaedic surgery - they gave a slightly older age (mean age being 15 – 17) What does that tell us.. Past exposure to treatment decisions made the orthopaedic group of young people more confident about their decision making and also suggests that young people can be prepared for decision making about their treatments. McCabe (1996) provides a review of young people cognitive and social development in relation to decision making Reder & Fitzpatrick (1998) draw attention to the influence of emotional factors impacting upon decision making

The Care Program Approach (CPA) Continuity of Care - To assess, plan and follow up care – young person or adult needs to be at the heart of the process Describing your needs in order to get them met Right Care by the Right People Health and Social Care Needs Regular review especially for young people : Invitation is to work with young people to get this right They need to own this process and not have it done to them

Closing the Gap – Shared Decision Making in CAMHS

(1)Agreeing key problems and goals (2)Understanding options available (3)Agreeing which option will be tried (4)Reviewing progress (5)Making changes as necessary. CAMHS EPBU, CORC & Young Minds

Invitation to work with young people about decision making especially in

relation to mental health due to stigma which makes some young people

and adults afraid to seek help.

Young people are more likely to be competent and contribute to decision

making :

Respect for the young person - encourage trust and confidence

Give information, answer questions

Help them know what to expect

Reduce anxiety

Help the child / young person make sense of the experience

Warn about Risks

Prevent misunderstanding or resentment

To promote confidence and courage

There are choices and choices have consequences

Freedom from pressure , panic / anxiety, pain or other temporary factors

which could impair judgements

Understand the importance and how it applies to them – what it means in

their life

MENTAL CAPACITY ACT (2005)

• Applies to adults (aged 18 and over)

• Most of it applies to young people (defined as those

aged 16 and 17)

• Does not generally apply to children (defined as those

under 16) but there are specific exceptions

MCA 5 PRINCIPLES

• Every adult has the right to make his or her own decisions and must be

assumed to have capacity to make them unless it is proved otherwise.

• A person must be given all practicable help before anyone treats them as

not being able to make their own decisions.

• Just because an individual makes what might be seen as an unwise

decision, they should not be treated as lacking capacity to make that

decision.

• Anything done or any decision made on behalf of a person who lacks

capacity must be done in their best interests.

• Anything done for or on behalf of a person who lacks capacity should be the

least restrictive of their basic rights and freedoms.

TWO STAGE CAPACITY TEST

1. Is there an impairment of, or disturbance in, the functioning of

a person’s mind or brain?

2. Is the impairment or disturbance sufficient that the person

lacks the capacity to make the particular decision. Can they

• Understand the information relevant to the decision

• Retain that information

• Weigh that information as part of the process of making a

decision AND

• Communicate his/her decision (whether verbally or by other

means)

BEST INTERESTS

When making a decision in someone’s best interests you must:

• Involve the person as much as possible

• Find out the person’s wishes and feelings

• Consult people who know the person well

• Consider all relevant information

• Avoid making the decision if it is likely the person will regain

capacity

• Think about what would be the least restrictive option

BEST INTEREST

When making a decision in someone’s best interests you must

not:

• Make assumptions based on the persons age, appearance,

condition or behaviour

• Make a decision involving life sustaining treatment that is

motivated by a desire to end the person’s life

INDEPENDENT MENTAL CAPACITY ADVOCATE

• The IMCA is a safeguard for those people who lack capacity, who have no

one else other than paid staff who ‘it would be appropriate to consult’ (apart

from adult protection cases where this criterion does not apply). The

safeguard is intended to apply to those people who have no network of

support, such as close family or friends, who take an interest in their

welfare.

• Decision-makers in the NHS and local authorities need to determine if there

are family or friends who are willing and able to be consulted about the

proposed decision. If it is not possible, practical and appropriate to consult

anyone, an IMCA should be instructed.

• The IMCA service can be appropriate for young people (aged 16 and 17)

AN EXAMPLE

• Jason is 16 and Looked After. He is experiencing severe and

disabling anxiety affecting his daily functioning and extreme

compulsive behaviours. He has a history of depressive

episodes. He is withdrawn and isolated. His clinician proposes

CBT and a course of anti-depressants (SSRIs).

• What support should be offered to help Jason to make a

shared decision about treatment?

THANK YOU

www.youngminds.org.uk

Parents Helpline 0808 802 5544