11 Children and young people

Question 1

What are the medical decisions regarding children and young people?

Answer 1

• Capacity & consent:
– Could determine using function or status (or mix)
• Developing autonomy
• Seek to support and yet also protect – therein lies the tension

Question 2

Who is classed as a child and young person?

Answer 2

< 18 in England, Wales and NI
< 16 in Scotland

• Children = “People who aren’t mature enough to make important decisions for themselves”
• Young people = “… those who are”

Question 3

When a child lacks capacity, who makes the decision?

Answer 3

• Parents

• BUT decisions are constrained by best interests of the child
• If not then wishes can be overridden
• Note: If assent can be given, it should be sought

Question 4

As well as clinical best interest, what else should be considered?

Answer 4

1. Views of the child or young person
2. Views of parents
3. Views of others close to the child or young person
4. Cultural, religious or other beliefs and values of the child or parents
5. Views of other healthcare professionals involved in providing care
   to the child or young person
6. Which choice, if there is more than one, will least restrict the child or young person’s future options.

Question 5

Name the 2 cases in which the child lacked capacity and there was conflict due to doctors and parents disagreeing?

Answer 5

1. Case 1: Re S (Parents - Jehovah’s Witnesses)

2. Case 2: Re A (Jodie & Mary, conjoined twins)

Question 6

What occurred in the case when doctors and parents disagreed: Re S (Parents - Jehovah’s Witnesses)?

Answer 6

• S was 4 1/2 years old with T cell leukemia
• Undergoing chemotherapy & blood transfusion would improve recovery
• Parents refused (religious & safety reasons)
• Refusal overruled

Question 7

What occurred in the case when doctors and parents disagreed: Re A (Jodie and Mary - conjoined twins)?

Answer 7

• If they remained together, they would both die
• If separated, Jodie would live, Mary would die
• Doctors wanted to act to separate, parents did not allow
• High court, then court of appeal
• Separation took place

Question 8

What does “Gillick Competent” mean?

Answer 8

A young person under 16 with capacity to make any relevant decision

Question 9

How is competence determined (Gillick competence)?

Answer 9

• Understand, retain, use/weight this information and communicate decision
• Must also have a sufficient maturity to understand what is involved

Question 10

Explain, using either the lock/key or flak jacket analogy, why treatment can go ahead, even if a young person does not give their consent?

Answer 10

Consent is often more easily accepted than refusal. Why?
– Key & lock analogy (then, flak jacket)
– Doctor needs only 1 key to unlock “consent”
– 3 keys potentially exist in the case of the mature minor:
• Mature minor
• Parents (right co-exists)
• Courts

Question 11

Name the 2 cases which involve mature minors?

Answer 11

1. Case: Re E - Refusal of life-saving blood transfusion on religious grounds (overruled)
2. Case: Hannah Jones - Refusal of heart transplant after long term illness (upheld)

Question 12

What happened in the case involving a mature minor who, refused life-saving blood transfusion on religious grounds?

Answer 12

• 15 yr old boy
• Jehovah’s witness – refused blood transfusion for his leukemia
• Not enough to know he would die, but must understand the “manner of his death and the extent of his and his family’s suffering” (higher standard than adults?)
• Overruled

(Note: on turning 18 - he refused further transfusions and died)

Question 13

What happened in the case involving a mature minor Hannah Jones, who refused a heart transplant after long term illness?

Answer 13

• PCT sought court order for heart transplant for 13 yr old girl (she had refused to undergo the transplant – her parents agreed with her decision)
• Child protection officer said Hannah was adamant • Refusal respected

• (Note: agreed to transplant the following year, and is currently doing well)

Question 14

What are the laws on living organ donations from children?

Answer 14

• Scotland: Under 16’s cannot be living donors
• England, Wales and NI: Solid organ donation by living children is permitted

• BMA were opposed, now support so long as young person is competent to give valid consent and is not under coercion

Question 15

What are the euthanasia laws for children in Europe?

Answer 15

1. Netherlands:
   • Euthanasia is legal for > 12 years old (with permission of their parents) • Dutch Paediatric Association has now called for age limit to be lifted altogether (June 2015)
2. Belgium:
   • Lifted all age restrictions in 2014

Question 16

What are the ethical issues surrounded children and clinical research?

Answer 16

For:
• Research with children is crucial if children themselves are to benefit from the best possible treatment when they are ill

Against:
• Whether parents should or ought to allow their young children to participate in research that involves even minor discomfort or distress to
• The question of whether parents or children should have a right to participate in research – a right, for example, that may be claimed where a child is very seriously ill and a new, as yet-unlicensed, treatment is seen as being their ‘only hope’