Ethics of withdrawal PICU perspective

Dr Anami GourConsultant Paediatric Intensivist

Withdrawal of treatment in PICU accounts for 43%-72% of deaths in the UK and other countries where it has been studied

Guidance and framework- no prescriptive formula available

RCPCH- Five situations where it may be ethical and legal to consider withholding or

withdrawal of LSTThe “Brain Dead” Child. criteria agreed by two practitioners

The “Permanent Vegetative” State” following insults, such as trauma or hypoxia, is reliant on others for all care and does not react or relate with the outside world.

The “No Chance” Situation. Such severe disease that life-sustaining treatment simply delays death –MOF

The “No purpose” Situation. Although the patient may be able to survive with treatment, the degree of physical or mental impairment will be so great that it is unreasonable to expect them to bear it.

The “Unbearable” Situation. The child and/or family feel that in the face of progressive and irreversible illness further treatment is more than can be borne. They wish to have a particular treatment withdrawn or to refuse further treatment irrespective of the medical opinion that it maybe of some benefit.

PICU and acute paediatrics

• No ethical distinction between withdrawing and withholding

• Does not imply that a child will receive no care. It should rather signal a change in focus towards palliative care making sure that the rest of the child’s life is as comfortable as possible

• In acute situations it is always necessary to give life-sustaining treatment first and to review this when enough information is available, by more experienced person

Legal issues on PICU• Parental responsibility• Views of the children• Mental capacity (applies over 16’s)

QOL assessment-parents may impose their values and goalsQOL assessment tools do not provide a useful mechanism to decide the best interest (BMA, 2007, para 6.1, page 10)

Views of the children and the capacity to consent

Depends more on young people’s ability to understand and weigh up options than on age. – at 16 a young person can be presumed to have capacity to consent

– a young person under 16 may have the capacity to consent, depending on their maturity and ability to understand.

RCPCH 2004- 2.3.2.8 It is ethical to withdraw life sustaining treatment if refused by a competent child; or from children who are unable to express wishes and preference when the Health Care Team and parent/carers agree that such treatment is not in the child’s best interests.

Resolving disagreements

Resolving disagreements through consensus

• …independent advocate, seeking advice from a more experienced colleague, obtaining a second opinion, holding a case conference, or using local mediation services.

• …still significant disagreement, you should seek legal advice

• The patient, those authorised to act for them and those close to them should be informed, as early as possible.

To give a choice or give a direction

Art of communicationReligious and social backgroundMoral pressure Family support

Core principle• Most appropriate test- ‘Best interests’ of the child

• Importance of RCPCH/ GMC GuidelinesBolam principle- …a doctor is not negligent if he acts in accordance with a practice accepted at the time as proper by a responsible body of medical opinion, even though other doctors adopt a different practice…

Bolam v Friern Hospital Management Committee CourtHigh Court Citation(s)[1957] 1 WLR 582

Future• Nationwide observational study by PICUs at SGH & RMCH

• looking at diversity in approach by paediatric critical care consultants when withdrawing critical care treatment in children with life-limiting conditions

• experiences in dealing with the conflict between family and medical teams

• Is there a need for a national body or framework?

• Hypothesise a body consisting of clinicians and experts in ethics and law

• This may potentially save time and resources and will support clinicians as well as inspire confidence in the families.