Decision-making in paediatric palliative care

Decisions about health care for a child should be made in the child’s best interests, and should consider their preferences if possible. Determining the best interests of the child involves weighing the benefits, burdens and harms of treatment, and taking into account the child’s prognosis, while trying to achieve the best possible outcomes for the child and their familyGoldman, 2000. The goals of care may prioritise the child’s quality of life over their survival. It can be helpful to consider questions such as ‘What is life like for this child?’ and ‘How does this child feel?’.

Parents and healthcare professionals should make these decisions together, incorporating the views of the child where possible. Carefully plan conversations on advance care planning to ensure the child is involved where appropriate. Depending on the child’s capacity to act autonomously, it may also be appropriate to speak to the child privately with parental consent.

Involvement of both parents is important as they may have different perspectives or be separated. Various legislation also needs to be considered in this context (eg legislation related to Child Protection, Family Court, domestic and family violence). One parent may be the primary decision-maker, (eg a parenting order issued by a family court), although it is important to consider the views of the other parent (if appropriate) when making a decision. Parents may be unwilling or unable to contribute to the decision-making process, or it may not be appropriate for them to do so; in these situations, a person (or agency) with parental authority based on appointment as a guardian will become the child’s decision-maker (eg a legally appointed guardian through Child Protection or similar legislation).

In some circumstances, parents feel everything must be done to prolong their child’s life, even when it is clear that the burden will outweigh the benefit. This can lead to conflict with the healthcare team. In such circumstances, it is important to acknowledge the parents’ grief and their need to ‘do everything’ to pursue a cure, and allow them time to understand the situation and focus attention on the child’s quality of life.

When disagreement between parents and healthcare professionals cannot be resolved, the ‘zone of parental discretion’ can be a useful ethical tool to consider whether the parents’ preferences should be accepted (see Zone of parental discretion). Seeking a second opinion or consulting with a clinical ethics service may also be helpful. Legal intervention is rarely required if these steps are followed.