In paediatric settings

Providing advance care planning in a paediatric context can be difficult. Many factors are involved, including:

  • The death of a child is relatively uncommon, so families, the broader community and paediatric health professionals have high expectations of modern medicine. Discussing death and dying is difficult and often avoided, usually because it is difficult for individual health professionals to acquire and maintain the necessary skills
  • Children suffer from a diverse range of life-limiting conditions. Malignancy accounts for only 25 per cent of this patient group. A large proportion have neuro-degenerative conditions that result in high levels of disability with time. The illness course is also often long and unpredictable
  • Developmental and neurological status affects how a child understands and communicates about their illness and their level of decision-making capacity

Parents have complex roles, as care-givers and proxy decision-makers:

  • What does a ‘good parent’ do in situations where their child is facing life-limiting illness? Many parents describe feeling torn between the desire to ‘leave no stone unturned’ in the quest for a cure and a desire to minimise their child’s suffering. Making a decision that may limit the longevity of the child may go against every instinct a parent has. The provision of nutrition and hydration, in particular, is fundamental to the parental role and can be extremely difficult to forgo
  • Parents must balance the needs of the sick child with the needs of siblings and the family as a whole
  • All parents offer life support to their children, particularly when they are very young. But some parents must take on the additional responsibility of quite literally providing ‘life-support’ in circumstances where their child has a life-threatening condition. They learn how to change tracheostomies and provide ventilation in the home environment and are taught how to intervene in critical episodes such as airway obstruction. How do they stop providing these if and when these interventions are judged to offer only a burden to the child and need to be withdrawn or withheld?
  • Parents and paediatricians need to work closely together to achieve the best outcomes for very sick children. As in any other area of advance care planning, trust, compassion and careful communication are crucial. The ideal is shared decision-making. Sometimes though, paediatricians must take greater ownership of very difficult decisions
More information

More resources about the paediatric setting