Advance care planning for children
Many of the principles of advance care planning for adults are applicable to children; however, there are some notable differences that relate to decision-making and the relevance of legislation. In the paediatric setting, the parent is usually the decision-maker for the child, until the child is competent to make their own decisions (see Decision-making and the child’s autonomy); this includes decisions made about advance care planning. State-based legislation relating to advance care planning usually does not apply to people younger than 18 years, although this varies between states and territories. While advance care planning can still be undertaken for a child, in most states and territories, a written plan is not a legally binding document, as it usually is for adults. For more information, see the relevant sections on state and territory laws on the Advance Care Planning Australia website.
Advance care planning in paediatric palliative care gives both a child and their family time to consider and discuss their condition and prognosis, and to explore options, before an acute deterioration in the child’s condition. Many children and their families find that it provides peace of mind.
Advance care planning can be a helpful clinical decision-making tool. It usually includes consideration of the goals of care at the end of life (including resuscitation plans), as well as preferences for the location of care, spiritual issues and organ and tissue donation. Nonmedical domains of a child and family’s life may also be included, for example, schooling, going on a family holiday or reaching an important milestone, such as a birthday.
Discussion about advance care planning should focus on a child and their family’s quality of life, and what is in their best interests. It is helpful to highlight the interventions that are likely to be beneficial (eg supportive care, symptom management), rather than those that may not be (eg resuscitation measures). Talking about ‘allowing a natural death’ can help to focus on the activities and interventions that might lead to ‘dying well’; see Understanding what ‘dying well’ means to a patient.
Decision-making should include the preferences of the child and the knowledge and expertise of their family and the healthcare team. Younger children may have a view on treatments offered, and their preferences should be taken into consideration even if they are not directly involved in discussions. Many older children and adolescents have the ability and willingness to be involved in such discussions and should be part of the process. Adolescents find it helpful to discuss and document their preferences for care at the end of life; in particular, they value being able to make arrangements for their death and leave messages for their loved onesLotz, 2013. Although this is generally the case, one of the challenges in advance care planning with adolescents can be engaging them in conversations about prognosis and decision-making. Some questions that may be helpful include:
- We have some new information about your disease. Would you like to be a part of this conversation right now? Or, are there things you would rather we talk to your parents about first?
- How much information do you want us to share with you?
- Are there things you would like to speak privately to me about?
- How do you feel about giving your parent(s) the opportunity to speak privately with me?
Ideally, advance care planning should be undertaken well ahead of time and written into a plan for the family. However, some families are unable to engage in advance care planning; it is important to take a flexible and patient-centred approach.
The Thinking Ahead resources1 provide guidance on the advance care planning process for children. These documents include situations that prompt care planning discussions, as well as suggested phrases and language to use in these discussions.