Advance care planning in pediatrics : Development and pilot evaluation of the IMplementing Pediatric Advance Care Planning Toolkit

Abstract

Advance care planning (ACP) is a strategy to identify, discuss and document goals and preferences for future care and treatment. In the care for children with life-limiting conditions, timely conversations about goals and preferences for future care and treatment support alignment to the child’s and family’s preferences and values. There is a reluctance in current practice to conduct ACP conversations due to barriers such as uncertainty regarding the child’s diagnosis or prognosis, lack of skills, coping strategies, fears to trigger emotions and perceived unreadiness of families to be involved in ACP.

This thesis describes the development and evaluation of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). IMPACT aims to support clinicians and families in pediatric ACP. IMPACT was designed based on a systematic review, a survey study among pediatricians and interview studies with children, parents and clinicians. IMPACT aims to support a holistic approach towards pediatric ACP with a focus on the child’s perspective and an attitude of caring towards parents. IMPACT consists of a toolkit with materials to prepare, structure and document ACP conversations. A clinician training was developed to support adequate use of IMPACT.

Clinicians and families reported in a pilot study that ACP conversations based on IMPACT have a family-oriented content. The conversations support the family-clinician relationship. This stimulates sharing of future perspectives. We identified that although perspectives regarding living with illness and living a good life were shared extensively, defining goals of care based on these perspectives was more difficult.