Table 2.
Issues relevant for parents in pACP.
| Relevant issuesa | |
|---|---|
| Medical issues | Parents’/child’s treatment goals |
| Anticipated disease course, possible situations, and interventions | |
| Treatment limitations: reasons, medical indication | |
| Emergency planning: proceeding when parents absent, hospital admission yes/no, other places to go, on-site support for parents | |
| Information about dying: process of dying, symptoms, and pain | |
| Pain treatment/sedation, rationale, and consequences | |
| Genetic screening for future pregnancies | |
| Non-medical issues | Being good parents: caring for the child, satisfying its needs (e.g. breastfeeding), comforting the child |
| Promoting quality of life, having a good time together | |
| Possibilities for a break, for example, children hospices | |
| Dealing with siblings: paying attention to them, understanding their experiences, talking about dying with siblings | |
| Social network, personal support in daily life and crisis situations | |
| Offers for psychosocial support, for example, a chaplain | |
| Spiritual issues, for example, ideas about life, death, afterlife | |
| Planning of the living: school attendance, capacity to work, financial aids, important activities (e.g. school enrollment, driving license) | |
| Farewell planning: saying goodbye, leaving messages, creating memories, and bequeathing belongings | |
| Planning of the dying: preferred place of death, presence of the family, privacy, proceeding after dying | |
| Funeral planning: options, preferences, addresses, and repatriation of the corpse | |
| Bereavement care: service offers, being happy again | |
pACP: pediatric advance care planning.
a
Listed order does not reflect priority.