Table 4.
Requirements for pACP according to the view of professional stakeholders.
| Parameters | Characteristics and requirements |
|---|---|
| Time points/reasons for initiating pACP | The patient’s/family’s readiness for EOL discussions |
| After diagnosis of an incurable disease (as early as possible) | |
| Changes in the care setting (e.g. discharge), child left in the care of others | |
| Considerable deterioration in the child’s condition, severe crises | |
| Before admission to the pediatric intensive care unit | |
| Process characteristics | Repeated discussions with the patient/parents |
| Gradual and sensitive process, adjusted to parents’ coping | |
| Distribution of the AD to all relevant care providers in the community | |
| Regular review of decisions; revocation of decisions always possible | |
| Participants in pACP | Pediatric palliative care provider as continuity person/pACP facilitator |
| Any physician in charge for the child (e.g. primary care, local hospital) | |
| A second independent physician | |
| Nurses in charge for the child | |
| Psychosocial professionals in charge for the child (psychologist, social worker, chaplain, representatives of non-medical care institutions such as the school) | |
| A non-medical “supervisor” of the pACP process (lawyer, ethicist, chaplain) | |
| Topics of discussions | Information giving (disease, prognosis, treatment options, dying process) |
| Goals of care and future treatments | |
| Emergency planning | |
| Comprehensive care planning and daily life issues (e.g. school attendance, additional support options) | |
| EOL and bereavement planning | |
| Content of ADs | Medical background (diagnosis, prognosis), medical rationale why the child has an AD |
| Confirmation that the parents have been fully informed and engaged in repeated discussions | |
| The patient’s/parents’ treatment preferences for specific situations: what they want/do not want to be done | |
| Concrete instructions for emergencies, contact person with phone number | |
| Future care/support options discussed (e.g. outpatient care service, disability home) | |
| Persons that have attended the discussions | |
| Specific date or conditions for re-examination of the AD | |
| Professional education | Education about pACP and pACP documents |
| Legal issues (e.g. legal status of pACP documents, involvement of the child) | |
| Overview of available care/support services in the community | |
| Communication training (e.g. addressing EOL issues) | |
| Particularities in different cultures (e.g. cultural taboos concerning EOL discussions) | |
| Spiritual needs of patient/families | |
| Palliative care basics, especially for non-pediatricians, nurses and psychosocial professionals | |
pACP: pediatric advance care planning; EOL: end of life; AD: advance directive.