Dunja Dreesens

102 Box 1: Quick overview of the CPG Palliative care for children Despite the large number of publications in support of children’s (ethical) right – and desire – to participate in their own health care and decisions, pediatricians usually do not involve them in the decision-making. One reason being the clinicians’ underestimation of children’s capabilities, because of the children’s age, pediatricians think they cannot or do not want to be involved in the decision making (260, 261). A national survey (2011) among Dutch pediatricians showed that 21% perceived a need to share the final responsibility for an end-of-life decision with the parents. Half of the respondents would inform parents and ask for their permission to discontinue treatment, and a quarter would merely inform parents (262). Reasons for not sharing the decision were: complexity/uncertainty of the decision at hand, and/or protecting the parents. Another important aim of the guideline Palliative care for children was therefore to trigger an attitude shift towards SDM in palliative pediatric care. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians’ attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs. CLINICAL PRACTICE GUIDELINE PALLIATIVE CARE FOR CHILDREN (NVK, 2013) The guideline consists of three chapters, each providing recommendations on the topic at hand. 1. Symptoms Recommendations on recognition and treatment of symptoms, such as anxiety, nausea, pain,spasticity and fatigue. 2. Communication & decision-making Recommendations on decision-making, such as: - Take into account the values and preferences of the child and/or parents; - Be conscious of the fact that decision-making is a continuous process; - Ask the child and/or parents at various moments which decision-making role they would like to have; - Cary out the conversations in a quiet, private and comfortable space; - Clarify mutual goals; - Confer with the child and the parents, [...], use nonprofessional language, and repeat what has been discussed; - Record the view of the parents in the patient file. 3. Organisation of palliative care Recommendations on the organisation of care, such as coordination & responsibilities, patient record, educating healthcare professionals and financing palliative care for children. Chapter 6