Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014.

BACKGROUND: Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs' missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014. METHODS: Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation. RESULTS: Between 2010 and 2014, 3607 children and young adults (0-21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found. CONCLUSION: PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.

Oyster Care: An Innovative Palliative Approach towards SPMI Patients.

Oyster Care is the result of the search by caregivers in Flanders, Belgium, to develop quality care for patients with a Severe and Persistent Mental Illness (SPMI). This article offers a conceptual analysis of the Oyster Care model, based on experiences, analysis, and reflection of the authors, and on several examples. The starting point of the development of this new care model is the complex and difficult context of the care for SPMI patients. Their needs and suffering are very challenging on account of a wide variety of causes. At the same time they are in danger of being neglected by the care system. Paradoxically, the development and implementation of psychosocial rehabilitation in Belgian mental health care puts the care for these patients under pressure. In practice, they are often exposed to over- or under-treatment. Another aspect that has influenced the search for more qualitative care in cases of severe psychological suffering in general and palliative approaches in particular is the background of the legal regulation of euthanasia in Belgium. Oyster Care is an innovative form of the palliative approach and philosophy, tailored to the specific target group of SPMI patients. The caregivers create an "exoskeleton" or "shell" in which SPMI patients can "come to life": they are mainly dependent on the "external structure" they receive in order to function, rather than on the "internal structure" of their abilities. It is a dynamic approach that responds to the needs, possibilities and pace of each patient: within this safety, people can fold back or take new steps. Oyster Care is also a holistic care approach, based on four pillars: physical care adequately responding to the somatic impairments of these patients; psychological care changing the scope of therapy by focusing on mental comfort and wellbeing; social care providing a structure of daily activities and contacts; existential care enhancing the experience of life as valuable and meaningful. The wellbeing of patients is paramount and requires a range of interventions, such as a highly personal approach, a flexible dealing with rules, a great dose of creativity in everyday life, extensive expertise in somatic care, and specific attention to existential needs and the search for meaning. The development of this care model in a number of care units in Flanders increases the wellbeing of the patients and creates a significant positive dynamic among caregivers. However, more research and resources are needed to further develop and integrate this model.