Introduction
Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions.1 PPC begins when a life-limiting or life-threatening illness is diagnosed and continues regardless of whether or not the child receives curative treatment.2 PPC is the prevention and relief of physical, psychological, social and spiritual suffering of children and their family, and aligns with patient-centred and family-centred care.2 According to The Institute for Patient-Centred and Family-Centred Care, patient-centred and family-centred care is grounded in mutually beneficial partnerships among patients, families and healthcare professionals (HCPs) in the planning, delivery and evaluation of care.3 Most of the children eligible for PPC receive complex high-tech care, which can last for months or years.4 5 This care is often provided by a multitude of different HCPs in different lines of care and organisations, which can lead to fragmentation of care and lack of continuity of care.5 6 Without established anticipatory care, for example, an individual care plan (ICP), PPC must be provided more often, with less expertise, in emergency situations, outside office hours and by non-regular practitioners, all with consequences for the continuity of care.7
In 2013, the Dutch multidisciplinary, evidence-based guideline ‘palliative care for children’ was published.8 The guideline aims to improve PPC by formulating recommendations, including recommendations for decision making and organisation of care. Currently, the Dutch guideline is being revised. Based on the recommendations of the guideline, an ICP for PPC was developed to translate the general recommendations into a personalised plan for the individual child.7 The ICP is a written care plan that supports HCPs, and the child and his/her family to address all dimensions of PPC, that is, physical, psychological, social and spiritual, in a structured manner. The ICP supports patient-centred and family-centred care aligned to the family’s needs, goals and preferences, provides a clear overview of their preferences and desires and of shared goals of child/parents and HCPs. Advance care planning is an approach that facilitates appropriate future care planning which is integrated as part of the process of developing an ICP.9
Among adults, ICPs have shown to promote patients capability to self-manage their conditions and improve health status indicators.10 In children with cerebral palsy, the use of an ICP has shown to facilitate family-centred care, helped parents to navigate their child’s care, decreased hospital admissions, shortened hospital stays and reduced fragmentation of care.11 The Dutch ICP has shown to facilitate high-quality care and the transitions of care between hospital and home.7 Despite promising results on the use of ICP in healthcare, there is little insight into the use of ICPs in PPC.
Despite the increase of specialised PPC, the ICP is not completed for all children in PPC, and often drawn up in the terminal phase, while issues with fragmentation of care and continuity of care can exist from the start of PPC and not only in the terminal phase.6 Furthermore, advance care planning tools are not always used, while these could fit very well with the ICP process.12 It is, therefore, important to study which adjustments are necessary to have the ICP used to its full potential, what parents and HCPs value and dislike about the ICP, and what the process of drawing up and working with an ICP looks like. By studying this, we aim to improve the ICP document and user experiences, strengthen the patient-centredness and family-centredness and integrate advance care planning, and thereby improving the quality and continuity of care for every child with a life-threatening or life-limiting condition and his/her family. In this paper, we present our study protocol of the study: ‘Improvement and Implementation of a National individual Care Plan in Paediatric Palliative care’.