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Original article
Individualised advance care planning in children with life-limiting conditions
  1. Erik A H Loeffen1,
  2. Wim J E Tissing1,
  3. Meggi A Schuiling-Otten2,
  4. Chris C de Kruiff3,
  5. Leontien C M Kremer4,
  6. A A Eduard Verhagen5
  7. Pediatric Palliative Care—Individualized Care Plan Working Group
    1. 1 Department of Pediatric Oncology/Hematology, University of Groningen, Beatrix Children’s Hospital, University Medical Center Groningen, Groningen, The Netherlands
    2. 2 The PAL Foundation (PALliative care for children), Utrecht, The Netherlands
    3. 3 Department of Pediatrics, Emma Children’s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    4. 4 Department of Pediatric Oncology, Emma Children’s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    5. 5 Department of Pediatrics, University of Groningen, Beatrix Children’s Hospital, University Medical Center Groningen, Groningen, The Netherlands
    1. Correspondence to Dr Erik A H Loeffen, Department of Pediatric Oncology/Hematology, University of Groningen, Beatrix Children’s Hospital, University Medical Center Groningen, Groningen, The Netherlands; eah.loeffen{at}umcg.nl

    Abstract

    Introduction In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline ‘Palliative care for children’. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline’s recommendations, advance care planning and patients’ and parents’ preferences and desires.

    Methods A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness.

    Results The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness.

    Conclusion We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients’ and parents’ preferences and desires are included next to the recommendations of the evidence-based guideline ‘Palliative care for children’.

    • palliative care
    • individualized care plan
    • children
    • life-threatening or life-limiting conditions
    • advance care planning

    https://doi.org/10.1136/archdischild-2017-312731

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      Footnotes

      • Contributors EAHL designed and adjusted the IPPCP, coordinated the pilots, carried out the initial analyses, drafted the initial manuscript, revised the manuscript and approved the final manuscript as submitted. WJET and CCdK provided comments for the initial IPPCP, took part in both the retrospective and prospective pilot, critically reviewed the manuscript and approved the final manuscript as submitted. MAS-O provided comments for the initial IPPCP, critically reviewed the manuscript and approved the final manuscript as submitted. LCMK and EV conceptualised and designed the study, provided comments for the initial IPPCP, critically reviewed the manuscript and approved the final manuscript as submitted. All members of the Pediatric Palliative Care – Individualized Care Plan Working Group provided comments for the initial IPPCP and critically reviewed the manuscript. Some members took part in the prospective pilot. All members approved the final manuscript as submitted.

      • Funding The project “Development of an individualized pediatric palliative care plan” is supported by a grant of the Netherlands Organisation for Health Research and Development (ZonMW, project number 626006007).

      • Competing interests None declared.

      • Provenance and peer review Not commissioned; externally peer reviewed.

      • Collaborators LM Ball (Willem-Alexander Children’s Hospital, Leiden University Medical Center), GCB Bindels-de Heus (Sophia Children’s Hospital, Erasmus University Medical Center Rotterdam), TRRM Dabekaussen (Emma Children’s Hospital, Academic Medical Center Amsterdam), MAR de Groot (Emma Children’s Hospital, Academic Medical Center Amsterdam), M de Jong (Beatrix Children’s Hospital, University Medical Center Groningen), MC Kars (Julius Center, University Medical Center Utrecht), J Kasten (paediatric home care: KinderThuisZorg), MCM Koot (parent, via association VKS), N Krouwel (parent, via association VOKK), MA de Meij (general practitioner, involved in the Expert Center for Palliative Care, Academic Medical Center Amsterdam), EMC Michiels (Sophia Children’s Hospital, Erasmus University Medical Center Rotterdam), M Potters (patient/parent association VOKK), AYN Schouten-van Meeteren (Emma Children’s Hospital, Academic Medical Center Amsterdam), R Spits (Dutch Nurses Association: V&VN), S Vallianatos (Palliative care for children: the PAL foundation) and SM van Walraven (Palliative care for children: the PAL foundation).