Individualised advance care planning in children with life-limiting conditions
Creator
Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group
Child Health Services/og [Organization & Administration]; Palliative Care/og [Organization & Administration]; Netherlands; Palliative Care/st [Standards]; Quality of Health Care; Male; Practice Guidelines as Topic; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; Child; Humans; Palliative Care/px [Psychology]; Female; Attitude to Health; Pilot Projects; Advance Care Planning/st [Standards]; Child Health Services/st [Standards]; Evidence-Based Medicine/mt [Methods]; Patient Satisfaction/sn [Statistics & Numerical Data]
Description
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'.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Child; Humans; Parent-Child Relations; Attitude to Death; Time Factors; Delphi Technique; adolescent; Preschool; decision making; infant; DNAR; Palliative Care/st [Standards]; Terminal Care/st [Standards]; Advance Care Planning/st [Standards]; Child Health Services/og [Organization & Administration]
Description
AIM: This paper describes the development of 'a best practice framework', following review of a sample of notes of children known to the Lifetime Service, where the child has a non-malignant life limiting condition, to improve child and family engagement in the planning process at the end of life., BACKGROUND: There is very little literature about how to engage with families to decide end of life plans for children with life limiting conditions., METHOD: An audit of clinical case notes was followed by the development of 'a best practice framework' through a Delphi process involving clinical practitioners., RESULTS: The 3 x 3 framework is presented to aid communication with parents and children at this difficult time of decision-making., CONCLUSION: This new framework has been well received by both parents and practitioners, and its use will be audited in the future.
2008
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Health Care Reform; Hospice And Palliative Care Nursing/og [organization & Administration]; Hospice Care/og [organization & Administration]; Quality Assurance Health Care; Biomedical Technology; Child; Child Health Services/og [organization & Administration]; Child Preschool; Female; Hospices/og [organization & Administration]; Humans; Male; Pediatrics; Residence Characteristics; Risk Assessment; United States
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).