Advance Care Planning: Challenges and Approaches for Pediatricians

Abstract

We hope that acknowledgement of some of the challenges, alongside recognition of the clear benefits, of planning will help pediatricians to deliver this important area of care.

Individualised advance care planning in children with life-limiting conditions

“…In a recent study in the UK, authors found that in one in four children with a life-threatening or life-limiting condition, there was no advanced care plan, and almost half of all patients and their families were not offered a choice regarding location of care in the last months of life and location of death 17. The lack of this advanced care plan implies important decisions might be made later, on an ad hoc basis and the risk of time and/or emotional pressure.…”

Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: a pilot study

“…Countries such as the UK are leading the way in paediatric palliative care, with enhanced integration within the health care system and well‐established and effective guidelines and resources to assist in advanced care planning for children (Finlay et al . ; Heckford & Beringer ; Xafis et al . ,).…”

“…Palliative care benefits these children and families by providing expert symptom management, care coordination and supportive counselling, including advanced care planning (Graham & Robinson ; Miller et al . ; Heckford & Beringer ; Schwantes & O'Brien ). Early integration of paediatric palliative care is recommended by national organizations for a variety of paediatric illnesses and has been shown to be feasible and acceptable (Department of Health ; Mack & Wolfe ; American Academy of Pediatrics ; American Academy of Pediatrics, Section on Hospice and Palliative Medicine and Committee on Hospital Care ; Berlinger et al .…”

“…Such children have increased morbidity and mortality, undergo frequent hospital and intensive care unit admissions, receive care from multiple subspecialty teams and often suffer from distressing symptoms (Cohen et al 2012;Walter et al 2013;Schwantes & O'Brien 2014). Palliative care benefits these children and families by providing expert symptom management, care coordination and supportive counselling, including advanced care planning (Graham & Robinson 2005;Miller et al 2012;Heckford & Beringer 2014;Schwantes & O'Brien 2014). Early integration of paediatric palliative care is recommended by national organizations for a variety of paediatric illnesses and has been shown to be feasible and acceptable (Department of Health 2004;Mack & Wolfe 2006; American Academy of Pediatrics 2013; American Academy of Pediatrics, Section on Hospice and Palliative Medicine and Committee on Hospital Care 2013; Berlinger et al 2013;Lafond et al 2015).…”

“…Although children with complex chronic medical conditions have a lifelong life-threatening illness and require care across multiple locations, rarely is an advance directive or care plan in place (Pierucci et al 2001; Thompson et al 2009;Keele et al 2013;Heckford & Beringer 2014;Liberman et al 2014). Assistance with advanced care planning is desired by patients with chronic life-threatening illness and their families (Lyon et al 2009(Lyon et al , 2013Pousset et al 2009;Wiener et al 2012;Xafis et al 2015a,b), yet many paediatric specialists are uncomfortable initiating palliative care conversations or completing advance directives with their patients (Walter et al 2013;Lotz et al 2015).…”