Pediatric Advance Care Planning: A Scoping Review

Abstract

To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for children/youth. The scoping review protocol was developed in accordance with the Joanna Briggs Institute methodology for scoping reviews, and was prospectively registered on the Open Science Framework. MEDLINE, Embase, CINAHL, the Web of Science Core Collection, and Google Scholar, as well as sources of unpublished studies and grey literature, were reviewed. Sixty-four articles met the criteria. Fifteen pACP documentation forms/tools were also identified. Overall, the included articles highlighted that pACP should be a structured, collaborative and iterative process between the family and a trusted or relevant healthcare provider, encompassing medical and non-medical issues. Few articles provided insights into specific elements recommended for advance directive forms. Identified strategies for implementation included a structured, step-by-step pACP interventional tool along with ongoing training, mentorship, and defined organizational structures for the clinician. No single specific ACP tool was acknowledged as the gold standard. Use of a pACP tool, along with ongoing provider education and communication skill development, standardized/accessible documentation, and system-wide quality improvement support, were noted as integral components of pACP.

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning

“…In the adult population, the efficacy of ACP and its evidence base have been called into question, 41,42 and disagreement remains about the value of ACPs in clinical practice and research. 43,44 While the value of ACP is not as controversial in pediatrics, given evidence of its positive impact, [12][13][14]16,[45][46][47] ACP remains an underused and complex endeavor, as implementation of ACP programs has historically encountered multiple barriers, including clinician discomfort and lack of formal communication training or an evidence-based framework 6,24,25 A noteworthy finding of this study is the successful implementation of pediatric clinician training using a communication guide as a foundational element, which has been shown to be effective in preparing clinicians for ACP in other subspecialties. [48][49][50][51] Furthermore, this study targeted interprofessional clinicians, which is both novel and aligned with expert recommendations that stress the need to leverage nonphysicians to guide ACP.…”

“…[7][8][9][10] Thus far, ACP outcomes research in pediatrics has been primarily focused on adolescents with HIV and cancer, where interventions improve concordance of patient and family preferences with the care they receive and are associated with higher ratings of care quality and decreased decisional regret. 5,6,[11][12][13][14][15] In a 2019 study from our group, ACP was also associated with superior parent-reported EOL care outcomes, including improved preparedness for EOL, the ability to plan their child's location of death, and superior quality of life for their child. 16 Additionally, ACP that included specific assessment of family goals was associated with decreases in perceived child suffering at EOL and parental decisional regret.…”

“…1,2 Advance care planning (ACP) is an iterative process to honor patient and family goals and values involving communication about prognosis and the formulation of care plans addressing symptom management, quality of life, preferences for life-sustaining interventions, and anticipatory guidance about EOL. [3][4][5][6] Adult studies have found that families who participate in ACP are more satisfied with the care their loved one receives, are more prepared for death, and have improved bereavement outcomes. [7][8][9][10] Thus far, ACP outcomes research in pediatrics has been primarily focused on adolescents with HIV and cancer, where interventions improve concordance of patient and family preferences with the care they receive and are associated with higher ratings of care quality and decreased decisional regret.…”

“…5,[16][17][18][19][20][21] Additionally, many pediatric clinicians report both discomfort with and a lack of training in facilitating ACP. 6,17,[22][23][24][25] Multifaceted interventions combining educational and systems-based approaches can increase timely ACP discussions and improve patient and clinician experiences. 10,26,27 The Serious Illness Communication Guide (SICG) is 1 such tool that has been validated in adults to facilitate effective ACP communication.…”

The Silent Epidemic—Chronic Pain and Palliative Care Needs in Children and Adolescents

“…Communication with patients and parents [ 16 ], shared decision making [ 17 ], advanced care planning [ 18 ], and multimodal and interprofessional treatment [ 19 ] are major topics of interest. This new section welcomes articles on the four dimensions of palliative care: biological, psychological, social, and spiritual.…”