The Serious Illness Conversation Guide program developed by Ariadne Labs, a Joint Center for Health Systems Innovation, includes a list of patient-centered questions designed to assist clinicians to gain a more thorough understanding of their patient’s life in order to inform future care decisions. In July 2017, specialist pediatric palliative care clinicians at Canuck Place Children’s Hospice (CPCH) (Vancouver, BC, Canada), adapted the original guide to use with parents of children with serious illness. This tool is referred to as the Serious Illness Conversation Guide-Peds (SICG-Peds). Using the SICG-Peds, along with enhanced communication skills, can help illuminate the parents’ (child’s) understanding of illness and the values they hold. Expanding the application of the guide will promote goal-based, efficient, comprehensive and consistent communication between families and clinicians and help ensure that seriously ill children receive care that is tailored to their needs through the disease trajectory. This paper explores the guide through the lens of a case study. The steps—seeking permission, assessing understanding, sharing prognosis and exploring key topics (hopes, fears, strengths, critical abilities and trade-offs)—as well as formulating clinician recommendations, are described.
To be truly comprehensive, palliative care for children must address more than pain control and symptom management. Holistic care also encompasses attention to the child's relationships, hopes, fears and wishes. Parents and caregivers of dying children are generally the primary decision-makers in the child's care and can find the transition from active, to palliative care, particularly difficult. Nurses who understand the parents' perspective can better support them. Children reveal their hopes and fears through play. By being attuned to symbols and themes in play, nurses can better interpret the dying child's journey. Nurses can facilitate communication and connection between parents and child and thereby promote healing during the dying process.
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.
Objective: To explore the literature surrounding pediatric ACP process, documenting and implementing the documentation processes in hopes to inform and support content experts in the creation of a pediatric provincial document for ACP.Introduction: The number of children with serious illness/medical complexity in this province who require ACP and documentation of medical intervention is estimated to be >500 or possibly more. An ongoing data analysis suggests that the number may exceed 1,000 children, greater than the number of children and families consulted to the CPCH program. Currently there is no provincial document for pediatric patients such as the BC Medical Orders for Scope of Treatment form (MOST) as there is in adult care.Inclusion criteria: The review will include studies that focus on documentation, process or implementation in pediatric advance care planning. Child refers to prenatal, neonate, child and youth population (0-19 years), but may also extend into young adulthood in some contexts. These children are defined as at-risk for sudden death and/or expected death prior to reaching adulthood.Methods: We will search MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCOhost), Web of Science Core Collection and Google Scholar, as well as sources of unpublished studies and grey literature. Identified studies will be screened against the eligibility criteria. This review will only consider studies published in English and no date limits will be placed on the search. Relevant data will be extracted from eligible studies and the extracted data will presented in narrative and tabular/charted formats.
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