Decision aids available for parents making end‐of‐life or palliative care decisions for children: A scoping review

Abstract

Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. Methods: Six databases and the grey literature were searched in December 2018. Two reviewers independently reviewed database citations, and one reviewed grey literature citations. Citation chaining via Scopus was conducted. Quality was assessed using IPDAS Collaboration Criteria. Results: After reviewing 18 671 database citations and 10 988 grey literature citations, 18 citations describing 11 decision aids remained. Decision aids targeted premature infants, children requiring airway management, children with cancer and children with scoliosis. Three aids underwent testing beyond initial development. Quality scores averaged 27 of 50 points. Conclusions: There are few high-quality decision aids available for use and a lack evidence of widespread clinical use. Additional research is needed to support systematic development and the use of decision aids with families.

Vivências de familiares diante da finitude da criança no processo de adoção de cuidados paliativos

“…Isso exige que a equipe busque acessar a cultura, os princípios de vida, religiosidade e espiritualidade da família, incluindo suas capacidades cognitiva e social, para considerar a possibilidade de envolvê-la no processo de decisão. Então, fazer escolhas baseadas nos valores, crenças e interesses das famílias das crianças, é um dos maiores desafios para a equipe (18)(19) .…”

“…Para que possam participar do processo decisório, os familiares precisam compreender plenamente as informações que são fornecidas pela equipe de saúde (18) . Para isso, é necessário que os profissionais de saúde envolvidos em cuidados intensivos desenvolvam suas habilidades comunicativas de forma a dar suporte às famílias no processo de decisão, permitindo que os familiares possam expressar suas dúvidas, pontos de vista, medos e expectativas (20) .…”

“…Torna-se fundamental acolher a família em um processo de escuta e fornecimento de apoio às suas necessidades, possibilitando um espaço dialógico, incluindo abordagens progressivas sobre o assunto, de forma solícita, compassiva, compreensiva e paciente, deixando claro que o objetivo principal da equipe de saúde é o melhor interesse da criança e o seu benefício máximo, e não o abandono (7,(18)(19) .…”

The experience of families in face of the finiteness of their children in the process of adopting palliative care

“…As a result, the team must try and access the culture, the principles of life, religiousness, and spirituality of family, including their cognitive and social capabilities, to consider the possibility of involving them in the decision process. Therefore, making choices based on the values, beliefs, and interests of the family of the child is one of the greatest challenges for the team (18)(19) .…”

A Communication Guide for Pediatric Extracorporeal Membrane Oxygenation

“…Supported by evidence from other serious illness conversation guides, we anticipate incorporating a structured conversation guide for ECMO will: 1) facilitate clear expectations toward a common treatment goal, 2) foster therapeutic relationships, 3) mitigate communication gaps meeting family needs, 4) ensure clinician alignment and consistent language, 5) benefit bereavement, and 6) avoid conflict (11)(12)(13). This framework should be adapted to unique institutional and clinical situations, patients and families, with elements applicable in adults.…”