The 'good death' in pediatric oncology

Title

The 'good death' in pediatric oncology

Creator

Taylor M; Barton K; Rosenberg A

Identifier

Publisher

Pediatric Blood and Cancer

Date

2019

Subject

adult; advanced cancer; advanced practice provider; aged; avoidance behavior; childhood cancer; clergy; clinical article; cohort analysis; conference abstract; content analysis; controlled study; female; genetic transcription; human; male; medical staff; music; pediatric hospital; physiotherapist; prospective study; semi structured interview; software; sudden death; terminal care; young adult

Description

Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death' from the perspective of Adolescents and Young Adults (AYAs) with advanced cancer, their caregivers, or their medical teams. Pediatric oncology clinicians care for numerous patients at the end of life and can offer a breadth of insight regarding these difficult situations. Incorporating clinician experience can identify common pitfalls as well as successful strategies to inform and improve the delivery of patientcentered end of life care. Ultimately, understanding the intersection between patient, family, and provider values is critical to providing high quality end of life care for AYAs. This study provides a first step toward achieving this goal. Objective(s): This sub-analysis is part of a larger project that includes AYA patients, their parents, and bereaved parents. The objective of the present analysis was to identify factors that healthcare clinicians considered important at the end of life for AYA patients and their families. Design/Method: In this prospective qualitative cohort study, semi-structured interviews were conducted with n = 19 (74% female) oncology medical staff at a large academic pediatric hospital. Staff members included physicians (n = 7), advanced practice providers (n = 6), and other multidisciplinary providers including physical therapists, music/art therapists, and chaplains (n = 5). Interviews were audiorecorded verbatim, de-identified, and transcribed. Two primary coders conducted content analyses to identify relevant themes related to quality end of life care. Coding was reconciled iteratively with each transcript to informsubsequent thematic development and ensure saturation. Data were analyzed using ATLAS.ti software. Result(s): Twenty-seven major themes and 66 sub-themes emerged from provider interviews. Major themes included 'Acceptance,' 'Communication,' 'Meeting Families Where They Are,' and 'Protection.' Providers identified early and transparent communication within families, parental acceptance, and AYA/families maintaining a sense of control as features of a 'good death.' Lack of open communication, an unexpected/sudden death, and family denial or avoidance correlated with providers' experiences of a 'bad death.' Conclusion(s): Healthcare clinicians agree that compassionate and transparent communication are common denominators in good end of life care for AYAs with cancer. These insights may help clinicians caring for patients during a very difficult period of the cancer care trajectory. Future analysis of patient and parent interviews will guide recommendations for the practice of end of life care that is most aligned with patient/family values.

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).

Citation List Month

Oncology 2019 List

Collection

Citation

Taylor M; Barton K; Rosenberg A, “The 'good death' in pediatric oncology,” Pediatric Palliative Care Library, accessed August 2, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16977.

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