Abstract
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (≤10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with ≤10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education.
Highlights
Empirical descriptions of a “good death” exist for older adults, and these have served as the foundation for providing high-quality end of life (EOL) and palliative care for these patients [1,2,3].Medical institutions such as the World Health Organization, Institutes of Medicine and the AmericanChildren 2020, 7, 86; doi:10.3390/children7080086 www.mdpi.com/journal/childrenSociety of Clinical Oncology recommend the integration of evidence-based palliative care practices into standard clinical care for patients [4,5,6]
healthcare providers (HCPs) known to be involved in the care of patients with cancer who had died, and additional participants were recruited through peer referral
The study was presented to participants as an effort to understand HCP perspectives on what is important for AYA patients and families at the end of life
Summary
Empirical descriptions of a “good death” exist for older adults, and these have served as the foundation for providing high-quality end of life (EOL) and palliative care for these patients [1,2,3].Medical institutions such as the World Health Organization, Institutes of Medicine and the AmericanChildren 2020, 7, 86; doi:10.3390/children7080086 www.mdpi.com/journal/childrenSociety of Clinical Oncology recommend the integration of evidence-based palliative care practices into standard clinical care for patients [4,5,6]. Empirical descriptions of a “good death” exist for older adults, and these have served as the foundation for providing high-quality end of life (EOL) and palliative care for these patients [1,2,3] Medical institutions such as the World Health Organization, Institutes of Medicine and the American. Less is known about what, if anything, constitutes a “good” death from the perspective of children and adolescents and young adults (AYAs), their caregivers, or their medical teams [8,9,10,11,12,13] This gap is due, in part, to the inherent challenges of conducting rigorous research in this field, including smaller sample sizes, complexities of proxy reporting, and ethical concerns about studying this vulnerable population [14]
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