Goals of Care Among Parents of Children Receiving Palliative Care

Feudtner, Chris; Beight, Leah; Boyden, Jackelyn Y.; Hill, Douglas L.; Hinds, Pamela S.; Johnston, Emily E.; Friebert, Sarah; Bogetz, Jori F.; Kang, Tammy I.; Hall, Matthew; Nye, Russell T; Wolfe, Joanne

doi:10.1001/jamapediatrics.2023.1602

Cited by 10 publications

(1 citation statement)

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“…Early PPC referral and involvement can facilitate timely discussions about patients' and parents' values and goals of care underlying the treatment decisions. Longitudinal PPC involvement ensures goals of care discussions are revisited, as goals may change over time [19]. Healthcare teams experiencing moral distress may find support in having discussions about patient-and-family preferences, debriefs on what factors contributed to their feelings of distress, and even identifying systemic injustices that had an impact on the outcome [20].…”

Section: Pediatric Palliative Care As An Aid For Communicationmentioning

confidence: 99%

Moral Distress and Pediatric Palliative Care

Jeong,

Knackstedt,

Linebarger

et al. 2024

Children

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Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional association’s) moral stance. In pediatric healthcare settings, managing and mitigating feelings of moral distress can be particularly difficult to navigate through because of the intricate dynamics between the pediatric patient, parent and/or legal guardians, and clinicians. The proactive integration of an experienced pediatric palliative care (PPC) team can be an appropriate step toward reducing clinicians feeling overwhelmed by various case-specific and team management issues that contribute to the development of moral distress among healthcare professionals. Based on our experiences in a free-standing, quaternary pediatric hospital, the involvement of PPC can help reframe the approach to challenging situations, enhance communication, and provide guidance to the care team, patients, and families. Moreover, PPC teams can benefit other multidisciplinary team members through education on respecting the plurality of values of diverse families and patients and consideration of ethical implications during morally challenging situations.

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Section: Pediatric Palliative Care As An Aid For Communicationmentioning

confidence: 99%

Moral Distress and Pediatric Palliative Care

Jeong,

Knackstedt,

Linebarger

et al. 2024

Children

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Goals of Surgical Interventions in Youths Receiving Palliative Care

Ellis,

Chen,

Gordon Wexler

et al. 2024

JAMA Netw Open

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ImportanceMost youths receiving palliative care undergo many surgical interventions over their lifetimes. The intended purposes of interventions in the context of goals of care are not commonly articulated.ObjectiveTo describe the goals and purposes of surgical intervention in youths receiving palliative care and propose a framework discussing intervention using goal-oriented language.Design, Setting, and ParticipantsThis retrospective cohort analysis was conducted among a subset of patients enrolled between April 2017 and March 2021 in a prospective multicenter cohort study of youths receiving palliative care (the Pediatric Palliative Care Research Network’s Shared Data and Research [SHARE] Study). Patients younger than 30 years receiving palliative care services were eligible for inclusion in SHARE, and all enrolled at Boston Children’s Hospital/Dana Farber Cancer Institute, a SHARE site, were included in this study. Goals and purposes of all surgical interventions from the time of diagnosis through the present were abstracted from patient records. A goal and purpose framework was generated using a hybrid deductive-inductive approach based on established goals-of-care frameworks and the clinical context of surgical interventions. Data were analyzed in September 2023.Main Outcomes and MeasuresPrimary outcomes included goals and purposes of surgical interventions performed in the study population.ResultsAmong 197 youths receiving palliative care (mean [SD] age at palliative care start, 8.01 [7.53] years; 108 male [54.8%]; 6 Asian [3.0%], 12 Black [6.1%], 129 White [65.5%], and 16 with &gt;1 race [8.1%]; 27 Hispanic [13.7%] and 142 not Hispanic [72.1%]), almost all individuals (189 youths [95.9%]) underwent at least 1 surgical intervention (mean [SD] 17.5 [16.3] interventions; median [IQR] 13 [5-22] interventions). Of 3331 surgical interventions, there were 878 interventions (26.5%) conducted with the goal of life extension, 1229 interventions (37.1%) conducted for life enhancement, and 79 interventions (2.4%) conducted for both goals; the remaining 1130 interventions (34.1%) held neither goal. Most interventions were performed with the purpose of diagnosis (1092 interventions [32.9%]) or cure and repair (1055 interventions [31.8%]), with fewer performed for the purpose of placing or maintaining assistive technology (696 interventions [21.0%]) or for supportive (434 interventions [13.1%]) or temporizing (39 interventions [1.2%]) purposes. Patients with cardiovascular disease and cancers constituted approximately half (592 patients [56.1%]) of those undergoing curative or repair interventions, whereas youths with neurologic or genetic conditions constituted approximately half (244 patients [56.2%]) of those undergoing supportive interventions.Conclusions and RelevanceIn this cohort study, nearly all youths underwent surgical intervention, and the purposes of intervention differed by serious illness type. These findings suggest that conversations centered on a proposed framework concerning goals and purposes of surgical intervention may facilitate goal-concordant, high-quality care for youths with serious illness.

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Including Goals of Care in Treatment Decisions—Meeting Them Where They Are Involves Moving

Linebarger

2023

JAMA Pediatr

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Goals of Care Among Parents of Children Receiving Palliative Care

Cited by 10 publications

References 50 publications

Moral Distress and Pediatric Palliative Care

Moral Distress and Pediatric Palliative Care

Goals of Surgical Interventions in Youths Receiving Palliative Care

Including Goals of Care in Treatment Decisions—Meeting Them Where They Are Involves Moving

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