Initiating Palliative Care Referrals in Pediatric Oncology.

CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult. OBJECTIVES: We sought to describe patient characteristics used by oncologists for PC referral and identify ways to improve PC integration into the care for children with cancer. METHODS: This mixed-methods study used semistructured audiotaped interviews to explore the patient or disease characteristics used by pediatric oncology providers to trigger PC referral. Conventional content analysis was applied to interview transcripts. RESULTS: About 77 participants with diverse experience were interviewed. More than 75% of participants reported that PC was consulted too late and cited communication and systems issues as the top barriers. Most participants (85%) stated that a screening tool would be helpful to standardize referral practices to PC. Characteristics such as poor prognosis (88%), symptom management (86%), comorbidities (65%), and psychosocial needs (65%) were commonly reported triggers that should initiate PC consultation. However, when presented with case scenarios that included these characteristics, participants did not consistently identify the PC triggers. Nearly 50% of participants stated they had received some formalized PC training; however, only one-third of these participants noted completing a PC rotation. CONCLUSION: Our findings suggest that pediatric oncologists are committed to improving the integration of PC for their patients and that standardization of referral practices, through the use of a screening tool, would be of benefit. Additional PC education might reinforce pediatric oncologists' recognition of PC triggers.

Medical Decision-Making in Foster Care: Considerations for the Care of Children With Medical Complexity.

OBJECTIVE: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC). METHODS: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts. RESULTS: Fifty-eight interviews were completed with 2-5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. CONCLUSIONS: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.

Defining the Boundaries of Palliative Care in Pediatric Oncology.

CONTEXT: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult. OBJECTIVES: We sought to describe oncologists' current understanding of PC and how primary PC is provided for children with cancer. METHODS: This mixed-methods study explored pediatric oncology providers' definitions of PC and self-reported PC practices through semistructured audiotaped interviews. Conventional content analysis was applied to interview transcripts. RESULTS: Seventy-seven participants with diverse training backgrounds (30 attending physicians, 21 nurses, 18 fellows, five nurse practitioners, and two child life specialists) completed an interview. Approximately 75% provided a modern definition of PC (e.g., not limited to end-of-life care); all participants acknowledged primary PC skills as part of their daily clinical activities. However, participants expressed wide variation in the comfort and time spent performing primary PC tasks (i.e., symptom management, addressing mental health and psychosocial needs) and over half reported that patients' PC needs are not adequately met. In addition, some reported confusion about the benefits of PC consultation, despite acknowledging that PC needs to be better integrated into the care of pediatric oncology patients. CONCLUSION: Our findings demonstrate that although most pediatric oncologists accept a modern definition of PC in theory, how to integrate PC into pediatric oncology practice is less understood. Formalized training and standardization of practice surrounding identification of PC needs in patients who may require secondary or tertiary PC services may help to overcome current barriers for PC integration in pediatric oncology.