Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor
article
Context: Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns. Objectives: To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation. Methods: We conducted semistructured qualitative interviews with pediatric oncology providers at a large children's hospital. Interviews were audio-recorded, transcribed, and analyzed by two coders using a modified grounded theory approach. Results: We interviewed 16 providers (10 physicians, one nurse practitioner, two social workers, two psychologists, and one child life specialist). Three core perceptions emerged: 1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; 2) providers held favorable opinions about the PPCS owing to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and 3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation. Conclusion: The pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers.
Szymczak JE; Schall T; Hill DL; Walter JK; Parikh S; DiDomenico C; Feudtner C
Journal of Pain and Symptom Management.
2018
<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.01.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.01.019</a>
Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision-makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making.
Feudtner C; Schall T; Hill D
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2018-0516C" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0516C</a>
If I could just chime in here': ”: Communication Patterns of Interprofessional Teams in the Pediatric Cardiac Intensive Care Unit
Purpose: To describe the communication of interdisciplinary teams in a pediatric cardiac intensive care unit (CICU) when developing care plans and preparing for family meetings because little is known about how interdisciplinary teams communicate with each other about care plan development in the CICU. Methods: Audio recordings were made of weekly CICU team meetings including representatives from all interdisciplinary care providers prior to meeting with a patient’s family. Quantitative case coding described percentage …
Walter J; Schall T; DeWitt A; Arnold R; Feudtner C
Pediatrics
2018
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<a href="http://doi.org/10.1542/peds.142.1_MeetingAbstract.638" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.638</a>