It Starts With a Story: A Four-Step Narrative-Based Framework for Serious Illness Conversations.

Background: As a key component of advance care planning, serious illness conversations form a core intervention in palliative care. To achieve effective serious illness conversations, acknowledgment and inclusion of patient sense of self and identity are critical. However, no framework exists to describe how goals, values, and choices relate to patient identity. This conceptual gap hinders the advancement of palliative care education and practice. Objective: This philosophical investigation aimed to explicate two items: first, a novel conceptual framework for serious illness conversations; second, a structured approach to optimize these conversations within the palliative care clinical context. Methods: A philosophical and theoretical analysis was performed within an interdisciplinary context, by scholars in palliative care, medical humanities, philosophy, and bioethics. Key literature in psychology, qualitative research on the experience of serious illness, medical ethics, and choice architecture in medical decision-making were reviewed, and a structured conceptual and narrative analysis was performed. Results: An original and innovative identity-centered conceptual framework for serious illness conversations was developed. The framework consists of a four-step, reproducible approach: (1) attend to patient narrative identity, (2) identify values, (3) cocreate goals, and (4) actively promote choices. In short: attend, identify, create, and promote (AICP). Discussion: By using this conceptual framework and four-step approach, clinicians can accomplish goal-concordant serious illness care and build rich clinical relationships that foster trust and goodwill.

Lessons in Stories: Why Narrative Medicine Has a Role in Pediatric Palliative Care Training.

Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication skills, ethics, community building, and advocacy are also reviewed as domains that may be bolstered by training in narrative. Applications specific to pediatric palliative care are suggested, along with avenues for further research.

Can Parents Restrict Access to Their Adolescent's Voice?: Deciding About a Tracheostomy.

Parents are the default decision-makers for their infants and children. Their decisions should be based on the best interests of their children. Differing interpretations of children's best interests may be a source of conflict. Providers' biased evaluations of patients' quality of life may undermine medicine's trustworthiness. As children mature, they should participate in medical decision-making to the extent that is developmentally appropriate. In this month's Ethics Rounds, physicians, a philosopher, and a lawyer consider parents' demand, supported by the hospital's legal department, that their 17-year-old son be excluded from a potentially life-and-death medical decision.

Evaluation of rescue oral glucocorticoid therapy during inpatient cystic fibrosis exacerbations.

An acute pulmonary exacerbation (APE) in cystic fibrosis (CF) is characterized by increased pulmonary symptoms attributed to bacterial colonization, neutrophil recruitment, and inflammation. Antimicrobials, airway clearance, and nutrition are the mainstay of therapy. However, when patients fail to improve, corticosteroids have been added to therapy. We retrospectively examined the use of rescue steroids in a children's hospital from 2013 to 2017 during CF APE treatment following at least 1 week of inpatient therapy without expected clinical improvement. In total, 106 encounters of 53 unique patients, aged 6-20 years, who had FEV1 percent predicted (FEV1pp) data at baseline, admission, midpoint, and discharge, and had admission duration of at least 12 days were studied. Encounters treated with steroids had less improvement at midpoint percent change from admission in FEV1pp (4.9 ± 11.3) than nonsteroid group change in FEV1pp (20.1 ± 24.6; p < .001). Failure to improve as expected was the rationale for steroid use. At discharge, there was no difference in mean FEV1pp (p = .76). Delays in steroid therapy by waiting until the end of the second week increased the total length of stay (LOS). Propensity matching, comparing outcomes in patients without midpoint improvement in FEV1pp, was also evaluated. There was no difference in admission or discharge FEV1pp between groups. Equally, no difference in FEV1pp at follow-up visit or in time until the next APE was detected. Secondary analysis for associations including gender, genotype, fungal colonization, or inhaled antimicrobials was nonsignificant. These data suggest rescue use of corticosteroids during APE does not predictably impact important outcome measures during CF APE treatment.