Yesterday a Child, Today a Grown-Up: Reflections on the Patient, Family, and Team Experience of an Abrupt, Non-Linear Transition from Pediatric to Adult Medicine for Young Adults with Serious Illness (FR210A)

Yesterday a Child, Today a Grown-Up: Reflections on the Patient, Family, and Team Experience of an Abrupt, Non-Linear Transition from Pediatric to Adult Medicine for Young Adults with Serious Illness (FR210A)

Zehm A; Jonas DF; Brook I; Smith DS

Journal of Pain and Symptom Management

2023

Child; Only Child

Outcomes: 1. Reflect on the experience of young adults and families facing serious illness as they transition from pediatric to adult medicine, including the impact on medical decision making and end-of-life care 2. Describe challenges and strategies for providers and teams navigating this transition from both the pediatric and adult medicine perspective For young adults living with serious illnesses, the transition from pediatrics to adult medical care can be challenging and traumatic, especially if this transition occurs alongside disease progression and complex decision making. Two pediatric palliative clinicians will share their experience preparing patients and families for this transition. For these clinicians, preparing patients is nuanced and complex, as family-centered care is a core tenet of pediatric medicine. Clinicians must establish rapport and trust-building during conversations regarding future planning and adjustment. Fostering independence in a patient whose physical function or coping are regressing can be challenging, and the adolescent's perceived and legal level of autonomy can be conflicting. An adult palliative care clinician will share her experience supporting patients and families in this transition. Adult clinicians often feel unprepared to care for patients and families who are accustomed to pediatric care norms. Assuming this role often requires a paradigm shift and different approaches to communication, family dynamics, and shared decision-making. Additional challenges include lack of familiarity with traditionally “pediatric” illnesses, recognition of discordance between a patient's emotional and chronological maturity level, and navigation of intricacies around information-sharing. For patients and families, this transition can feel abrupt, arbitrary, and traumatic, as patients leave longitudinal providers and meet new teams. One parent will share her family's experience of transitioning to the adult setting amid cystic fibrosis disease progression. She will reflect on difficult decisions faced regarding lung transplantation possibilities, family relocation, long-term management of a multi-drug resistant bacterium, and, ultimately, end-of-life care and information sharing. She will highlight her daughter's increased physical and emotional vulnerability and corresponding need for increased familial involvement and support during this challenging time, particularly around medical decision making. Panel and audience participants will have an opportunity to integrate discussed themes into best practice.

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April List 2023