Publication
Everything But: A Case Series of Strategies to Care for the Pediatric Chronically, Critically Ill Patient and Family
Kinnear F, Jump J, Evans K · Journal of Pain and Symptom Management · 2024
Outcomes: 1. Use strategies to understand family's hopes, wishes and worries for their chronically and often critically ill child and what they perceive to be prolonging life versus prolonging death. 2. Utilize specific language to make recommendations to help align with families and progress their patient's care forward while respecting parental autonomy. Key Message: There is a growing population of pediatric patients that live at home with significant medical support that was previously only provided in ICUs. Palliative care can be instrumental in eliciting goals of care, streamlining communication between inpatient and outpatient sub specialists and supporting staff in respecting parental goals and limitations of care as patients near end of life. There has been an increase in pediatric patients that are chronically, critically ill. These patients receive high level care from parents, guardians and nurses including advanced airways, airway clearance, ventilator support, tube feedings and complex medication regimens. This is care that often requires admission to higher level of care units. Due to the intensive care provided in these units, it can be challenging to streamline communication amongst inpatient providers while also providing care the parent or guardian feels is best for their child. Parents may be labeled as challenging or in denial but often are struggling to agree on a path forward with their current providers. Strategies such as parallel planning- hoping for the best and preparing for everything else, shared decision making, setting limits of care when not in crisis, multidisciplinary rounds and family meetings are some of the ways to meet families where they are and progress their child's care forward. Admittedly, it takes time to build this trust and we will discuss some strategies for aligning with the family and overcoming barriers such as when the provider team(s) doesn't agree, or the patient has a significant change from baseline making prior goals unachievable. We plan to illustrate these strategies through three case studies that highlight alignment is not agreement; asking parents what works for their child; and making recommendations for time limited trials of interventions before revisiting sensitive topics like tracheostomy. We will discuss improved communication about family goals as a way to decrease moral distress of staff caring for these patients over multiple admissions as they get sicker and are admitted more frequently. Lastly, we'd like to demonstrate ways to respect the family wishes at end of life including location of death, optimal symptom control and parental desires to be present or not. Keywords: Communication / Interdisciplinary Teamwork / ProfessionalismCopyright © 2024
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.