Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service.

BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. OBJECTIVES: (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. RESULTS: Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. CONCLUSION: 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.

Partnering With Patients and Caregivers in Cancer Care: Lessons From Experiences With Transgender, Hispanic, and Pediatric Populations.

A cancer diagnosis thrusts patients and caregivers into a foreign world of health care with systems, protocols, and norms that can leave little room for individual needs and circumstances. Quality and efficacious oncology care requires clinicians to partner with patients and caregivers to understand and incorporate their needs, values, and priorities into information sharing, decision making, and care provision. This partnership is necessary for effective patient- and family-centered care and access to individualized and equitable information, treatment, and research participation. Partnering with patients and families also requires oncology clinicians to see that our personal values, preconceived ideas, and established systems exclude certain populations and potentially lead to poorer care for all patients. Furthermore, inequitable access to participation in research and clinical trials can contribute to an unequal burden of cancer morbidity and mortality. Leveraging the expertise of the authorship team with transgender, Hispanic, and pediatric populations, this chapter provides insights and suggestions for oncology care that are applicable across patient populations to mitigate stigma and discrimination and improve the quality of care for all patients.

Epidermolysis Bullosa in Pediatric Palliative Care: A Case Series.

Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. Aim: The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB. Methods: We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families. Results: Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family.

Improving paediatric advance care planning: Results of a learning needs analysis and simulation-based education programme.

AIM: To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of simulation-based education for this topic. METHODS: An electronic learning-needs survey was distributed to medical, nursing and allied health clinicians from departments who provide primary care for children with life-limiting conditions. Results were incorporated into the design of a simulation-based education session which was piloted with the Royal Children's Hospital Oncology Department. RESULTS: A total of 157 learning-needs surveys were included in analysis, and included quantitative and qualitative responses from nursing, allied health, senior and junior medical staff from intensive care, general and subspecialty medical teams. Most (75.0%) participants had participated in ACP discussions previously. Only 40.1% of participants felt confident to assess appropriate timing of, and 45.2% felt adequately prepared to participate in ACP discussions. Barriers identified were both clinician and patient/parent related, including clinicians not knowing when to address issues (43.9%) or what to say (21.0%). Participants indicated that ACP discussions are most frequently initiated when death is clearly imminent. Following a pilot of simulation-based education with the oncology department, 90% of participants expressed confidence to participate in ACP discussions. CONCLUSIONS: Barriers to paediatric ACP, including lack of clinician training, continue to contribute to delayed conversations. Simulation-based education is a valuable and feasible educational tool that can increase clinicians' understanding and confidence in this area.

The use, appropriateness and outcomes of outpatient parenteral antimicrobial therapy.

OBJECTIVE: Outpatient parenteral antimicrobial therapy (OPAT) is increasingly used to treat children at home, but studies in children are scarce. We aimed to describe the use, appropriateness and outcomes of OPAT in children. DESIGN: This was a 12-month prospective observational study. SETTING: The hospital-in-the-home programme of The Royal Children's Hospital Melbourne. PATIENTS: All patients receiving OPAT. INTERVENTIONS: Data were collected including demographics, diagnosis, type of venous access and antibiotic choice. MAIN OUTCOME MEASURES: Length of stay, adverse events, readmission rate and appropriateness of antibiotic use. RESULTS: 228 patients received OPAT in 251 episodes. The median age was 7.4 years (range 1 week to 21 years), with 22 patients (10%) under 1 year. The most frequent diagnoses were exacerbation of cystic fibrosis (17%), urinary tract infection (12%) and cellulitis (9%). Most patients were transferred from the ward, but 18% were transferred directly from the emergency department, the majority with skin and soft-tissue infection (66%). Venous access was most commonly peripherally inserted central catheter (29%) and peripheral cannula (29%). 309 parenteral antibiotics were prescribed, most frequently ceftriaxone (28%) and gentamicin (19%). The majority of antibiotics (72%) were prescribed appropriately. However, 6% were deemed an inappropriate choice for the indication and 26% had inappropriate dose or duration. The incidence of central line-associated bloodstream infections was 0.9%. The unplanned readmission rate was 4%, with low rates of OPAT-related adverse events. Three children (1%) had an inadequate clinical response. CONCLUSIONS: OPAT is a safe and effective way of providing antibiotics to children. Despite high rates of appropriate antibiotic use, improvements can still be made.