Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study.

BACKGROUND: The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been described, little is known about pediatric cardiothoracic surgeon attitudes toward palliative care in children with advanced heart disease. OBJECTIVE: To describe perspectives of pediatric cardiothoracic surgeons regarding palliative care in pediatric heart disease. DESIGN: Cross-sectional web-based national survey. RESULTS: Of the 220 surgeons who were e-mailed the survey, 36 opened the survey and 5 did not meet inclusion criteria (n = 31). Median years of practice was 23.5 (range: 12-41 years), and 87.1% were male. Almost all (90%) reported that they had experience consulting palliative care. While 68% felt palliative care consultation was initiated at the appropriate time, 29% felt it occurred too late. When asked the appropriate timing for palliative care consultation in hypoplastic left heart syndrome, 45% selected "at time of prenatal diagnosis" and 30% selected "when surgical and transcatheter options have been exhausted." Common barriers to palliative care involvement included the perception of "giving up" (40%) and concern for undermining parental hope (36%). CONCLUSIONS: While a majority of pediatric cardiothoracic surgeons are familiar with palliative care, there is variation in perception of appropriate timing of consultation. Significant barriers to consultation still exist, including concern that parents will think they are "giving" up, undermining parental hope, and influence of palliative care on the medical care team's approach.

Use of Post-Acute Facility Care in Children Hospitalized With Acute Respiratory Illness.

BACKGROUND: Recovery from respiratory illness (RI), a common reason for hospitalization, can be protracted for some children because of high illness severity or underlying medical complexity. OBJECTIVE: We assessed which children hospitalized with RI are the most likely to use post-acute facility care (PAC) for recovery. METHODS: Retrospective analysis of 609,800 hospitalizations for patients in 43 US children's hospitals between 2010- 2015 for RI, identified with the Agency for Healthcare Research and Quality Clinical Classification System. Discharge to PAC was identified using Centers for Medicare & Medicaid Services Discharge Status Codes. We compared patient characteristics by PAC use with generalized estimating equations. RESULTS: There were 2660 (0.4%) RI hospitalizations resulting in PAC transfer (n = 2660, 0.4%). Discharges to PAC had greater percentages of technology assistance (83.2% vs 15.1%), neuromuscular chronic condition (57.5% vs 8.9%), and mechanical ventilation (52.7% vs 9.1%), 𝑃 < 0.001 for all. The highest likelihood of PAC use occurred with ≥11 vs no chronic conditions (odds ratio [OR] 11.7 [95% CI, 8.0- 17.2]), ≥9 vs no therapeutic medication classes (OR 4.8 [95% CI, 1.8-13.0]), and existing tracheostomy (OR 3.0, 95% confidence interval [CI], 2.6-3.5). Median (interquartile range [IQR]) acute-care length of stay (LOS) for children most likely to use PAC was 19 (8-56) days; LOS remained long (median 13 [6-41] days) for children with the same attributes (n = 9448) not transferred to PAC. CONCLUSIONS: Children with RI who are most likely to use PAC have a high prevalence of multiple chronic conditions, multiple medications, and medical technology. Future investigations should assess the supply of PAC against the demand of hospitalized children with RI who might need it.

The Role of Pediatric Palliative Care in Complex Congenital Heart Disease: Three Illustrative Cases.

BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population. OBJECTIVE: This case description reviews the role of PPC teams in the care of patients with complex CHD. DESIGN: Case study and analysis of three pediatric patients with complex CHD who also received PPC services. CONCLUSIONS: Involvement of PPC teams in patients with complex CHD can be beneficial for both families and caregivers. PPC teams can aid with advance care planning, goal setting, medical decision making, and bereavement support. Further research is needed to better quantify the benefits of PPC teams' involvement in this population.