Palliative Care in Children With Advanced Heart Disease in a Tertiary Care Environment: A Mini Review

Abstract

Palliative care for children continues to evolve. More recently, this has also been true in the field of pediatric cardiology, particularly for children with advanced heart disease. In these children, similarly to children with cancer, treatment successes are offset by the risks of long-term morbidities, including premature death. This mini review aims to provide an overview of current knowledge on children suffering from advanced heart disease, their medical care during various phases of illness (including the palliative and end-of-life phase), symptom burden, experiences of parents, prognostic understanding of parents and physicians, and current status of the involvement of pediatric palliative care. In conclusion, the suffering of these children at the end of their young lives is pronounced and many parents feel prepared neither for medical problems nor for the child’s death. An effective and mutually trusting partnership between pediatric cardiology and pediatric palliative care would appear to be a prerequisite for the timely involvement of palliative care in further supporting these children and their families.

Impact of Subspecialty Pediatric Palliative Care on Children with Heart Disease; A Systematic Review and Meta-analysis

“…AHD is a leading cause of disease-related death in US children, and issues around EOL for these patients deserve attention [47]. Despite identifying eleven review articles specifically discussing the role of palliative care in the pediatric cardiac population emphasizing this as a key emerging area and the benefits described, overall SPPC referral rates were low [5,[10][11][12][13][14][21][22][23][24][25]. Though SPPC involvement has been increasing in children with AHD [37], referral rates have historically been low compared to other pediatric complex conditions [18,45].…”

“…Of 54 articles excluded at full-text, 17 were non-empiric review articles. Of these, eleven specifically discussed the role of SPPC in cardiac patients [5,[10][11][12][13][14][21][22][23][24][25].…”

“…Limited empiric data characterize impacts of SPPC in pediatric heart disease, despite it being widely identified as a key area of further research [5,[10][11][12][13][14][21][22][23][24][25]. We sought to describe the published literature assessing the influence of SPPC on the various aspects of care for children with AHD such as advanced care planning and location of death.…”

Utilization of a Prenatal Palliative Care Consultation Pathway for Congenital Heart Disease

“…1 Prenatal access to palliative care will ensure a more comprehensive approach to the patient's physical, emotional, and psychosocial well-being and offer enhanced support for their families. 2 Failure to incorporate the palliative care team into prenatal visits of parents carrying a baby with complex CHD contributes to the misperception that the PPC team's support and services are reserved for end of life and only those with poor prognosis. Therefore, a standardized workflow for a prenatal consultation pathway between the cardiologists, nurse practitioners, and nurse coordinators of the fetal cardiology medical team and the PPC is necessary to increase access to appropriate palliative care consultation.…”

“…However, statistics show that those born with complex CHD continue to have a 1-year mortality rate of 24.8% 1 . Prenatal access to palliative care will ensure a more comprehensive approach to the patient's physical, emotional, and psychosocial well-being and offer enhanced support for their families 2 . Failure to incorporate the palliative care team into prenatal visits of parents carrying a baby with complex CHD contributes to the misperception that the PPC team's support and services are reserved for end of life and only those with poor prognosis.…”