Patterns of Care at End of Life in Children With Advanced Heart Disease

The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease

“…While mortality continues to fall for many forms of CHD, those children that do not survive tend to die with highly technical medical support at the end of life, frequently undergoing cardiopulmonary resuscitation within 24 h of their death 6 7. Early access to palliative care for patients with CHD could encourage a more comprehensive approach to physical and emotional well-being—from the point of diagnosis in some cases—with the potential to improve the patient and family's experiences, promote better decision-making and ultimately enhance quality of life for all of those affected.…”

“…Mortality from CHD continues to fall, following advances in surgical and interventional procedures for children with CHD, high-technology life-support strategies and the advances in the field of cardiac transplantation; however, CHD remains one of the leading causes of non-accidental death in childhood 6. Indeed, the majority of children who die from advanced cardiac disease die young with multiorgan failure while undergoing invasive support in an intensive care setting 6 7. Thus, clinicians, families and children are facing evermore complex decisions, not just in terms of delivering appropriate and timely treatments, but also in discussions regarding the end of life.…”

Physician and Parent Perceptions of Prognosis and End-of-Life Experience in Children with Advanced Heart Disease

“…2 According to their parents, many children with AHD experience suffering in the EOL care period. 4 Additionally, for most, realization that their child has no realistic chance of survival does not occur until death is imminent.…”

“…1 Most children who die from advanced heart disease (AHD) die before a year of age with multiorgan system failure in an intensive care unit setting. 2 To date, most research related to pediatric AHD has focused on improvement of medical technologies aimed at prolonging survival; less is known about how parents and physicians perceive the end-of-life (EOL) care experience of children with AHD.…”

Patient-centered medical home for patients with complex congenital heart disease

“…As these children age, the resultant healthcare use and costs is increasing [21], including increased hospitalizations and hospital length of stay [15,22] outpatient subspecialty and supportive care, cardiac transplantation, advanced therapies for heart failure and end of life care for CHD patients [23].…”