End‐of‐life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions

Abstract

Aim In complex congenital heart diseases (CHD), patients may remain affected by significant morbidity and mortality after surgery. We analysed the end‐of‐life (EoL) care in children with severe CHD who died in our institution and investigated perspectives of parents and health‐care professionals (HCPs). Methods Medical records of all children (age < 18 years old) affected by a severe CHD who died in a tertiary cardiac care centre were reviewed. Subsequently, a cross‐sectional questionnaire‐based study of parents and HCPs of children involved in the study was designed. Results In total, 30 children died (median age: 45 days; range: 15 days to 3.4 years). Of them, 97% (31/32) died in an intensive care unit setting and were intubated and sedated at EoL. A total of 77% (23/30) died without parents being present at bedside. Eighteen families and 10 HCPs were interviewed. For 61% of the parents (11/18) and 70% of the clinicians (7/10), the goal of therapy at the EoL was ‘to lessen your child's suffering as much as possible’. Overall, 44% of parents (8/18) and 50% of HCPs recognised that their child had no chance of survival ‘a few days before the child died’. Conclusions We believe that these data suggest an unconscious reluctance to change goals of care in EoL, shifting from intensive care to comfort and quality of life.

A Road less traveled by: End‐of‐life care in the pediatric heart transplant journey

“…In fact, what we do know from the literature reveals that we have been paying so little heed that most parents/caregivers of children with advanced heart disease are utterly unaware that death is a possible or even a likely option within days of the death actually occurring. [2][3][4] What this report by Cousino et al highlights so clearly are opportunities for improvement. As counsellors and care providers of children with advanced heart disease where risk of death looms largest at listing for transplant, why is it that so little is known about outcomes beyond accomplishing the singular goal of completed transplant (or not)?…”

“…This report demonstrates that we have, to date, spent little time understanding this aspect of pediatric heart transplant care. In fact, what we do know from the literature reveals that we have been paying so little heed that most parents/caregivers of children with advanced heart disease are utterly unaware that death is a possible or even a likely option within days of the death actually occurring 2‐4 …”

“…Certainly, there are data to suggest an overall reluctance of pediatric cardiology providers to discuss life‐limiting cardiac disease in general 5 . In my experience, most pediatric heart transplant providers suggest they have not had these conversations because the family “was not ready.” However, the contrasting evidence from families suggests they want to know more than they are told, 6 that adolescents with congenital heart disease want to discuss all aspects of their life‐threatening illness, 7 and the high percentage of patients dying with highly interventional therapy 1‐3 suggests that patients and families need to have these conversations. Which begs the question, is it the families who are not ready, or the cardiologists themselves?…”

Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit

“… 13 , 21 This implies both staff and parents and guardians perceive burdens of intensive interventions yet tolerate them when death is the alternative. 5 These findings raise the question as to whether this high-risk, high-reward strategy may be negatively reflected upon after death for both staff and parents and guardians. 2 , 3 , 15 , 20 Perceptions of higher quality of death following discontinuation of life-sustaining therapy compared with limitations of therapy may be attributable to greater certainty and control over the timing when death is imminent.…”

What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review

“…The healthcare provider is integral to how the family experiences healthcare. Exploring healthcare provider experiences of diagnosing and managing CCHD infants could give insight into how values and perceptions may differ from patients during the decision-making process [25][26][27][28][29]. As the number of studies investigating the family experience of CCHD children increases, it would be expected that the physician stance and response increasingly would cater to the needs and lived experiences of families of CCHD infants.…”