The End-of-Life Experience in Pediatric Heart Transplant Recipients

Abstract

Methods: Retrospective review of all deaths occurring in pHtx patients between 3/14/2009-7/9/2015 at a single center. The causes, location, and level of support at the time of death were analyzed, as was the incidence of sudden cardiac arrest occurring out of hospital or in the emergency department (ED). Deaths that occurred prior to transplant hospitalization discharge were excluded. Results: Twenty-two patient deaths were analyzed. The median age of death was 12 (IQR 6,18) years. 18/22 (82%) died of cardiac causes, 3 (14%) died of infection, and 1 (5%) died of primary pulmonary disease. Of those who died of cardiac causes, 12 (67%) had no evidence of graft dysfunction or coronary vasculopathy at their most recent assessments, which occurred a median of 54 (IQR 24, 119) days before death. Fifteen (68%) of patients died in an ICU, 17 (77%) were intubated, and 8 (36%) died on mechanical support (VAD or ECMO). 11/22 (50%) patients suffered sudden cardiac arrest at home or in the ED prior to hospital admission. Conclusion: Most deaths following pHtx occur in the ICU while receiving advanced life-sustaining therapies. This may be due in part to the rapid evolution of life-threatening cardiac complications that manifest despite little evidence of preceding cardiac disease and often result in sudden death or outof-hospital/ED resuscitations. As a result, families may be left unprepared for end-of-life decision-making. These findings suggest the need for advanced care directives and ongoing discussions regarding resuscitative wishes for all pHtx patients, even in the absence of graft dysfunction.

Circumstances surrounding end‐of‐life in pediatric patients pre‐ and post‐heart transplant: a report from the Pediatric Heart Transplant Society

“…Consistent with previous work, 11,12,15 findings also demonstrated high use of technological interventions at end‐of‐life. Use of these potentially life‐saving technological interventions near end‐of‐life may indeed be the preference of some patients and families.…”

“…Year of transplant was also associated with location of death, with considerably more out-of-hospital deaths occurring in those transplanted between the years of 2011-2019 (64%; p < .0001) compared with transplanted between 1993-2000 (7%) and 2001-2010 (29%). Consistent with previous work, 11,12,15 findings also demonstrated high use of technological interventions at end-of-life. Use of these potentially life-saving technological interventions near end-of-life may indeed be the preference of some patients and families.…”

“…Among multi-organ transplant clinicians, only ~20% reported that they often or very often discuss dying or advance care planning with adolescent solid organ transplant patients. 19 However, given findings from the current study, as well as a single-center experience underscoring the unexpectedness of death in pediatric post-transplant recipients, 12 clinicians are encouraged to systematically assess both patient and family preferences specific to end-of-life communication and preferences as part of routine pre-and post-transplant care. Research from pediatric oncology has demonstrated that more prognostic disclosure from clinicians, even when likelihood of cure from cancer was low, resulted in greater communicationbased hope in parents.…”

“…10 To date, much of what we know about circumstances surrounding death in pediatric advanced heart disease and heart transplantation is based on single-center experiences, which indicate high rates of hospital-based deaths with intubation frequently performed near end-of-life. 11,12 Building upon these initial studies, increased understanding of circumstances surrounding death, including location of death and interventions performed at end-of-life in a large, multisite sample, will enable the pediatric transplant community to move forward with guidelines and interventions to improve the quality of care patients and families receive at a child's end-of-life. Thus, in response to calls for increased research study, 13 Patients were stratified into two cohorts: 1) pre-transplant (waitlist) and 2) post-transplant.…”

Interdisciplinary Communication

“…5 In addition, for parents of chronically ill children, experience with, and understanding about, advance directives are very limited. [6][7][8] While ACP conversations are very personal and historically have been contained within the physician-patient relationship, the expansion of the number of care providers and care teams requires that the EHR be an integral tool for communicating about ACP and documentation of EOL preferences across care settings, especially for nurses who provide the majority of direct care. 9,10 In addition, because there are differences between physician and nurse perspectives on 1) timing and content of EOL discussions, 2) use of inappropriate interventions, 3) lack of informed consent, and 4) the degree of patient and family suffering have been reported in the literature, [11][12][13] transparent access to information is critical to the inclusion of all provider viewpoints in these difficult situations.…”