# End-stage care for children after heart transplant

## TL;DR

This paper reviews the challenges of caring for children who experience chronic heart issues years after a successful heart transplant.

## Contribution

The paper highlights the lack of resources for end-stage care in long-term pediatric heart transplant recipients.

## Key findings

- There is a void of information for providers and families when end-stage disease recurs in long-term transplant recipients.
- Transplant providers need education in palliative care and medical ethics to improve shared decision making.
- Chronic cardiac dysfunction can occur years after a successful heart transplant in children.

## Abstract

Heart transplant is performed annually in over 600 children worldwide to treat life-limiting cardiac disease. Conversations regarding waitlist mortality, post-transplant morbidity and mortality, and goals of care are commonplace pre-transplant. However, there is a void of information and resources for providers and families when end-stage disease recurs in the long-term transplant recipient. The purpose of this review is to discuss the care of the pediatric heart transplant recipient with chronic cardiac dysfunction occurring years after a successful transplant. This includes a need for transplant providers to have education and training related both to palliative care and medical ethics to improve shared decision making with patients and families.