Communication about prognosis and end‐of‐life in pediatric organ failure and transplantation

Abstract

Background Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end‐of‐life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end‐of‐life care topics among providers caring for pediatric organ failure and transplant populations. Methods This cross‐sectional study included 144 healthcare providers actively caring for children, adolescents, and young adults with organ failure or solid organ transplant history. Participants completed an electronic survey measuring frequency and comfort in discussing the following topics with patients and parents: prognosis/survival statistics, re‐transplantation, advance care planning (ACP), and death/dying. Descriptive statistics, two‐sample t tests, and analysis of variance were used. Results Fewer than half of respondents regularly discuss prognosis/survival statistics and potential need for re‐transplantation with their pediatric and young adult patients. Less than 20% of providers engage their pediatric patients in ACP discussions, and approximately 30% facilitate such discussions with young adult patients. Pediatric organ failure and transplant providers endorse a number of barriers specific to discussing these topics. Conclusion Pediatric organ failure and transplant providers do not regularly discuss prognosis or end‐of‐life care topics with this patient population. Communication‐focused intervention research is needed to improve honest and compassionate discussion of these topics that is aligned with both patients’ and parents’ needs and preferences.

State of the Science of Palliative Care in Solid Organ Transplantation

“…However, because 70% of the included patients were posttransplant, this article was categorized into studies focused on posttransplant patients, meaning overall four articles [10][11][12][13] were categorized as being posttransplant focused. Four articles [14][15][16][17] described provider perspectives on palliative care in solid organ transplant. Eleven articles [18][19][20][21][22][23][24][25][26][27][28] described patient experiences exclusively pretransplant.…”

“…Nine articles 11,12,15,16,22,24,25,27,28 described lung transplantation, five articles 13,14,19,21,23 described liver transplantation, two articles 10,18 described heart transplantation, and one article 26 described kidney transplantation. The remaining three articles 17,20,29 focused on solid organ transplantation in general.…”

“…The included articles were published between 2002 and 2019 and originated primarily from the United States (n ¼ 14). 10,11,[13][14][15][18][19][20][21][22][23][24][25][26] Four studies 12,[27][28][29] were conducted in Canada, and two articles 16,17 reported a survey of lung transplant providers in multiple countries. Table 1 summarizes the included articles.…”

“…Four articles [14][15][16][17] described provider perceptions of palliative care. Two articles, one describing lung transplant providers' perceptions 16 and one describing liver transplant providers' perceptions, 14 examined experiences pretransplant, and the other 2 described the provider perceptions of palliative care for lung transplant recipients 15 and for pediatric patients pre and posttransplant.…”

“…Two articles, one describing lung transplant providers' perceptions 16 and one describing liver transplant providers' perceptions, 14 examined experiences pretransplant, and the other 2 described the provider perceptions of palliative care for lung transplant recipients 15 and for pediatric patients pre and posttransplant. 17 Overall, providers identified many barriers to palliative care implementation, both pre and posttransplant. The most commonly reported barrier was the misconception, by patients and providers, that palliative care is end-of-life care and that palliative care contradicts the goals of solid organ transplant.…”