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"I didn't know this could happen:" Discussing Difficult News with Pediatric Transplant Patients

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Melissa K. Cousino, PhD
Univeristy of Michigan Transplant Center
Ann Arbor, MI, USA

Just days before she died, an adolescent lung transplant recipient who experienced a brain hemorrhage a few months post-transplant, wrote six words to me, "I didn't know this could happen." Prior to transplant, the risks and benefits, including potential for death, were reviewed in detail with her parents. Her family lovingly asked that the team remain positive and optimistic in her presence. During a time of relatively good health, she herself stated that she was comfortable with any decisions her parents made for her. She preferred that her parents be given the detailed information about her medical course and treatment. However, post-transplant, in the midst of a tumultuous recovery course, including an inability to speak due to a tracheostomy, she began to withdraw and show increased signs of anxiety and distress. Her family and medical team remained optimistic in her presence. They worried that speaking of death and dying now would only make her more worried and depressed. She died without having engaged in conversations about prognosis, advance care planning, and her end-of-life wishes.

Survival rates for children and adolescents with end-stage organ diseases have increased over the past decade [1,2]. Despite these notable improvements, life-threatening complications and mortality still occur in pediatric transplant recipients. For example, 1 in 10 pediatric heart transplant recipients will die within one year of transplantation. With a median survival of 14 [3]. years, a subset of heart transplant recipients transplanted in childhood will require re-transplantation before they even reach their 18th birthday. Unfortunately, re-transplantation is associated with even greater risk of mortality [3]. In addition, pediatric patients with organ failure are also likely to receive invasive interventions at the end of life. For example, the majority of children with advanced heart diseases (i.e., non-transplant specific) die in intensive care settings. Approximately 50% of them receive highly technical interventions, such as extracorporeal membrane oxygenation, near time of death. An even greater number (86%) receive mechanical ventilation within their last day of life [4]. Despite similar survival rates to other high-risk pediatric illness populations, the end-of-life care needs of children and families with end-stage organ disease and/or solid organ transplant history are poorly understood [5]. As we care for our pediatric and young adult transplant population, increased understanding of their preferences, values, and needs is imperative. The 2014 Institute of Medicine (IOM) report, Dying in America: Improving Quality and Honoring Individual Preferences Near End of Life, [6] highlighted a critical need for "increased understanding of ways to improve participation in effective advanced care planning and shared decision making among patients and families, including seriously ill children and adolescents, who may be able to participate actively in their health care decision making throughout their lives and as they approach death, and receive medical and related social services consistent with the values, goals and informed preferences."

Due to the variable course of organ failure with periods of both stability and acute on chronic decompensation, determining the appropriate timing for conversations of this nature can be very difficult, as evidenced by the case discussed in the opening paragraph. However, across the chronic illness literature, youth involvement in difficult conversations related to their prognosis and treatment decisions has been found to be associated with improved health and psychosocial outcomes. Despite these favorable associations, the majority of youth with serious illnesses report feeling inadequately informed and insufficiently involved in treatment-related decisions [7-8].

With funding provided by ISHLT and Enduring Hearts, Dr. Cousino and her research team are working to characterize the unique communication and decision making preferences of pediatric and young adult heart transplant populations specific to prognostication, advanced care planning and end-of-life decision making. Initial findings from this study will be discussed during a sunrise symposium at the 2017 Annual Meeting in San Diego. This pilot data will provide the foundation for the development of an evidence-based intervention to increase youth communication and decision making involvement throughout the course of organ failure with concurrent study of its impact on health-related and psychosocial outcomes over time. The overall objective of this work is to meet the needs of our pediatric patients at risk of shortened life-expectancies with acute appreciation of the challenges parents and providers face related to having these difficult conversations. ■

Disclosure Statement: Dr. Cousino receives funding support from ISHLT and Enduring Hearts. She does not have a financial relationship with a commercial entity that has an interest in the subject of the submitted article or other conflicts of interest to disclose.


  1. Workman JK, Myrick CW, Meyers RL, et al. Pediatric organ donation and transplantation. Pediatrics 2013;131:1723-30.
  2. Organ Procurement and Transplantation Network (US). Survival by patient age [Internet]. 2016 [cited 2016 Sept 15] Available from: http://optn.transplant.hrsa.gov.
  3. Dipchand AI, Rossano JW, Edwards LB, et al. Eighteenth Official Pediatric Heart Transplantation Report-2015; Early Graft Failure. The Journal of Heart and Lung Transplantation 2015;34:1233-43.
  4. Blume ED, Balkin EM, Aiyagari R,et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study. Pediatric Critical Care Medicine 2014;15:336-342.
  5. Fowler A, Freiberger D, Moonan M. Palliative and end?of?life care in pediatric solid organ transplantation. Pediatric Transplantation 2015;19:11-17.
  6. Institute of Medicine. Dying in America: Improving quality and honoring individual preferences near the end of life. 2014;1-638.
  7. Coyne I, Kirwan L. Ascertaining children's wishes and feelings about hospital life. Journal of Child Health Care 2012;16(3):293-304.
  8. Dunsmore J, Quine S. Information, support, and decision-making needs and preferences of adolescents with cancer: implications for health professionals. Journal of Psychosocial Oncology 1996;13(4):39-56.

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