Paediatric Donor Meeting Review

An international meeting exploring the practical and ethical issues of paediatric deceased organ donation was convened by the Ethics Committee of The Transplantation Society in Geneva, Switzerland, on March 21–22, 2014. The 34 participants included representatives from the regional professional societies of transplantation and the World Health Organization, and encompassed a great diversity of expertise with paediatric transplant surgeons and physicians, intensive care specialists, nurses, ethicists, lawyers, sociologists and psychologists present.

The inspiration for this meeting, which participants believe will provide essential guidance for professionals and policy makers seeking to establish or enhance deceased donation programs, was that of TTS President Francis Delmonico and Ethics Committee Chair Michael Bos.

The aim of the meeting was to draw attention to the importance of paediatric deceased donation, and to discuss some of the shared challenges experienced across the world in providing opportunities for donation ethically and effectively, creating recommendations for improving practice and policy. Four groups explored specific areas of concern and drafted materials in advance of the meeting under the leadership of the hard working chairs

  1. Donor Recognition and Policy in the Paediatric Intensive Care Unit (PICU)
    Chairs: Tom Nakagawa and Marion Siebelink
  2. Ethical Challenges in End-of-Life Care
    Chairs: Katrina Bramstedt and Joe Brierley
  3. Family Decision Making
    Chairs: Fabienne Dobbels and Jim Rodrigue
  4. Allocation of Paediatric Donor Organs
    Chairs: Minnie Sarwal and Ron Shapiro

During the meeting, a number of working group meetings were held and then a series of plenary sessions were conducted to discuss issues and review recommendations drafted by the respective groups. An initial plenary session was also held to discuss the issue of death determination in children. Consensus was achieved on a number of key points, which will form the substance of a later meeting report.

Despite considerable variation in experiences between different countries and cultures, common themes of concern and opportunities to improve practice were noted. In particular, professional and public discomfort and uncertainty regarding the determination of death and the inclusion of deceased donation within end-of-life care were noted to underpin many missed opportunities for donation. Staff education and training, provision of clear guidance and protocols to assist in timely identification, referral and optimal management of potential deceased donors, and effective communication with families were identified as essential to support deceased donation. Participants agreed that recognition and understanding of death as a process, and that compassionate, high quality care at the end of life is compatible with deceased donation, will assist both professionals and families in providing opportunities for and making informed decisions about donation. The shared concern of families and professionals is of course for the well-being of paediatric patients, and policies and practices should be informed by evidence so as to promote this goal. Communication with families should aim to foster understanding and to build trust in policy and practice through transparency about, for example, allocation of paediatric donor organs.

More research, for example investigating practical and cultural barriers to paediatric deceased donation, is needed. More resources for professional education and training, and to guide standardised and accountable practices are required. First, however, this meeting highlights the need for professionals to take responsibility for improving and encouraging paediatric deceased donation where possible throughout the world.  

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