A new era of family matters
February 16 2012, 10:50 am

The Children's Bioethics Centre 

‘Doctors, nurses and clinical staff aren’t necessarily receiving clinical ethics training in their undergraduate education, and they often need help to become more comfortable in these situations’. Dr. Hugo Gold, Clinical Director of the Children’s Bioethics Centre.

Just because we can, doesn’t always mean we should. This and many other ethically challenging issues are regularly faced by health professionals and families with seriously ill children at The Royal Children’s Hospital (RCH). The Children’s Bioethics Centre was established to provide support and assistance to health professionals and families faced with these difficult decisions.

It offers a clinical ethics consultation service, backed up by the development of clinical guidelines, evidence-based education and research programs. The Children’s Bioethics Centre addresses some of our society’s most difficult questions, whether or not to continue treatment in gravely ill children, when and how to tell children about the extent of their illness, and appropriately involving adolescents in decisions about their health care.

All of these questions play out against a backdrop of a variety of cultural and religious traditions, and differing styles of parenting. Each of these factors can complicate decision-making in the treatment of seriously ill newborns, children and adolescents.

Through its clinical ethics service and programs, the Centre has firmly established itself as a world-leading program – and it’s still only in its infancy. When the Children’s Bioethics Centre was founded in 2008, an ethical governance framework to guide health care professionals through these uniquely challenging circumstances was absent.
It wasn’t unusual for patients, families and health professionals to become isolated and frustrated in their struggle to decide on the best outcomes for a child.

Central to the Children’s Bioethics Centre’s activity is the case consultation service. When confronted with conflicting v views about the ongoing treatment and care of a seriously ill child, a patient’s clinician can request a consultation. A multidisciplinary group of between two and 20 health professionals trained in ethical thinking is then swiftly assembled.

The group – which includes representatives from across medical, nursing, legal, allied health and chaplaincy – meets with clinicians to discuss the issues and care management options available. Within 24 to 48 hours the Centre’s clinical ethicist, Lynn Gillam, collates the response and provides the clinician with a summary, followed by a detailed formal report within a week.

This collaborative consultation method enables the family and the treating team to reach a consensus on the best possible outcomes for the patient. ‘The case consultation service can reduce conflict, and give a sense of confidence and a clear path going forward so things go more smoothly for the patient and the family,’ Lynn Gillam explains. In the future, the service’s family-centred approach will include an even closer involvement of families and patients in the consultation process.

The Children’s Bioethics team has discovered that providing a place to openly discuss sensitive and delicate issues empowers medical staff to foster their communication, mediation and problem-solving skills. Over time key themes and issues have emerged, informing the centre’s establishment of ethical guidelines, some of which have been adopted nationally and internationally.

The centre now aims to establish a National Paediatric Clinical Ethics Forum and is dedicated to further advocating a systematic approach to clinical ethics consultation in Australia. ‘We’re leading the way in paediatric clinical ethics service delivery and it’s great to see our programs actively rolled out state- and nationwide,’ says Dr Catherine Lees, the centre’s Business Director.

Comprehensive funding is essential to allow the Bioethics Centre to continue successfully exploring ethically complex and contentious ideas, conducting world-class research, translating evidence into positive practice and providing a transparent service committed to improving ethical processes in paediatrics.

Funded through the Foundation and by a range of individuals and organisations, including the Estate of Les Klemke, The Pratt Foundation and The Victorian Law Foundation.

The RCH aims to care not only for the child but for the whole family. The Foundation supports patient and family centred care by subsidising a variety of initiatives and programs that would not exist if not for generous donations. Read more here.

This story was featured in the Foundation’s annual review book, The Impact of Giving, read our online version for more stories about the RCH.