Living well and dying well - facing the challenges at a children's hospital

Abstract

We outline a process, undertaken at a large tertiary children's hospital, intended to provide practical guidance and support for those involved in the management of children with life-limiting conditions. Initial discussions with representatives of clinical and support services identified communication problems and ethical dilemmas as key issues. These were further explored in multidisciplinary hospital meetings, culminating in a conference (Living Well, Dying Well) where individual perspectives - clinical, multi-faith, parental and legal - and cases were presented. Communication problems were found to involve unrealistic expectations, failures of anticipation and difficulties in discussing sensitive issues, while ethical dilemmas arose from balancing burdens and benefits, clinical uncertainty, respecting autonomy and achieving equity and justice in delivery of care. An integrated service has been developed that is intended to provide clinical and spiritual care, psychosocial and ethical support, advice and mediation for children, families and staff, and to address the latter's educational and training needs.