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Abstract
Aims The concept of institutional ethics committees was born at least in part from difficulties faced making decisions at the end-of-life1. Our Hospice developed such a committee in 2004, prompted by the increasingly complex nature of the issues faced by clinical staff. The Committee comprises hospice staff and external members including legal and academic representation. Its terms of reference2 are broadly: ‘to provide guidance to staff and trustees when ethical issues make the course of action unclear, by:
▶ Development of standards and guidelines.
▶ Education of staff to enhance ethical decision making.
▶ Ethical decision making on issues from allocation of resources to the referral process and aspects of care'.
This study explores the value of a clinical ethics committee in a children's and young adults' hospice setting, and assess how far this committee has achieved its aims.
Methods Data was collected retrospectively by analysing the minutes of the Committee's meetings and relating this to its terms of reference.
Results Thirty six regular quorate minuted meetings have taken place since 2004. Additionally, two extra-ordinary meetings were called. There has been a wide variety of topics on the agenda, covering actual dilemmas for the Care Team (see figure 1), and scenarios (see figure 2). Twelve research projects were assessed (2/3 from external researchers, 83% qualitative research). Five guidelines and one policy statement were agreed (see table 1). Issues relating to education were addressed directly in eight (22%) meetings.
Standards and guidelines agreed, discussed or further developed as a result of Ethics Committee meetings
Conclusions The Committee meets regularly with good attendance, and a wide range of subject matter was submitted, with issues relating to sexuality and alcohol represented alongside more conventional palliative care topics. Significant work has also been contributed to the development of standards and guidelines. Having met two of its stated objectives, the next step for our committee will be furthering the educational impact for the institution as a whole, particularly as the literature on the benefits of such committees highlights the benefits of the educational role.1 ,3