The Patients Changing Things Together (PATCHATT) ethics pack: A tool to support inclusive ethical decision-making in the development of a community-based palliative care intervention

Abstract

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice.