End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services.

BACKGROUND: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. MATERIALS AND METHODS: Focus groups and individual interviews were conducted, guided by grounded theory methodology. RESULTS: The current status of end-of-life care and dying comprised five key 'issues': knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with 'partners', including the dying person, other clients, fellow staff, family, external health services and the coroner. CONCLUSIONS: End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.

A call to action: an IWG charter for a public health approach to dying, death, and loss.

The current systems of care for dying persons, the people caring for them, and the bereaved operate in ways that frequently lack sufficient sensitivity to their needs. We describe a new model for dying, death, and loss that adopts a public health approach. Specifically, we describe a deliberative process that resulted in a charter for a public health approach to dying, death, and loss. Modeled after the World Health Organization's 1986 Ottawa Charter, our charter includes a call to action. It has the potential to bring about significant change on local, societal, and global levels as exemplified by four projects from three countries. Public health and end-of-life services and organizations need to form partnerships with the community to develop a public health approach to dying, death, and loss. Learning from each other, they will affirm and enhance community beliefs and practices that make death part of life.

Compassionate community networks: supporting home dying.

How may communities be mobilised to help someone dying at home? This conceptual article outlines the thinking behind an innovative compassionate community project being developed at Weston-super-Mare, UK. In this project, a health professional mentors the dying person and their carer to identify and match: (a) the tasks that need to be done and (b) the members of their social network who might help with these tasks. Network members may subsequently join a local volunteer force to assist others who are network poor. Performing practical tasks may be more acceptable to some family, friends and neighbours than having to engage in a conversation about dying, and provides a familiarity with dying that is often lacking in modern societies, so in this model, behavioural change precedes attitudinal change. The scheme rejects a service delivery model of care in favour of a community development model, but differs from community development schemes in which the mentor is a volunteer rather than a health professional, and also from those approaches that strive to build community capacity before any one individual dying person is helped. The pros and cons of each approach are discussed. There is a need for evaluation of this and similar schemes, and for basic research into naturally occurring resource mobilisation at the end of life.