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What are the benefits of advance care planning? Theoretically, the process can facilitate patient autonomy so that patients' future wishes can be carried out once they can no longer decide for themselves, 1 but evidence regarding real benefit is mixed. A controlled trial of the impact of combining improved communication about resuscitation preferences with information on prognosis found no improvement in the quality of end of life care. 12 Other authors have suggested that the wider advance care planning process may also be ineffective in achieving positive outcomes. [13][14][15][16] Conversely, some evidence, including that from a recent small systematic review in patients with dementia and cognitive impairment, 17 points to several possible benefits. These include less aggressive medical care and better quality of life near death, decreased rates of hospital admission, especially of care home residents, and increased rates of hospice admission, 18-20 with those having completed an advance care plan being more likely to receive care that is aligned with their wishes. 21 22 A UK retrospective study of 969 deceased hospice patients found that those who had completed such a plan (57%) spent less time in hospital in their last year of life. It also found that those who died outside of hospital had a lower mean hospital treatment cost than those who died in hospital. 23 Advance care planning is also thought to help families prepare for the death of a loved one, to resolve family conflict, and to help with bereavement. 24 25 For example, a randomised controlled trial of facilitated advance care planning versus usual care in elderly patients in Australia showed that 86% of patients in the intervention arm had their end of life wishes known and respected compared with 30% in the control arm. The same study highlighted a greater level of satisfaction among patients and relatives in the intervention group. Family members of patients in the intervention group who died had lower levels of psychological morbidity. 25 A systematic review published in 2008 examined evidence for improving palliative care at the end of life. It included 41 articles relating to advance care planning and found moderate evidence supporting multicomponent interventions to increase patient uptake of advance directives; however, these studies seldom measured clinically important outcomes. The paper also concluded that

Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally.

Over the past decade, public health approaches to end-of-life care have received increased literature, policy and practice focus. These developments recognise the significance of community engagement activities and their contribution to end-of-life care. In the United Kingdom, community engagement is a priority for the majority of hospices. Nevertheless, there exists some ambiguity about the range of different practice that exists under this heading, the principles underpinning it and the outcomes for the work. Conceptual clarity is an essential next step in the development of this emergent field. The aim of this paper is to present a definition and a conceptual model of community engagement for end-of-life care services and the communities they serve. A spectrum of community engagement in end of life care is presented, derived from models in the general community engagement literature. Types of engagement extend on a continuum from informing through consulting, co-producing, collaborating to empowerment, with the later levels capable of achieving more penetrating health and social change. The factors that affect the type and nature of engagement are represented in boxes at either end, demonstrating that it is not the influence of a single factor, but the overall balance of factors that determines the quality and outcomes of the engagement work. This spectrum is designed to aid professional services and the communities they serve to embark on community engagement projects with an open awareness of the requirements and key components underpinning their success and a shared understanding and language.

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There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.

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