Advance care planning

Promising ways to deliver advance care planning support at scale identified by study

Recommendation by a physician was the most important factor influencing take-up of ACP support, research suggests

Advance care planning is the process of a person making choices and decisions about their future healthcare. This usually involves discussion with, or support from, a health or care professional. Although anyone can undertake advance care planning (ACP) at any time, it is particularly important for people living with chronic and progressive illnesses. ACP has been promoted in policy as a way of improving the quality and appropriateness of care and making better use of resources.

A study led by Josie Dixon at the London School of Economics and Political Science was one of the first to examine real-world delivery of ACP support on a large scale internationally, and has identified several areas in which efficiencies can be sought to enable delivery at scale. In-depth interviews were carried out with a range of leaders and frontline staff from 12 international healthcare organisations in Australia, Canada, New Zealand and the US.

ACP staffing

The research found a complex picture where ACP is being provided both as an individual-level intervention and as part of wider system change. Most organisations had a full-time ACP coordinator responsible for strategic coordination and development of ACP support. This role, alongside active and sustained senior management support, helped to embed provision of ACP support. Some organisations had dedicated ACP facilitators but those ACP conversations were not always well-integrated with the rest of a person’s care and, if entirely physician-led, over-reliance on dedicated facilitators was not considered sustainable or scalable.

Physicians were often supportive, sometimes taking on leadership roles for ACP and acting as champions. Encouraging physician ownership was considered important for integrating and sustaining provision of ACP support but, where expert clinicians were scarce, ACP could become limited in scope and occur late in the illness trajectory. Nurses embedded in chronic disease management were well placed to deliver ACP support, but needed protected time and support from physicians.

Social workers had good facilitation skills, notwithstanding some concerns about de-skilling, and were thought to facilitate ACP conversations efficiently. But they could also lack time, especially in busy clinic environments, and needed more clinical support than nurses.

The interviews showed that the organisations shared challenges in delivering ACP support, particularly with regard to the demands on staff time.

The economic case

The study also sought to understand leaders’ perspectives on the economic case for ACP, and found that leaders interviewed thought the economic case was probably too difficult to quantify, but pointed to quality improvements for patients and families, managing organisational risks associated with ongoing demographic and technological changes, and limiting reactive care and the use of low-value treatments.

Efficiencies of scale

The findings from the study identify several areas in which efficiencies can be sought to enable the delivery of ACP support at scale. Promising areas for development included a degree of staff specialism, physicians working in teams with trained nurses or social workers, the use of decision aids, group-based facilitations, strengthened public health approaches and supportive parallel system changes.

The research suggested that the growth of palliative care social work and increasing involvement of social workers in the care of people with chronic disease and at the end of life present new possibilities for their involvement in ACP.

The study also highlighted that while supporting individuals is important, some of the aims of ACP can be promoted through public education, public health, group facilitation approaches and community-based interventions.

Full summary findings

NIHR SSCR (2020) Learning from International Models of Advance Care Planning to Inform Evolving Practice in England, Research Findings 072, NIHR School for Social Care Research, London.

Further information

This study was funded by the NIHR School for Social Care Research and led by Josie Dixon at the Care Policy and Evaluation Centre at LSE.

The findings were completed before COVID-19 and have been published to support NIHR SSCR’s requirement that findings from all completed studies are made publicly available.