Learning from international models of advance care planning to inform evolving practice in England. An economic perspective

Introduction

Advance care planning (ACP) has been promoted in policy as a way of improving the quality and appropriateness of care and making better use of resources. It is a voluntary process of reflection and discussion, usually undertaken with a health or care professional, about goals and preferences for future care. These are usually documented so they can be shared and inform care in the event of loss of capacity.

In research, ACP has been associated with fewer emergency admissions, hospitalizations, burdensome treatments and hospital deaths, reduced hospital costs, greater concordance of care with preferences and improved carer satisfaction. However, evidence about implementation and resources needed to deliver ACP support is lacking.

Objectives

The study aimed to:

• examine how participating organisations staff their ACP support provision and identify opportunities, barriers and models for involving different health and care professionals
• identify organisational aims for providing ACP support and explore leaders’ perspectives on the economic case
• explore experiences of public demand for ACP support and identify factors that are thought to influence this
• explore significant areas of resource use, particularly staff time, for delivering ACP support and gain insights into how high-quality ACP support can be provided efficiently and at scale.

Methods

This qualitative study was conducted in twelve international health and care organisations with extensive practical experience of delivering systemwide ACP support. These are based in the United States (US), Canada, Australia and New Zealand, countries which all have well-developed ACP policy.

In-depth qualitative interviews were conducted with purposive samples of system leaders, specialist ACP staff, physicians, and other clinical and non-clinical staff (average 13 per system). Interviews were audio-recorded with permission and data analyzed thematically using NVivo software.

Findings

• Physician leadership and involvement in advance care planning (ACP) are key; recommendation by a physician was the most important factor influencing take-up. But physicians do not have the time to deliver ACP support single-handedly
• Nurses, particularly those involved in chronic disease management, and social workers can play key roles. Social workers have facilitation and counselling skills, work with families and are able to conduct challenging conversations efficiently
• 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
• Team-based approaches align well with new multi-disciplinary models of care and allow for coordinated approaches
• 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.

Resources

Journal papers

Dixon J, Knapp M (2019) Delivering advance care planning support at scale: A qualitative interview study in twelve international healthcare organisations, Journal of Long-term Care. pp. 127–142.

Dixon J, Knapp M (2018) Whose job? The staffing of advance care planning support in twelve international healthcare organizations: A qualitative interview study, BMC Palliative Care, 17, 78.

Related publications

• Learning from international models of advance care planning to inform evolving practice in England
  ( https://www.sscr.nihr.ac.uk/wp-content/uploads/SSCR-research-findings_RF072.pdf )