Enhancing advance care planning systems to facilitate patient-centred care towards the end of life

What is the problem?

One in 3 Australians live in regional, rural or remote areas. Those that do, face significant inequities in healthcare, experience more chronic disease and die younger than those in major cities. Advance Care Planning (ACP) is an important public health initiative that can improve the quality, continuity and efficiency of end-of-life care, with particular relevance in regional, rural and remote areas.  

ACP involves patients discussing their healthcare preferences with their family, carers and providers, with the purpose of guiding future treatment, should the patient lack capacity. ACP is regarded as a positive contributor to end of life care internationally, and can increase compliance with patients’ treatment preferences, reduce hospitalizations, deaths in hospital and the psychological distress experienced by bereaved family members. Important for policy makers, ACP can also reduce the costs of end of life care particularly in relation to hospital admissions, with cost savings exceeding $13,000 per decedent in the last 6 months of life. 

Despite the benefits of ACP, uptake in Australia has been limited. Several attitudinal and structural barriers to ACP have been identified, for example, some patients have limited knowledge about ACP and its benefits; some providers lack time and confidence to discuss end of life plans; while others are hesitant to talk about ACP as they do not wish to distress their patient or deprive them of hope. Yet once ACP occurs, most patients and their caregivers report little to no distress and find the process to be somewhat to very helpful. 

Conversely if discussions are not initiated until a patient’s condition has deteriorated and they are nearing death, ACP has the potential to exacerbate stress for patients and their families. This scenario may also decrease concordance with patient end of life requests, as well as increasing futile care and re-admissions.

About the research translation program

This MRFF project will deliver a multifaceted intervention to: 

  1. Provide additional training to key hospital staff (e.g. aged, cancer and chronic care teams) and GPs in the use of the ACP;
  2. Develop and provide a program of medical governance with oversight by Palliative Care Staff Specialists who will assess ACP quality, and provide de-identified feedback to clinicians;
  3. Promote My Health Record utilization for end of life care patients with health staff; and 
  4. Develop a network of ACP facilitators including nurses and social workers, to engage and extend ACP completion and use. 

The study will examine the effects of this intervention on the quality and accessibility of ACPs, service use, and the concordance between ACP and end of life care. It will also examine the economic impact of the intervention compared to routine care.

What will be the impact?

It is hypothesized that improvements in the development, quality, access, usage and compliance with ACPs will increase concordance with patient preferences for care. Consequently, this will mitigate unforeseen negative effects for the patient, family and carers, as well as reduce the costs associated with end of life care.

For more information, contact Dr Daniel Curley at Daniel.Curley@health.nsw.gov.au