Advance Care Planning - Why are the numbers so low and how can we fix it?

A guest blog from Suzzie Harvey, Director, Business Development, Australian Healthcare and Hospitals Association

The prevalence of advance care planning in primary care is vastly lower than in aged care and acute hospitals, signalling a major policy challenge for enabling palliative care in the home.

Advance Care Planning (ACP) is not a new term or a transient trend in the health industry. In the last 6 months the importance of advance care planning has been mentioned in almost every discussion I have engaged in about palliative care. Things I have heard said to me include “we need to do it [advance care planning] better”, “we need to do more plans” and, “the MBS needs to be reviewed to encourage higher completion rates”.

Ask any health professional who works in adult / aged / palliative and primary care, and they will surely have heard of this term and are aware of its importance.

With this in mind, it came as a surprise to learn how low the prevalence of advance care planning was in Australia, particularly in primary care.

How common is ACP in Australia?

A 2021 multicentre audit by Advance Care Planning Australia[1] examined the prevalence of advance care directives (a legal record of a person’s preferences for care and treatment), or documented advance care plans found that approximately 30 per cent of older people had an advance care document.

The audit found that most of these were not Advance Care Directives, and the prevalence was higher in aged care facilities (47 %) than in acute hospitals (15.7%) and, surprisingly, just 3.2 percent in general practice.

These statistics, and the findings of the Royal Commission into Aged Care Quality and Safety, show that the majority of Australians are missing the opportunity to have a say in how they want to be cared for should they become incapacitated by dementia or other circumstances.

Considering the push to increase the delivery of palliative and end of life care in the home, in line with the wishes of many Australians to die in their own home, this is a worrying statistic.

What are the benefits of ACP?

“The objective of advance care planning is to guide future decision-making about a person’s treatment and care so that it is consistent with their goals, preferences and values.”

The importance of, and benefits to, the patient of an ACP may be obvious, however much of the research analyses outputs over outcomes, as it focuses on completion of plans rather than the outcomes and impact on the person at end of life.

Findings from research that does discuss outcomes suggests the following:

• Patient outcomes
  • Lowered feelings of ‘losing hope’
  • Reduced anxiety
• Family outcomes
  • Lowered feelings of ‘losing hope’
  • Reduced anxiety
  • Improved satisfaction with decisions
  • Improved communication
• System outcomes
  • Improved communication
  • Decreased hospitalisations
  • Decreased resource utilisation eg: targeted directions such as Do Not Resuscitate being associated with a decrease in the use of cardiopulmonary resuscitation.

However, there are still evidence gaps and a need to develop person and community-centred outcomes and experience measures. This evidence could be used to inform guidance for health professionals on initiating and implementing ACP, as well as the provision of support programs for families and carers, like initiatives to reduce anxiety and guilt that may arise during the ACP process.

How can we increase the prevalence of ACP in primary care?

Despite the need for more evidence, there is also a clear path forward for improvements that all health system stakeholders, can, and need to enact.

The Royal Commission says the low rates could be the result of lack of awareness and understanding, as well a general reluctance to have end-of-life conversations. In addition, the Palliative Care Roadmap 2022-2027 developed by Palliative Care Australia also has 7 focus areas and outline a clear action plan for policy makers. Optimistically, there are now an increasing number of tools and resources available through Primary Health Networks and government-funding initiatives, like ELDAC, to raise awareness and facilitate conversations around end of life and advance care planning.

The ELDAC Primary Care Toolkit leads healthcare workers through the steps in providing palliative care and supporting advance care planning with patients and their families. The ELDAC Primary Care Toolkit contains:

• Links to clinical tools and resources;
• Education, training, and quality improvement strategies for palliative care and advance care planning;
• Information on how to access and develop local HealthPathways; and
• Resources to improve coordination and cooperation between services and providers

The ELDAC End of Life Law Toolkit contains clear and engaging information on about the laws relating to Advance Care Directives, including a case study, mythbusters and other resources .

 

References

1. Detering, K.M., Sinclair, C., Buck, K. et al. Organisational and advance care planning program characteristics associated with advance care directive completion: a prospective multicentre cross-sectional audit among health and residential aged care services caring for older Australians. BMC Health Serv Res 21, 700 (2021). https://doi.org/10.1186/s12913-021-06523-z

 

Suzzie Harvey
Director, Business Development, Australian Healthcare and Hospitals Association