Education campaigns have aimed to increase both the awareness and prevalence of advance care planning (ACP) documents. (1, 2) Health practitioners have become more confident in their ability to use these documents to ensure that patients’ wishes are fulfilled during end-of-life care. (3) In Australia, ACP documents primarily include an advance care plan as a written statement of preferences or a document formally appointing a substitute decision maker; however, the specific terminology varies across state jurisdictions. (4, 5) These documents play a particularly important role when a patient has lost decision making capacity and can no longer communicate for themselves. (6) Ensuring a patient’s wishes are fulfilled is the most common priority for health practitioners during end-of-life care. (3)
The importance of general practitioners in guiding patients’ ACP is well documented. (4, 7) There are many studies examining how the uptake of ACP in general practice can be promoted, (7, 8) but little is known about how (if at all) these documents are communicated across the healthcare system for use during end-of-life care. (9) Literature supports ACP documents being created with the assistance of health practitioners. Historically, legal representatives have been involved in the development of substitute decision maker documents. (10)
For people who died in high-income countries between 2010-15, (11) 47-60% died within the acute hospital setting. (12-14) In 2017, there was a discrepancy between the proportion of Australians who preferred die at home (70%), and the number who actually did so (50%). (15, 16) Identifying temporal trends in these data is complicated by both a paucity of population-level data around patient preferences, and the concept that such preferences can change over time. Location of death is unpredictable, so general practitioners remain central to ensuring advance care plans and end-of-life care is aligned with patient preferences where medically indicated and appropriate. Given that many patients die in hospital, to ensure patient preferences are met during end-of-life care, ACP documents must be readily available and communicated both between, and within, healthcare services.
Internationally, various legal rulings, legislations and guidelines outline how ACP is incorporated into medical practice. (10, 17-22) In Australia, the Victorian state law outlines that health practitioners must make a reasonable effort to determine the existence of an advance care plan. (4) While the creation of advance care plans is well documented, there is a dearth of literature analysing the communication of documents between parts of the healthcare system. Research concludes that a formal pathway is not often followed, leading to uncertainty as to whether advance care plans that are made in general practice are accessible to hospital staff. (23)
The importance of ACP document communication has been supported by a High Court ruling in the United Kingdom (UK), determining that all general practitioners must communicate any ACP documents to another treating healthcare service. (24) National registries and health records, such as the National Health Service Digital (NHS Digital) in the UK or My Health Record in Australia, may assist in bridging this gap in communication (25, 26) but as at December 2019, the number of ACP documents uploaded to these platforms was 0.11%. (27) While many countries are transitioning to electronic health records, these are not necessarily accessible to hospital staff. Within countries, there are inconsistencies in where ACP documents are stored within electronic health records. (28, 29) Electronic record system alerts can be used to inform hospital staff that a patient file includes an ACP document. Defining this ‘missing link’ in the ACP process may assist in more people’s preferences being known and respected during end-of-life care.
The aim of this study was to 1) identify the proportion of patients who died in a regional hospital without an ACP document system alert, and 2) determine whether these patients had an uncommunicated ACP document(s) remaining in their corresponding general practice record. The findings of this study will support policymakers seeking to identify strategies to improve the communication of ACP documents across health services and ensure that patients’ preferences are respected during their end-of-life care.