Education campaigns have aimed to increase both the awareness of advance care planning (ACP) discussions, and prevalence of ACP documents. (1, 2) Health practitioners have become more familiar and confident in their ability, to use these documents, to make decisions during end-of-life care that support patients’ preferences. (3) These documents play a particularly important role when a patient has lost decision making capacity and can no longer communicate for themselves. (4, 5) Ensuring a patient’s preferences are fulfilled is the most common priority for health practitioners during end-of-life care. (3) Engagement with, and completion of, ACP documents is influenced by cultural factors. (6) In Australia, ACP conversations can be emotionally challenging for both patients and practitioners but are of great value. (7)
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 jurisdictions. (4, 8) The state government of Victoria provides an ACP document template, however advance care plans can be constructed on any written form if it fulfils the relevant legal requirements. (3, 5, 8) Historically, legal representatives have also been involved in the development of substitute decision maker documents. (9)
The importance of general practitioners in guiding patients’ ACP is well documented and there are many studies examining how the uptake of ACP in general practice can be promoted. (8, 10, 11) As location of death is unpredictable, general practitioners remain central to ensuring advance care plans and end-of-life care are aligned with patient preferences where medically indicated and appropriate. (12) For people who died in high-income countries between 2010-15, (13) 47-60% died within the acute hospital setting. (14-16) 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%). (17, 18) 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. (19) As such, it is important that patients’ preferences are documented and communicated across healthcare settings.
Internationally, various legal rulings, legislations and guidelines outline how ACP is incorporated into medical practice. (9, 20-25) The state law in Victoria, Australia outlines that health practitioners must make a reasonable effort to determine the existence of an advance care plan. (8) 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. (26) 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. (27) In Australia, current methods of ACP document communication from general practice to hospitals vary and include: facsimile, email, post or the patient bringing in their own documents from their place of residence. (27)
The importance of ACP document communication has been supported by a High Court ruling in the United Kingdom, determining that all general practitioners must communicate any ACP documents to another treating healthcare service. (28) National registries and health records, such as the National Health Service Digital in the United Kingdom or My Health Record in Australia, may assist in bridging this gap in communication (29, 30) but as at March 2020, the number of ACP documents uploaded to My Health Record was 0.11% (26,920/22,740,000). (31) Within countries, there are inconsistencies in where and how ACP documents are stored within electronic health records. (32-34) Electronic record system alerts can be used to inform hospital staff that a patient file includes an ACP document. (34, 35) 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 support the representation of patients’ preferences during their end-of-life care.