Advance care planning, culture and religion: an environmental scan of Australian-based online resources

Advance care planning (ACP) encompasses conversations about future health and personal care, based on individuals’ values and preferences that are made known in the event they are unable to communicate their own decisions.^1–3 ACP conversations may be formalised in written documentation, resulting in advance care directives (ACDs), which are recognised by common law or legislation^2,3 and include a statement of preferences, refusal of treatment or a nominated decision maker.^2,4 Early initiation of ACP in the primary setting is encouraged, but it is recognised that ACP should be revisited because choices may change along the illness trajectory, including acute, palliative and end-of-life care.³ ACP is associated with greater adherence to patients’ end-of-life wishes, improved overall satisfaction of patients and family members and reduced stress, anxiety and depression in surviving relatives.⁵ Although Australian state and territory legislative differences exist, ACP principles focus on autonomy, respect and informed consent,⁶ which may conflict or challenge people of different cultures and religions.⁷ Culture is based on ethnicity and influenced by race, age, sex and birth place,⁸ whereas religion is the faith group an individual affiliates with;⁹ both of these have the potential to influence ACP.^10,11

In Australia, there is growing governmental^2,3,12 and health professional association^13,14 support for ACP. The National Framework for Advance Care Directives advocates the need for ‘cultural appropriateness’ in ACP,² promoting recognition of cultural, spiritual and religious beliefs or backgrounds. Consideration of value assumptions between Western and minority cultural worldviews highlights differences in autonomy, decision-making processes, family inclusivity, control over dying and disclosure that affect ACP.¹¹

Since the initiation of ACP, resources have evolved, with many available on the Internet.^12,15–17 A recent review identified the availability of Australian online ACD templates, but did not examine specific cultural and religious information.¹⁸ Although health professionals and consumers increasingly source health-related information from the online environment,^19–23 due to non-regulation it is not well known what Australian-based ACP online resources (i.e. websites and informational booklets accessible from the Internet) are available and how culture and religion have been incorporated. Given Australia’s multicultural²⁴ and multifaith population,²⁵ access to readily available information regarding the implications of culture and religion on ACP is paramount to improving the process.

An environmental scan was undertaken for the purpose of project planning for a nationally funded palliative care project. The aim of this paper is to report the findings of that environmental scan, conducted to identify Australian-based ACP websites and ACP online informational booklets with cultural and religious considerations accessible to health professionals and consumers using the Internet.

Environmental scanning, which originated in the business environment,^26–30 has been widely used in the healthcare sector.^31–34 Scanning enables an organisation to search the external environment as a means of ‘information seeking’, to understand and learn about a defined topic assisting strategic project planning.^35,36 Findings from environmental scans in health may also have relevance to health professionals, consumers, health associations, external organisations and government policy makers to assist in health program planning and decision making.

Choo’s³⁶ Environmental Scanning as Information Seeking ‘searching’ model was used as a framework for the scan, based on the assumption that the environment (the Internet) was analysable for actively searching and retrieving online information. A project advisory committee, responsible for project governance, defined ‘information needs’ of the scan, which were formulated into ‘detailed search goals’. A ‘formal’ search strategy, eligibility criteria, identification, screening and synthesis process were devised for ‘information seeking’.

The aims of the scan were to identify: (1) Australian-based ACP websites with cultural or religious information; and (2) Australian-based ACP online informational booklets with cultural or religious information.

Three comprehensive Google searches were conducted from 30 June 2015 to 5 July 2015 to increase the ability to identify online resources and reduce the potential of non-identification. Searches were consistent with Boolean search conjunctions.³⁷ The Google search engine was used because it was anticipated health professionals and consumers would have a higher likelihood of using this search engine, given Google’s popularity as the most widely used search engine at the time, processing over 3.5 billion daily searches and 1.2 trillion searches annually.³⁸

The first Google search was undertaken to identify Australian-based websites primarily created for ACP. A Google search was conducted using the term ‘advance care planning’. A second Google search was conducted using the terms ‘advance care plan*’ OR ‘advance care directive*’ OR ‘advance directive*’ AND ‘culture’ OR ‘religion’. A third Google search was conducted using the terms ‘palliative care’ AND ‘culture’ OR ‘religion’. Each of these searches were set to filter country to ‘Australia’ and time frame ‘2000–15’. Palliative care was searched because ACP should be revisited along the illness trajectory, including end of life,³ as well as some elements being interconnected (i.e. beliefs, conversations and family involvement). It was also anticipated that not all cultures and religions would use the terminology ‘ACP’ when talking about end-of-life conversations; some may use the term ‘palliative care’.

Eligible Australian-based ACP websites were standalone, primarily developed for ACP content, in the English language, freely available to the public with open access and featuring content about religion or culture. General websites containing an ACP webpage (i.e. ACP webpages on hospital websites) were excluded.

Australian-based ACP online informational booklets considered eligible were in the English language, accessible from the Internet, about ACP, freely available to the public with open access and inclusive of at least one culture or religion. Items excluded were journal articles, invalid hyperlinks unable to be opened, communication or media items, departmental reports, policy frameworks, professional author or academic profiles, course information, clinical guidelines, learning packages, conference presentations and other documents (e.g. ACD, Power of Attorney and Guardian templates).

The Google ‘duplicate’ function was used to omit similar entries from the first search and URLs were copied to an Excel (Microsoft) spreadsheet. To answer the first research aim, URLs were then manually screened to identify whether they were standalone, Australian-based websites primarily developed for ACP by selecting the ‘home’ function. If ‘home’ led to another website that was not a standalone ACP website, it was excluded. Australian-based standalone websites primarily for ACP were then reviewed to identify available cultural or religious information.

For the second and third searches, similar URLs were omitted from Google with results copied to an Excel spreadsheet. Additional URLs identified from the first search that featured ACP were added to results from the second and third searches. Manual searching was undertaken to remove further duplicates. Results yielded an overwhelming amount of mixed-purpose content (i.e. professional profiles, communication or media items etc.); hence, URLs were excluded if they were not leading to informational booklets in the first instance. Included records were then reviewed to establish whether they were about ACP or palliative care, with those not meeting either criteria excluded. Further, those not including cultural or religious information for at least one culture or religion were excluded.

Eligible records were searched further where identified webpages contained hyperlinks to other webpages that were considered relevant. These were then explored for specific cultural and religious information.

To address the second aim, resources were reviewed by two analysts (APS and PM), with resources explicitly stating ‘ACP’ or ‘ACD’ considered intended for ACP, and therefore classified as ACP online informational booklets. Records not specifically mentioning ACP or ACD but related to health and palliative care and including cultural or religious information were marked as ‘potentially useful’, but not deemed eligible for the second aim.

Two analysts (APS and PM) undertook review and synthesis of all results. Australian-based ACP websites and online informational booklets meeting eligibility were tabulated with a summary of common characteristics and narrative description. ‘Potentially useful’ health and palliative care online resources were similarly analysed, given they may be beneficial for conducting conversations along the illness trajectory and end of life. All characteristics were agreed upon by both analysts.

Seven Australian-based ACP websites with cultural and religious information were identified (Fig. 1). Cultural and religious information was generally related to current projects, and advice for health professionals and consumers (Table 1). The Advance Care Planning Australia website³⁹ described a project (Taking Control of YOUR Health Journey; Advance Care Planning for Aboriginal and Torres Strait Islander Communities⁴⁰) aimed at increasing awareness of ACP among Aboriginal and Torres Strait Islander communities. A research project to improve ACP in culturally and linguistically diverse (CALD) communities, primarily of Greek and Italian backgrounds, was also described.⁴¹

Fig. 1.  Summary of search strategy and results for Australian-based advance care planning (ACP) websites and informational booklets with cultural or religious information.

Table 1.  Summary of Australian-based standalone advance care planning (ACP) websites with cultural and religious information
HP, health professionals; C, consumers; CALD, culturally and linguistically diverse

Catholic Health Australia⁴² presented several ACP resources^43–45 for health professionals and consumers considering future health planning within the Catholic context. These resources provided information for planning future health care, appointing a representative and their role, understanding rights and responsibilities and guidance for health professionals on interpreting and providing good care.^43,44

ACP advice was available to multicultural workers⁴⁶ and Aboriginal health workers⁴⁷ on the start2talk website,⁴⁸ with links to a range of external resources for these groups. Similarly, Decision Assist⁴⁹ featured a ‘resources’ section containing links to external resources for ‘specific needs’ groups, including CALD and Aboriginal and Torres Strait Islander communities, and a section on ‘Spirituality and Faith’.⁵⁰

Advance Care Directives Association Inc.⁵¹ featured booklets^52,53 that had statements to consider cultural and/or religious preferences in ACDs, health or personal care. Limited cultural and religious information was available from the website Planning What I Want,⁵⁴ where a downloadable ACP workbook⁵⁵ enquired about spiritual and/or religious requests in the directive section. Following registration for the MyValues website,⁵⁶ the profile page asked about ‘main cultural identity’ and ‘religion’, with two statements related to religion in the statement section.

Seven online informational booklets were considered to be developed specifically for ACP or ACDs^57–63 (Fig. 1). ACP online informational booklets included five for Aboriginal and Torres Strait Islander communities,^57–61 a health professional booklet about caring for Sikh patients⁶² and a website about older Italians that featured examples of ACDs.⁶³ Characteristics of the resources are summarised in Table 2. Three of five ACP informational booklets representative of Aboriginal and Torres Strait Islander communities were aimed at consumers,^59–61 with all explaining why ACP is important and what it involves. Nomination of a decision maker was clearly articulated in only one of the ACP Aboriginal and Torres Strait Islander communities information booklets for health professionals.⁵⁷ Guidance about death and dying, appropriate use of language and terminology, communication and advice for engaging Aboriginal and Torres Strait Islander communities in ACP and sharing ‘bad/sad news’ was also provided. In contrast, the booklet for health professionals caring for Sikh patients only concisely mentioned ACP in the ‘end-of-life issues’ section with a brief description of decision making before this. The Italian case studies provided three different examples of ACDs that incorporated family involvement, cultural issues and decision making, but it was unclear whether the scenarios were aimed at health professionals or consumers.

Table 2.  Summary of Australian-based advance care planning (ACP) informational booklets with cultural and religious information
‘X’ indicates that the booklet makes reference to the specific topics identified or is aimed at healthcare professionals (HPs) or consumers (C). ACD, advance care directive; PEPA, Program of Experience in the Palliative Approach; SDM, substitute decision maker

During the course of ‘information seeking’, 21 other online resources were identified that were developed in the context of health and palliative care but potentially useful for ACP.^64–84 These were categorised into those representing a ‘specific’ culture or religion (n = 15)^64–77,84 and ‘combined’ resources (n = 6)^78–83 that were representative of more than one culture or religion (Table 3).

Table 3.  Summary of Australian-based online health and palliative care resources representative of specific or combined culture(s) or religion(s)
‘X’ indicates that the booklet makes reference to the specific topics identified or is aimed at healthcare professionals (HPs) or consumers (C). ACD, advance care directive; ACP, advance care planning; VACCHO, Victorian Aboriginal Community Controlled Health Organisation Inc.; GOC, Greek Orthodox Community

Of those identified, 17 were aimed at health professionals,^{64–66,68–76,78,80–83} two at consumers^77,84 and two at both.^67,79 These resources presented varying information related to beliefs, practices, conversations, family involvement, treatment choices and decision making within a particular cultures) and/or religion(s), with only four resources,^68,70,79,81 representing all these areas. These resources were tailored to aged care (n = 1),⁷² general health care (n = 5)^{66,68,70,71,73} and palliative care (n = 15).^{64,65,67,69,74–84}

Environmental scanning was used to explore the Internet for Australian-based ACP websites and online informational booklets with cultural and religious information. Seven Australian-based ACP websites were identified with varying degrees of cultural and religious information; some described project information, whereas others featured links to external websites providing content. Catholic Health Australia’s⁴² website featured ACP guidance for health professionals and people considering future health care within Catholic contexts. The Advance Care Planning Australia website³⁹ described CALD project information and resources tailored for Aboriginal and Torres Strait Islander communities. Both the Decision Assist⁴⁹ and start2talk⁴⁸ websites featured external links to access cultural or religious information, with the latter providing access to spiritual and faith information. Resources could be beneficial for health professionals and consumers searching for background information pertaining to specific religions or cultures before starting ACP.

Only seven Australian-based ACP online informational booklets were identified, with Aboriginal and Torres Strait Islander people representing the highest religion or culture featured, despite being a minority population within Australia.⁸⁵ This provides evidence of ACP projects currently underway within this group,⁸⁶ indicating a growing awareness to promote end-of-life conversations and decision making among this population while acknowledging diversity in cultural views. Of the other groups, ACP was specifically identified within a resource of Sikh culture⁶² and a website for older Italians.⁶³ Although this was limited, it highlights efforts to guide health professionals and consumers in understanding the sensitivities and complexities of ACP in the Sikh and Italian population while revealing a need for further specific ACP resource development. The Australian multifaith and multicultural population is 61.1% Christian and 7.2% non-Christian,²⁵ with 26% of residents born overseas and a further 20% having at least one parent born overseas.²⁵ As such, ACP online resources should support health professionals conducting ACP among these populations, as well as raising awareness of ACP among these consumers.

Although 21 ‘potentially useful’ online resources were also identified, they were mostly intended towards supporting health professionals in providing culturally appropriate care in the aged, health and palliative care setting rather than being specific to ACP conversations or ACDs. Increasingly, efforts are directed towards the early integration of ACP in the primary health care setting, with revisitation of conversations during changes in health conditions, prognosis, hospital admissions and the palliative care setting to ensure respect for consumers’ wishes. As a starting point, these resources are valuable due to the overlap between discussions that occur along the illness trajectory. This is reflected in the content of these online resources, in which beliefs and practices about death and dying, conversations, family, treatment choices and substitute decision making were portrayed, even though ‘ACP’ may not have been articulated.

However, there is still a significant gap in the availability of Australian-based ACP online resources that support general practitioners (GPs) and practice nurses in conducting ACP within diverse religious and cultural contexts. In addition, there are limited ACP online resources for consumers, informing about ACP within several cultural and religious contexts. Given movement towards early initiation of ACP in primary health care with an emphasis on GPs¹³ and practice nurses⁸⁷ facilitating and participating in conversations as part of a multidisciplinary team, further ACP online resources should be tailored to this setting.

Development of ACP online resources for health professionals and consumers should complement existing Australian-based ACP websites and online informational booklets and include collaboration with key state and national cultural and religious stakeholder organisations residing in Australia to ensure an appropriate evidence base and applicability to the Australian-based population. The diversity of the Australian population,²⁵ cultural influences in ACP¹¹ and direction towards culturally appropriate ACP² provide strong rationale for the development of such resources. Resources should support health professionals and consumers in the preparation and participation of culturally appropriate ACP conversations while ensuring respect for people and avoidance of generalisations, as consistent with the identified existing combined resources.^78–83

When considering the strengths of the present study, this is the first attempt at using environmental scanning to identify Australian-based ACP online resources with cultural and religious information.

However, the scan has several limitations. Every effort to search and review cultural and religious information from records (URLs) was made, although some URLs were not accessible and therefore excluded. Given the Google search strategy, and the changing online environment, it would be difficult to replicate the environmental scan to render the same results. In addition, URLs identified may not always be accessible because the online environment may change. Thus, the results provide a view of what was available and accessible from the online environment within the reported time frame. Given that the scan focused on Australian-based online resources, findings may be less meaningful to health professionals and consumers in other countries where different multicultural populations exist (i.e. the US, Canada and UK).

Although the environmental scan revealed several Australian-based ACP websites and online informational booklets, only a few advised of the implications of culture or religion in ACP. An online resource supporting health professionals and consumers in ACP addressing different cultural and religious contexts has the potential to increase awareness and initiation of ACP.

Considering the availability of existing online resources, further cultural and religious ACP online resource development should target a primary health care audience, with applicability to wider networks of health professionals and consumers. Resource development should also build upon and complement existing ACP online resources, including those identified with cultural and religious information. Future research examining the availability of ACP online resources in other countries may inform resource development for wider populations.

None declared.