Advance care planning, culture and religion: an environmental scan of Australian-based online resources
Amanda Pereira-Salgado A C , Patrick Mader A and Leanne M. Boyd A BA Centre for Nursing Research, Cabrini Health, Cabrini Education and Research Precinct, 154 Wattletree Road, Malvern, Vic. 3144, Australia. Email: pmader@cabrini.com.au; lboyd@cabrini.com.au
B Australia Catholic University, 115 Victoria Parade, Fitzroy, Vic. 3065, Australia.
C Corresponding author. Email: apereira-salgado@cabrini.com.au
Australian Health Review 42(2) 152-163 https://doi.org/10.1071/AH16182
Submitted: 30 August 2016 Accepted: 12 January 2017 Published: 20 April 2017
Journal compilation © AHHA 2018 Open Access CC BY-NC-ND
Abstract
Objectives Culture and religion are important in advance care planning (ACP), yet it is not well understood how this is represented in ACP online resources. The aim of the present study was to identify the availability of Australian-based ACP websites and online informational booklets containing cultural and religious information.
Methods An environmental scanning framework was used with a Google search conducted from 30 June 2015 to 5 July 2015. Eligible Australian-based ACP websites and online informational booklets were reviewed by two analysts (APS & PM) for information pertaining to at least one culture or religion. Common characteristics were agreed upon and tabulated with narrative description.
Results Seven Australian-based ACP websites were identified with varying degrees of cultural and religious information. Seven Australian-based ACP informational booklets were identified addressing culture or religion, namely of Aboriginal and Torres Strait Islander (n = 5), Sikh (n = 1) and Italian (n = 1) communities. Twenty-one other online resources with cultural and religious information were identified, developed within the context of health and palliative care.
Conclusions There is no comprehensive Australian-based ACP website or informational booklet supporting ACP across several cultural and religious contexts. Considering Australia’s multicultural and multifaith population, such a resource may be beneficial in increasing awareness and uptake of ACP.
What is known about the topic? Health professionals and consumers frequently use the Internet to find information. Non-regulation has resulted in the proliferation of ACP online resources (i.e. ACP websites and online informational booklets). Although this has contributed to raising awareness of ACP, the availability of Australian-based ACP online resources with cultural and religious information is not well known.
What does this paper add? This paper is the first to use an environmental scanning methodology to identify Australian-based ACP websites and online informational booklets with cultural and religious information.
What are the implications for practitioners? The results of this environmental scan present the availability of Australian-based ACP websites and online informational booklets containing cultural and religious information. A thorough understanding may assist in identifying gaps for future ACP project planning and policy objectives, consistent with meeting cultural and religious needs. This may be beneficial for health professionals, consumers, health associations, organisations and government policy makers concerned with ACP.
References
[1] Mullick A, Martin J, Sallnow L. An introduction to advance care planning in practice. BMJ 2013; 347 f6064| An introduction to advance care planning in practice.Crossref | GoogleScholarGoogle Scholar |
[2] The Clinical Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council. A national framework for advance care directives. 2011. Available at: http://www.coaghealthcouncil.gov.au/Publications/Reports/ArtMID/514/ArticleID/63/National-Framework-for-Advance-Care-Directives [verified 7 July 2015].
[3] The Victorian Department of Health. Advance care planning: have the conversation: a strategy for Victorian health services 2014–2018. 2014. Available at: https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/advance-care-planning/acp-strategy [verified 15 July 2015].
[4] Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med 2001; 29 N34–9.
| Advance care planning: pitfalls, progress, promise.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3M7otl2hsg%3D%3D&md5=4abf08989a2336ae756f8ed5bc624be0CAS |
[5] Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340 c1345
| The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.Crossref | GoogleScholarGoogle Scholar |
[6] Rhee JJ, Zwar NA. How is advance care planning conceptualised in Australia? Findings from key informant interviews. Aust Health Rev 2011; 35 197–203.
| How is advance care planning conceptualised in Australia? Findings from key informant interviews.Crossref | GoogleScholarGoogle Scholar |
[7] Lunsford B. Religion, spirituality and culture in advance care planning. In: Rogne L, McCune S, editors. Advance care planning: communicating about matters of life and death. New York: Springer Publishing Company; 2013. pp. 89–103.
[8] Mitchell BL, Mitchell LC. Review of the literature on cultural competence and end-of-life treatment decisions: the role of the hospitalist. J Natl Med Assoc 2009; 101 920–6.
| Review of the literature on cultural competence and end-of-life treatment decisions: the role of the hospitalist.Crossref | GoogleScholarGoogle Scholar |
[9] Cohen AB, Koenig HG. Religion, religiosity and spirituality in the biopsychosocial model of health and ageing. Ageing Int 2003; 28 215–41.
| Religion, religiosity and spirituality in the biopsychosocial model of health and ageing.Crossref | GoogleScholarGoogle Scholar |
[10] Cohen MJ, McCannon JB, Edgman-Levitan S, Kormos WA. Exploring attitudes toward advance care directives in two diverse settings. J Palliat Med 2010; 13 1427–32.
| Exploring attitudes toward advance care directives in two diverse settings.Crossref | GoogleScholarGoogle Scholar |
[11] Johnstone M, Kanitsaki O. Ethics and advance care planning in a culturally diverse society. J Transcult Nurs 2009; 20 405–16.
| Ethics and advance care planning in a culturally diverse society.Crossref | GoogleScholarGoogle Scholar |
[12] The Victorian Department of Health. Advance care planning. 2015. Available at: https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/advance-care-planning [verified 15 July 2015].
[13] Australian Medical Association. Position statement on end of life care and advance care planning. 2014. Available at: https://ama.com.au/position-statement/end-life-care-and-advance-care-planning-2014 [verified 15 July 2015].
[14] Royal Australasian College of Physicians. Improving Care at the End of Life: Our Roles and Responsibilities. 2016. Available at: https://www.racp.edu.au/docs/default-source/advocacy-library/pa-pos-end-of-life-position-statement.pdf?sfvrsn=6 [verified 15 July 2016].
[15] Green MJ, Levi BH. The era of ‘e’: the use of new technologies in advance care planning. Nurs Outlook 2012; 60 376–83.
| The era of ‘e’: the use of new technologies in advance care planning.Crossref | GoogleScholarGoogle Scholar |
[16] Catholic Health Australia. A guide for health professionals implementing a future health care plan. 2014. Available at: http://www.cha.org.au/images/resources/Professional%20Document.pdf [verified 15 July 2015].
[17] Austin Health. Respecting patient choices. 2016. Available at: http://advancecareplanning.org.au/advance-care-planning/for-professionals/training-to-do-acp [verified 15 July 2015].
[18] Luckett T, Bhattarai P, Phillips J, Agar M, Currow D, Krastev Y, Davidson PM. Advance care planning in 21st century Australia: a systematic review and appraisal of online advance care directive templates against national framework criteria. Aust Health Rev 2015; 39 552–60.
| Advance care planning in 21st century Australia: a systematic review and appraisal of online advance care directive templates against national framework criteria.Crossref | GoogleScholarGoogle Scholar |
[19] Beck F, Richard J-B, Nguyen-Thanh V, Montagni I, Parizot I, Renahy E. Use of the Internet as a health information resource among French young adults: results from a nationally representative survey. J Med Internet Res 2014; 16 e128
| Use of the Internet as a health information resource among French young adults: results from a nationally representative survey.Crossref | GoogleScholarGoogle Scholar |
[20] AlGhamdi KM, Moussa NA. Internet use by the public to search for health-related information. Int J Med Inform 2012; 81 363–73.
| Internet use by the public to search for health-related information.Crossref | GoogleScholarGoogle Scholar |
[21] Ybarra ML, Suman M. Help seeking behavior and the Internet: a national survey. Int J Med Inform 2006; 75 29–41.
| Help seeking behavior and the Internet: a national survey.Crossref | GoogleScholarGoogle Scholar |
[22] Bundorf MK, Wagner TH, Singer SJ, Baker LC. Who searches the Internet for health information? Health Serv Res 2006; 41 819–36.
| Who searches the Internet for health information?Crossref | GoogleScholarGoogle Scholar |
[23] Cullen RJ. In search of evidence: family practitioners’ use of the Internet for clinical information. J Med Libr Assoc 2002; 90 370–9.
[24] Australian Bureau of Statistics. Overseas born Aussies highest in over a century. 2012. Available at: http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/3412.0Media%20Release12014-15?opendocument&tabname=Summary&prodno=3412.0&issue=2014-15&num=&view= [verified 15 July 2015].
[25] Australian Bureau of Statistics. Cultural diversity in Australia. 2012. Available at: http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/2071.0main+features902012-2013 [verified 15 July 2015].
[26] Aguilar FJ. Scanning the business environment. New York: MacMillan Company; 1967.
[27] Daft RL, Sormunen J, Parks D. Chief executive scanning, environmental characteristics, and company performance: an empirical study. Strateg Manage J 1988; 9 123–39.
| Chief executive scanning, environmental characteristics, and company performance: an empirical study.Crossref | GoogleScholarGoogle Scholar |
[28] Daft RL, Weick KE. Toward a model of organizations as interpretation systems. Acad Manage Rev 1984; 9 284–95.
[29] Fahey L, King WR. Environmental scanning for corporate planning. Bus Horiz 1977; 20 61–71.
| Environmental scanning for corporate planning.Crossref | GoogleScholarGoogle Scholar |
[30] Jain SC. Environmental scanning in U.S. corporations. Long Range Plann 1984; 17 117–28.
| Environmental scanning in U.S. corporations.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaL2c7ptVClsA%3D%3D&md5=576742e55fe388e8eb78c74cfadf07c7CAS |
[31] Rowel R, Moore ND, Nowrojee S, Memiah P, Bronner Y. The utility of the environmental scan for public health practice: lessons from an urban program to increase cancer screening. J Natl Med Assoc 2005; 97 527–34.
[32] Gillespie B, Chaboyer W, Nieuwenhoven P, Rickard C. Drivers and barriers of surgical wound management in a large health care organisation: results of an environmental scan. Wound Pract Res 2012; 20 90–2.
[33] Moore C, Lee J, Milligan J, Giangregorio L. Physical activity as medicine among family health teams: an environmental scan of physical activity services in an interdisciplinary primary care setting. Appl Physiol Nutr Metab 2015; 40 302–5.
| Physical activity as medicine among family health teams: an environmental scan of physical activity services in an interdisciplinary primary care setting.Crossref | GoogleScholarGoogle Scholar |
[34] Shahid S, Beckmann KR, Thompson SC. Supporting cancer control for Indigenous Australians: initiatives and challenges for cancer councils. Aust Health Rev 2008; 32 56–65.
| Supporting cancer control for Indigenous Australians: initiatives and challenges for cancer councils.Crossref | GoogleScholarGoogle Scholar |
[35] Choo C. The art of scanning the environment. Bull Am Soc Inf Sci Technol 1999; 25 21–4.
| The art of scanning the environment.Crossref | GoogleScholarGoogle Scholar |
[36] Choo C. Environmental scanning as information seeking and organizational learning. Inform Res 2001; 7. Available at: http://www.informationr.net/ir/7-1/paper112.html [verified 30 June 2015].
[37] Google. Google search help search operators. 2015. Available at: https://support.google.com/websearch/answer/2466433 [verified 30 June 2015].
[38] Internet Live Stats. Google search statistics. 2015. Available at: http://www.internetlivestats.com/google-search-statistics/ [verified 15 July 2015].
[39] Advance Care Planning Australia. Advance care planning Australia. 2015. Available at: http://advancecareplanning.org.au/ [verified 6 July 2015].
[40] Advance Care Planning Australia. Taking control of YOUR health journey. Available at: http://advancecareplanning.org.au/library/uploads/documents/act/141331_ACP_Booklet_LOWRES.pdf [verified 15 July 2015].
[41] Advance Care Planning Australia. Reports, projects and publications. 2015. Available at: http://advancecareplanning.org.au/publications/ [verified 6 July 2015].
[42] Catholic Health Australia. My future care. 2015. Available at: http://myfuturecare.org.au/ [verified 15 July 2015].
[43] Catholic Health Australia. A guide for health care professionals implementing a future health plan. 2014. Available at: http://www.cha.org.au/publications/277-advance-care-planning-documents.html [verified 15 July 2015].
[44] Catholic Health Australia. Code of ethical standards for Catholic health and aged care services in Australia. 2001. Available at: http://www.cha.org.au/images/resources/Code%20of%20ethics-full%20copy.pdf [verified 15 July 2015].
[45] Catholic Health Australia. A guide for people considering their future health care. 2014. Available at: http://www.cha.org.au/images/resources/Future%20Health%20Document.pdf [verified 7 July 2015].
[46] Alzheimer’s Australia. Multicultural care workers. Available at: http://www.start2talk.org.au/multicultural_workers [verified 6 July 2015].
[47] Alzheimer’s Australia. Aboriginal health workers. Available at: http://www.start2talk.org.au/aboriginal_health_workers [verified 6 July 2015].
[48] Alzheimer’s Australia. start2talk. Available at: http://www.start2talk.org.au/ [verified 15 July 2015].
[49] Decision Assist. Palliative Care and Advance Care Planning for Aged Care. 2015. Available at: https://www.caresearch.com.au/caresearch/tabid/2583/Default.aspx [verified 15 July 2015].
[50] Decision Assist. Specific needs. 2015. Available at: http://www.caresearch.com.au/caresearch/tabid/3111/Default.aspx [verified 7 July 2015].
[51] Advance Care Directives Association Inc. Advance Care Directives Association Inc. 2014. Available at: http://www.advancecaredirectives.org.au/ [verified 6 July 2015].
[52] Graham S, Hampshire A, Hindmarsh E, Meller A, Squires B, Wall S. My health, my future, my choice: an advance care directive for New South Wales. Annandale: Advance Care Directive Association Inc.; 2013. Available at: http://www.advancecaredirectives.org.au/AdvanceCareDirectives-my-health-my-future-my-care.html [verified 6 July 2015].
[53] Meller A, Graham S, Hindmarsh E, Squires B, Wall S. A plan of care. 2nd edn. Advance Care Directive Association Inc. 2013. Available at: http://www.advancecaredirectives.org.au/AdvanceCareDirectives-a-plan-of-care.html [verified 15 July 2015].
[54] Medicare Local. Planning what I want. 2015. Available at: http://www.coasthealth.com.au/home [verified 15 July 2015].
[55] Central Coast Primary Dementia Care Network. Have a say in your health care advance care planning. 2013. Available at: http://www.coasthealth.com.au/Uploads/Documents/ACP%20Workbook_20130305095458.pdf [verified 7 July 2015].
[56] Barwon Health. MyValues. 2014. Available at: https://www.myvalues.org.au/#register [verified 6 July 2015].
[57] Program of Experience in the Palliative Approach (PEPA) Project Team. PEPA cultural considerations – providing end of life care for Aboriginal people and Torres Strait Islander people. 2014. Available at: http://www.pepaeducation.com/learning-workplace-support/cultural-considerations-providing-end-of-life-care-for-aboriginal-and-torre.aspx [verified 8 July 2015].
[58] Austin Health- Respecting patient choices advance care planning with Aboriginals and Torres Strait Islanders. 2006. Available at: https://www.caresearch.com.au/Caresearch/Portals/0/Documents/WhatisPalliativeCare/NationalProgram/RespectingPtChoices/Aboriginal_Torres_Strait_Islander_Advance_Care_Planning%20.pdf [verified 8 July 2015].
[59] NSW Department of Ageing Disability and Home Care. Taking care of business – planning ahead in Aboriginal and Torres Strait Islander Communities. 2008. Available at: https://www.adhc.nsw.gov.au/__data/assets/file/0009/228681/Taking_Care_of_Business_A5.pdf [verified 8 July 2015].
[60] Austin Health. Respecting patient choices: advance care yarning for Aboriginal and Torres Strait Islander people. 2010. Available at: http://www.pallcare.asn.au/upload/info-resources/aboriginal-palliative-care-resources/Advance_Care_Yarning_ATSI_SA.pdf [verified 8 July 2015].
[61] NSW Trustee and Guardian, Public Guardian. Planning ahead for Aboriginal people in New South Wales. Who will take care of me and my mob if something happens? 2014. Available at: http://www.bahsl.com.au/downloads/Planning-ahead-for-Aboriginal-people.pdf [verified 8 July 2015].
[62] Queensland Health. Health care providers’ handbook on Sikh patients. 2011. Available at: https://www.health.qld.gov.au/multicultural/health_workers/hbook-sikh.asp [verified 15 July 2015].
[63] Co.As.It. Advance Care Directives-three case studies from the Italian Australian Community 2015. Available at: http://coasitagedcare.org.au/wp-content/uploads/2012/08/Advance-Care-Directives-three-case-studies-in-Italian-Australian-community.pdf [verified 15 July 2015].
[64] Queensland Health. Sad news, sorry business. Guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying. 2015. Available at: https://www.health.qld.gov.au/atsihealth/documents/sorry_business.pdf [verified 8 July 2015].
[65] Australian Government Department of Health. Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander people. Practice principles. 2004. Available at: http://webarchive.nla.gov.au/gov/20140801064435/http://www.health.gov.au/Internet/main/publishing.nsf/Content/palliativecare-pubs-indig-resource.htm [verified 15 July 2015].
[66] Buddhist Council of Victoria Inc. Buddhist healthcare principles for spiritual carers. 2014. Available at: http://www.spiritualhealthvictoria.org.au/multifaith-resources [verified 15 July 2015].
[67] Cousens D. Buddhist care for the dying. 2004. Available at: http://www.buddhistcouncil.org/downloads/buddhist_care_for_dying_booklet.pdf [verified 15 July 2015].
[68] Diversicare. Chinese culture profile. 2006. Available at: http://www.diversicare.com.au/wp-content/uploads/2015/10/Chinese.pdf [verified 15 July 2015].
[69] Islamic Council of Victoria. Pastoral care in Islam – a historical and current day narrative. Available at: http://www.spiritualhealthvictoria.org.au/multifaith-resources [verified 15 July 2015].
[70] Islamic Council of Victoria. Caring for Muslim patients – a guide for health care professionals and pastoral carers. Available at: http://www.icv.org.au/index.php/publications/caring-for-muslim-patients [verified 15 July 2015].
[71] Sikh Interfaith Council of Victoria Inc. Sikh patients in hospitals – a guide for healthcare professionals. 2004. Available at: http://www.sikhinterfaithvic.org.au/Sikh%20Patients%20in%20Hospital%20Ed%202.pdf [verified 15 July 2015].
[72] Co.As.It. A profile of Italian Australian culture for aged care service providers. 2008. Available at: http://www.coasit.org.au/site/files/ul/data_text30/1234693.pdf [verified 15 July 2015].
[73] Queensland Health. Health care providers’ handbook on Hindu patients. 2011. Available at: https://www.health.qld.gov.au/multicultural/health_workers/hbook-hindu.asp [verified 15 July 2015].
[74] GOC Thesmi Community Partners Program. Palliative care for the Greek speaking community. 2015. Available at: http://www.gocstgeorge.com.au/resources/GOC%20Care%20-%20Greek%20Cultural%20and%20Linguistic%20Resources/Greek%20Cultural%20Kit/Palliative%20Care%20for%20greek%20community.pdf [verified 15 July 2015].
[75] Greek Care. Palliative care. 2015. Available at: http://www.greekcare.org.au/advice-and-information/greek-elders-in-the-service-context/attitudes-to-palliative-care/ [verified 15 July 2015].
[76] Nguyen M. Vietnamese–Australian cultural perspectives on illness and dying. Available at: http://www.spiritualhealthvictoria.org.au/multifaith-resources [verified 15 July 2015].
[77] Sikh Interfaith Council of Victoria Inc. The Sikh protocol of celebrating the life of a loved one. 2013. Available at: http://www.sikhinterfaithvic.org.au/THE_SIKH_PROTOCOL_LIFE_OF_A_LOVED_ONE_HI_RES_v16.pdf [verified 15 July 2015].
[78] Dimopoulos L. Death and dying – religious and cultural considerations. 1998. Available at: https://www.pallcarevic.asn.au/library-media/dealth-dying-religious-cultural-considerations/ [verified 7 July 2015].
[79] Palliative Care Australia. Multicultural palliative care guidelines. 1999. Available at: https://www.pallcarevic.asn.au/library-media/multicultural-palliative-care-guidelines-1999/ [verified 7 July 2015].
[80] Southern Health. Religious and cultural needs in sickness terminal illness and death guidelines for health professionals. 2003. Available at: https://www.pcvlibrary.asn.au/download/attachments/2294356/Southern%20Health%20Guidelines%20for%20Health%20Professionals.pdf?version=1&modificationDate=1324237608006&api=v2 [verified 7 July 2015].
[81] Migrant Information Centre (Eastern Melbourne). Palliative Care for culturally and linguistically diverse communities. 2009. Available at: http://miceastmelb.com.au/wp-content/uploads/2016/02/Palliative_care_resource_for_workersAug2009.pdf [verified 7 July 2015].
[82] Loddon Mallee Regional Palliative Care Consortium. An outline of different cultural beliefs at the time of death. 2011. Available at: http://lmrpcc.org.au/admin/wp-content/uploads/2011/07/Customs-Beliefs-Death-Dying.pdf [verified 7 July 2015].
[83] Babacan H, Obst P. Death, dying and religion: Ethnic Communities Council of Queensland. 1998. Available at: http://www.multiculturalaustralia.edu.au/doc/babacan_death_dying_religion.pdf [verified 7 July 2015].
[84] Victorian Aboriginal Community Controlled Health Organisation Inc. (VACCHO). Understanding the palliative journey. A guide for individuals, carer communities and family. 2014. Available at: https://www.pcvlibrary.asn.au/download/attachments/2294466/VACCHO_PALLIATIVE_CARE_GUIDE_2014.pdf?version=1&modificationDate=1406002861609&api=v2 [verified 8 July 2015].
[85] Australian Bureau of Statistics. Estimates of Aboriginal and Torres Strait Islander Australians. 2011. Available at: http://www.abs.gov.au/ausstats/abs@.nsf/mf/3238.0.55.001 [verified 15 July 2015].
[86] Advance Care Planning Australia. Advance care planning in different healthcare settings 2015. Available at: http://advancecareplanning.org.au/advance-care-planning/for-professionals/advance-care-planning-in-different-healthcare-settings/ [verified 26 May 2015].
[87] Decision Assist. Advance care planning in general practice. 2015. Available at: https://www.caresearch.com.au/Caresearch/Portals/0/Decision-Assist-Resources/GP%20Ed%20ACP%20Resources/Decision_Assist_ACP_GP_Guidance_MBS_Items_Sep_2015.pdf [verified10 December 2016].