End of Life Doulas and caring for the grieving after the death of a loved one

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End of Life Doulas and caring for the grieving after the death of a loved one

Author

A H Mallon¹

Organisation

Western Sydney University¹

Year

2018

Excerpt

A support lynchpin for loved ones and compassionate community care networks with after-death care, grief, and the journey of bereavement in Australia’s individualised 21st century society.

Introduction: As our baby-boomer generation ‘matures’, we find that one in six of us are now over 65, compared to one in seven in 2011 and only one in 25 in 1911. ABS, 2017 End of Life (EOL) Doulas in Australia are a growing field of practitioners who support those with a terminal or life-limiting diagnosis, in both home-based care situations as well as medical environments. EOL Doulas also work with the families and care networks of their clients and many EOL Doulas continue to work with family and loved ones after their client’s death, for after-death body care, funeral and memorial ceremonies, and ongoing support and presence for several months afterwards as the processes of grief and mourning unfold. Although death is rather sanitised and removed from both personal and public spaces ADDIN EN.CITE <EndNote><Cite><Author>Bauman</Author><Year>2012</Year><RecNum>750</RecNum><DisplayText>(Bauman, 2012, Jalland, 2006, <style size="10">2002</style>)</DisplayText><record><rec-number>750</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1526433634">750</key></foreign-keys><ref-type name="Book">6</ref-type><contributors><authors><author>Bauman, Zygmunt</author></authors></contributors><titles><title>Liquid Modernity</title></titles><edition>2nd</edition><dates><year>2012</year></dates><pub-location>Cambridge, Malden</pub-location><publisher>Polity Press</publisher><urls></urls></record></Cite><Cite><Author>Jalland</Author><Year>2006</Year><RecNum>745</RecNum><record><rec-number>745</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525758773">745</key></foreign-keys><ref-type name="Book">6</ref-type><contributors><authors><author>Jalland, Pat</author></authors></contributors><titles><title>Changing ways of DEATH in twentieth century Australia </title></titles><dates><year>2006</year></dates><pub-location>Sydney</pub-location><publisher>UNSW Press</publisher><urls></urls></record></Cite><Cite ExcludeAuth="1"><Author>Jalland</Author><Year>2002</Year><RecNum>755</RecNum><record><rec-number>755</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1526443418">755</key></foreign-keys><ref-type name="Book">6</ref-type><contributors><authors><author>Jalland, Pat</author></authors></contributors><titles><title>Australian Ways of Death - A Social and Cultural History 1840-1918</title></titles><dates><year><style face="normal" font="default" size="10">2002</style></year></dates><pub-location>Oxford, New York</pub-location><publisher>Oxford University Press</publisher><urls></urls></record></Cite></EndNote>(Bauman, 2012, Jalland, 2006, 2002), it is imperative that we become familiar with the terminology of death, and the process of grief and mourning as both personal and community experiences ADDIN EN.CITE <EndNote><Cite><Author>Able</Author><Year>2018</Year><RecNum>665</RecNum><DisplayText>(Able, 2018, Jalland, 2006, Kellehear, 2013)</DisplayText><record><rec-number>665</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1521000553">665</key></foreign-keys><ref-type name="Journal Article">17</ref-type><contributors><authors><author>Able, Julian</author></authors></contributors><titles><title>Compassionate communities and end-of-life care</title><secondary-title>Clinical Medicine</secondary-title></titles><periodical><full-title>Clinical Medicine</full-title></periodical><pages>6-8</pages><volume>18</volume><number>1</number><dates><year>2018</year></dates><urls></urls></record></Cite><Cite><Author>Jalland</Author><Year>2006</Year><RecNum>745</RecNum><record><rec-number>745</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525758773">745</key></foreign-keys><ref-type name="Book">6</ref-type><contributors><authors><author>Jalland, Pat</author></authors></contributors><titles><title>Changing ways of DEATH in twentieth century Australia </title></titles><dates><year>2006</year></dates><pub-location>Sydney</pub-location><publisher>UNSW Press</publisher><urls></urls></record></Cite><Cite><Author>Kellehear</Author><Year>2013</Year><RecNum>663</RecNum><record><rec-number>663</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1520999464">663</key></foreign-keys><ref-type name="Journal Article">17</ref-type><contributors><authors><author>Kellehear, Allan</author></authors></contributors><titles><title>Compassionate communities: end-of-life care as everyone's responsibility</title><secondary-title>QJM: An International Journal of Medicine</secondary-title></titles><periodical><full-title>QJM: An International Journal of Medicine</full-title></periodical><pages>1071-1075</pages><volume>106</volume><number>12</number><dates><year>2013</year></dates><urls></urls></record></Cite></EndNote>(Able, 2018, Jalland, 2006, Kellehear, 2013). Furthermore, as a society we need to be reacquainted with death and grieving; we can garner multiple benefits from objective support away from the entrenched corporate funeral framework ADDIN EN.CITE <EndNote><Cite><Author>Smith</Author><Year>1995</Year><RecNum>656</RecNum><DisplayText>(Smith, 1995)</DisplayText><record><rec-number>656</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1421125735">656</key></foreign-keys><ref-type name="Book">6</ref-type><contributors><authors><author>Smith, Dorothy</author></authors></contributors><titles><title>The Conceptual Practices of Power</title></titles><dates><year>1995</year></dates><pub-location>Boston, Toronto</pub-location><publisher>Northeastern University PressUniversity of Toronto Press</publisher><urls></urls></record></Cite></EndNote>(Smith, 1995) as we re-skill as a society around bereavement ADDIN EN.CITE ADDIN EN.CITE.DATA 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(Cant, 2015, Noonan et al., 2016, van der Laan and Moerman, 2017) 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. As death has been co-opted by a highly corporatised funeral industry ADDIN EN.CITE <EndNote><Cite><Author>Elle</Author><Year>2017</Year><RecNum>737</RecNum><DisplayText>(Elle, 2017, IBISWorld, 2017)</DisplayText><record><rec-number>737</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525750031">737</key></foreign-keys><ref-type name="Web Page">12</ref-type><contributors><authors><author>Hunt. Elle</author></authors></contributors><titles><title>Funeral pricing comparison website targeted with legal threats</title><secondary-title>Business (Australia)</secondary-title></titles><volume>2018</volume><number>01/02/2018</number><dates><year>2017</year></dates><pub-location>Marrackville, NSW</pub-location><publisher>Guardian News and Media Limited</publisher><urls><related-urls><url>https://www.theguardian.com/australia-news/2017/may/30/funeral-industry-accused-of-opportunistic-pricing-and-legal-threats</url></related-urls></urls></record></Cite><Cite><Author>IBISWorld</Author><Year>2017</Year><RecNum>732</RecNum><record><rec-number>732</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525748042">732</key></foreign-keys><ref-type name="Report">27</ref-type><contributors><authors><author>IBISWorld</author></authors><tertiary-authors><author>IBISWorld</author></tertiary-authors></contributors><titles><title>Funeral Directors, Crematoria and Cemetaries in Australia</title><alt-title>Graveyard shifts: Changing consumer preferences towards cremations are reducing revenue to ash</alt-title></titles><pages>1-31</pages><number>S9520</number><dates><year>2017</year><pub-dates><date>October 2017</date></pub-dates></dates><pub-location>Australia</pub-location><publisher>IBISWorld</publisher><urls></urls></record></Cite></EndNote>(Elle, 2017, IBISWorld, 2017) and the biomedical model of hospitals is frequently tied to this corporate structure ADDIN EN.CITE <EndNote><Cite><Author>Health</Author><Year>2014</Year><RecNum>747</RecNum><DisplayText>(Health, 2014, MHQ, 2017)</DisplayText><record><rec-number>747</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525760182">747</key></foreign-keys><ref-type name="Government Document">46</ref-type><contributors><authors><author>NSW Government Health</author></authors><secondary-authors><author>Social Work Services</author></secondary-authors></contributors><titles><title>When Someone Dies in Hospital - a Practical Guide</title></titles><pages>1-14</pages><dates><year>2014</year></dates><pub-location>Western Sydney</pub-location><publisher>The Palliative Care Service and the Social Work Departments of Auburn, Blacktown, Mt Druitt and Westmead Hospitals</publisher><urls><related-urls><url>file:///C:/Users/Ian/Downloads/WSP-249.When%20someone%20dies%20in%20hospitalpdf%20.pdf</url></related-urls></urls></record></Cite><Cite><Author>MHQ</Author><Year>2017</Year><RecNum>746</RecNum><record><rec-number>746</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525759969">746</key></foreign-keys><ref-type name="Web Page">12</ref-type><contributors><authors><author>MHQ</author></authors></contributors><titles><title>Following the death of a loved one</title></titles><volume>2017</volume><number>14/12/2017</number><dates><year>2017</year></dates><pub-location>Brisbane</pub-location><publisher>Mater Hospital Queensland</publisher><urls><related-urls><url>Mater Hospital Queensland</url></related-urls></urls></record></Cite></EndNote>(Health, 2014, MHQ, 2017) another advantage of engaging EOL Doulas is that they are well-versed in a spectrum of expert knowledges and so are able to provide impartial information saving a recently bereaved person energy and money. The impartial EOL Doula position in terms of knowledge and skills is of particular benefit for people who are faced with an unexpected death – e.g.: death by suicide, accident, or acute medical event ADDIN EN.CITE <EndNote><Cite><Author>CHOICE</Author><Year>2016</Year><RecNum>733</RecNum><DisplayText>(CHOICE, 2016, van der Laan and Moerman, 2017)</DisplayText><record><rec-number>733</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525749202">733</key></foreign-keys><ref-type name="Web Page">12</ref-type><contributors><authors><author>CHOICE </author></authors></contributors><titles><title>Lifting the lid on funerals - CHOICE examines your funeral options, and the impact on your pocket and the planet</title></titles><volume>2018</volume><number>08/05/2018</number><dates><year>2016</year><pub-dates><date>30/09/2016</date></pub-dates></dates><pub-location>Marrickville</pub-location><publisher>CHOICE Australia</publisher><urls><related-urls><url>https://www.choice.com.au/health-and-body/healthy-ageing/ageing-and-retirement/articles/diy-funerals-and-coffins</url></related-urls></urls></record></Cite><Cite><Author>van der Laan</Author><Year>2017</Year><RecNum>731</RecNum><record><rec-number>731</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525313726">731</key></foreign-keys><ref-type name="Report">27</ref-type><contributors><authors><author>van der Laan, Sandra</author><author>Moerman, Lee</author></authors><tertiary-authors><author>The University of Sydney </author></tertiary-authors><subsidiary-authors><author>The University of Sydney Business School</author></subsidiary-authors></contributors><titles><title>It's Your Funeral: An Investigation of Death Care and the Funeral Industry in Australia</title></titles><pages>44</pages><number>78-1-74210-409-6</number><dates><year>2017</year></dates><pub-location>Sydney</pub-location><publisher>The University of Sydney</publisher><urls><related-urls><url>http://sydney.edu.au/business/__data/assets/pdf_file/0009/310140/Its_Your_Funeral_Report.pdf</url></related-urls></urls></record></Cite></EndNote>(CHOICE, 2016, van der Laan and Moerman, 2017). Education of medical practitioners, individuals, health service providers, and community networks as to the potential benefits of EOL Doulas is essential for the general public to break the entrenched corporate funeral industry’s “inelastic” ADDIN EN.CITE <EndNote><Cite><Author>CHOICE</Author><Year>2016</Year><RecNum>733</RecNum><DisplayText>(CHOICE, 2016)</DisplayText><record><rec-number>733</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525749202">733</key></foreign-keys><ref-type name="Web Page">12</ref-type><contributors><authors><author>CHOICE </author></authors></contributors><titles><title>Lifting the lid on funerals - CHOICE examines your funeral options, and the impact on your pocket and the planet</title></titles><volume>2018</volume><number>08/05/2018</number><dates><year>2016</year><pub-dates><date>30/09/2016</date></pub-dates></dates><pub-location>Marrickville</pub-location><publisher>CHOICE Australia</publisher><urls><related-urls><url>https://www.choice.com.au/health-and-body/healthy-ageing/ageing-and-retirement/articles/diy-funerals-and-coffins</url></related-urls></urls></record></Cite></EndNote>(CHOICE, 2016) model, permitting for greater transparency of costs and options ADDIN EN.CITE <EndNote><Cite><Author>Clarke</Author><Year>2018</Year><RecNum>735</RecNum><DisplayText>(Clarke, 2018, Hely, 2018)</DisplayText><record><rec-number>735</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525749710">735</key></foreign-keys><ref-type name="Web Page">12</ref-type><contributors><authors><author>Clarke, Carrington</author></authors></contributors><titles><title>Invocare dominating funeral industry means customers not getting good deals, academic says</title></titles><volume>2018</volume><number>30/03/2018</number><dates><year>2018</year></dates><pub-location>Sydney</pub-location><publisher>ABC News</publisher><urls><related-urls><url>http://www.abc.net.au/news/2018-03-28/critics-claim-a-lack-of-competition-in-funeral-industry/9594044</url></related-urls></urls></record></Cite><Cite><Author>Hely</Author><Year>2018</Year><RecNum>738</RecNum><record><rec-number>738</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1525750266">738</key></foreign-keys><ref-type name="Web Page">12</ref-type><contributors><authors><author>Hely, Susan</author></authors></contributors><titles><title>The cost of dying: how transparency can make funerals less costly</title><secondary-title>My Money</secondary-title></titles><volume>2018</volume><number>15/03/2018</number><dates><year>2018</year></dates><pub-location>Sydney</pub-location><publisher>Bauer Media Pty Ltd</publisher><urls><related-urls><url>http://moneymag.com.au/cost-of-dying-funerals/</url></related-urls></urls></record></Cite></EndNote>(Clarke, 2018, Hely, 2018), and easing a time of great sorrow for consumers. There is international evidence that support for those who are lonely after the death of a loved one, arguably an inevitable outcome of individualisation ADDIN EN.CITE <EndNote><Cite><Author>Beck</Author><Year>2002</Year><RecNum>754</RecNum><DisplayText>(Beck and Beck-Gernsheim, 2002)</DisplayText><record><rec-number>754</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1526435317">754</key></foreign-keys><ref-type name="Book">6</ref-type><contributors><authors><author>Beck, Ulrich</author><author>Beck-Gernsheim, Elisabeth</author></authors></contributors><titles><title>Individualization: Institutionalized Individualism and Its Social and Political Consequences</title></titles><dates><year>2002</year></dates><pub-location>London, Thousand Oaks, New Delhi</pub-location><publisher>SAGE Publications Ltd</publisher><urls></urls></record></Cite></EndNote>(Beck and Beck-Gernsheim, 2002) can be effectively provided and facilitated when EOL Doulas are engaged ADDIN EN.CITE <EndNote><Cite><Author>Fukuzawa</Author><Year>2017</Year><RecNum>676</RecNum><DisplayText>(Fukuzawa and Kondo, 2017, Goddard, 2016)</DisplayText><record><rec-number>676</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1521003605">676</key></foreign-keys><ref-type name="Journal Article">17</ref-type><contributors><authors><author>Fukuzawa, Rieko Kishi </author><author>Kondo, Kazuko Takenaga</author></authors></contributors><titles><title>A holistic view from birth to the end of life: end-of-life doulas and new developments in end-of-life care in the West</title><secondary-title>International Journal of Palliative Nursing</secondary-title></titles><periodical><full-title>international Journal of Palliative Nursing</full-title></periodical><pages>612-619</pages><volume>23</volume><number>12</number><dates><year>2017</year></dates><urls></urls></record></Cite><Cite><Author>Goddard</Author><Year>2016</Year><RecNum>677</RecNum><record><rec-number>677</rec-number><foreign-keys><key app="EN" db-id="wse55tz2o9v2d2err96xsst4fezrvedrtvat" timestamp="1521004158">677</key></foreign-keys><ref-type name="Thesis">32</ref-type><contributors><authors><author>Goddard, Colleen</author></authors><tertiary-authors><author>Dr Miguel Guilarte</author></tertiary-authors></contributors><titles><title>The sacred language of objects: How end-of-life doulas experience the use of transitional objects as a significant part of the dying process</title><secondary-title>Human Development</secondary-title></titles><pages>153</pages><volume>PhD</volume><dates><year>2016</year></dates><pub-location>Santa Barbara</pub-location><publisher>Fielding Graduate University</publisher><isbn>9781339644431</isbn><work-type>Dissertation</work-type><urls></urls></record></Cite></EndNote>(Fukuzawa and Kondo, 2017, Goddard, 2016), making an enormous difference to the quality of life for the bereaved. Objectives: To explore the intersections of compassionate community development/facilitation, death literacy, interruptions to the corporate funeral model ADDIN EN.CITE ADDIN EN.CITE.DATA 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(IBISWorld, 2017, Keys and Cottle, 2004, van der Laan and Moerman, 2017) 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, public education, and support for grieving individuals and networks at the time of someone’s death and afterwards. Ideally, this exploration will interest academics (particularly sociology, health, medicine, anthropology, economics, and cultural theorists) as well as end of life workers in general. To foster discourse and discussion around the idea of a spectrum of continuity of care and social education/skill-building made possible by EOL Doulas that is outside of both the biomedical and funerary industry frameworks.

Approach: By engaging with risk, feminist standpoint, and individualisation theories and considering the role of EOL Doulas in fostering and maintaining compassionate communities, educating the public, and implementing a full spectrum of continuity of care for clients and their loved ones well past the point of death, a fresh perspective on support and skill-building for the grieved and the bereaved in our communities is possible.

Practice Implications: Individuals and families are offered a fuller range of support options, intrinsically linked to death literacy and skills around EOL options and compassionate community building via the EOL Doula as lynchpin of after-death care. Bereaved community members will then be able, in turn, to pass on skills, knowledge and support practices learned with EOL Doulas, making the community overall richer and better-sustaining as a social organism around end of life. Pressure will be relieved from palliative care workers and allied health staff, and health provider staff will not have to be the only point of contact for loved ones for enquiries that are not within the purview of medical service work.

Conclusions: The rapidly growing field of EOL Doulas can be better understood by communities and health service providers in order to facilitate support for the grieving and bereaved among us, relieving pressure on palliative care staff and allied health workers whilst simultaneously educating and empowering the general community.