Area 3: Altruism and Informal End-of-Life Caregiving

 

Despite the centrality of altruism to community palliative care services (Morris et al. 2015), empirical studies of informal caregivers rarely incorporate a philosophically informed conception of altruism. Increasingly, new approaches to end-of-life care rely on the efficacy of community caregiving at the end of life to reduce the burden and burnout of caregivers (Lambert-South and Elton 2017; Van Scoy et al. 2016; Van Scoy et al. 2017; Miller-Lewis et al. 2018; Tieman et al. 2018). Such programs have the potential to improve the quality of life of the dying and reduce strain on family caregivers, but their ultimate success relies on sustained altruistic motivation among community members. However, to what extent can we expect this? In this study, we explore theoretical understandings of altruism and how this can be applied to increase the understanding and sustainability of community care at the end of life. 

Area 3 will focus on resolving conceptual ambiguity regarding altruistic motivation as this relates to informal caregiving at the end of life.

 

Phase 1:

Literature Reviews

Goal : Use critical literature reviews and philosophical conceptual analysis to formulate and publish theoretically informed accounts of altruism in end-of-life caregiving.

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Evolutionary biologists typically define “altruism” as action done for another at a cost to the self. In contrast, sociologists and psychologists focus on the motivation behind altruistic action. Research interpreted through an evolutionary lens seems to imply that all actions are done to further survival and fitness, but this overlooks the human ability to overcome this genetic predisposition to intend and carry out altruistic action (May n.d.). Philosophical discourses also lack consensus on the nature of altruistic motivation. In the tradition of Hobbes and Bentham, psychological egoists suggest that all actions are ultimately motivated by self-interest (May n.d.). However, most contemporary philosophers reject this view, noting that just because impulses belong to the self does not mean they function only to bring happiness to the self (May n.d.). Psychological altruists suggest that altruistic action is motivated by empathy, an intrinsic reaction to perceived need combined with a desire to reduce the pain of others (de Waal 2008; Agosta n.d.; Warneken and Tomasello 2006). As seen from the multiple conceptions of altruism discussed here, there is an apparent need for clarity regarding the extent to which self-interest can co-mingle with altruistic motivation.

Past empirical work seems to show that empathy and self-interest can co-exist as motivators for caring action (Claxton-Oldfield et al. 2012). Hospice volunteers are mainly motivated by compassion toward people in need, but also by self-directed interests in learning, fostering social relationships, increasing self-esteem, and furthering career goals (Planalp and Trost 2009). Nocon and Pearson make similar claims about the motivations of friends and neighbors involved in supporting the dying.


Phase 2: Narrative Interviews

Goal : Use narrative methods to observe and interpret informal end-of-life caregivers’ lived experiences of altruistic motivation.

Our narrative interviews will further clarify how empathy, self-interest and altruism are currently involved in informal caregivers’ motivations. Caregivers in this study could include persons with experience caring for dying individuals within informal, “outer circle” care networks, and hospice volunteers.

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Phase 3:

Research Integration

Goal : Use the results of the literature review and interviews to provide conceptual resources to promote compassionate communities

The integration of the conceptual and empirical results from Area 3 will inform the generation of strategic guidelines to attract and support informal end-of-life carers and, ultimately, help develop companionate communities aimed at diversifying and broadening the support networks of the dying. The framework will aim to explain how we can motivate others to participate in compassionate communities, and to what extent altruism and self-interest play a part in encouraging sustained end-of-life caring behaviors.

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Phase 4:

Guidelines to Inform Solutions

Goal : Use the results of the literature review and interviews to provide conceptual resources to promote compassionate communities

Findings from the literature review on the empirical and theoretical considerations of the role of altruistic and self-interested motivators to care for others at the end-of-life will be combined with qualitative results from interviews with informal caregivers. The results will help empirical researchers to better operationalize the term “altruism” (and related terms), and will inform ongoing theoretical discussions concerning the nature of altruistic motivation. The work of this phase will also provide interdisciplinary researchers with a third example of the benefits of joining philosophical-conceptual research with social-scientific study to enrich our shared knowledge base.

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 Our Collaborators

In addition to our main researchers the following people will be close collaborators for Area 3;

Sheli O’Connor

Sheli O’Connor is the Community Engagement Project Lead for Hospice Waterloo Region, focussing on public engagement about death, dying, and grief. Her goal is to spark conversation on this taboo topic so that we can better support our family friends, colleagues, and neighbours where they live, work, pray, and play. Sheli holds a Master of Social Work degree in community development and brings 30 plus years of experience collaborating with the public and community partners. She strongly believes that “if it doesn’t happen in the community it doesn’t happen” and will continue to focus on increasing public understanding and developing programs that build our confidence in caring for each other.

Dr. Lisa Meschino

Lisa Meschino (PhD) is a Curriculum Lead and Research Associate at UHN’s NORC Innovation Centre. With a background in cognitive neuroscience, philosophy, and visual arts, she facilitates different community programs for aging in place. She specializes in relational approaches for engaging older adults, persons with dementia, and professional care partners.

Reference List

Agosta, Lou. “Empathy and Sympathy in Ethics.” Internet Encyclopedia of Philosophy, https://iep.utm.edu/emp-symp/

Claxton-Oldfield, Stephen, et al. “A Study of the Motivations of British Hospice Volunteers.” American Journal of Hospice & Palliative Medicine, vol. 30, no. 6, 2013, pp. 579–86, https://doi.org/10.1177/1049909112462057.

de Waal, Frans B. M. “Putting the Altruism Back into Altruism : The Evolution of Empathy.” Annual Review of Psychology, vol. 59, no. 1, Annual Reviews, 2008, pp. 279–300, doi:10.1146/annurev.psych.59.103006.093625.

Lambert-South, Andrea; Elton, Jessica. “Contradictions and Promise for End of Life Communication among Family and Friends: Death over Dinner Conversations.” Behavioural Sciences, vol. 7, no.24, 2017, pp. 1-12.

May, Joshua. “Psychological Egoism.” Internet Encyclopedia of Philosophy, https://iep.utm.edu/psychego/#H2

Miller-Lewis, Lauren; Tieman, Jennifer; Rawlings, Deb; Parker, Deborah; Sanderson, Christine. “Can Exposure to Online Conversations About Death and Dying Influence Death Competence? An Exploratory Study Within an Australian Massive Open Online Course.” Journal of Death and Dying, 2018, pp.1-30.

Morris, Sara M., et al. “Hospice Volunteers: Bridging the Gap to the Community?” Health & Social Care in the Community, vol. 25, no. 6, 2015, pp. 1704–1713., doi:10.1111/hsc.12232.

Planalp, Sally, and Melanie Trost. “Motivations of Hospice Volunteers.” American Journal of Hospice and Palliative Medicine, vol. 26, no. 3, 2009, pp. 188–192., doi:10.1177/1049909108330030.

Tieman, Jennifer; Miller-Lewis, Lauren; Rawlings, Deb; Parker, Deborah; Sanderson, Chris. “The Contributions of a MOOC to community discussions around death and dying. BMC Palliative Care, vol. 17, 2018, pp. 1-16.

Van Scoy, Lauren Jodi; Reading, Jean M.; Scott, Allison, M.; Green, Michael J.; Levi, Benjamin H. “Conversation Game Effectively Engages Groups of Individuals in Discussions about Death and Dying. Journal of Palliative Medicine, vol. 19, no. 6, 2016, pp.661-667.

Van Scoy, Lauren J., et al. “Community Game Day: Using an End-of-Life Conversation Game to Encourage Advance Care Planning.” Journal of Pain and Symptom Management, vol. 54, no. 5, 2017, pp. 680–691., doi:10.1016/j.jpainsymman.2017.07.034.

Warneken, Felix, and Michael Tomasello. “Altruistic Helping in Human Infants and Young Chimpanzees.” Science (American Association for the Advancement of Science), vol. 311, no. 5765, American Association for the Advancement of Science, 2006, pp. 1301–03, doi:10.1126/science.1121448.