Amy Colver, LCSW
Melody Griffith, MSW, LMSW, OSW-C
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Engaging Research to Inform Practice: Legacy-Building Literature Review
Tell me, what is it you plan to do with your one wild and precious life?
Facing death often brings a variety of concerns to mind for those with a terminal cancer diagnosis—managing pain and symptoms, communicating with family members, finding a balance between pursuing treatment and quality of life, and wondering how one might be remembered. As social workers striving to provide skilled palliative care, we aim toward enhancing our patients’ quality of life, reducing emotional and existential distress, and supporting caregivers and surviving loved ones. Among these topics it seems imperative to consider how we engage with patients around the importance of legacy building. The purpose of this review is to explore how and which legacy-centered interventions best serve patients and their families in an outpatient cancer institute or palliative care program.
When preparing to discuss legacy building with patients and their families, several important questions come to mind.
Defining Legacy Work
Defining legacy can be a difficult task. In reviewing the literature, it is clear that a universal definition does not exist. There are a number of perspectives on what is actually meant by “legacy” and how it may be relevant. Legacy, in its simplest form, is about creating something to leave behind. In taking a deeper look, we see how people engaging in legacy building are doing dichotomous work by acknowledging their mortality while simultaneously thinking about who they are and how they are living life. Hunter and Rowles (2005) discuss the importance of legacy as something that allows death to be more approachable by offering a type of immortality. Foster, Dietrich, Friedman, Gordon and Gilmer (2012) define legacy making “as doing or saying something that is remembered, including both intentional and serendipitous legacies” (p. 573). In research and practical experience we see there are numerous ways to express legacy including biological, genetic, historical, intergenerational, material, financial, symbolic and personal or legacy of values.
Review of Research Findings
Research appears to offer support for this important and deeply personal topic with a potential for improving quality of life for patients at the end of life. The literature suggests a few considerations for clinical practice around timing, intervention style and the importance of respecting personal interpretations of legacy. While significant research and empirical data are still lacking, many of the studies show high patient satisfaction with legacy interventions (Allen, Hilgeman, Ege, Shuster, & Burgio, 2008; Chochinov, Hack, Hassard, Kristjanson, McClement, & Harlos, 2005; and Vuksanovic, Green, Dyck, & Morrissey, 2017). Allen et al. showed that for their participants, participating in legacy work induced no feelings of discomfort. Many of the studies also highlight the importance of patient growth throughout their cancer experience and suggest that legacy work provides an opportunity to demonstrate this (Garlen, Butler, Hunter, 2008, Siegel, & Spiegel, 2011;). Research advises the importance of timing, recognizing the value of assisting patients in this work while they are healthy enough to participate. Coyle (2006) supports this, saying legacy work is “urgent and time sensitive” (p. 272). Therefore, it is encouraging that many of the studies offered short-term interventions that could easily be performed by social workers in an outpatient oncology or palliative care setting such as Dignity Therapy or the Outlook program.
Evidence indicates that patients benefit from engaging in this work using an oral interview format with a trained clinician (Chochinov et al., 2005; Steinhauser, Alexander, Byock, George, Olsen, Tulsky, 2008; Steinhauser, Alexander, Byock, George, & Tulsky, 2009, Vuksanovic et al., 2017). This suggests the value of clinicians offering patients direct interventions rather than simply providing written materials or information for a patient to complete independently. Studies also show the benefit offered when including family members in this process (Allen et al., 2008, Garlan et al., 2011). Additionally, McKeown, Clarke, and Repper’s (2006) exploration of life story work in dementia units supports the importance of life story work as a companionship activity with family. Still, Hunter (2008) reminds us that sometimes family may not be ready or able to engage in this conversation with their ill loved one. It is important to be aware of this and support patients by walking with the individual as they engage in the work they identify as important, even when unable to share this with family.
Practical Implications of Legacy Work for Clinicians
It is imperative that social workers understand the many ways legacy can be represented, including biological, material and legacy of values. This review demonstrates how dynamic legacy work is and may assist social workers in connecting patients with the legacy work they define as important. In my personal clinical practice, I am eager to assist terminally ill parents of young children in exploring legacy outlets. While this may be an important outlet for some, it may not fit or honor the life work of others—e.g., the patient who views their financial legacy as meaningful and beneficial to their family or those who are comforted by the thought that their family will be able to pass on their memory through stories of their life without a tangible record. Rather than narrowing legacy to a purely creative expression, social workers can align with patients to see how they are expressing their perspective on legacy, remembering that some patients may feel overwhelmed by the process and may find value in conversations that highlight the fact that they may already be participating in legacy work. Clinicians can support patients in choosing a legacy activity that is most meaningful to them by presenting a range of options and following their cues on values and readiness for these discussions.
Role of Social Media in Legacy Work
Social media is a modern forum for sharing personal experiences around loss and legacy, but it is also an area of focus missing from the research. Many have likely seen a video of a terminally ill father dancing with his young child to be used in the future, should the child get married. Yet, the legacy research to date has not investigated the use of this platform or looked into ways in which social media has increased awareness and the inspiration to engage in legacy work.
Taubert, Watts, Boland and Radbruch (2014) explored the use and role of social media in legacy building as relevant to palliative care social workers, though not using quantitative or qualitative research. They suggest social media has become a safe place to share personal experiences around illness, death and dying. Though their work looked specifically at microblogging, one could imagine the many ways various social media sites could offer forums for both intentional and spontaneous legacy work. The article encourages palliative care social workers to be mindful of the ways this could be a meaningful outlet for patients, particularly as social media may resonate with younger generations.
It is clear from this literature review that there is a role for legacy work, while also demonstrating the need for further research on this topic to determine benefits for patients and their loved ones. Anecdotally and through the highlighted research, there is reason to believe this is an important and beneficial task for patients facing end of life. Palliative care and oncology social workers can play a key role in supporting patients and families through education, and by offering and providing legacy work interventions.
Allen, R. S., Hilgeman, M. M., Ege, M. A., Shuster, J. L. Jr., & Burgio, L. D. (2008). Legacy activities as interventions approaching the end of life. Journal of Palliative Medicine, 11(7), 1029–1038. https://doi.org/10.1089/jpm.2007.0294
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., Mcclement, S., & Harlos, M. (2005). Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23(24), 5520-5525. http://ascopubs.org/doi/pdf/10.1200/JCO.2005.08.391
Coyle, N. (2006) . The hard work of living in the face of death. Journal of Pain and Symptom Management, 32(3), 266–274. http://dx.doi.org/10.1016/j.jpainsymman.2006.04.003
Foster, T. L, Dietrich M. S., Friedman D. L., Gordon J. E., and Gilmer M. J. (2012). National survey of children’s hospitals on legacy-making activities. Journal of Palliative Medicine 15(5), 573-578. https://doi.org/10.1089/jpm.2011.0447
Garlan, R. W., Butler, L. D., Siegel, E. R. A., & Spiegel, D. (2011). Perceived benefits and psychosocial outcomes of a brief existential family intervention for cancer patients/survivors. Omega-Journal of Death and Dying, 62(3), 243-268. https://doi.org/10.2190/OM.62.3.c
Hunter, E.G. (2008). The legacy of cancer: The importance of passing on beliefs, values, and positive health behaviors for women with cancer. Journal of Psychosocial Oncology, 29(1): 102–121. http://dx.doi.org/10.1300/J077v26n01_07
Hunter, E. G., & Rowles, G. D. (2005). Leaving a legacy: Toward a typology. Journal of Aging Studies, 19J(3), 327-347. https://doi.org/10.1016/j.jaging.2004.08.002
McKeown, J., Clarke, A., & Repper, J. (2006), Life story work in health and social care: Systematic literature review. Journal of Advanced Nursing, 55, 237–247. doi:10.1111/j.1365-2648.2006.03897.x
Steinhauser, K.E., Alexander, S.C., Byock, I.R., George L.K., Olsen M.K., & Tulsky J. A. (2008). Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? A pilot randomized control trial. Journal of Palliative Medicine, 11, 1234–1240. doi: 10.1089/jpm.2008.0078
Steinhauser, K. E., Alexander, S. C., Byock, I. R., George, L. K., & Tulsky, J. A. (2009). Seriously ill patients' discussions of preparation and life completion: An intervention to assist with transition at the end of life. Palliative & Supportive Care, 7(4), 393-404. doi:10.1017/S147895150999040X
Taubert M., Watts G., Boland J., & Radbruch L. (2014). Palliative social media. BMJ Supportive & Palliative Care, 4, 13-18. doi:10.1136/bmjspcare-2013-000584
Vuksanovic, D., Green, H. J., Dyck, M., & Morrissey, S. A. (2017). Dignity therapy and life review for palliative care patients: A randomized controlled trial. Journal of Pain and Symptom Management, 53(2), 162-170. doi:10.1016/j.jpainsymman.2016.09.005
About the Author
Rebekah Wyse, MSW, LICSWTrue Center & Multidisciplinary Clinic
Swedish Cancer Institute
Rebekah Wyse, MSW, LICSWTrue Center & Multidisciplinary Clinic
Swedish Cancer Institute
ArticlesEngaging Research to Inform Practice: Legacy-Building Literature Review