Family Communication at the End of Life: Breaking the Taboo Through Entertainment Media

Introduction

Death is an inevitable human experience that each one of us will experience, either through the death of a loved one or our own eventual end-of-life. Research supports that end-of-life is a process (Murray, et al., 2005) and quality communication among patients, family members, and health care providers is essential to positive outcomes (Keeley, 2007; Jackson et al., 2012; Tenzek & Depner, 2017). Throughout the death and dying process there are many opportunities for presence through quality communication, including at the moment of diagnosis, conversations about place of care, and moment of death (Jackson et al., 2012; Tenzek & Depner, 2017). The more engaged and present individuals and their family members are throughout the death and dying process, the closer the relationships between the dying and their surviving family members can be (Keeley & Yingling, 2007). This strengthened relationship continues after death and can assist the surviving family members through their bereavement process. Beginning the end-of-life conversations early also provides opportunities for gained knowledge regarding one’s preferences and advance care planning (ACP), which outlines one’s final wishes for end-of-life care and decision-making. Encouraging conversations about end-of-life preferences before a health crisis occurs and decisions must be made has a number of positive outcomes, including enhancing families’ confidence in end-of-life choices, reduction in suffering, and leading to a greater agreement between families’ and patients’ preferences for dying and post-death arrangements (Gardner & Kramer, 2009; Meeker & Jezewski, 2005).

Ultimately alleviating stress and creating greater meaning for all involved when a loved one is dying. In contrast, when end-of-life issues are avoided and not addressed prior to one’s death, the quality of end-of-life care and well-being of the surviving family members is compromised (Tilden et al., 2001). With the opportunities to engage in ACP one may expect people would take the opportunity to fill out forms and have these important conversations. Unfortunately, this is not the case. Over the past 30 years the number of Americans filling out an advance care plans has remained under 40% (see Moody, 2020; Morrison 2020; National Academies of Science Engineering and Medicine, 2021), despite encouragement from formal caregivers. Even if an advanced care plan is complete, explicit conversations regarding ones’ end-of-life preferences may not be shared with family members. The reason many avoid end-of-life conversations is because death remains a taboo topic in which people may feel anxious or hesitate to start the conversation with a loved one (Keeley, 2007, 2017; Prince-Paul & DiFranco, 2017; Quill, 2000).

This does not have to be the case. Normalizing communication about death and dying before a loved one’s end-of-life can remove the stigma and better prepare family members for this process. To this end, this chapter will address the taboo nature of end-of-life communication among families by delving into the current issues with end-of-life processes and present opportunities for engaging in difficult, yet meaningful end-of-life discussions by using mediated communication, specifically television and film, as conversation starters. Utilizing entertainment media as opportunities for end-of-life conversation starters provides a less threatening approach to the taboo topic of end-of-life enabling family members to initiate meaningful conversations and continued engagement through the end-of-life process and into bereavement.