End-of-Life Caregiver’s Perspectives on their Role: Generative Caregiving

Every year, more than 1.7 million elders (65+ years of age) die in the United States (Heron et al., 2009). Of these, many thousands die as a result of life-limiting illnesses such as cancer, heart failure, renal failure, and chronic obstructive lung disease (Heron et al., 2009) and most of those receive intensive end-of-life (EOL) care from informal caregivers (mostly family members) prior to death (Wolff, Dy, Frick, & Kasper, 2007). Although some caregivers learn about the EOL caring role as a result of interactions with hospice staff, many do not. Data show, for example, that even though 82% of hospice patients are elders, hospice is involved in less than half of all deaths in the United States (National Hospice and Palliative Care Organization [NHPCO], 2008). In addition, although dying trajectories for many life-limiting illnesses including cancer can extend over months and even years (Lunney, Lynn, & Hogan, 2002), the median length of hospice service is only about 20 days (NHPCO, 2008). Therefore, although some caregivers receive instructions from hospice personnel about the role as it unfolds, many construct the EOL caregiving role with little or no preparation and sparse input from health care providers until very late in the dying trajectory. This article presents an analysis of qualitative data collected in a study of factors that influence decisions about everyday activities made by family members providing care to elders with life-limiting illnesses. This analysis focuses on describing the EOL caregiving role as constructed by caregivers and reported in the data. Caregiving for chronically ill elders has been the focus of intense study for the past three decades. Based on this literature, we know quite a bit about caregivers, the difficulties they encounter, the positive and negative outcomes of caregiving for caregivers, and interventions for improving outcomes for caregivers. In addition, research has described the tasks caregivers perform. Schumacher, Beck, and Marren (2006) identified four categories of tasks: (a) physical maintenance and instrumental activities of daily living; (b) tasks requiring nursing or problem-solving skills such as symptom management; (c) tasks requiring communication or organizational skills such as arranging for services and communicating with health care providers; and (d) the “invisible aspects of care,” which include a host of anticipatory and supervisory activities supportive to elders. Therefore, evidence indicates multiple aspects to the role and the skills required vary in complexity. Research also indicates caregivers perform different tasks in hospitals (Collier & Schirm, 1992; Li, Stewart, Imle, Archbold, & Felver, 2000) compared to nursing homes (Bowers, 1987; Maas, Buckwalter, & Kelley, 1991) or homes (Bowers, 1987; Messecar, Archbold, Stewart, & Kirschling, 2002). Tasks performed can also be influenced by the caregiver’s (and elder’s) gender and the relationship between elder and caregiver (Beeson, Horton-Deutsch, Farran, & Neundorfer, 2000; Ducharme et al., 2006). Thus, the way caregivers construct their role is context dependent. We also know how caregivers think about what they do or the purpose they ascribe to their activities. Bowers (1987) described five categories of family caregiving: Anticipatory caregiving, done in anticipation of potential problems and future need; preventive caregiving, done to prevent illness, injury, or health problems; supervisory caregiving, done to assure others are appropriately providing care; instrumental caregiving, done to provide physical, emotional, social, and/or financial support; and protective caregiving, done to protect elder from threats to self-image and assaults to personal dignity. Therefore, we know caregivers ascribe different purposes to the tasks they perform. These studies of caregiving for the chronically ill and elders with dementia provide a basis for understanding the role constructed by EOL caregivers, but there are also fundamental differences that may influence how the role is constructed, for example: (a) the goal of EOL caregiving is palliative rather than curative, (b) the caregiving is characterized by an acute sense of finality, and (c) the caring interactions have the potential to evoke intense emotions that may not occur in other caregiving situations. In acknowledgement of fundamental differences, there is an evolving body of literature focusing specifically on EOL caregivers, including research on caregiving for elders with specific life-limiting conditions (e.g., Doorenbos et al., 2007; Exley, Field, Jones, & Stokes, 2005; Morrison & Lyketsos, 2005; Schumacher et al., 2008). Like other literature on caregiving, most studies of EOL caregiving focus on the difficulties and needs of caregivers (Marco, Buderer, & Thum, 2005; Redinbaugh, Baum, Tarbell, & Arnold, 2003; Wolff et al., 2007), the positive and negative outcomes for caregivers (Fletcher et al., 2009; Gaugler et al., 2004; Grbich, Parker, & Maddocks, 2001; Kim, Schulz, & Carver, 2007; Milberg & Strang, 2004; Perreault, Fothergill-Bourbonnaism, & Fiset, 2004; Schumacher, Stewart, & Archbold, 2007), and interventions for improving care and improving outcomes for caregivers (Kozachik et al., 2001; Kwak, Salmon, Acquaviva, Brant, & Egan, 2007; Walsh & Schmidt, 2003). In addition, a few studies have focused on the skills required to perform EOL caregiving activities (Schumacher, Beidler, Beeber, & Gambino, 2006). Overall, however, very few studies have described how caregivers who are caring for elders they know are dying construct their role—what they do as well as how they do it and the purpose they ascribe to their activities. Given gaps in the literature, this analysis was undertaken to describe caregivers’ perspectives of the EOL caregiving role in providing care to elders dying from life-limiting illnesses. Symbolic interactionism and the social constructionist view were the theoretical underpinnings. Symbolic interactionism is a theoretical perspective that asserts actions arise from the dynamic relationship between actions and meanings and that meanings are embedded in social interactions with others (Charmaz, 2006). The social constructionist view asserts that people actively construct social realities and views of themselves based on interactions with others, their interpretations and perceptions of reality, and reflections on their interactions and experiences (O’Connor, 2007).