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Drentea P, Williams BR, Burgio KL. Next-of-Kin’s Experiences of the Dying Body at the End of Life: The Good, the Bad and the Ugly. Paper presented at: Southern Sociological Society Annual Meeting; 2012 Mar 21; New Orleans, LA.
a) This paper examines how next-of-kin (NOK) experience the dying bodies of their loved ones at the end of life. We draw from the literature of "body work" in sociology of the body to understand how the dying body is experienced. We examine how the sight and treatment of the body changes as one moves from a home to a hospital environment. Body work involves all labor associated with the physical care of the body. In this context, it is the physical care of bodies in the final days of life. As is often the case, individuals become less able to control bodily functions as death nears. To the health care worker, caregiver, and family members, it can be frustrating, time-consuming, and distasteful. Body work literature examines the characteristics that this type of work involves, such as intimacy, respect and dignity, and the physicality of caring for the impaired body. b) Methods and data sources Next-of-kin were interviewed at 6 VA Medical Centers in the Southeast. These preliminary analyses were drawn from the VA-funded BEACON project ("Intervention to Improve Care at Life's End in VA Medical Centers," which had the purpose of evaluating a comfort care intervention designed to change the processes and quality of end-of-life care. A total of 78 interviews were conducted with next-of-kin to examine the experience of their loved one's death. Of the 78 decedents, all but one were male veterans of military service. This paper involves a secondary qualitative analysis of previously coded transcribed interviews. The bodywork code file was comprised of NOK's accounts of how/why the patient was hospitalized, how the patient's body was cared for by formal and informal caregivers, how the patient died, and how the NOK experienced "seeing" the patient's failing body (in pain, discolored, swollen), mechanically sustained (intubated, ventilated -dependent, restrained), and cold and lifeless after death. A random number table was used to redistribute the interviews in a non-sequential order. Additionally, identifiers of race, sex, age and site of interviewees were removed by the second author, so that the lead author experienced these data without bias related to these factors. c) Findings The majority of those interviewed were also caregivers. Typically, they had cared for the patient in the home, but in the end, death occurred in the environment of the hospital, impacting the NOK's experience of the final days of the patient's life. How the bodywork was performed on the patient is of utmost importance to the families of the dying patients. Visible signs of problems such as bed sores can be distressing to patients' families. Finding any evidence of uncleanliness, especially with incontinent patients, was difficult. We will discuss themes of giving up control of a loved one's body and moving that control to the institution and nurses. We will also discuss the psychological aspects of viewing the dying body, including all the unpleasantries of blood, swelling, medical equipment and other emotionally evocative images of the suffering medicalized body. NOK react to sick and dying bodies in ways that express love and caring, but also fright, discomfort and distaste.
