Dignity in bodily care at the end of life in a nursing home : an ethnographic study

Background: Nursing homes (NHs) are populated by the frailest older people who have multiple physical or mentalconditions and palliative care needs that may convey the violation of dignity. Although dignity is a commonly usedconcept and a core value of end-of-life care, it is assumed to be complex, ambiguous, and multivalent. Thus, the aimof this study was to explore aspects of dignity in older persons’ everyday lives in a NH. Design: A focused ethnographic study design. Methods: Data consisted of 170 h of feldwork, including observations (n=39) with residents (n=19) and assistant nurses (n=22) in a Swedish NH. Interviews were undertaken with residents several times (in total, n=35, mean70 min/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct thedeductive analysis. Results: The study showed that residents sufered from illness-related concerns that inhibited their possibilities tolive a dignifed life at the NH. Their failing bodies were the most signifcant threat to their dignity, as loss of abilitieswas constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony, loneliness, and meaninglessness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially,the residents’ dignity depended on assistant nurses’ routines and behaviour. Their dignity was violated by long waitingtimes, lack of integrity in care, deteriorating routines, and also by distanced and sometimes harsh encounters withassistant nurses. Because the residents cherished autonomy and self-determination, while still needing much help,these circumstances placed them in a vulnerable situation. Conclusions: According to residents’ narratives, important dignity-conserving abilities came from within themselves.Dignity-conserving interventions did occur, such as emphatic listening and bodily care, performed in respect for residents’ preferences. However, no strategies for future crises or preparing for death were observed. To protect residents’dignity, NHs must apply a palliative care approach to provide holistic care that comprises attention to personal, bodily,social, spiritual, and psychological needs to increase well-being and prevent sufering