Dignity in Care at the End of Life in a Nursing Home: an Ethnographic Study

Background: Nursing homes (NHs) are populated by the frailest older people with multiple physical or mental conditions and palliative care needs. Although dignity is a commonly used concept, it has been claimed to be complex, ambiguous, and multivalent. Nevertheless, dignity is a core value of end-of-life care and is why this study aimed to explore aspects of dignity in older persons’ everyday lives in a NH. Design: A focused ethnographic study design. Methods: : Data consisted of 170 hours of fieldwork, including observations ( n =39) with residents ( n =19) and assistant nurses ( n =22) in a NH in a Swedish urban area. Open interviews were undertaken with residents several times (in total, n =35, mean 70 minutes/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis. Results: : The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of angst and loneliness. 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 waiting times, lack of integrity in care, and deteriorating routines, but also by distanced and sometimes harsh encounters with assistant nurses. As the residents oin this study cherished autonomy and self-determination, while still in need of much help, these circumstances placed them in a vulnerable situation. Conclusions: : To protect residents’ dignity, NHs need to apply a palliative care approach to provide holistic care that comprises attending to personal, bodily, social, spiritual and psychological needs to increase well-being and prevent suffering.