Abstract
Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members’ thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members’ expressions of dignity in palliative care. The study had a qualitative design; semi‐structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members’ expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one’s identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members’ dignity: the two‐headed paradox and reciprocal impact. The two‐headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members’ feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals’ understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members’ sense of dignity.
Highlights
Living and dying with dignity are fundamental values in palliative care for both patients and their family members [1]
All the participants signed an informed written consent before the interview. Members talked about their dignity in an engaged way
The two-headed paradox meant that family members can be seen with a constant struggle between being happy to care for the ill person and simultaneously feeling that they are trapped
Summary
Living and dying with dignity are fundamental values in palliative care for both patients and their family members [1]. The situation for family members of a seriously ill person is often demanding in both the practical and emotional dimensions of everyday life [2, 3]. This has an impact on how family members uphold their dignity. The concept of dignity is complex, Nordenfelt [4] offers four notions of dignity to provide further understanding. He argues that all humans have dignity. Another review explored the transition experience of family members of persons
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