Dignity of older home-dwelling women nearing end-of-life: Informal caregivers’ perception

Abstract

Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers’ perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer’s philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women’s dignity were identified: maintaining one’s self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one’s self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women’s dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women’s living space, these perspectives should be emphasized in healthcare professionals’ educational training and in the municipal end-of-life care of these patients.

Patients' experiences and perceptions of dignity in end‐of‐life care in emergency departments: A qualitative study

“…It is therefore important to consider the necessary interventions without letting therapeutic obstinacy get in the way, as respecting a patient's dignity reduces their suffering and prepares them for a more comfortable death (Hemati et al, 2016 ). Maintaining the freedom to make decisions and choices must prevail to preserve dignity (Staats et al, 2021 ).…”

Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR) Part 2

“…Moreover, we wished to invite our coresearchers to be coauthors of the Dying With Dignity publications. [17][18][19] However, because of the burdensome experiences related to illness and the everyday challenges of their life situations, we decided to omit the PAICPAIR coresearchers from this stage of the research process.…”

“…In the previous section, we have described and discussed how the coresearchers in our study have contributed to defining the research questions, participated and assisted in the interpretation and writing of this project. Moreover, we wished to invite our coresearchers to be coauthors of the Dying With Dignity publications 17-19. However, because of the burdensome experiences related to illness and the everyday challenges of their life situations, we decided to omit the PAICPAIR coresearchers from this stage of the research process.…”

“…The PAICPAIR framework has been developed as a parallel process with the Dying With Dignity project [17][18][19] and has enriched the process and outcome of this latter empirical study through the valuable contributions and insights of the patient in a palliative phase and an informal caregiver who were our coresearchers. 12 First, we established a steering group to help us make sound decisions in our ongoing evaluation and adjustment processes during this research.…”

Gender Differences in the Perception of Dignity Among Hospitalized Older Adults

“…For example, in the context of male identity, it may be more difficult for older men to talk about their concerns related to threats to their dignity. Identifying the factors that may influence men's and women's perception of dignity in old age is therefore important (Staats et al, 2021).…”