A Quality end of Life from A Palliative Care Patient's Perspective

Abstract

This qualitative study explored the meaning of quality of life (QOL) from the perspective of palliative care patients by examining their lived experiences and their perceptions of what contributes to their QOL. Ten in-patients — five women and five men — took part in in-depth, semi-structured interviews. When asked about their QOL, they spoke about three distinct aspects: the meaning of a quality life at this stage in their illness trajectory, the experience of living with the illness, and factors that contributed to their QOL. Patients’ approach to life, illness life, and ideal quality life were found to create a sphere of influence that shaped their end-of-life experience. At the heart of living a quality end of life for these patients was their ability to “do the things that I usually do,” “be helpful to others,” and “live in a caring environment,” The findings highlight the importance of understanding each of these factors: patients’ approach to life, illness life, and ideal quality of life, and what they mean to patients in order to tailor interventions to enhance their QOL.

Culturally Congruent End-of-Life Care for Rural Appalachian People and Their Families

“…Since death is a part of life that eventually affects everyone, applying knowledge about personal and family values, beliefs, and practices at EOL is essential for promoting physical, emotional, and spiritual health, addressing health disparities, and facilitating a dignified death among rural Appalachians. 6,14–18 …”

“…18 The use of home remedies and spiritual care in home settings among Black caregivers in Nova Scotia, 19 the influence of Dutch-reformed Canadian culture on family caregiving in the home, 20 and the role of faith for African Americans living at home with life-limiting illness 21 have been described. Several ethnographic studies have explored rural Appalachian cultural factors, including faith and family values influencing health; 6 the characteristics of spirituality in women; 22 and older women living independently.…”

Swallowing Problems at the End of the Palliative Phase: Incidence and Severity in 164 Unsedated Patients

“…Roe et al [10] described that seven out of eleven patients with non-head and neck cancers receiving specialist palliative care had swallowing problems [10]. Tada et al [12] described quality of life in 24 patients in a hospice setting using the EORTC-QLQ-C30 [12], while Gourdji et al [4] interviewed ten patients receiving palliative care Gourdji et al [4].…”

Reporting of "Quality of life": A systematic review and quantitative analysis of research publications in palliative care journals

“…[338404143444753899094106107] Among the 43 original articles on assessment, 8 were qualitative studies[5458687682858698] (all of them were cross-sectional studies) and 35 were quantitative studies[34249505255–5759–62646569–727478–808384889192959699–105] of which 4 were cohort studies,[61727483] 1 article was a case–control study,[65] and 30 articles were cross-sectional studies. [34249505255–575960626469–7178–8084889192959699–105] Of the 13 review articles on assessment, 11 were narrative reviews[384041434447538994106107] and 2 were systematic reviews.…”