Qualitative Study on the Perceptions of Terminally Ill Cancer Patients and Their Family Members Regarding End-of-Life Experiences Focusing on Palliative Sedation

Abstract

Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed.

Narrative medicine: A comparison of terminal cancer patients’ stories from a Dutch hospice with those of Anatole Broyard and Christopher Hitchens

“…Ideally, for cancer patients, a good death is made possible when palliative sedation is initiated before suffering becomes unbearable (Eun, Hong, Bruera, & Kang, 2017) because this could result in the loss of meaning, the loss of autonomy or the experience of being a burden (Ruijs, Kerkhof, van der Wal, & Onwuteaka-Philipsen, 2013). The interviewed patients in this study confirm that a good death is without such accompanying symptoms.…”

Discussions about palliative sedation in hospice: Frequency, timing and factors associated with patient involvement

“…Since palliative sedation was discussed with the patient mainly pre‐emptively, this might support the evidence that the presence of the family could be a barrier to advance care planning with patients with cancer. Family members might prevent advance care planning because of their reluctance to talk about such subjects (Eun, Hong, Bruera, & Kang, ; Fried & O'Leary, ; Michael, O'Callaghan, Baird, Hiscock, & Clayton, ), or because of their fear to lose hope (Barnes, Jones, Tookman, & King, ; Michael et al, ). In turn, patients with cancer might avoid speaking about their future health and care as they do not want to upset or burden their loved ones (Barnes et al, ; Horne, Seymour, & Payne, ).…”

“…Family members might prevent advance care planning because of their reluctance to talk about such subjects (Eun, Hong, Bruera, & Kang, 2017;Fried & O'Leary, 2008;Michael, O'Callaghan, Baird, Hiscock, & Clayton, 2014), or because of their fear to lose hope (Barnes, Jones, Tookman, & King, 2007;Michael et al, 2014). In turn, patients with cancer might avoid speaking about their future health and care as they do not want to upset or burden their loved ones (Barnes et al, 2011;Horne, Seymour, & Payne, 2012).…”

“…Introducing the topic of palliative sedation to patients with cancer before the occurrence of critical situations is crucial to increase their involvement in the decision-making process (Morita et al, 2004). This approach is in line with patients' and family's wishes to take decisions about the use of palliative sedation "before the suffering caused by terminal cancer becomes too great" (Eun et al, 2017).…”

Definitions for “palliative care”, “end-of-life” and “terminally ill” in oncology: a scoping review

“…Regarding countries, the following stands out Australia (10%), Canada (12%), South Korea (10%), United States (10%), Netherlands (8%), and Taiwan About the definitions: "end-of-life" was characterized in five studies, four quantitative and one qualitative; "palliative care" was defined in 15 studies, 11 quantitative and four qualitative and "terminally ill" appeared in 35 studies, 31 quantitative and five qualitative. (Appendix 1) (5,8,9,15,16,17,18,19,3,20,21,22,23,24,25,26,27,28,29,30,11,12,10,13,14,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,5...…”