Transition towards End of Life in Palliative Care: An Exploration of its Meaning for Advanced Cancer Patients in Europe

Abstract

Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.

Patients’ experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study

“…Furthermore, a sense of loss of control and hyper-vigilance [11,13] towards symptoms have been shown to activate increased distress regarding cancer's threat to life [27], diminish patients' coping mechanisms [28] and induce a transient sense of 'living whilst dying' [16,29,30]. Transitioning to end-of-life care has been documented to be a confusing time of mixed messages, fear and misunderstanding, and uncertainty for advanced cancer patients [13,31,32], consistent with our findings of differences across the advanced cancer trajectory. Table 3 Strategies and recommendations to address multiple concurrent symptoms from the patients' perspective Health professional…”

Preference for a single or shared room in a UK inpatient hospice: patient, family and staff perspectives

“…Patients preferring single rooms in healthcare environments often cite aspects such as privacy,3 8 peace and quiet,3 9 better sleep and preferring to be alone5 6 as key factors behind their preference. Patients may also prefer a single room if they worry about disturbing or upsetting other patients, or fear embarrassment, for example because of difficult symptoms 3…”

Exploring the transition from curative care to palliative care: a systematic review of the literature

“…Articles that were excluded (n=1452) were not relevant to the research aim or were not UK papers (figure 1). One paper included both UK and European data and was included 18. Eight of the included articles were qualitative studies of patients, carers or health professionals 10 18–24.…”

“…One paper included both UK and European data and was included 18. Eight of the included articles were qualitative studies of patients, carers or health professionals 10 18–24. One study was a mixed methods comparative cohort study,25 one a case study report,26 one a critical discourse analysis27 and one a non-empirical discussion piece 28.…”

“…One study was a mixed methods comparative cohort study,25 one a case study report,26 one a critical discourse analysis27 and one a non-empirical discussion piece 28. Transitions to palliative care were the main focus in only two of the included papers,18 29 while the remainder referred to transitions only as a minor theme or as a component of the discussion. The majority of empirical papers involved patients with cancer diagnoses, five papers related to cancer alone, and four papers related to both cancer and non-cancer conditions.…”