Wishes to die at the end of life and subjective experience of four different typical dying trajectories. A qualitative interview study

Abstract

Research aimsThe motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer.Study population62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews).Study design and methodsQualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory.ResultsIn addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups.InterpretationWTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients’ WTD, and the underlying motivations and protective factors.

Flexibility to manage and enhance quality of life among people with motor neurone disease

“…Other studies [23,28] have explored the concept of "self", and they suggest previous norms regarding sense of self are challenged by symptoms associated with MND, and restrictions caused by these symptoms. Some individuals become concerned about becoming a burden to others [26,29], and some may question their existential meaning due to their loss of independence [24,29] and/or disrupted activities [28]. Further explorations into other aspects of QoL in view of WHO's definition of QoL would advance our understandings of QoL in MND.…”

Cross-sectional survey of the wish to die among palliative patients in Spain: one phenomenon, different experiences

“…'Wish to die' is a rather less acute expression and is more general than 'desire to die', the more semantically specific, concrete term. 7 Therefore, within a common phenomenon, where the overall idea might be referred to as 'wish to die', there are three different experiences, which are referred to as 'wish to die', 'desire to die' and the wish or desire 'to hasten death', respectively. This conceptual proposal is what would be already insinuated in the distinction made by Chochinov et al, 11 when differentiating patients with a sporadic 'wish to die', as opposed to others who present a 'desire to die'.…”

“…[1][2][3][4] Studies discuss the multifactorial nature of this phenomenon, taking in the influence of physical, psychosocial, spiritualexistential and social factors 1 or those related to the patient's personal characteristics. The experience of WTD has been described as a dynamic phenomenon, which fluctuates over time, [5][6][7][8][9] and which may form part of the process of adapting to illness. 10 There may be coexisting, contradictory sentiments of WTD and wishing to live at the same time.…”

The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach

“…Desire to die is a complex phenomenon with individual reasons, forms and consequences [1,2]. We use the term desire to die in a broad sense including an acceptance of death, a wish for hastened death without requiring any accelerating action [3], a request for assisted dying and suicidal ideation [4].…”