Being in transit and in transition The experience of time at the place, when living with severe incurable disease ‐ a phenomenological study

Abstract

The aim of this study is to describe the experience of time as it presents itself at the place being situated when living with severe incurable disease and receiving palliative care. The empirical data consist of 26 open‐ended interviews with 23 patients receiving palliative care at home, at a palliative day care, in a palliative bed unit in hospital or in a nursing home in Norway. A common meaning of a shifting space for living emerged from the analysis and was revealed through three different aspects: (i) Transition from a predictable to an unpredictable time: To live with severe incurable disease marks a transition to a changed life involving an ongoing weakened and altered body with bothersome symptoms making experience of time different and unpredictable. (ii) Transition between a safe and unsafe time: When time is unpredictable, feeling safe is revealed as essential to how time is experienced at the place being situated. (iii) To be in transition from a homely to a homeless existence: In a time of increased bodily weakness, unpredictable ailments and displacements, the sense of belonging to the place is revealed as significant to the experience of time. Not knowing where to be in a time of change is like an existential cry of distress where the foothold in existence is lost. The findings are discussed and interpreted as an embodied experience originating from the passage of time continually affecting life sometimes so fundamentally that it marks a transition to a changed space of life that is reflected in the experience of time.

‘Being’ a ventricular assist device recipient: A liminal existence

“…However, the recipients themselves have no control over the attainment of this outcome, resulting in the sense that life spent living with the device is stuck or on hold. This sense of being stuck in time is at odds with our natural state of being-in-theworld which is to always be moving forwards (Ellingsen et al 2014). The VAD itself demands attention, its needs must become a central feature around which recipients' lives and time is organised; failure to do so is to risk their life.…”

“…This paper focuses on the experience of time and identity following the implantation of a VAD. There is often a tendency for the temporal elements of chronic illness to be dismissed (Gergel, 2013), and a need has been highlighted for health care professionals to develop a more nuanced understanding of patients' temporal experience (Shubin et al 2015;Ellingsen et al 2014). A review of experiences of time in chronic illness identified four structures, of which calendar or clock time is the most frequently used, which may lead us to believe that this has the greatest impact on the individual (Jowsey, 2016).…”

“…This sense of being stuck in time and place is at odds with our natural orientation to the world. To live is to be in a state of continuous change, without the passage of time everything is fixed in the moment, much like a photograph where nothing moves or changes the subject in the picture may provide an illustration of life but it is not life itself (Ellingsen et al 2014). For VAD recipients a sense of liminality may arise from the lack of control that they have over the attainment of their desired future.…”

Do patients with lung cancer recall physician-initiated discussions about planning for end-of-life care following disclosure of a terminal prognosis?

“…Evidence suggests that patients in transition to end-of-life care experience a time which they deem ‘unsafe’15 suggesting there is a need to provide a safe environment and sensitive unrushed conversations and to view ACP as a process to support patients during this transition period and prevent a sense of abandonment.…”

The pendulum time of life: the experience of time, when living with severe incurable disease—a phenomenological and philosophical study

“…The challenge for health workers is to not take for granted that the individual will experience time in a typical and traditional way. How individuals experience time even in the face of death is as diverse as life itself, but nevertheless it may be important to note that patients' understanding of time may be associated with their existence and not with a time schedule where structuring and synchronization are essential, such as in in hospitals (Ellingsen,et al 2013b) . The experience of time…”