Entering a World with No Future: A phenomenological study describing the embodied experience of time when living with severe incurable disease

Abstract

Scand J Caring Sci; 2013; 27; 165–174 A phenomenological study describing the embodied experience of time when living with severe incurable disease This article presents findings from a phenomenological study exploring experience of time by patients living close to death. The empirical data consist of 26 open‐ended interviews from 23 patients living with severe incurable disease receiving palliative care in Norway. Three aspects of experience of time were revealed as prominent: (i) Entering a world with no future; living close to death alters perception of and relationship to time. (ii) Listening to the rhythm of my body, not looking at the clock; embodied with severe illness, it is the body not the clock that structures and controls the activities of the day. (iii). Receiving time, taking time; being offered – not asked for – help is like receiving time that confirms humanity, in contrast to having to ask for help which is like taking others time and thereby revealing own helplessness. Experience of time close to death is discussed as an embodied experience of inner, contextual, relational dimensions in harmony and disharmony with the rhythm of nature, environment and others. Rhythms in harmony provide relief, while rhythms in disharmony confer weakness and limit time.

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

“…Heidegger stresses that being temporal is the fundamental assertion of being; to be confronted with one's own death reveals the true essence of being . This may be why Saunders characterises this time as one of the closest communications of a lifetime .…”

Deadlines: doing times in (Dutch) hospice

“…Ellingsen et al (2013) have pointed at how people's awareness of life's end articulates the taken for grantedness of present times and futures and alters people's experiences of and dealings with futures. When they know they approach their announced death, they 'enter a world with no future' (p. 168).…”

“…When they know they approach their announced death, they 'enter a world with no future' (p. 168). Studies indicate that dying people find it hard when visitors make longer term future plans for them (Lawton, 2000), or talk about their own futures (Ellingsen et al, 2013): 'My friends sat talking about, losing weight, buying clothes, holidays and what clothes to wear, typical female chat that I used to take part in. I went outside, under the excuse of something, because I could not plan a shit, I know nothing about the future.…”

“…There is a considerable body of work on time and dying in hospital (Glaser & Strauss, 1968;Kaufman, 2005;Zerubavel, 1979) and on how nurses and patients in various care institutions experience time at the end of life (see for example Ellingsen, Roxberg, Kristoffersen, Rosland, & Alvsvåg, 2013) . We know less about time at the end of life in other settings (homes, hospices, nursing homes), and with a few exceptions (DeNora, 2012;Frogatt, 1997;Kaufman, 2005), time itself tends to often be implicitly turned into the 'deep structure of taken-forgranted, unquestioned assumptions' (Adam, 1998, p. 60) against which life proceeds and is organised.…”

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“…Many studies show that people in their end-of-life experience have an altered time perception and relation: they listen to the rhythm of their body and care less about time; it is the body and not the clock that dictates their daily activities [14].…”