Older persons’ thoughts about death and dying and their experiences of care in end-of-life: a qualitative study

Abstract

Background: Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life.Aim: To explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes.Methods: This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4).Results: The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there.Conclusions: This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life.Trial registration: NCT02708498 Date of registration 16 February 2016.

‘Do you have a future when you are 93?’ Frail older person’s perceptions about the future and end of life – a qualitative interview study in primary care

“…The results from this study make it possible to further understand the complex phenomenon of frail older persons’ perceptions of the future and the end of life. The findings reiterate themes identified in prior research: relating to and reflecting on the future and the end of life can be emotive and stressful topics [ 11 , 20 ] that often can be connected to declining health and a frailty identity [ 9 , 12 ] irrespective of whether the older persons will discuss the issues. The findings from this study suggest that the future and end of life are topics that older persons want to discuss; that is, they want to address the if, and how, questions.…”

“…If this opportunity is not given, there is a risk that older persons will be left alone to think about and address their worries and anxieties about death [ 27 ]. It is also important to have conversations about the family dynamics of approaching the end of life to ensure that older persons’ preferences are respected [ 11 ].…”

“…Although, previous research has found that older persons have thoughts about the future and in many cases want to discuss different aspects of end of life [ 9 , 10 ] this has not been addressed to a wide extent in health and primary care research. Several studies have shown that older persons often do not have the opportunity to discuss questions related to the future and end of life [ 11 , 12 ]. The present study contributes to this area by exploring this theme using semi-structured interviews in a group of frail and pre-frail elderly persons.…”