Article Text
Abstract
Background This study explored the experience of caring for a loved one with terminal cancer who had expressed a wish to die at home. Interest was both professional, and personal from the experience I had supporting my mother with her terminal cancer diagnosis. End of life care is a major discussion point and is central to service improvements on an international scale. Literature reviewed, revealed some statistical data related to preference and actual place of death, together with limited research of the study topic. Studies note that carers are concerned with facilitating a home death, but rarely relate to the participants having expressed a wish themselves to die at home.
Aim and methodology The aim was to explore carers' dilemmas in relation to facilitating dying at home for a close relative who had terminal cancer and expressed a wish to die at home, whether this was achieved or not. This was a qualitative, retrospective, phenomenological study, using the heuristic approach to investigate the true meaning of caring for a dying person at home. Data were collected through six unstructured interviews with bereaved carers. Ethical approval was received from the relevant bodies. Data were analysed using Collaizis procedural steps.
Results The overarching theme was that the experience was that of a journey, and this journey was not being taken alone, but was integral to the relationships that the dying person had with others. The descriptions were of a situation that was wholly influenced by and impacted on the individuals involved and their relationships with one another. Four key themes emerged and were divided into sub themes these are interlinked and described through the participants own words.
Conclusion Informal carers play a significant role in facilitating dying at home, without this support this would be more difficult and distressing.