Facing uncertainty: The lived experience of palliative care

Abstract

Objective: This qualitative research study listens to the narratives of people experiencing the dying process who attended the Otago Community Hospice, Dunedin, New Zealand.

Methods: Ten people, aged between 51 and 65 years old, were approached; two declined and one died sooner than expected. All were women (although this was not part of the original design), and all had carcinoma. Data for the study were sought through qualitative research interviews, considering the development of each participant's illness in relation to her perception of her embodiment in the palliative care setting, and concluding with questions about what she wants the people who care for and about her to learn from her experience. Consistent with this phenomenological approach, the method of analysis was thematic and interpretive.

Results: The main theme was the uncertainty that all participants felt throughout the diagnostic process and during treatment. Uncertainty, too, was a factor in how they managed their day, whether they would be able to sustain an outing or an activity or not, and whether they would be pain free. None were afraid of dying but hoped that when they did die, they would do so comfortably. The relationship with their general practitioners varied. Where fatigue or the effects of medication were not an issue, they could think clearly, but their bodies were experienced as letting them down and limiting their activities. The ideal of “living until you die” was not able to be fulfilled. The increasing approach of social death as they withdrew from their employment and social responsibilities affected them.

Significance of results: Whether one has a “good death” or not is determined not only by the progression and management of the disease process by health professionals, but also by the way in which one is perceived, by self and others. There are no guidelines for the dying role; everybody dies differently and individually.