Within the Circle of Care: the Patient's Lived Experience of Receiving Palliative Care

Abstract

I am a Registered Comprehensive Nurse with dual practice interests in the care of terminally ill people, and in quality improvement. This research study originates from my experience of working in a hospice as a clinical nurse then as a quality improvement co-ordinator in the early 1990s. At this time, quality improvement in the health services was relatively new, and there was no locally published research on quality improvement in palliative care. World wide there was a developing body of palliative care quality improvement literature (Higginson 1989, 1993, 1995); however there had been little research undertaken which reflected the patients' perception of the palliative care experience. As a result of my work experience came the quest to find out directly from patients, the aspects of care which they considered valuable. I chose to use the descriptive-phenomenological methodology particularly utilising van Manen's (1990) phenomenological method. This methodology allows the participants' experience to stand apart from existing health professional defined palliative care knowledge, yet provides a way for this participant knowledge to complement and augment it. This descriptive-phenomenological study describes six persons' experience of care within a palliative care setting, and discusses the possible significance that this may have for the practice of palliative care. The participants had at least two care experiences within this setting and were interviewed on one occasion shortly after their discharge, within their own homes. I invited the participants to talk about their care experiences. The anecdotes which the participants relayed, when reflected on, revealed both a pattern of storytelling as well as individual components of care. These components or elements of the care experience as well as informing each other, created a representation, a schematic description of their experience. The representation 'The circle of care', is orientated around the central component of 'identity', with the encircling valued components of care being: 'keeping control', 'being safe', 'chosen isolation', 'mortality awareness', 'relaxation and relinquishment', 'caring qualities', 'being watched' and 'humour'. The circle of 'palliative care philosophy' contained these components, finally being enclosed by an outer circle of the 'spiritual\aesthetic qualities of the environment of care'. The reality of people receiving palliative care is characterised by a number of supportive traditional and non-traditional aspects of caring. Although some characteristics have been described within general health and palliative care literature, some appear to have been generated by these particular participants as part their reality. The selected methodological approach and results limit the study to the context in which it was conducted. However the study suggests that patients are valued informants, and that they are able to augment existing palliative care knowledge. Ideally their input should be sought within the current systems of evaluating existing care and in the creation of new models of care.