The experience of caring for patients at the end-of-life stage in non-palliative care settings: a qualitative study

Abstract

Background: More patients are dying in non-palliative care settings than in palliative care settings. How health care providers care for adult patients at the end-of-life stage in non-palliative care settings has not been adequately explored. The aim of this study was to explore the experiences of health care providers in caring for patients at the end-of-life stage in non-palliative care settings.

Methods: This is a qualitative study. Twenty-six health care providers from eight health care institutions which are based in Shanghai were interviewed individually between August 2016 and February 2017. Three levels of health care, i.e., acute care, sub-acute care, or primary care, was provided in the health care institutions. The interviews were analyzed using qualitative content analysis.

Results: Three themes emerged from the interviews: (i) Definition of the end-of-life stage: This is mainly defined based on a change in treatment. (ii) Health care at the end-of-life stage: Most patients spent their last weeks in tertiary/secondary hospitals, transferring from one location to another and receiving disease- and symptom-focused treatment. Family-dominated decision making was common when discussing treatment options. Nurses instinctively provided extra care attention to patients, but nursing care is still task-oriented. (iii) Challenges, difficulties, and the future. From the interviews, it was found that pressure from families was the main challenge faced by health care providers. Three urgent tasks before the end-of-life care can become widely available in the future were identified from the interviews, including educating the public on death, extending government support, and creating better health care environment.

Conclusion: The end-of-life care system of the future should involve health care institutions at all levels, with established mechanisms of collaboration between institutions. Care should be delivered to patients with various life-threatening diseases in both palliative and non-palliative care settings. But first, it is necessary to address the obstacles to the development of end-of-life care, which involve health care providers, patients and their families, and the health care system as a whole.

Keywords: End-of-life care; Health care delivery; Life-threatening diseases; Qualitative research.