Facilitators of and barriers to high-quality care at end-of-life: experiences of terminally ill patients and their relatives
摘要
To ensure coherence and continuity of care for individual patients, it is necessary to improve collaboration between healthcare systems as well as between healthcare systems and patients. The objective of the study was to gain knowledge about the experiences of terminally ill patients and their relatives with the healthcare system to identify facilitators of and barriers to high-quality care in the last stage of patients’ lives.
MethodsSemi-structured interviews were conducted with terminally ill patients and their relatives. The data were analysed using content analysis.
ResultsSix patients and four relatives participated in the study. The analysis identified five themes: (1) continuity, coherence and timing: significance and challenges; (2) conversations about end-of-life: the need for an individual approach; (3) being seen and trusted; (4) “small” things may have a great significance; and (5) relatives have their own needs.
Among patients and relatives who felt that the healthcare system had the overall overview and was present with the necessary help at the right time, the healthcare system provided a secure frame within which they could devote their energy to dealing with the impending farewell and trying to foster a high quality of life every day. However, in cases in which the healthcare system was not perceived to have the overall overview, patients and relatives became insecure and had to exert energy and effort to navigate the healthcare system themselves. One of the most important things for patients and relatives was that there was clear agreement regarding who was responsible for what and where they could call for help.
ConclusionThe findings highlight the importance of continuity of care, an individual approach and the need to trust the patients. Adherence to these findings can help healthcare professionals and institutions improve end-of-life care.