Comparing the Perspectives of Professionals and Relatives Toward the Quality of Palliative Care: A Qualitative Study

Abstract

High-quality care is an important aim of palliative care services. However, the quality of care is a complex phenomenon and is subjectively perceived by those who are closest to the services and are often evaluated poorly. Prior research has highlighted the difficulties in evaluating the quality of care because of different perspectives, and still, only a little is understood about the perception of the quality of care in palliative care services. Investigating the perspectives of key individuals involved in palliative care, such as palliative professionals and relatives of palliative patients, can provide invaluable insight to understand the quality of care. To identify the perceptions of palliative professionals and relatives of the patients toward the quality of palliative care along with identifying the similarities and divergences in the perceptions, as well as highlighting the complexity of quality in palliative care settings while indicating their areas of improvement. This was a qualitative study that involved semi-structured interviews for the evaluation of palliative care guided by the proposed system approach model [1]. The interviews were conducted with a total number of 38 professionals working in palliative care along with 26 relatives of palliative patients across four Swiss cantons (Ticino, Basel, Vaud, and Lucerne). These professionals worked in primary palliative care (PPC) and specialized palliative care (SPC), where 11 general practitioners (GP’s) and 12 nurses were from primary palliative care services. Additionally, 15 interviews were conducted with 9 specialized medical doctors (e.g., oncologists) and 6 specialized palliative care nurses from different hospitals, hospices, mobile palliative care teams (MPCT’s), and specialist private practice. The results revealed considerable differences between the perspectives of professionals and relatives regarding the following aspects of care: 1) the availability, 2) client-centeredness (including respect for patient’s wishes and relative’s involvement in care, 3) satisfaction (including physical and psychosocial), and 4) communication and information transfer. Mainly, the family members felt that care was not being always readily available and coordinated poorly, the patient’s needs were overlooked because of the lack of time. Also, some professionals were perceived to be incompetent with a lack of communication and negligence toward the psychosocial needs of the patient. On the other hand, professionals indicated that relatives may be too involved in the patient care and might have expressed concern due to the high risk of burn out caused by extreme stress and emotionally taxing circumstances of palliative care. The different perspectives uncovered both the similarities and discrepancies, representing a demand for addressing the shortcomings of palliative care services. Specifically, findings indicated that professionals may overestimate the quality of palliative care. Also, future initiatives were needed to ensure that the family members of palliative patients were adequately supported, both psycho-socially and financially, justifying the investment. These findings would help in informing the health policy about the aspects of care that require specific attention to improve the overall quality of care and urge future research to explore the best ways to support these aspects of care.