Caring for patients in palliative home care: a qualitative study about nurses' experiences

Abstract

Background. In palliative care, nurses find it difficult to deal with ethical dilemmas and have insufficient skills to solve them. Unresolved ethical dilemmas can lead to a state of moral distress, which can lead nurses to distance themselves from their patients. In palliative home care, nurses find it important to be close to their patients. Moral distress and, in reaction, nurses’ act of distancing, could be threats to the quality of palliative home care. Aim. The aim of this study is to gain an understanding in how nurses experience caring for patients and experience ethical dilemmas in Dutch palliative home care settings. With this understanding, educational programs can be developed to train and guide nurses to address ethical dilemmas and to prevent moral distress when providing palliative home care. Research question. How do nurses experience caring for patients in a palliative homecare setting? Methods. A Grounded Theory approach was used. The population consists of palliative home care nurses. Data were collected through nine individual in-depth interviews. The steps in Grounded Theory were followed during data analysis. Results. The emerging themes were building relationships, problems in palliative home care and motivation to do as good as possible. Nurses experienced problems, caused by opposing idea’s of GP’s and family members, lack of communication between patients and partners, structure of palliative home care and patients’ suffering. If problems were looked upon as moral problems or ethical dilemmas, nurses distanced themselves from these problems, by guarding their emotions and trying to solve them with patients’ values, due to their perception that patients’ autonomy was most important. Conclusion. The results highlight the need to develop educational training for nurses to address ethical dilemmas when providing palliative home care. This study may provide a basis to develop strategies for nurses in palliative home care to cope with ethical dilemmas and prevent themselves from moral distress.