Assigned nurses and a professional relationship: a qualitative study of COPD patients’ perspective on a new palliative outpatient structure named CAPTAIN

BACKGROUND: Little is known of how to organize non-malign palliative care, and existing knowledge show that patients with COPD live with unmet palliative needs and low quality of life. With the intent to improve palliative care for patients with COPD, we changed the structure of our outpatient clinic from routine visits by a pulmonary specialist to a structure where each patient was assigned a nurse, offered annual advance care planning dialogues, and ad hoc pulmonary specialist visits. The aim of this study was to explore COPD patients’ experiences with a new and altered palliative organization. METHODS: The design was interpretive description as described by Thorne. We conducted ten semi-structured interviews with patients with severe COPD from January 2017 to December 2017. RESULTS: Patients described how the professional relationship and the availability of their nurse was considered as the most important and positive change. It made the patients feel safe, in control, and subsequently influenced their ability to self-manage their life and prevent being hospitalized. The patients did not emphasize the advanced care planning dialogues as something special or troublesome. CONCLUSION: We showed that it is relevant and meaningful to establish a structure that supports professional relationships between patient, nurse and physician based on patients needs. The new way of structuring the outpatient care was highly appreciated by COPD patients and made them feel safe which brought confidence in self-management abilities. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12904-019-0410-0) contains supplementary material, which is available to authorized users.