What do positive and negative experiences of patients, relatives, general practitioners, medical assistants, and nurses tell us about barriers and supporting factors in outpatient palliative care? A critical incident interview study

Background: The strengthening of the general practitioners’ (GPs’) role in palliative care (PC) has been identified as a top priority in order to improve PC in Germany. This study aims at exploring positive and negative experiences in PC in Germany from the perspectives of patients, relatives, and health care professionals in a primary care setting. Methods: Between March 2017 and August 2017, a total of 16 interviews with patients, relatives, GPs, medical assistants, and nurses were conducted. The Critical Incident Technique (CIT) was used to explore factors that influence excellent versus undesirable events in PC provision. Two researchers independently defined and counted critical incidents (CIs) from interview transcripts, performed a thematic analysis, and clustered the CIs into dimensions. Results: In summary, 16 interviews contained 280 CIs, divided into 130 positive and 150 negative CIs. The thematic analysis resulted in seven content domains, with each including positive and negative CIs, respectively: 1) way of care provision, 2) availability of care providers, structures, medication, and aids, 3) general formal conditions of care provision, 4) bureaucracy, 5) working practices in health care teams, 6) quality and outcome of care provision, and 7) communication. Conclusions: The results raise awareness for the aspects that lead to successful or undesirable PC experiences, observed from different perspectives. They open up the potential for primary PC improvement. Future research will facilitate development and implementation of more tailored interventions in order to improve generalists’ PC.