Sharing information in ambulant palliative care settings : Swiss general practitioners' communication with patients, patient's families and other healthcare professionals

While they are usually the first point of contact for individuals with all kinds of health related questions, knowledge about Swiss general practitioners’ (GPs) practice of communicating with patients, patients’ families and other healthcare professionals in ambulant palliative care settings is still fragmentary. This thesis sheds light on GPs’ ways of counselling patients in an important topic in palliative care, namely advance directives (ADs), while also focusing on physician-patient-communication regarding other sensitive topics such as assisted suicide. Further, this thesis illuminates GPs’ communication processes with patients’ families and other healthcare professionals. The topic of ADs was chosen as a special focus since they were found to be a particularly important tool in ambulant palliative care settings. As a legal document signed by a competent person they offer GPs, other healthcare professionals and patients’ families guidance for medical decisions in case the patient becomes incompetent. The focus on GPs’ ways of communication with family members and other healthcare professional was set since the quality of this communication was shown to be directly linked to the quality of care that can be provided in this setting. Four main research questions are structuring this thesis: 1) When and how do GPs initiate conversations about ADs? 2) What difficulties have arisen in the context of conversations regarding sensitive topics such as assisted suicide? 3) How and where does communication with the patient’s family fit in? 4) How do GPs communicate with other healthcare professionals and what are their perceptions of possible improvement or barriers? Answers given to these questions are based on the analysis of the qualitative data collected via semi-structured face-to-face interviews with GPs from the German, Italian and French speaking parts of Switzerland. As for the first research question, guidelines such as the guideline on communication in clinical practice from the Swiss Academies of Medical Sciences, often only cover the content but not the appropriate timing and initiating of ADs. Thus, results from our data show that participants have very individual, often unstructured ways and timings of approaching this matter with their patients. It was presented that GPs often link the matter of ADs to the thought of approaching death. Therefore, GPs often chose to address ADs accordingly to this link. Stated moments could be split into two main categories: the first category “before illness” served the purpose to avoid additional burden by not having to talk about death and dying when the patient is already facing a severe illness. The second category “after an illness became predominant” was stated to be chosen in order to ensure that patients’ stated preferences are up to date and robust. For the second research question, aiming at possible difficulties that can occur, GPs criticized the usage of pre-formulated templates for ADs with patients, stating that these forms often fail to express individual values. Standardized sentences, so the participants, cannot sufficiently illustrate a patient’s health and/or biographical background. Often these templates were said to contain broad or vague statements such as wanting to “maintain dignity” which participants stated as too general to provide a basis for individual treatment decisions. As an example, participants named the forgoing of an intervention when the patient's condition is “irreversible” or “terminal”. However, physicians often have trouble determining whether patients are in these states. Further, the theme of emotional discomfort emerged as a possible barrier. The latter not only occurred on the side of the participating GPs but also on the side of families and patients, potentially hindering effective communication. The integration of families, as addressed under the third research question, was shown to be often achieved through individual communicative approaches with GPs falling back on and individually adapting tools they know from inpatient family meeting settings. Concerning the fourth research question, the missing transparency and timeliness of information caused tension and barriers between GPs and specialists working in hospitals complicating the communication and collaboration between all stakeholders involved. Also the lack of accountability and the missing assignment of responsibility led to GPs’ perceptions of a rather unstructured and ineffective communication with specialists. In conclusion, the decision of when to address the topic of ADs is surely a matter of sensitivity which should be left to the GP. However, for research question 2) we suggest that existing guidelines be fully completed, also covering possible effects of the timing on ADs. For 3) a more structured approach of how tools from inpatient family meetings could be adapted to and used in ambulant palliative care could help to optimize the informing of families in this setting. In regards to 4) we conclude that currently existing infrastructures concerning the mutual communication between GPs and other stakeholders are in need of more transparency and better structured information pathways. Nevertheless, this is difficult to accomplish, as it is not the official responsibility of any party yet. Therefore, responsibilities regarding this matter need clarification in order to optimize communication and subsequently patient care.