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

Searches for Ultra-High-Energy Photons at the Pierre Auger Observatory

The Pierre Auger Observatory, which is the largest air-shower experiment in the world, offers unprecedented exposure to neutral particles at the highest energies. Since the start of data collection more than 18 years ago, various searches for ultra-high-energy (UHE, E greater than or similar to 10^(17) eV) photons have been performed, either for a diffuse flux of UHE photons, for point sources of UHE photons or for UHE photons associated with transient events such as gravitational wave events. In the present paper, we summarize these searches and review the current results obtained using the wealth of data collected by the Pierre Auger Observatory

"We need to talk!" Barriers to GPs' communication about the option of physician-assisted suicide and their ethical implications: results from a qualitative study

GPs usually care for their patients for an extended period of time, therefore, requests to not only discontinue a patient's treatment but to assist a patient in a suicide are likely to create intensely stressful situations for physicians. However, in order to ensure the best patient care possible, the competent communication about the option of physician assisted suicide (PAS) as well as the assessment of the origin and sincerity of the request are very important. This is especially true, since patients' requests for PAS can also be an indicator for unmet needs or concerns. Twenty-three qualitative semi-structured interviews were conducted to in-depth explore this multifaceted, complex topic while enabling GPs to express possible difficulties when being asked for assistance. The analysis of the gathered data shows three main themes why GPs may find it difficult to professionally communicate about PAS: concerns for their own psychological well-being, conflicting personal values or their understanding of their professional role. In the discussion part of this paper we re-assess these different themes in order to ethically discuss and analyse how potential barriers to professional communication concerning PAS could be overcome

“It’s our DNA, we deserve the right to test!” : A content analysis of a petition for the right to access direct-to-consumer genetic testing

Aims: Various companies are currently advertising or selling genetic tests over the internet using a model of provision referred to as ‘direct-to-consumer’ (DTC). This commercial offer of DTC genetic testing (GT) has fueled a number of scientific, ethical and policy debates. To date there have been few studies published regarding the users’ perspective. This study aimed to obtain information regarding the issues raised by individuals who signed a petition in support of DTC GT and the ‘unrestricted’ access to their genetic information. Materials &amp; methods: We conducted qualitative content analysis of comments written by individuals who signed a public online petition initiated by DIYgenomics (CA, USA) to support “personal access to genetic information”. Results: Of the 523 individuals who signed the petition sponsored by DIYgenomics, 247 individuals also wrote individual comments. A content analysis of these comments reveals that petitioners raised six main issues in support of unrestricted access to DTC GT: that their ownership of their DNA should allow them to have unrestricted access to their genomic information; that they should have the right to their genomic information; that the government has no place in (further) regulating DTC GT; that healthcare professionals should not be placed as intermediaries when purchasing DTC GT services; that many petioners who had already obtained DTC GT had positive experiences with this model of provision; and that genealogy or ancestry DNA testing is one of the main activities petitioners wish to have ‘unrestricted’ or ‘direct’ access. Conclusion: These results give insight into why individuals may support unrestricted access to their genomic information and confirm some of the motivations of users for purchasing DTC GT. Our analysis also brings to the forefront themes that have been raised less often in empirical studies involving motivations to purchase DTC GT services; these include the strongly held beliefs of some petitioners that, since they own their DNA, they should have the right to access the information without (further) government control or physician involvement. Interestingly, the comments left by petitioners also reveal a certain distrust of governmental agencies and healthcare professionals. This urges us to further study the public’s views of these services and the potential impact of these views in order to responsibly address the ongoing debate on DTC GT. </jats:p

The utility of standardized advance directives: the general practitioners' perspective

Advance directives (AD) are written documents that give patients the opportunity to communicate their preferences regarding treatments they do or do not want to receive in case they become unable to make decisions. Commonly used pre-printed forms have different formats. Some offer space for patients to (a) appoint a surrogate decision maker, and/or (b) to determine future medical treatments and/or (c) give a statement of personal values. So far it is unknown which forms GPs preferably use and why they decide to do so. 23 semi-structured interviews with GPs were analysed using content analysis. Interviewees mainly use short templates (to appoint surrogate decision makers) and medium length templates with checkboxes to indicate patients' preferences in regards to life prolonging measures. Especially when patients faced the progression of a disease, participants use the latter version. Only then, the interviewees remarked, patients are capable to rate concrete situations reliably. GPs also realize the importance of the verbal assessment of patients' preferences; however they rarely keep a written form of the conversation. Some GPs hand out one or more templates and ask their patients to read and think about them at home with the option to talk to them about it later on, while others prefer their patients to fill them out alone at home. Regardless of template usage, most GPs emphasize that ADs require regular updates. GPs tend to see standardized advance directives mainly as a tool to start a conversation with their patients and to identify their real preferences and values. When the patient is still not facing the progression of an already existing disease it could be sufficient to only appoint a surrogate decision maker instead of creating a full AD. However, in all other situations, appointing a surrogate decision maker should be backed up by a written statement of a patient's general values. Patients and their relatives should always have the opportunity to ask their GP for medical advice when drafting an AD. It is crucial to regularly verify and update existing ADs within the course of a disease

“I Needed to Know, No Matter What I Do, I Won’t Make It Worse”—Expectations and Experiences of Last Aid Course Participants in Germany—A Qualitative Pilot Study

Background: The need to care for a loved one in a palliative state can lead to severe physical as well as psychological stress. In this context, Last Aid courses have been developed to support caring for relatives and to stimulate the public discussion on death and dying. The purpose of our pilot study is to gain an understanding of the attitudes, values, and difficulties of relatives caring for a terminally ill person. Methods: A qualitative approach was used in form of five semi-structured guided pilot interviews with lay persons who recently attended a Last Aid course. The transcripts of the interviews were analyzed following Kuckartz’s content analysis. Results: Overall, the interviewed participants have a positive attitude toward Last Aid courses. They perceive the courses as helpful as they provide knowledge, guidance, and recommendations of action for concrete palliative situations. Eight main topics emerged during analysis: expectations regarding the course, transfer of knowledge, reducing fear, the Last Aid course as a safe space, support from others, empowerment and strengthening of own skills, and the improvement needs of the course. Conclusions: In addition to the expectations before participation and the knowledge transfer during the course, the resulting implications for its application are also of great interest. The pilot interviews show initial indications that the impact, as well as supportive and challenging factors regarding the ability to care for relatives to cope, should be explored in further research

Evolvement of Peer Support Workers’ Roles in Psychiatric Hospitals: A Longitudinal Qualitative Observation Study

Peer support workers (PSWs) use their experiential knowledge and specific skills to support patients in their recovery process. The aim of our study was to examine the integration and role-finding process of PSWs in adult psychiatric hospitals in Germany. We conducted open nonparticipant observations of 25 multiprofessional team meetings and 5 transregional peer support worker meetings over a period of six months. The data were analyzed using qualitative content analysis. Regarding the integration of PSWs into multiprofessional teams, we identified three subcategories: 'Features of success,' 'challenges' and 'positioning between team and patients.' Concerning the PSWs' roles, we developed two subcategories: 'Offers' and 'self-perception.' The PSWs' specific roles within a multiprofessional mental healthcare team evolve in a process over a longer period of time. This role-finding process should be supported by a framework role description which leaves sufficient freedom for individual development. Regular opportunities for mutual exchange among PSWs can help to address specific support needs at different points in time