Reasons for and Frequency of End-of-Life Hospital Admissions: General Practitioners' Perspective on Reducing End-of-Life Hospital Referrals.

BACKGROUND: Many palliative care patients are admitted to hospital shortly before death even though the acute hospital setting is not considered ideal for end-of-life care (EOLC). OBJECTIVES: This study aimed to evaluate General Practitioners' (GPs') perspective on the frequency of and reasons for hospital referrals of these patients. METHODS: Cross-sectional survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. GP characteristics, frequency and type of end-of-life transfers, reasons for referrals, confidence in EOLC, and regional palliative care provision were assessed. Multivariate regression analysis was performed to identify the variables associated with frequency of hospital referrals at the end of life. RESULTS: The questionnaire was completed by 579 (31%) GPs. Frequent hospital referrals shortly before death were reported by 38%. GPs were less likely to report frequent hospitalizations when they felt confident in palliative care competencies, especially in anticipation of crisis. GPs were more likely to report frequent hospitalizations as being due to relatives' wishes, difficulties in symptom control, inadequate or absent care network, and the expense of palliative care at home. CONCLUSIONS: The results suggest that adequate support of and a care network for palliative patients and their caregivers are crucial for continuous home-based EOLC. Timely recognition of the advanced palliative phase as well as the involvement of well-trained GPs who feel confident in palliative care, together with adequate financial support for outpatient palliative care, might diminish the frequency of transitions shortly before death.

[Physician perspectives on the impact of patient preferences and the role of next-of-kin of patients in evidence-based decision-making: A qualitative interview study from oncology]. / Ärztliche Perspektiven auf die Bedeutung von Patientenpräferenzen und die Rolle Angehöriger bei der evidenzbasierten Entscheidungsfindung ­ eine qualitative Interviewstudie aus der Onkologie.

The impact of patient preferences in evidence-based medicine is a complex issue which touches on theoretical questions as well as medical practice in the clinical context. The interaction between evidence-based recommendations and value-related patient preferences in clinical practice is, however, highly complex and requires not only medical knowledge but social, psychological and communicative competencies on the side of the physician. The multi-layered process of oncology physicians' clinical decision-making was explored in 14 semi-structured interviews with respect to a first diagnosis of a pancreatic adenocarcinoma. A case vignette was used and the Q method ("card sorting") was applied to analyze the influence of different factors (such as evidence, patient preferences and the role of relatives) on physicians' deliberations. Content analysis (Mayring) was performed. The results show that the participating oncologists consider patient preferences as an important guidance which, however, is limited on certain occasions where the physicians assume a leadership role in decision-making. From the interviewees' perspectives, the preferences of the patients' relatives are likewise of high importance because debilitating oncologic treatments can only be carried out if patients have both social and psychological support. There is a need for an ongoing reflection of the physicians' own values and due consideration of the patients' social role within the context of shared decision-making.

"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.

Interprofessional Silence at the End of Life: Do Swiss General Practitioners and Hospital Physicians Sufficiently Share Information About Their Patients?

BACKGROUND: Empirical research suggests that the quality of patient care at the end of life (EOL) is influenced by the effectiveness of the collaboration between the general practitioners (GPs) and hospital physicians (HPs). AIM: To identify possible difficulties and barriers to effective collaboration at the EOL between GPs and HPs from the perspective of Swiss GPs. DESIGN: Twenty-three qualitative semi-structured interviews with GPs were transcribed and analyzed using Mayring's content analysis. Interdisciplinary clinical-ethical analysis focused on the quality of GP and HP professional collaboration. RESULTS: GPs described the quality of collaboration with HPs as poor, in particular the lack of communication. There were two main issues to emerge. First, infrequent communication with HPs could negatively affect the care of the patient. Second, GPs were concerned with the lack of information about hospital care and involvement in medical decision making given their longstanding relationships with their patients. CONCLUSIONS: The research showed that Swiss GPs were concerned with the quality of their patients' EOL care and the current level of GP/HP collaboration. GPs appealed for greater involvement with EOL care decisions based on their relationship of care and knowledge of patient preferences. These findings require further critical evaluation to explore the potential advantages for patient care. Existing evidence suggests that there are measurable health benefits from successful GP/HP collaborations. A change in the way GPs maintain involvement with their patients during hospitalizations would be warranted if it resulted in a better use of resources, better patient experiences, and better health outcomes.

"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 & 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.