Feelings of Burden in Palliative Care: A Qualitative Analysis of Medical Records.

BACKGROUND: Care for palliative care patients is often provided by unpaid caregivers (eg, family members) who take care of the patient's daily needs (eg, bathing, dressing). Family members of palliative care patients are involved in numerous ways. These tasks and responsibilities can make them feel burdened and even overburdened. AIM: We specifically looked at patients' medical records to determine what is being reported about burden and overburden and who seems to be mostly affected. Burden was understood as a weight or task that is difficult to accept or carry, whereas overburden indicates that this weight or task cannot be carried anymore. METHODS: We looked at 300 medical records of palliative care patients written by health-care professionals. Written notes were analyzed using latent content analysis as it helps to analyze large amounts of textual data qualitatively and to understand the underlying concepts of what was said. RESULTS: Most (73.5%) patients had a cancer diagnosis. Mean age was 67.6 years (range, 22-98 years). Burden and overburden were identified as main categories and further divided into the following subcategories: for patients and families. According to the written notes, patients often felt burdened by their disease, financial problems, situation at home, and families' reactions to their disease. By and large, patients felt overburdened by their own disease. Families often felt burdened because of issues related to patients' medical condition, providing home care, or financial and social aspects. Families mentioned home care and the decision-making process as being overburdening. CONCLUSION: Findings in the palliative care patients' medical records are inasmuch important, as they point at the health-care staff's awareness of possible weights and tasks that might be burdensome for patients and their families. Attention should be drawn to the documentation of medical records in order to identify recurrent difficulties and to help discuss these.

Autonomy and Fear of Synthetic Biology: How Can Patients' Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients.

We analyzed stable patients' views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients' views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, translated and fully anonymized. Thematic analysis was applied in order to examine stable patients' attitudes towards synthetic biology, its medical application, and their participation in trials. When patients were asked about synthetic biology in general, most of them were anxious that something uncontrollable could be created. After a concrete example of possible future treatment options, patients started to see synthetic biology in a more positive way. Our study constitutes an important first empirical insight into stable patients' views on synthetic biology and into the kind of fears triggered by the term "synthetic biology." Our results show that clear and concrete information can change patients' initial negative feelings towards synthetic biology. Information should thus be transmitted with great accuracy and transparency in order to reduce irrational fears of patients and to minimize the risk that researchers present facts too positively for the purposes of persuading patients to participate in clinical trials. Potential participants need to be adequately informed in order to be able to autonomously decide whether to participate in human subject research involving synthetic biology.

Bioethical Implications of Vulnerability and Politics for Healthcare in Ethiopia and The Ways Forward.

Vulnerability and politics are among the relevant and key topics of discussion in the Ethiopian healthcare context. Attempts by the formal bioethics structure in Ethiopia to deliberate on ethical issues relating to vulnerability and politics in healthcare have been limited, even though the informal analysis of bioethical issues has been present in traditional Ethiopian communities. This is reflected in religion, social values, and local moral underpinnings. Thus, the aim of this paper is to discuss the bioethical implications of vulnerability and politics for healthcare in Ethiopia and to suggest possible ways forward. First, we will briefly introduce what has been done to develop bioethics as a field in Ethiopia and what gaps remain concerning its implementation in healthcare practice. This will give a context for our second and main task - analyzing the healthcare challenges in relation to vulnerability and politics and discussing their bioethical implications. In doing so, and since these two concepts are intrinsically broad, we demarcate their scope by focusing on specific issues such as poverty, gender, health governance, and armed conflicts. Lastly, we provide suggestions for the ways forward.

The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients.

This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty (H1); hope as reflective uncertainty (H2); hope as self-therapy (H3). The purpose of the paper is twofold. First, it aims to underline the significance of hope in patients' medical decision-making, as well as the beneficence of hope for patients' well-being, and for progress in research. Second, it shows how philosophical investigations-in particular Descartes-explore the phenomenon of hope and provide medical empirical research with profitable insights and tools.