Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe.

BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. RESULTS: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.

Negotiating treatment and managing expectations in chronic kidney disease: A qualitative study in Argentina.

OBJECTIVES: To describe how patients with CKD negotiated assigned responsibilities in the management of their disease, resulting in potential relational nonadherence. METHODS: Qualitative study performed in two healthcare facilities in Buenos Aires, Argentina, including 50 patients and 14 healthcare providers. We conducted semistructured interviews which were analysed using a frame of reference with concepts of Burden of Treatment and Cognitive Authority theories. FINDINGS: Adherence to treatment defined "good patients". Patients needed to negotiate starting treatment, its modality and dialysis schedule, although most patients felt they did not participate in the decision process and that providers did not acknowledge implications of these decisions on their routine. Some patients skipped dialysis if concerns were not attended. Regularly, patients negotiated frequency of visits, doses, dietary restrictions and redefined relationships with their support networks, sometimes with devasting effects. As a result of overwhelming uncertainty some patients refused enrolling into a transplant program. When the frequency of complications increased, patients considered abandoning dialysis. CONCLUSION: When patients perceived demands were excessive or conflicting, they entered into negotiations. Relationally induced nonadherence may arise when professionals do not or cannot enter into negotiations over patients' beliefs or knowledge about what is possible for them to do.

Barriers to hypertension and diabetes management in primary health care in Argentina: qualitative research based on a behavioral economics approach.

Despite efforts to improve detection and treatment of adults with hypertension and diabetes in Argentina, many public healthcare system users remain undiagnosed or face barriers in managing these diseases. The purpose of this study is to identify health system, provider, and user-related factors that may hinder detection and treatment of hypertension and diabetes using a traditional and behavioral economics approach. We did qualitative research using in-depth semistructured interviews and focus groups with healthcare providers and adult users of Public Primary Care Clinics. Health system barriers included inadequate care accessibility; poor integration between primary care clinics and local hospitals; lack of resources; and gender bias and neglect of adult chronic disease. Healthcare provider-related barriers were inadequate training; lack of availability or reluctance to adopt Clinical Practice Guidelines; and lack of counseling prioritization. From a behavioral economics perspective, bottlenecks were related to inertia and a status quo, overconfidence, and optimism biases. User-related barriers for treatment adherence included lack of accurate information; resistance to adopt lifelong treatment; affordability; and medical advice mistrust. From a behavioral economics perspective, the most significant bottlenecks were overconfidence and optimism, limited attention, and present biases. Based on these findings, new interventions that aim to improve prevention and control of chronic conditions can be proposed. The study provides empirical evidence regarding the barriers and bottlenecks in managing chronic conditions in primary healthcare settings. Results may contribute to the design of behavioral interventions targeted towards healthcare provision for the affected population.