Background Few empirical studies have been found that explore ethical challenges among persons in high public positions that are responsible for elder care. The aim of this paper was to illuminate the meaning of being in ethically difficult situations related to elder care as experienced by high level decision-makers. Methods A phenomenological-hermeneutic method was used to analyse the eighteen interviews conducted with political and civil servant high level decision-makers at the municipality and county council level from two counties in Sweden. (...) The participants worked at a planning and control as well as executive level and had both budget and quality of elder care responsibilities. Results Both ethical dilemmas and the meaning of being in ethically difficult situations related to elder care were revealed. No differences were seen between the politicians and the civil servants. The ethical dilemmas mostly concerned dealings with extensive care needs and working with a limited budget. The dilemmas were associated with a lack of good care and a lack of agreement concerning care such as vulnerable patients in inappropriate care settings, weaknesses in medical support, dissimilar focuses between the caring systems, justness in the distribution of care and deficient information. Being in ethically difficult situations was challenging. Associated with them were experiences of being exposed, having to be strategic and living with feelings such as aloneness and loneliness, uncertainty, lack of confirmation, the risk of being threatened or becoming a scapegoat and difficult decision avoidance. Conclusion Our paper provides further insight into the ethical dilemmas and ethical challenges met by high level decision-makers', which is important since the overall responsibility for elder care that is also ethically defensible rests with them. They have power and their decisions affect many stakeholders in elder care. Our results can be used to stimulate discussions between high level decision-makers and health care professionals concerning ways of dealing with ethical issues and the necessity of structures that facilitate dealing with them. Even if the high level decision-makers have learned to live with the ethical challenges that confronted them, it was obvious that they were not free from feelings of uncertainty, frustration and loneliness. Vulnerability was revealed regarding themselves and others. Their feelings of failure indicated that they felt something was at stake for the older adults in elder care and for themselves as well, in that there was the risk that important needs would go unmet. (shrink)

Background: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car (...) from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results: This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions: The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. (shrink)

BackgroundFew studies have paid attention to ethical responsibility related to malnutrition in elder care. The aim was to illuminate whether politicians and civil servants reason about malnutrition in elder care in relation to ethical responsibility, and further about possible causes and how to address them.MethodEighteen elected politicians and appointed civil servants at the municipality and county council level from two counties in Sweden were interviewed. They worked at a planning, control and executive level, with responsibility for both the elder care (...) budget and quality of care. Qualitative method was used for the data analysis.ResultsTwo themes emerged from their reasoning about malnutrition related to ethical responsibility. The theme assumed role involves the subthemes quality of care and costs, competent staff and govern at a distance. Old and ill patients were mentioned as being at risk for malnutrition. Caregivers were expected to be knowledgeable and stated primary responsible for providing adequate nutritional care. Extended physician responsibility was requested owing to patients' illnesses. Little was reported on the local management's role or on their own follow-up routines. The theme moral perception includes the subthemes discomfort, trust and distrust. Feelings of discomfort concerned caregivers having to work in a hurried, task-oriented manner. Trust meant that they believed for the most part that caregivers had the competence to deal appropriately with nutritional care, but they felt distrust when nutritional problems reappeared on their agenda. No differences could be seen between the politicians and civil servants.ConclusionNew knowledge about malnutrition in elder care related to ethical responsibility was illuminated by persons holding top positions. Malnutrition was stressed as an important dimension of the elder care quality. Governing at a distance meant having trust in the staff, on the one hand, and discomfort and distrust when confronted with reports of malnutrition, on the other. Distrust was directed at caregivers, because despite the fact that education had been provided, problems reappeared. Discomfort was felt when confronted with examples of poor nutritional care and indicates that the participants experienced failure in their ethical responsibility because the quality of nutritional care was at risk. (shrink)