In this article, a teleological model for analysis of everyday ethical situations in dementia care is used to analyse and clarify perennial ethical problems in nursing home care for persons with dementia. This is done with the aim of describing how such a model could be useful in a concrete care context. The model was developed by Sandman and is based on four aspects: the goal; ethical side-constraints to what can be done to realize such a goal; structural constraints; and (...) nurses’ ethical competency. The model contains the following main steps: identifying and describing the normative situation; identifying and describing the different possible alternatives; assessing and evaluating the different alternatives; and deciding on, implementing and evaluating the chosen alternative. Three ethically difficult situations from dementia care were used for the application of the model. The model proved useful for the analysis of nurses’ everyday ethical dilemmas and will be further explored to evaluate how well it can serve as a tool to identify and handle problems that arise in nursing care. (shrink)

Background: As frail older people might have difficulties in expressing themselves, their needs are often interpreted by others, for example, by significant others, whose information health care staff often have to rely on. This, in turn, can put health care staff in ethically difficult situations, where they have to choose between alternative courses of action. One aspect that might be especially difficult to express is that of existential loneliness. We have only sparse knowledge about whether, and in what way, the (...) views of frail older persons and their significant others concerning existential loneliness are in concordance. Objective: To contrast frail older (>75) persons’ experiences with their significant others’ perceptions of existential loneliness. Methods: A case study design was chosen for this study. Individual interviews with frail older persons (n = 15) and interviews with their significant others (n = 19), as well as field notes, served as a basis for the study. A thematic analysis was used to interpret data. Ethical considerations: This study was conducted in accordance with the principles of research ethics. Findings: The findings showed three themes: (1) Meaningless waiting in contrast to lack of activities, (2) Longing for a deeper connectedness in contrast to not participating in a social environment and (3) Restricted freedom in contrast to given up on life. Discussion: Knowledge about the tensions between older persons’ and their significant others’ views of existential loneliness could be of use as a basis for ethical reflections on the care of older people and in the encounter with their significant others. Conclusion: It is of importance that health care professionals listen to both the frail older person and their significant other(s) and be aware of whose voice that the care given is based on, in order to provide care that is beneficial and not to the detriment of the older person. (shrink)

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely (...) connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation. (shrink)

Background: A predictive genetic test for Huntington’s disease can be used before any symptoms are apparent, but there is only sparse knowledge about the long-term consequences of a positive test result. Such knowledge is important in order to gain a deeper understanding of families’ experiences. Objectives: The aim of the study was to describe a young couple’s long-term experiences and the consequences of a predictive test for Huntington’s disease. Research design: A descriptive case study design was used with a longitudinal (...) narrative life history approach. Participants and research context: The study was based on 18 interviews with a young couple, covering a period of 2.5 years; starting 6 months after the disclosure of the test results showing the woman to be a carrier of the gene causing Huntington’s disease. Ethical considerations: Even though the study was extremely sensitive, where potential harm constantly had to be balanced against the benefits, the couple had a strong wish to contribute to increased knowledge about people in their situation. The study was approved by the ethics committee. Findings: The results show that the long-term consequences were devastating for the family. This 3-year period was characterized by anxiety, repeated suicide attempts, financial difficulties and eventually divorce. Discussion: By offering a predictive test, the healthcare system has an ethical and moral responsibility. Once the test result is disclosed, the individual and the family cannot live without the knowledge it brings. Support is needed in a long-term perspective and should involve counselling concerning the families’ everyday life involving important decision-making, reorientation towards a new outlook of the future and the meaning of life. Conclusion: As health professionals, our ethical and moral responsibility thus embraces not only the phase in direct connection to the actual genetic test but also a commitment to provide support to help the family deal with the long-term consequences of the test. (shrink)

Background Person-centred care is based on ethical principles, and it is regarded as high-quality care. Care of older persons should embrace person-centredness. During the pandemic, older persons were highlighted as a vulnerable group at risk of developing serious illness and/or suffering death from COVID-19. Several pandemic-related measures were introduced in residential care facilities (RCFs) to reduce this risk, which influenced the possibilities to lead and provide a person-centred care. Aim This study’s aim was to explore ethical challenges in relation to (...) person-centredness during the COVID-19 pandemic, from the perspective of leaders in RCFs. Research design The study had a qualitative descriptive design. Participants and research context Semi-structured interviews were conducted with 26 leaders working in RCFs in Sweden. Data were analysed using conventional content analysis. Ethical considerations The study was approved by the Swedish Ethical Review Authority. The participants received oral and written information about the study and gave written consent. The study was conducted in accordance with the Declaration of Helsinki. Findings The overarching ethical challenge was Having to disregard the individual needs of the person in order to protect the group and society. This included (a) Protecting the group versus promoting the older person’s autonomy; (b) Being forced to lead care based on uncertainty instead of evidence; (c) Striving to provide dignified care but lacking opportunities; and (d) Going far beyond ordinary duty and endangering one’s own and the staff’s health. Discussion The ethical challenges meant being torn between the person’s individual needs and protecting the group and society, with clashing ethical principles as a consequence. Conclusions The leaders faced ethical situations resulting in undignified and compromised person-centred care, which has implications for stakeholders and management who need to address the work conditions in RCFs. (shrink)

The aim of this study was to describe the reasoning of people aged 60 years and over about prioritization in health care with regard to age and willingness to pay. Healthy people (n = 300) and people receiving continuous care and services (n = 146) who were between 60 and 101 years old were interviewed about their views on prioritization in health care. The transcribed interviews were analysed using manifest and latent qualitative content analysis. The participants' reasoning on prioritization embraced (...) eight categories: feeling secure and confident in the health care system; being old means low priority; prioritization causes worries; using underhand means in order to be prioritized; prioritization as a necessity; being averse to anyone having precedence over others; having doubts about the distribution of resources; and buying treatment requires wealth. (shrink)