Ingrid Bolmsjö

Everyday Ethical Problems in Dementia Care: A teleological Model

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.

Everyday Ethics in the Care of Elderly People

This article analyses the general ethical milieu in a nursing home for elderly residents and provides a decision-making model for analysing the ethical situations that arise. It considers what it means for the residents to live together and for the staff to be in ethically problematic situations when caring for residents. An interpretative phenomenological approach and Sandman’s ethical model proved useful for this purpose. Systematic observations were carried out and interpretation of the general ethical milieu was summarized as ‘being in the same world without meeting’. Two themes and four subthemes emerged from the analysis. Three different ethical problems were analysed. The outcome of using the decision-making model highlighted the discrepancy between the solutions used and well-founded solutions to these problems. An important conclusion that emerged from this study was the need for a structured tool for reflection.

Conflicts of Interest: experiences of close relatives of patients suffering from amyotrophic lateral sclerosis:

It is well known that close relatives of terminally ill patients endure great emotional stress. Many factors, such as existential concerns, contribute to the distress of these relatives. In this study, interviews were conducted to explore experiences concerning life restrictions, emotional distress, and limited support, in a group of close relatives of patients with amyotrophic lateral sclerosis (ALS). The purpose was to identify, illuminate and clarify ethical problems related to these experiences. The results indicate that close relatives of patients with ALS need someone to talk to, as well as more information about the disease and its process. Furthermore, the study illustrates how ethical problems are related to choices and conflicts, and that a process including shared decision making is often an ideal when trying to find a solution to ethical problems.

From cure to palliation: concept, decision and acceptance

The aim of this paper is to present and discuss nurses’ and physicians’ comments in a questionnaire relating to patients’ transition from curative treatment to palliative care. The four-page questionnaire relating to experiences of and attitudes towards communication, decision-making, documentation and responsibility of nurses and physicians and towards the competence of patients was developed and sent to a random sample of 1672 nurses and physicians of 10 specialties. The response rate was 52% (n = 844), and over one-third made comments. The respondents differed in their comments about three areas: the concept of palliative care, experiences of unclear decision-making and difficulties in acceptance of the patient’s situation. The responses are analysed in terms of four ethical theories: virtue ethics, deontology, consequentialism and casuistry. Many virtues considered to be appropriate for healthcare personnel to possess were invoked. Compassion, honesty, justice and prudence are especially important. However, principles of medical ethics, such as the deontological principle of respect for self-determination and the consequence of avoidance of harm, are also implied. Casuistry may be particularly helpful in analysing certain areas of difficulty—namely, what is meant by “palliative care”, decision-making and accepting the patient’s situation. Keeping a patient in a state of uncertainty often causes more suffering than necessary. Communication among the staff and with patients must be explicit. Many of the staff have not had adequate training in communicating with patients who are at the end of their life. Time for joint reflection has to be regained, and training in decision-making is essential. In our opinion, palliative care in Sweden is in need of improvement.

Conceptual development of "at-homeness" despite illness and disease a review.

Only one empirical study, the one by Zingmark, Norberg and Sandman published in 1995, explicitly focuses on at-homeness, the feeling of being metaphorically at-home, as a particular aspect of wellness. However, other studies reveal aspects of at-homeness, but if or how such aspects of at-homeness are related to each other is unclear. For this reason, the aim was to review Scandinavian nursing research related to at-homeness in the context of wellness–illness in severe and long-term conditions in order to take a step towards conceptual clarification of “at-homeness.” The review included interpretive studies related to severe and long-term illness conducted in Sweden: 10 original articles and 5 doctoral theses. “At-homeness” was found to be a contextually related meaning of wellness despite illness and disease embedded in the continuum of being metaphorically at-home and metaphorically homeless. This was characterized by three interrelated aspects and four processes: being safe through expanding–limiting experiences of illness and time, being connected through reunifying–detaching ways of relating, and being centred through recognition–non-recognition of oneself in the experience and others giving–withdrawing a place for oneself. This conceptualization is to be regarded as a step in conceptual clarification. Further empirical investigation and theoretical development of “at-homeness” are needed. The conceptualization will be a step of plausible significance for the evaluation of interventions aimed at enhancing wellness for people with severe long-term illness, such as the frail elderly, and people with chronic illness or palliative care needs.

Review Article: End-of-Life Care for Old People: A Review of the Literature.

The aim of this study was to make an inventory of various aspects of end-of-life care of the old people. An additional aim was to illuminate gaps in existing knowledge. A systematic literature review focusing on intervention studies was carried out. Three concepts were of special interest: end-of-life care, palliative care, and terminal care. The result encompassed 29 studies, and the articles were grouped together under 4 headings: education and support for close relatives, education and support for staff, education and support for patients, and articles dealing with care planning. The result highlights the need for further research regarding end-of-life care in geographical and cultural settings that differ from those in the USA, needs of old people (ie, 80+), preferences concerning end-of-life care, and the effect of adjusted and generalizable palliative care models.The aim of this study was to make an inventory of various aspects of end-of-life care of the old people. An additional aim was to illuminate gaps in existing knowledge. A systematic literature review focusing on intervention studies was carried out. Three concepts were of special interest: end-of-life care, palliative care, and terminal care. The result encompassed 29 studies, and the articles were grouped together under 4 headings: education and support for close relatives, education and support for staff, education and support for patients, and articles dealing with care planning. The result highlights the need for further research regarding end-of-life care in geographical and cultural settings that differ from those in the USA, needs of old people (ie, 80+), preferences concerning end-of-life care, and the effect of adjusted and generalizable palliative care models.

End-of-Life Care for Old People: A Review of the Literature

The aim of this study was to make an inventory of various aspects of end-of-life care of the old people. An additional aim was to illuminate gaps in existing knowledge. A systematic literature review focusing on intervention studies was carried out. Three concepts were of special interest: end-of-life care, palliative care, and terminal care. The result encompassed 29 studies, and the articles were grouped together under 4 headings: education and support for close relatives, education and support for staff, education and support for patients, and articles dealing with care planning. The result highlights the need for further research regarding end-of-life care in geographical and cultural settings that differ from those in the USA, needs of old people (ie, 80+), preferences concerning end-of-life care, and the effect of adjusted and generalizable palliative care models.The aim of this study was to make an inventory of various aspects of end-of-life care of the old people. An additional aim was to illuminate gaps in existing knowledge. A systematic literature review focusing on intervention studies was carried out. Three concepts were of special interest: end-of-life care, palliative care, and terminal care. The result encompassed 29 studies, and the articles were grouped together under 4 headings: education and support for close relatives, education and support for staff, education and support for patients, and articles dealing with care planning. The result highlights the need for further research regarding end-of-life care in geographical and cultural settings that differ from those in the USA, needs of old people (ie, 80+), preferences concerning end-of-life care, and the effect of adjusted and generalizable palliative care models.

Challenging assumptions in end-of-life situations

An actual case is used to highlight ethical and psychological problems which may arise in the care of terminally ill patients. The case is structured and analysed, focusing on five different situations in which more than one alternative action is possible. This study shows that between description and prediction on the one hand, and decision making on the other, the interpretation of the situation and the consideration of possible alternative actions both play an important role. Different factors that may influence the interpretations made by the staff include their values, knowledge, experiences and empathy.

Factors associated with changes in quality of life in patients undergoing allogeneic haematopoietic stem cell transplantation.

It is well known that patients undergoing allogeneic haematopoietic stem cell transplantation (HSCT) experience changes in quality of life. We investigated factors associated with quality of life changes in adult HSCT patients. The Functional Assessment of Cancer Therapy - Bone Marrow Transplantation (FACT-BMT) scale, supplemented with the Functional Assessment of Chronic Illness Therapy - Spiritual Well-being (FACIT-Sp) subscale, was administered on three occasions, immediately before transplantation, 100 days and 12 months after transplantation. Analyses of nine selected factors were made where changes in quality of life were found. Seventy-five patients were included and 40 of these completed the study. Emotional well-being was found to improve between the baseline and 100 days, while all other dimensions deteriorated, including overall quality of life. Physical and social/family well-being deteriorated between the baseline and the 12-month follow-up, while emotional well-being improved. The main factors associated with deteriorating quality of life over time were found to be significant infections, female gender and transplantation with stem cells from a sibling donor. In our further studies we aim to focus on the relationships between patients and sibling donors in order to improve the care. Careful attention must be paid to continuous adequate information during the transplantation procedure.

Being in want of control: Experiences of being on the road to, and making, a suicide attempt

Attempted suicide is a risk factor for future suicidal behaviour, but understanding suicidality from the perspective of people who have experienced attempted suicide is limited. The aim of the study was to explore the lived experience of being suicidal and having made a suicide attempt, in order to identify possible implications for health care professionals. Semi-structured individual interviews were held with 10 persons shortly after they attempted suicide and were analysed through qualitative content analysis. The participants’ experience of being suicidal and of having attempted suicide could be described as “Being on the road towards suicidal action”, which culminated in an experience of either chaos or turned off emotions, “Making sense of the suicide attempt”, and “Opening the door to possible life lines”. An overall theme, “Being in want of control”, captured their all-embracing lack of sense of control and was seen in relation to different aspects of oneself, overall life-situation, the immediate suicide attempt situation and in the outlook on the future. Being in want of control may be a relevant and general feature of being suicidal. People who have attempted suicide need more adequate help to break vicious circles before they reach a point of no return and enter an acute suicidal state of mind. Patients’ experience-based knowledge is highly important to listen to and use clinically as well as theoretically when constructing suicide prevention programs.