Lars Sandman

Adherence, shared decision-making and patient autonomy

In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients’ preferences and autonomy in decision making around treatments. This ‘adherence-paradigm’ thus encompasses shared decision-making as an ideal and patient perspective and autonomy as guiding goals of care. What this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter.

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.

Person Centred Care and Shared Decision Making: Implications for Ethics, Public Health and Research

This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective. This account leads up to a number of theoretical as well as empirical and practice oriented issues that, in view of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective.

Ethical Conflicts in Prehospital Emergency Care

This article analyses and presents a survey of ethical conflicts in prehospital emergency care. The results are based on six focus group interviews with 29 registered nurses and paramedics working in prehospital emergency care at three different locations: a small town, a part of a major city and a sparsely populated area. Ethical conflict was found to arise in 10 different nodes of conflict: the patient/carer relationship, the patient’s self-determination, the patient’s best interest, the carer’s professional ideals, the carer’s professional role and self-identity, significant others and bystanders, other care professionals, organizational structure and resource management, societal ideals, and other professionals. It is often argued that prehospital care is unique in comparison with other forms of care. However, in this article we do not find support for the idea that ethical conflicts occurring in prehospital care are unique, even if some may be more common in this context.

Experiencing Out-of-Hospital Cardiac Arrest: Significant Others’ Lifeworld Perspective

When patients suffer out-of-hospital cardiac arrests (OHCA), significant others find themselves with no choice about being there. After the event they are often left with unanswered questions about the life-threatening circumstances, or the patient’s death, or emergency treatment and future needs. When it is unclear how the care and the event itself will affect significant others’ well-being, prehospital emergency personnel face ethical decisions. In this article we describe the experiences of significant others present at OHCA, focusing on ethical aspects and values. Using a lifeworld phenomenological approach, 7 significant others were interviewed. The essence of the phenomenon of OHCA can be stated as unreality in the reality, which is characterized by overwhelming responsibility. The significant others experience inadequacy and limitation, they move between hope and hopelessness, and they struggle with ethical considerations and an insecurity about the future.The study findings show how significant others’ sense of an OHCA situation, when life is trembling, can threaten values deemed important for a good life.

Balancing between closeness and distance: emergency medical services personnel's experiences of caring for families at out-of-hospital cardiac arrest and sudden death

INTRODUCTION Out-of-hospital cardiac arrest (OHCA) is a lethal health problem that affects between 236,000 and 325,000 people in the United States each year. As resuscitation attempts are unsuccessful in 70-98% of OHCA cases, Emergency Medical Services (EMS) personnel often face the needs of bereaved family members. PROBLEM Decisions to continue or terminate resuscitation at OHCA are influenced by factors other than patient clinical characteristics, such as EMS personnels knowledge, attitudes, and beliefs regarding family emotional preparedness. However, there is little research exploring how EMS personnel care for bereaved family members, or how they are affected by family dynamics and the emotional contexts. The aim of this study is to analyze EMS personnels experiences of caring for families when patients suffer cardiac arrest and sudden death. METHODS The study is based on a hermeneutic lifeworld approach. Qualitative interviews were conducted with 10 EMS personnel from an EMS agency in southern Sweden. RESULTS The EMS personnel interviewed felt responsible for both patient care and family care, and sometimes failed to prioritize these responsibilities as a result of their own perceptions, feelings and reactions. Moving from patient care to family care implied a movement from well-structured guidance to a situational response, where the personnel were forced to balance between interpretive reasoning and a more direct emotional response, at their own discretion. With such affective responses in decision-making, the personnel risked erroneous conclusions and care relationships with elements of dishonesty, misguided benevolence and false hopes. The ability to recognize and respond to peoples existential questions and needs was essential. It was dependent on the EMS personnels balance between closeness and distance, and on their courage in facing the emotional expressions of the families, as well as the personnels own vulnerability. The presence of family members placed great demands on mobility (moving from patient care to family care) in the decision-making process, invoking a need for ethical competence. CONCLUSION Ethical caring competence is needed in the care of bereaved family members to avoid additional suffering. Opportunities to reflect on these situations within a framework of care ethics, continuous moral education, and clinical ethics training are needed. Support in dealing with personal discomfort and clear guidelines on family support could benefit EMS personnel.

Futile cardiopulmonary resuscitation for the benefit of others: An ethical analysis

It has been reported as an ethical problem within prehospital emergency care that ambulance professionals administer physiologically futile cardiopulmonary resuscitation (CPR) to patients having suffered cardiac arrest to benefit significant others. At the same time it is argued that, under certain circumstances, this is an acceptable moral practice by signalling that everything possible has been done, and enabling the grief of significant others to be properly addressed. Even more general moral reasons have been used to morally legitimize the use of futile CPR: That significant others are a type of patient with medical or care needs that should be addressed, that the interest of significant others should be weighed into what to do and given an equal standing together with patient interests, and that significant others could be benefited by care professionals unless it goes against the explicit wants of the patient. In this article we explore these arguments and argue that the support for providing physiologically futile CPR in the prehospital context fails. Instead, the strategy of ambulance professionals in the case of a sudden death should be to focus on the relevant care needs of the significant others and provide support, arrange for a peaceful environment and administer acute grief counselling at the scene, which might call for a developed competency within this field.

FRAMEWORK FOR SYSTEMATIC IDENTIFICATION OF ETHICAL ASPECTS OF HEALTHCARE TECHNOLOGIES: THE SBU APPROACH

Objectives: Assessment of ethical aspects of a technology is an important component of health technology assessment (HTA). Nevertheless, how the implementation of ethical assessment in HTA is to be organized and adapted to specific regulatory and organizational settings remains unclear. The objective of this study is to present a framework for systematic identification of ethical aspects of health technologies. Furthermore, the process of developing and adapting the framework to a specific setting is described. Methods: The framework was developed based on an inventory of existing approaches to identification and assessment of ethical aspects in HTA. In addition, the framework was adapted to the Swedish legal and organizational healthcare context, to the role of the HTA agency and to the use of non-ethicists. The framework was reviewed by a group of ethicists working in the field as well as by a wider set of interested parties including industry, interest groups, and other potential users. Results: The framework consists of twelve items with sub-questions, short explanations, and a concluding overall summary. The items are organized into four different themes: the effects of the intervention on health, its compatibility with ethical norms, structural factors with ethical implications, and long term ethical consequences of using the intervention. Conclusions: In this study, a framework for identifying ethical aspects of health technologies is proposed. The general considerations and methodological approach to this venture will hopefully inspire and present important insights to organizations in other national contexts interested in making similar adaptations.

Communication through in‐person interpreters: a qualitative study of home care providers' and social workers' views

AIMS AND OBJECTIVES To describe the experiences of home care providers and social workers in communication, via in-person interpreters, with patients who do not share a common language, and to offer suggestions for practice based on this description. BACKGROUND The use of interpreters is essential for successful communication to provide equal access to health care for patients not sharing a common language with care providers. Successful bilingual communication is probably even more complex within the home care services with its focus on medical treatment, care and daily support in relation to the more exclusive focus on medical treatment within hospital care. DESIGN An explorative, qualitative, descriptive study. METHODS Data were collected in seven focus group interviews. A total of 27 persons, working as registered nurses, assistant nurses and social workers in municipal home care, participated. The analysis was inspired by inductive content analysis. RESULTS The results express a traditional view on interpretation where the in-person interpreter is supposed to act to a greater or lesser extent as an objective and neutral conduit or communicator of what is said. The interpreter is also expected to observe when medical terms and other concepts need to be explained, which thus exceeds the basic role as a communicator of what was said. CONCLUSIONS This study emphasises the need to view the interpreter as an active and explicit party in a three-way communication. RELEVANCE TO CLINICAL PRACTICE Viewing the interpreter as an active and explicit party in a three-way communication and as an essential part of the care team might reduce the possible threat to patient confidentiality, and could contribute to solve the problem of interpreting the patients non-verbal signs.