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  • 1.
    Af Sandeberg, Margareta
    et al.
    Department of Women's and Children's Health, Karolinska Institutet, Children's and Women's Health, Karolinska University Hospital.
    Wenemark, Marika
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Business support and Development, Department of Health and Care Development.
    Bartholdson, Cecilia
    Department of Women's and Children's Health, Karolinska Institutet, Children's and Women's Health, Karolinska University Hospital.
    Lützén, Kim
    Department of Women's and Children's Health, Karolinska Institutet.
    Pergert, Pernilla
    Department of Women's and Children's Health, Karolinska Institutet, Children's and Women's Health, Karolinska University Hospital.
    To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R)2017In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 18, no 14, p. 1-9Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction.

    METHODS: The procedure included linguistic translation and cultural adaptation of MDS-R's paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care.

    RESULTS: To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens.

    CONCLUSIONS: Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.

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    To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R)
  • 2.
    Brüggemann, Jelmer
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences.
    Swahnberg, Katarina
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Linnaeus University, Sweden.
    Wijma, Barbro
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Linköping.
    A first online intervention to increase patients perceived ability to act in situations of abuse in health care: reports of a Swedish pre-post study2015In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 16, no 35Article in journal (Refereed)
    Abstract [en]

    Background: Efforts to counteract abuse in health care, defined as patient-experienced abuse, have mainly focused on interventions among caregivers. This study is the first to test an online intervention focusing on how patients can counteract such abuse. The intervention aimed at increasing patients intention and perceived ability to act in future situations where they risk experiencing abuse. Methods: Participants were recruited through a nephrology clinic in Sweden. The intervention consisted of an online program that aimed to stimulate patients to think of possible actions in situations in which they risk experiencing abuse. The program comprised stories and exercises in text and comic form. The participants filled out a questionnaire immediately before and after going through the program, as well as during follow-up four to eight weeks later. Results: Forty-eight patients (39 %) participated in the study and spent, on average, 41 min responding to questions and going through the program. Both men and women, of various ages and educational backgrounds, participated. An increase in participants self-reported ability to identify opportunities to act in a given situation was seen immediately afterwards, as well as during follow up. Conclusion: The current study suggests that it is feasible and most likely useful to a variety of patients to work with the provided material that has the aim of counteracting abuse in health care. It would be of interest to further develop ways of using comics and to test similar interventions in other health care settings.

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  • 3.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Lythell, Caroline
    Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Waldreus, Nana
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Jaarsma, Tiny
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
    Ångström, Helene
    Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Milovanovic, Micha
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
    Karlsson, Marit
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Närvårdskliniken.
    Milberg, Anna
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Thulesius, Hans
    Linnaeus Univ, Sweden; Reg Kronoberg, Sweden.
    Hedman, Christel
    Karolinska Inst, Sweden; Stockholms Sjukhem Fdn, Sweden.
    Söderlund Schaller, Anne
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Jaarsma, Pier
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians2023In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 24, no 1, article id 61Article in journal (Refereed)
    Abstract [en]

    BackgroundThirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area.AimThe aim of this study was to explore palliative care physicians experiences of ethical challenges in relation to thirst in terminally ill patients.MethodsA qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.ResultsWhen presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patients autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering.ConclusionsAll physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

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  • 4.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Culture and Society, Division of Philosophy, History, Arts and Religion. Linköping University, Faculty of Arts and Sciences.
    Galvis Rojas, Giovanni
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Juth, Niklas
    Karolinska Inst, Sweden.
    Genetic testing for breast cancer risk, fromBRCA1/2to a seven gene panel: an ethical analysis2020In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 21, no 1, article id 102Article in journal (Refereed)
    Abstract [en]

    Background Genetic testing is moving from targeted investigations of monogenetic diseases to broader testing that may provide more information. For example, recent health economic studies of genetic testing for an increased risk of breast cancer suggest that it is associated with higher cost-effectiveness to screen for pathogenic variants in a seven gene panel rather than the usual two gene test for variants inBRCA1andBRCA2. However, irrespective of the extent to which the screening of the panel is cost-effective, there may be ethical reasons to not screen for pathogenic variants in a panel, or to revise the way in which testing and disclosing of results are carried out. Main text In this paper we discuss the ethical aspects of genetic testing for an increased risk of breast cancer with a special focus on the ethical differences between screening for pathogenic variants inBRCA1/2and a seven gene panel. The paper identifies that the panel increases the number of secondary findings as well as the number of variants of uncertain significance as two specific issues that call for ethical reflection. Conclusions We conclude that while the problem of handling secondary findings should not be overstated with regard to the panel, the fact that the panel also generate more variants of uncertain significance, give rise to a more complex set of problems that relate to the value of health as well as the value of autonomy. Therefore, it is insufficient to claim that the seven gene panel is preferable by only referring to the higher cost effectiveness of the panel.

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  • 5.
    Heidenreich, Kaja
    et al.
    Univ Hlth Care Res Ctr, Sweden.
    Svantesson, Mia
    Univ Hlth Care Res Ctr, Sweden.
    Karlsson, Marit
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Närvårdskliniken.
    Bremer, Anders
    Linnaeus Univ, Sweden.
    Exploring what is reasonable: uncovering moral reasoning of vascular surgeons in daily2023In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 24, no 1Article in journal (Refereed)
    Abstract [en]

    Background Vascular surgery offers a range of treatments to relieve pain and ulcerations, and to prevent sudden death by rupture of blood vessels. The surgical procedures involve risk of injury and harm, which increases with age and frailty leading to complex decision-making processes that raise ethical questions. However, how vascular surgeons negotiate these questions is scarcely studied. The aim was therefore to explore vascular surgeons moral reasoning of what ought to be done for the patient.Methods Qualitative, semi-structured interviews were conducted with 19 vascular surgeons working at three Swedish university hospitals. Data were analysed according to systematic text condensation.Results The surgeons moral reasoning about what ought to be done comprised a quest to relieve suffering and avoid harm by exploring what is reasonable to do for the patient. Exploring reasonableness included to shift one & acute;s perspective from the vessels to the whole person, to balance patients conflicting needs and to place responsibility for right decision on one & acute;s shoulders. The shift from blood vessels to the whole person implied gaining holistic knowledge in pondering of what is best, struggling with ones authority for surgery through dialogue, and building relationship for mutual security. To balance patients conflicting needs implied weighing the patients independence and a sense of being whole against ease of suffering, respecting the patients will against protecting life and well-being, and weighing longer life against protecting the present well-being. Finally, to place responsibility on one & acute;s shoulders was conveyed as an urge to remind oneself of the risk of complications, withholding ones power of proficiency, and managing time during the illness course.Conclusions This study contributes to uncovering how moral reasoning is embodied in the vascular surgeons everyday clinical discourse as a tangible part of their patient care. The results underpin the significance of moral considerations in the assemblage of medical knowledge and technical skills to further understand vascular surgeons clinical practice. The clinical application of these results is the need of forums with sufficient possibilities for articulating these important moral considerations in everyday care.

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  • 6.
    McKay, Francis
    et al.
    Univ Newcastle, England.
    Williams, Bethany J.
    Leeds Teaching Hosp NHS Trust, England.
    Prestwich, Graham
    Yorkshire and Humber Academic Health Science Network, England.
    Bansal, Daljeet
    Leeds Teaching Hosp NHS Trust, England.
    Treanor, Darren
    Linköping University, Department of Biomedical and Clinical Sciences, Division of Inflammation and Infection. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Diagnostics, Clinical pathology. Linköping University, Center for Medical Image Science and Visualization (CMIV). Leeds Teaching Hosp NHS Trust, England; Univ Leeds, England.
    Hallowell, Nina
    Univ Oxford, England; Univ Oxford, England.
    Artificial intelligence and medical research databases: ethical review by data access committees2023In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 24, no 1, article id 49Article, review/survey (Refereed)
    Abstract [en]

    BackgroundIt has been argued that ethics review committees-e.g., Research Ethics Committees, Institutional Review Boards, etc.- have weaknesses in reviewing big data and artificial intelligence research. For instance, they may, due to the novelty of the area, lack the relevant expertise for judging collective risks and benefits of such research, or they may exempt it from review in instances involving de-identified data.Main bodyFocusing on the example of medical research databases we highlight here ethical issues around de-identified data sharing which motivate the need for review where oversight by ethics committees is weak. Though some argue for ethics committee reform to overcome these weaknesses, it is unclear whether or when that will happen. Hence, we argue that ethical review can be done by data access committees, since they have de facto purview of big data and artificial intelligence projects, relevant technical expertise and governance knowledge, and already take on some functions of ethical review. That said, like ethics committees, they may have functional weaknesses in their review capabilities. To strengthen that function, data access committees must think clearly about the kinds of ethical expertise, both professional and lay, that they draw upon to support their work.ConclusionData access committees can undertake ethical review of medical research databases provided they enhance that review function through professional and lay ethical expertise.

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  • 7.
    Pergert, Pernilla
    et al.
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Bartholdson, Cecilia
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Wenemark, Marika
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Business support and Development, Department of Health and Care Development.
    Lutzen, Kim
    Karolinska Inst, Sweden.
    af Sandeberg, Margareta
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments2018In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 35Article in journal (Refereed)
    Abstract [en]

    Background: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. Methods: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from almost never true to almost always true; while the Swedish HECS labels range from never to always. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. Results: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected never and always. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word respect was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients wishes implied always complying with them. Conclusions: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.

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  • 8.
    Sandman, Lars
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences. Vastra, Sweden; Boras Univ, Sweden.
    Hansson, Emma
    Sahlgrens Univ Hosp, Sweden; Gothenburg Univ, Sweden.
    An ethics analysis of the rationale for publicly funded plastic surgery2020In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 21, no 1, article id 94Article in journal (Refereed)
    Abstract [en]

    Background Healthcare systems are increasingly struggling with resource constraints, given demographic changes, technological development, and citizen expectations. The aim of this article is to normatively analyze different suggestions regarding how publicly financed plastic surgery should be delineated in order to identify a well-considered, normative rationale. The scope of the article is to discuss general principles and not define specific conditions or domains of plastic surgery that should be treated within the publicly financed system. Methods This analysis uses a reflective equilibrium approach, according to which considered normative judgements in one area should be logically and argumentatively coherent with considered normative judgements and background theories at large within a system. Results and conclusions In exploring functional versus non-function conditions, we argue that it is difficult to find a principled reason for anabsolutepriority of functional conditions over non-functional conditions. Nevertheless, functional conditions are relatively easier to establish objectively, and surgical intervention has a clear causal effect on treating a functional condition. Considering non-functional conditions that require plastic surgery [i.e., those related to appearance or symptomatic conditions (not affecting function)], we argue that the patient needs to experience some degree of suffering (and not only a preference for plastic surgery), which must be validated in some form by the healthcare system. This validation is required for both functional and non-functional conditions. Functional conditions are validated by distinguishing between statistically normal and abnormal functioning. Similarly, for non-functional conditions, statistical normality represents a potential method for distinguishing between what should and should not be publicly funded. However, we acknowledge that such a concept requires further development.

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  • 9.
    Sjostrand, Manne
    et al.
    Harvard University, MA 02163 USA; Karolinska Institute, Sweden.
    Karlsson, Petter
    Karolinska Institute, Sweden.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. University of Coll Boras, Sweden.
    Helgesson, Gert
    Karolinska Institute, Sweden.
    Eriksson, Stefan
    Uppsala University, Sweden.
    Juth, Niklas
    Karolinska Institute, Sweden.
    Conceptions of decision-making capacity in psychiatry: interviews with Swedish psychiatrists2015In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 16, no 34Article in journal (Refereed)
    Abstract [en]

    Background: Decision-making capacity is a key concept in contemporary healthcare ethics. Previous research has mainly focused on philosophical, conceptual issues or on evaluation of different tools for assessing patients capacity. The aim of the present study is to investigate how the concept and its normative role are understood in Swedish psychiatric care. Of special interest for present purposes are the relationships between decisional capacity and psychiatric disorders and between health law and practical ethics. Methods: Eight in-depth interviews were conducted with Swedish psychiatrists. The interviews were analysed according to descriptive qualitative content analysis in which categories and sub-categories were distilled from the material. Results: Decision-making capacity was seen as dependent on understanding, insight, evaluation, reasoning, and abilities related to making and communicating a choice. However, also the actual content of the decision was held as relevant. There was an ambivalence regarding the relationship between psychiatric disorders and capacity and a tendency to regard psychiatric patients who made unwise treatment decisions as decisionally incapable. However, in cases relating to patients with somatic illnesses, the assumption was rather that patients who made unwise decisions were imprudent but yet decisionally capable. Conclusions: The respondents conceptions of decision-making capacity were mainly in line with standard theories. However, the idea that capacity also includes aspects relating to the content of the decision clearly deviates from the standard view. The tendency to regard imprudent choices by psychiatric patients as betokening lack of decision-making capacity differs from the view taken of such choices in somatic care. This difference merits further investigations.

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  • 10.
    Sjostrand, Manne
    et al.
    Karolinska Institute, Sweden; Harvard University, MA USA.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. University of Coll Boras, Sweden.
    Karlsson, Petter
    Karolinska Institute, Sweden.
    Helgesson, Gert
    Karolinska Institute, Sweden.
    Eriksson, Stefan
    Uppsala University, Sweden.
    Juth, Niklas
    Karolinska Institute, Sweden.
    Ethical deliberations about involuntary treatment: interviews with Swedish psychiatrists2015In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 16, no 37Article in journal (Refereed)
    Abstract [en]

    Background: Involuntary treatment is a key issue in healthcare ethics. In this study, ethical issues relating to involuntary psychiatric treatment are investigated through interviews with Swedish psychiatrists. Methods: In-depth interviews were conducted with eight Swedish psychiatrists, focusing on their experiences of and views on compulsory treatment. In relation to this, issues about patient autonomy were also discussed. The interviews were analysed using a descriptive qualitative approach. Results: The answers focus on two main aspects of compulsory treatment. Firstly, deliberations about when and why it was justifiable to make a decision on involuntary treatment in a specific case. Here the cons and pros of ordering compulsory treatment were discussed, with particular emphasis on the consequences of providing treatment vs. refraining from ordering treatment. Secondly, a number of issues relating to background factors affecting decisions for or against involuntary treatment were also discussed. These included issues about the Swedish Mental Care Act, healthcare organisation and the care environment. Conclusions: Involuntary treatment was generally seen as an unwanted exception to standard care. The respondents judgments about involuntary treatment were typically in line with Swedish law on the subject. However, it was also argued that the law leaves room for individual judgments when making decisions about involuntary treatment. Much of the reasoning focused on the consequences of ordering involuntary treatment, where risk of harm to the therapeutic alliance was weighed against the assumed good consequences of ensuring that patients received needed treatment. Cases concerning suicidal patients and psychotic patients who did not realise their need for care were typically held as paradigmatic examples of justified involuntary care. However, there was an ambivalence regarding the issue of suicide as it was also argued that risk of suicide in itself might not be sufficient for justified involuntary care. It was moreover argued that organisational factors sometimes led to decisions about compulsory treatment that could have been avoided, given a more patient-oriented healthcare organisation.

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  • 11.
    Solberg, Carl Tollef
    et al.
    Univ Oslo, Norway; Akershus Univ Hosp HF, Norway.
    Barra, Mathias
    Akershus Univ Hosp HF, Norway.
    Sandman, Lars
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Hoffmann, Bjorn
    Univ Oslo, Norway; Norwegian Univ Sci & Technol, Norway.
    Severity as a moral qualifier of malady2023In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 24, no 1, article id 25Article in journal (Refereed)
    Abstract [en]

    The overarching aim of this article is to scrutinize how severity can work as a qualifier for the moral impetus of malady. While there is agreement that malady is of negative value, there is disagreement about precisely how this is so. Nevertheless, alleviating disease, injury, and associated suffering is almost universally considered good. Furthermore, the strength of a diseased persons moral claims for our attention and efforts will inevitably vary. This article starts by reflecting on what kind of moral impetus malady incites. We then analyze how severity may qualify this impetus. We do so by discussing the relationship between severity and need, well-being and disvalue, death, urgency, rule of rescue, and distributive justice. We then summarize our thoughts about severity as a moral qualifier. We conclude that severity is, and should continue to be seen, as a morally significant concept that deserves continued attention in the future.

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  • 12.
    Strand, Liam
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Sandman, Lars
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Tinghög, Gustav
    Linköping University, Department of Management and Engineering, Economics. Linköping University, Faculty of Arts and Sciences. Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health.
    Nedlund, Ann-Charlotte
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Withdrawing or withholding treatments in health care rationing: an interview study on ethical views and implications2022In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 23, no 1, article id 63Article in journal (Refereed)
    Abstract [en]

    Background When rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a grandfather clause when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians and patient organization representatives experiences- and perceptions of withdrawing and withholding treatments in rationing situations of relative scarcity. Methods Fourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used. Results Participants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients need for treatment (e.g., the treatments effectiveness and the patients medical condition) withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers. Conclusions We conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatments effect, and to provide guidelines on a national level.

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