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  • 51. Wallsten, Tuula
    et al.
    Kjellin, Lars
    Sjöberg, Rickard L
    [The respectful compulsion. Evidence and ethics in compulsory psychiatric care].2009Ingår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 106, nr 11Artikel i tidskrift (Refereegranskat)
  • 52. Weber, Christian
    et al.
    Fijalkowska, Barbara
    Ciecwierska, Katarzyna
    Lindblad, Anna
    Badura-Lotter, Gisela
    Andersen, Peter M.
    Umeå universitet, Medicinska fakulteten, Institutionen för farmakologi och klinisk neurovetenskap, Klinisk neurovetenskap.
    Kuzma-Kozakiewicz, Magdalena
    Ludolph, Albert C.
    Lule, Dorothee
    Pasierski, Tomasz
    Lynoee, Niels
    Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?2017Ingår i: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 16, artikel-id 80Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Healthcare legislation in European countries is similar in many respects. Most importantly, the framework of informed consent determines that physicians have the duty to provide detailed information about available therapeutic options and that patients have the right to refuse measures that contradict their personal values. However, when it comes to end-of-life decision-making a number of differences exist in the more specific regulations of individual countries. These differences and how they might nevertheless impact patient’s choices will be addressed in the current debate.

    Main text: In this article we show how the legal and medical frameworks of Germany, Poland and Sweden differ with regard to end-of-life decisions for patients with a fatal progressive disease. Taking Amyotrophic Lateral Sclerosis (ALS) as an example, we systematically compare clinical guidelines and healthcare law, pointing out the country-specific differences most relevant for existential decision-making. A fictional case report discusses the implications of these differences for a patient with ALS living in either of the three countries. Patients with ALS in Germany, Poland and Sweden are confronted with a similar spectrum of treatment options. However, the analysis of the normative frameworks shows that the conditions for making existential decisions differ considerably in Germany, Poland and Sweden. Specifically, these differences concern (1) the legal status of advance directives, (2) the conditions under which life-sustaining therapies are started or withheld, and (3) the legal regulations on assisted dying.

    Conclusion: According to the presented data, regulations of terminating life-sustaining treatments and the framework of “informed consent” are quite differently understood and implemented in the legal setting of the three countries. It is possible, and even likely, that these differences in the legal and medical frameworks have a considerable influence on existential decisions of patients with ALS.

  • 53.
    Wendel, Lotta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Juridiska institutionen.
    Third parties' interests in population genetic databases: some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK2007Ingår i: The Ethics and Governance of Human Genetic Databases: European Perspectives / [ed] Matti Häyry, Ruth Chadwick, Vilhjálmur Árnason & Gardar Árnason, Cambridge: Cambridge University Press, 2007, nr 4, s. 108-119Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 54.
    Ågård, Anders
    et al.
    Sahlgrenska universitetssjukhuset, Göteborg.
    Engström, Ingemar
    Universitetssjukvårdens forskningscent­rum, Örebro.
    Sandén, Ulrika
    Umeå universitet, Samhällsvetenskapliga fakulteten, Juridiska institutionen.
    Erling, Valdemar
    Kungälvs sjukhus.
    Framtidens rond – ett personcentrerat och teambaserat möte med patienten: den traditionella ronden går inte att försvara etiskt eller juridiskt2017Ingår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 114, nr 42Artikel i tidskrift (Refereegranskat)
  • 55.
    Åström, Gunilla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    The meaning of caring as narrated, lived, moral experience1995Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    The purpose of this research was to understand the meaning of caring as narrated, lived, moral experience. Forty-five good nurses experienced in the care of patients in surgical, medical and geriatric wards were interviewed. They described their experience of; caring, caring abilities, the worthwhile of caring, the strength related to caring and narrated situations (n=88) in which they had experienced that their caring had made a difference to the patient. Surgical nurses described care and cure as an integrated whole, medical nurses described care as integrated with the patients' social context and geriatric nurses described care as enhancing the autonomy of patients (I). The nurses' narrated, lived, experiences of caring situations revealed ways of intervening and interacting with the patient including caring actions (II).

    Eighteen good nurses experienced in the care of cancer patients were also interviewed. Their narrated, lived experiences of morally difficult care situations i.e. situations where it had been hard to know what was the right and good thing to do for the patient (n=60), revealed that relationships with their co-workers were very important for their possibility to act according to their moral reasoning and feelings(III). The situations for the nurses were either disclosed as overwhelming or possible to grasp. When narrating about these situations the nurses used different terms about themselves and their co-workers (One, They, I and We). The nurses viewed the patients either as a task to be accomplished or as a valuable unique person. In the latter situations ethical demands were interpreted, judged and acted upon (IV). Interpretations of these nurses' skills in managing morally difficult care situations disclosed two levels; one group of nurses who described positive paradigm cases, liberating maxims and disclosed open minds, while the other group described negative paradigm cases, restrictive maxims and revealed closed minds. The latter nurses were mostly the nurses who disclosed in Paper III that they used the term "one" about themselves and "they" about their co-workers (V).en patients recently cared for at surgical and medical wards were interviewed(IV). They narrated lived experiences of receiving/not receiving the help they needed or wanted when suffering from pain and anxiety/fear. The patients revealed that the most important thing for them to feel cared for in these situations was to be listened to, taken seriously and trusted, if they were not treated in this way the patients revealed that they felt they were in the hands of somebody who was uncaring.

    The findings are interpreted within the framework of Paul Tillich's philosophy concerning love, power, justice and courage, thereby showing the tension between these phenomena in the narrated, lived, moral experience. Light is also thrown on the dynamics of openness, vulnerability, fallibility, forgiveness, affirmation as well as powerlessness, meaninglessness, insufficiency, dissociation and exclusion. Reflections are made concerning practical wisdom.

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