This paper addresses the problem of ‘premature consent’. The term ‘premature consent’ denotes patient decisions that are: formulated prior to discussion with the appropriate healthcare professional ; based on information from unreliable sources ; and resolutely maintained despite the HCP having provided alternative reliable information. HCPs are not obliged to respect premature consent patients’ demands for unindicated treatments. But why? What is it that premature consent patients do or get wrong? Davis has argued that premature consent patients are incompetent and (...) misinformed. We argue that this view is not sustainable. A more plausible position asserts that premature consent threatens the integrity of the medical profession. We argue that this gives rise to a negative patient duty which premature consent patients fail to honour. We argue for a further positive duty of good faith engagement in shared decision-making. This implies willingness to potentially revise or justify one’s evaluative bases. Fundamentally, the problem with premature consent patients is that certain of their evaluative bases are not open to revision. They therefore fail in their duty to participate faithfully in the shared decision-making process. (shrink)

Background:Adolescents’ health choices have been widely researched, but the ethical basis of these choices, namely their rights, duties, and responsibilities, have been disregarded and scale is required to measure these.Objective:To describe the development of a scale that measures adolescents’ rights, duties, and responsibilities in relation to health choices and document the preliminary scale testing.Research design:A multi-phase development method was used to construct the Health Rights Duties and Responsibilities ( HealthRDR) scale. The concepts and content were defined through document analysis, a (...) systematic literature review, and focus groups. The content validity and clarity of the items were evaluated by expert panel of 23 adolescents, school nurses, and researchers. We calculated the content validity index and the content validity ratio at on item and scale levels. Preliminary testing was conducted with 200 adolescents aged 15–16 years. Descriptive statistics, Cronbach’s alpha correlation, and statistics for the item-analysis were calculated.Ethical considerations:Ethical approval and permission were obtained according to national legislation and responsible research practice was followed. Informed consent was obtained from the participants and the parents were informed about the study.Findings:The Health Rights Duties and Responsibilities scale comprises of four sub-scales with 148 items: 15 on health choices, 36 on rights, 47 on duties, and 50 on responsibilities. The items had a 0.93 content validity index and a 0.85 content validity ratio. Cronbach’s alpha correlation coefficient was 0.99 for the total scale and the individual sub-scales scores were health choices (0.93), rights (0.97), responsibilities (0.99), and duties (0.98).Discussion:The findings are discussed in light of the ethical concepts and validity and reliability of the developed scale.Conclusion:The Health Rights Duties and Responsibilities scale defines and understands adolescents’ rights, duties, and responsibilities in relation to health choices and has good content validity. Further testing and refinement of the concepts are needed. (shrink)

Is abortion a question of personal morality? Liberals and feminists often embrace this idea, but so also do those who are personally opposed to abortion. Someone may claim to believe personally that abortion is wrong without holding the corresponding public belief. I am interested in what exactly one means when one says that abortion is a question of personal morality. In Sec. II, I consider three influential interpretations of the claim that abortion is a question of personal morality. After showing (...) that each of these interpretations is inadequate, I develop a fourth that avoids some of the problems with the first three (in Sec. III). But even on this interpretation, the claim that abortion is a question of personal morality is difficult to defend. This is because we cannot show that abortion is a question of personal morality without first knowing something about the moral status of the fetus. I conclude the paper with some pessimistic remarks concerning our ability to arrive at a compromise position on abortion. (shrink)

Patient’s duties are a topical but little researched area in nursing ethics. However, patient’s duties are closely connected to nursing practice in terms of autonomy, the best purpose of care and rethinking from the patient’s perspective. This article is a metasynthesis (N = 11 original articles) of patient’s duties, aimed to create a tentative model. In this article, a tentative model called ‘right-based duties of a patient’ was constructed. With its aid, a coherent structure of patient’s duties within different roles (...) and objects of a patient can be defined. In addition, the ethical basis, prerequisites, outcomes and risks of patient’s duties can be named. In conclusion, so-called right-based duties of a patient constitute the basic argument. Patient’s duties are not unambiguous for all patients, and the global perspective to duties has been challenged. However, due to both conceptual and practical reasons, rethinking of patient’s duties is needed. (shrink)

Since the 1970s, estrogen have sometimes been used in adolescent girls to reduce very tall adult expected height. Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How should one deal with informed consent for such a study? We designed a qualitative study with semi-structured telephone interviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women. Major themes were a wish to be involved and a positive (...) attitude to the proposed register research. The women did not express worry after reading the study protocol, but did convey considerable frustration that this research had not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participation rate and a concern over missing data. The selection of information and consent or the decision to go ahead without consent in register follow-up is a delicate balancing act. Study participants wish to be contacted, but acknowledge the primary goal of answering important questions. Our study provides support for safeguarding privacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientific value by requesting for informed consent. (shrink)

Since the 1970s, estrogen have sometimes been used in adolescent girls to reduce very tall adult expected height. Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How should one deal with informed consent for such a study? We designed a qualitative study with semi-structured telephone interviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women. Major themes were a wish to be involved and a positive (...) attitude to the proposed register research. The women did not express worry after reading the study protocol, but did convey considerable frustration that this research had not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participation rate and a concern over missing data. The selection of information and consent or the decision to go ahead without consent in register follow-up is a delicate balancing act. Study participants wish to be contacted, but acknowledge the primary goal of answering important questions. Our study provides support for safeguarding privacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientific value by requesting for informed consent. (shrink)

(2013). Disrespectful Care in the Treatment of Sickle Cell Disease Requires More Than Ethics Consultation. The American Journal of Bioethics: Vol. 13, No. 4, pp. 12-14. doi: 10.1080/15265161.2013.768857.

BackgroundPatients not attending their appointments without giving notice burden healthcare services. To reduce non-attendance rates, patient non-attendance fees have been introduced in various settings. Although some argue in narrow economic terms that behavioural change as a result of financial incentives is a voluntary transaction, charging patients for non-attendance remains controversial. This paper aims to investigate the controversies of implementing patient non-attendance fees.ObjectiveThe aim was to map out the arguments in the Norwegian public debate concerning the introduction and use of patient (...) non-attendance fees at public outpatient clinics.MethodsPublic consultation documents (2009–2021) were thematically analysed (n=84). We used a preconceived conceptual framework based on the works of Grant to guide the analysis.ResultsA broad range of arguments for and against patient non-attendance fees were identified, here referring to the acceptability of the fees’ purpose, the voluntariness of the responses, the effects on the individual character and institutional norms and the perceived fairness and comparative effectiveness of patient non-attendance fees. Whereas the aim of motivating patients to keep their appointments to avoid poor utilisation of resources and increased waiting times was widely supported, principled and practical arguments against patient non-attendance fees were raised.ConclusionA narrow economic understanding of incentives cannot capture the breadth of arguments for and against patient non-attendance fees. Policy makers may draw on this insight when implementing similar incentive schemes. The study may also contribute to the general debate on ethics and incentives. (shrink)

(2013). De-Escalating Conflict: Mediation and the “Difficult” Patient. The American Journal of Bioethics: Vol. 13, No. 4, pp. 11-12. doi: 10.1080/15265161.2013.768855.

Biomedical research has brought to the fore the issue of which rights and duties we have to each other and society. Several scholars have advocated reframing the notion of participation, arguing that we have a moral duty to participate in research from which we all benefit. However, less attention has been paid to how we justify and defend the concept of self-determination and what the implications are in a biomedical setting. The author discusses the value and importance of self-determination on (...) the basis of the framework of the liberal-communitarian debate. Biobank research is used as an example of a project wherein, through our participation, we confirm our sense of belonging to society and acknowledge our mutual dependence on each other. We need a richer concept of self-determination that encompasses both liberal and communitarian insights in order to make sense of the value we attach to self-determination. (shrink)

Lithuania was one of the first states in Europe to approve a comprehensive list of patients’ duties under a special Law on the Rights of Patients of 2010. The approval of the catalogue of patients’ duties at the level of a law is based on the restatement of the principle of equal rights of the parties participating in health care relations, and the prevention of consumerism in these relations. The paper distinguishes between general and special patients’ duties. The general duties (...) include the duty to exercise the patient’s rights in good faith, the ban to abuse them, the duties of cooperation and looking after one’s health, as well as the duty of treatment with due respect. The norms that entrench duties of ethical nature should serve to prevent any inappropriate behaviour of patients in health care institutions. Nevertheless, legal application of these provisions and proving the infringements in practice is likely to be complicated. The special duties include: the duty to familiarise oneself against signature with the internal regulations of the health care institution as presented to him or her, other documents prescribed by the health care institution; the duty to present the documents confirming identity; the duty upon receiving information about the health care services prescribed for him or her to confirm in writing his or her consent or refusal with regard to the provision of such health care services in the cases specified by the law; the duty to provide health care professionals with any information about one’s health, to follow the prescriptions and recommendations of health care professionals, to inform health care professionals about any deviations from the prescriptions or the prescribed treatment regime which he or she has accepted. The legal analysis of the contents of the duties has revealed certain unsubstantial obscurities. The analysis of the provision that enables to take sanctions against the patient infringing their duties has revealed that the health care institution may only terminate provision of health care services to the patient if one of the two alternative conditions is fulfilled. I.e. if a person violates his or her duties and thereby causes danger to their own and other patients’ health and life, or prevents them from receiving high quality health care services. The conclusions show that application of this provision may be problematic: first, due to the juridical technique of the wording of the norm; second – due to complicated substantiating that the patient prevented or prevents other patients from receiving high quality health care services; third – due to the conflict of this provision with the provision of the Law of the Republic of Lithuania on Medical Practice, which provides that a doctor may refuse provision of health care services in cases of real threat to his or her own life; and fourth – the norm does not provide for the right to terminate the provision of services in cases of threat to health and/or life of health care workers (non-specialists). (shrink)