Evaluation of clinical ethics support services (CESS) has attracted considerable interest in recent decades. However, few evaluation studies are explicit about normative presuppositions which underlie the goals and the research design of CESS evaluation. In this paper, we provide an account of normative premises of different approaches to CESS evaluation and argue that normativity should be a focus of considerations when designing and conducting evaluation research of CESS. In a first step, we present three different approaches to CESS evaluation from (...) published literature. Next to a brief sketch of the well-established approaches of ‘descriptive evaluation’ and ‘evaluation of outcomes’, we will give a more detailed description of a third approach to evaluation—‘reconstructing quality norms of CESS’—which is explicit about the normative presuppositions of its research (design). In the subsequent section, we will analyse the normative premises of each of the three approaches to CESS evaluation. We will conclude with a brief argument for more sensitivity towards the normativity of CESS and its evaluation research. (shrink)

Background: Ethics support services are growing in Europe to help doctors in dealing with ethical difficulties. Currently, insufficient attention has been focused on the experiences of doctors who have faced ethical difficulties in these countries to provide an evidence base for the development of these services.Methods: A survey instrument was adapted to explore the types of ethical dilemma faced by European doctors, how they ranked the difficulty of these dilemmas, their satisfaction with the resolution of a recent ethically difficult case (...) and the types of help they would consider useful. The questionnaire was translated and given to general internists in Norway, Switzerland, Italy and the UK.Results: Survey respondents ranged in age from 28 to 82 years, and averaged 25 years in practice. Only a minority reported having access to ethics consultation in individual cases. The ethical difficulties most often reported as being encountered were uncertain or impaired decision-making capacity , disagreement among caregivers and limitation of treatment at the end of life . The frequency of most ethical difficulties varied among countries, as did the type of issue considered most difficult. The types of help most often identified as potentially useful were professional reassurance about the decision being correct , someone capable of providing specific advice , help in weighing outcomes and clarification of the issues . Few of the types of help expected to be useful varied among countries.Conclusion: Cultural differences may indeed influence how doctors perceive ethical difficulties. The type of help needed, however, did not vary markedly. The general structure of ethics support services would not have to be radically altered to suit cultural variations among the surveyed countries. (shrink)

Objectives: To summarise the types of case brought to the Clinical Ethics Committee of the National Hospital of Norway from 1996 to 2002 and to describe and discuss to what extent issues of information/communication have been involved in the ethical problems. Design: Systematic review of case reports. Findings: Of the 31 case discussions, (20 prospective, 11 retrospective), 19 cases concerned treatment of children. Twenty cases concerned ethical problems related to withholding/withdrawing of treatment. In 25 cases aspects of information/communication were involved (...) in the ethical problem, either explicitly (n = 3) or implicitly (n = 22). Conclusion: Problems related to information/communication may underlie a classic ethical problem. Identification of these “hidden” problems may be important for the analysis, and hence, the solution to the ethical dilemma. (shrink)

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as clinical ethics committees (...) (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P = 0.001), or who had had ethics courses in medical school (P = 0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensititity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available. (shrink)

In an international survey of rationing we have found that European physicians encounter scarcity-related ethical difficulties, and are dissatified with the resolution of many of these cases. Here we further examine survey results to explore whether ethics support services would be potentially useful in addressing scarcity related ethical dilemmas. Results indicate that while the type of help offered by ethics support services was considered helpful by physicians, they rarely referred difficulties regarding scarcity to ethics consultation. We propose that ethics consultants (...) could assist physicians by making the process less difficult, and by contributing to decisions being more ethically justifiable. Expertise in bringing considerations of justice to bear on real cases could also be useful in recognising an unjust limit, as opposed to a merely frustrating limit. Though these situations are unlikely to be among the most frequently referred to ethics support services, ethics consultants should be prepared to address them. (shrink)

Background: Clinical ethics consultation services have been established in many countries during recent decades. An important task is to discuss concrete clinical cases. However, empirical research observing what is happening during such deliberations is scarce. Objectives: To explore clinical ethics committees’ deliberations and to identify areas for improvement. Design: A pilot study including observations of committees deliberating a paper case, semistructured group interviews, and qualitative analysis of the data. Participants: Nine hospital ethics committees in Norway. Results and interpretations: Key elements (...) of the deliberations included identifying the ethical problems; exploring moral values and principles; clarifying key concepts and relevant legal regulation; exploring medical facts, the patient’s situation, the therapists’ perspective, analogous clinical situations, professional uncertainties, the patient’s and relatives’ perspective, and clinical communication; identifying the involved parties and how to involve them; identifying possible courses of action, and possible conclusion and follow-up. The various elements were closely interwoven. The content and conclusions varied and seemed to be contingent on the committee members’ interpretations, experience and knowledge. Important aspects of a clinical ethics deliberation were sometimes neglected. When the committees used a deliberation procedure and a blackboard, the deliberations tended to become more systematic and transparent. Many of the committees were insecure about how to include the involved parties and how to document the deliberations. Conclusion: Clinical ethics committees may provide an important arena for multidisciplinary discussions of complex clinical ethics challenges. However, this seems to require adequate composition, adoption of transparent deliberation procedures, and targeted training. (shrink)

Background: Medicine is full of value conflicts. Limited resources and legal regulations may place doctors in difficult ethical dilemmas and cause moral distress. Research on moral distress has so far been mainly studied in nurses. Objective: To describe whether Norwegian doctors experience stress related to ethical dilemmas and lack of resources, and to explore whether the doctors feel that they have good strategies for the resolution of ethical dilemmas. Design: Postal survey of a representative sample of 1497 Norwegian doctors in (...) 2004, presenting statements about different ethical dilemmas, values and goals at their workplace. Results: The response rate was 67%. 57% admitted that it is difficult to criticise a colleague for professional misconduct and 51% for ethical misconduct. 51% described sometimes having to act against own conscience as distressing. 66% of the doctors experienced distress related to long waiting lists for treatment and to impaired patient care due to time constraints. 55% reported that time spent on administration and documentation is distressing. Female doctors experienced more stress that their male colleagues. 44% reported that their workplace lacked strategies for dealing with ethical dilemmas. Conclusion: Lack of resources creates moral dilemmas for physicians. Moral distress varies with specialty and gender. Lack of strategies to solve ethical dilemmas and low tolerance for conflict and critique from colleagues may obstruct important and necessary ethical dialogues and lead to suboptimal solutions of difficult ethical problems. (shrink)

Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

Objective To study how doctors care for their patients, both medically and as fellow humans, through observing their conduct in patient–doctor encounters. Design Qualitative study in which 101 videotaped consultations were observed and analysed using a Grounded Theory approach, generating explanatory categories through a hermeneutical analysis of the taped consultations. Setting A 500-bed general teaching hospital in Norway. Participants 71 doctors working in clinical non-psychiatric departments and their patients. Results The doctors were concerned about their patients' health and how their (...) medical knowledge could be of service. This medical focus often over-rode other important aspects of the consultations, especially existential elements. The doctors actively directed the focus away from their patients' existential concerns onto medical facts and rarely addressed the personal aspects of a patient's condition, treating them in a biomechanical manner. At the same time, however, the doctors attended to their patients with courteousness, displaying a polite and friendly attitude and emphasising the relationship between them. Conclusions The study suggests that the main failing of patient–doctor encounters is not a lack of courteous manners, but the moral offence patients experience when existential concerns are ignored. Improving doctors' social and communication skills cannot resolve this moral problem, which appears to be intrinsically bound to modern medical practice. Acknowledging this moral offence would, however, be the first step towards minimising the effects thereof. (shrink)

Three female physicians were interviewed as part of a comprehensive investigation into the narratives of female and male physicians and nurses, concerning their experience of being in ethically difficult care situations in the care of elderly people. The interviewees expressed great concern for the low status of care for elderly people, and the need to fight for the specialty and for the care and rights of their patients. All the interviewees’ narratives concerned problems relating to perspectives of both action ethics (...) and relational ethics. The main focus was on problems concerning the latter perspective, expressed as profound concern and respect for the individual patient. Secondary emphasis was placed on relationships with relatives and other professionals. The most common themes in an action ethics perspective were too little treatment and the lack of health services for older patients, together with overtreatment and death with dignity. These results were discussed in the light of Løgstrup’s ethics, which emphasize that human life means expressing oneself, in the expectation of being met by others. Both Ricoeur’s concept of an ethics of memory and Aristotle’s virtue ethics are presented in the discussion of too little and too much treatment. (shrink)

Background: Theoretically, the principle of justice is strong in healthcare priorities both nationally and internationally. Research, however, has indicated that questions can be raised as to how this principle is dealt with in clinical intensive care. Objective: The objective of this article is to examine how significant others may affect the principle of justice in the medical treatment and nursing care of intensive care patients. Method: Field observations and in-depth interviews with physicians and nurses in intensive care units (ICU). Emphasis (...) was placed on eliciting the underlying rationale for prioritisations in clinical intensive care with particular focus on clinicians’ considerations when limiting ICU treatment. Results: Significant others could induce an unintentional discrimination of ICU patients. Family members who were demanding received more time and attention for both the patient and themselves. Patients’ and families’ status and position and/or an interesting medical diagnosis seemed to govern the clinicians’ priorities of patients and families—consciously as well as unconsciously. The clinicians emphasised that patient information given through families was important. However, patients’ preferences and values conveyed to clinicians through their families were not always taken seriously. This even applied in cases with very serious prognoses and an explicit patient wish to forego life-prolonging treatment. Conclusion: The principle of justice was violated when qualified attention was given to significant others, and through this also to patients. Attention given to significant others was influenced by the healthcare workers’ professional and personal values, attitudes and interests. (shrink)

Background: Informed consent is regarded as a contract between autonomous and equal parties and requires the elements of information disclosure, understanding, voluntariness and consent. The validity of informed consent for critically ill patients has been questioned. Little is known about how these patients experience the process of consent.Objective: The aim of this study was to explore critically ill patients’ experience with the principle of informed consent in a clinical trial and their ability to give valid informed consent.Design: 11 stroke patients (...) who had been informed about thrombolytic treatment and had been through the process of deciding whether or not to participate in a thrombolysis trial went through repeated qualitative semistructured interviews.Results: None of the patients had any clear understanding of the purpose of the trial. Neither did they understand the principles of randomisation and voluntariness. Reasons for giving or not giving consent were trust, conceptions of benefits and risks and altruism. Several patients found it immoral to involve patients in the consent procedure and argued that this was the doctors’ responsibility. Others argued that it is a duty to question patients and perceived it as a sign of being treated with respect and dignity. A majority of the patients found the consent process vague and ambiguous.Conclusions: The results indicate that the principle of informed consent from critically ill patients cannot be seen as a contract between equal and autonomous parties. Further studies are needed to explore critically ill patients’ experiences with the process of informed consent. (shrink)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive design with analysis (...) of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

Background: Thrombolytic drugs to treat an acute ischaemic stroke reduce the risk of death or major disability. The treatment is, however, also associated with an increased risk of potentially fatal intracranial bleeding. This confronts the patient with the dilemma of whether or not to take a risk of a serious side effect in order to increase the likelihood of a favourable outcome. Objective: To explore acute stroke patients’ perception of risk and willingness to accept risks associated with thrombolytic drug treatment. (...) Design: Eleven patients who had been informed about thrombolytic drug treatment and had been through the process of deciding whether or not to participate in a thrombolytic drug trial went through repeated qualitative, semistructured interviews. Results: Many patients showed a limited perception of the risks connected with thrombolytic drug treatment. Some perceived the risk as not relevant to them and were reluctant to accept that treatment could cause harm. Others seemed to be aware that treatment would mean exposure to risk. The patients’ willingness to take a risk also varied substantially. Several statements revealed ambiguity and confusion about being involved in a decision about treatment. The patients’ reasoning about risk was put into the context of their health-related experiences and life histories. Several patients wanted the doctor to be responsible for the decisions. Conclusion: Acute stroke patients’ difficulties in perceiving and processing information about risk may reduce their ability to be involved in clinical decisions where risks are involved. (shrink)