From cure to palliation: concept, decision and acceptance.

The aim of this paper is to present and discuss nurses' and physicians' comments in a questionnaire relating to patients' transition from curative treatment to palliative care. The four-page questionnaire relating to experiences of and attitudes towards communication, decision-making, documentation and responsibility of nurses and physicians and towards the competence of patients was developed and sent to a random sample of 1672 nurses and physicians of 10 specialties. The response rate was 52% (n = 844), and over one-third made comments. The respondents differed in their comments about three areas: the concept of palliative care, experiences of unclear decision-making and difficulties in acceptance of the patient's situation. The responses are analysed in terms of four ethical theories: virtue ethics, deontology, consequentialism and casuistry. Many virtues considered to be appropriate for healthcare personnel to possess were invoked. Compassion, honesty, justice and prudence are especially important. However, principles of medical ethics, such as the deontological principle of respect for self-determination and the consequence of avoidance of harm, are also implied. Casuistry may be particularly helpful in analysing certain areas of difficulty-namely, what is meant by "palliative care", decision-making and accepting the patient's situation. Keeping a patient in a state of uncertainty often causes more suffering than necessary. Communication among the staff and with patients must be explicit. Many of the staff have not had adequate training in communicating with patients who are at the end of their life. Time for joint reflection has to be regained, and training in decision-making is essential. In our opinion, palliative care in Sweden is in need of improvement.

Patients with ischemic heart disease: quality of life predicts long-term mortality.

OBJECTIVE: We have investigated whether perceived quality of life has an impact on long-term survival after a cardiac event. DESIGN: Male (n = 316) and female (n = 97) patients were assessed by means of a self-administered quality of life questionnaire 1 year after either acute myocardial infarction (n = 296), coronary artery bypass grafting surgery (n = 99) or percutaneous coronary intervention (n = 18). Inclusion period was 1989-1991. Ten years after the last patient answered the 1-year questionnaire, mortality (status factor) up to census date was analysed using nine dimensions of quality of life as covariates (Cox regression). RESULTS: At 1-year assessment, subjective general health (RR = 3.15), perceived arrhythmia (RR = 1.72), experience of sex life (RR = 1.55), perceived breathlessness (RR = 1.50) and experience of self-esteem (RR = 1.48) were all significantly related to death within the period up to census date. CONCLUSION: The findings highlight that the patients' own experience of his or her quality of life, has a prognostic importance for long-term mortality after a cardiac event. Clinicians should be aware that a careful monitoring of perceived quality of life is an important part of good patient care.

Surveys on attitudes towards legalisation of euthanasia: importance of question phrasing.

AIM: To explore whether the phrasing of the questions and the response alternatives would influence the answers to questions about legalisation of euthanasia. METHODS: Results were compared from two different surveys in populations with similar characteristics. The alternatives "positive", "negative", and "don't know" (first questionnaire) were replaced with an explanatory text, "no legal sanction", four types of legal sanctions, and no possibility to answer "don't know" (second questionnaire). Four undergraduate student groups (engineering, law, medicine, and nursing) answered. RESULTS: In the first questionnaire (n = 684) 43% accepted euthanasia (range 28-50%), 14% (8-33%) did not, and 43% (39-59%) answered "don't know". Two per cent of the respondents declined to answer. In comparison with previous surveys on attitudes to euthanasia the proportion of "don't know" was large. The results of the second questionnaire (n = 639), showed that 38% favoured "no legal prosecution" (26-50%). However, 62% (50-74%) opted for different kinds of legal sanctions, and two of four groups expressed significantly different views in the two surveys. A proportion of 10% declined to answer the second questionnaire. CONCLUSION: An introduction of an explanatory text and a wider range of response alternatives produced differences between the results of the two surveys conducted.

Conditions and consequences of medical futility--from a literature review to a clinical model.

OBJECTIVES: To present an analysis of "futility" that is useful in the clinical setting. DESIGN: Literature review. MATERIAL AND METHODS: According to Medline more than 750 articles have been published about medical futility. Three criteria (language, time period, and the authors expressed their own opinions) singled out 43 of them. The authors' opinions about futility were analysed using the scheme: "If certain conditions are satisfied, then a particular measure is futile" and "If a particular measure is futile, then certain moral consequences are implied". RESULTS: Regarding conditions, most authors stated that judgments about futility should be made by physicians. The measure was usually some kind of medical treatment, and the goals related to quality of life, physiological improvement, or prolongation of life. The probability of success in reaching the goal was in most cases described in semiquantitative terms. Regarding consequences, the authors stated that health care professionals may (sometimes ought or should) withhold or withdraw a futile measure, most often after a dialogue with the patient (29 articles), but sometimes without informing the patient (nine articles), or with one-way information (four articles). Over time more and more articles recommend that the patient should be involved in joint decision making. Based on this literature review a clinical model was developed. CONCLUSIONS: The model, requiring that conditions and consequences should be made explicit, may, in "futility situations", facilitate both the collection of the necessary information and make the moral implications visible. It also makes communication about measures considered to be futile possible without using such ambiguous terms as "futile".

Teaching medical ethics to experienced staff: participants, teachers and method.

Almost all articles on education in medical ethics present proposals for or describe experiences of teaching students in different health professions. Since experienced staff also need such education, the purpose of this paper is to exemplify and discuss educational approaches that may be used after graduation. As an example we describe the experiences with a five-day European residential course on ethics for neonatal intensive care personnel. In this multidisciplinary course, using a case-based approach, the aim was to enhance the participants' understanding of ethical principles and their relevance to clinical and research activities. Our conclusion is that working with realistic cases encourages practising nurses and physicians to apply their previous knowledge and new concepts learnt in the course, thus helping them to bridge the gap between theory and practice.

Do-not-resuscitate orders - experiences and attitudes of relatives.

Background: The aim of this study was to explore the experiences of relatives of seriously ill patients with do-not-resuscitate (DNR) orders. Methods: The relatives of 21 patients who died with a DNR order were invited 3-6 months later to talk about their experiences before, at the time of, and after the death of the patient. Results: Although many of the relatives complained about the patients being moved around a lot in the hospital, most were satisfied with the medical therapy, the care, and the communication with the physicians and nurses. Almost all of them seemed to be well informed about the bad prognosis of the patient, and many mentioned that life support was no option. However, only one relative spontaneously mentioned that DNR was ordered. Conclusions: It is important to include patients' relatives in DNR decisions after careful planning and timing of the conversation. It is also best to avoid moving patients around too much in order to provide continuity for patients, relatives, physicians, and nurses.

[An inquiry among medical students. No to legalization of euthanasia, but yes to dropped charges or remission of sentence]. / Enkät bland läkarstuderande. Nej till legalisering av dödshjälp, men ja till åtals- eller straffeftergift.

In a questionnaire to medical students in Sweden, only 6 out of 135 answered that they wanted voluntary active euthanasia to be legalized. However, most of the students were of the opinion that the charges brought against the physician could be withdrawn pending assessment by a public prosecutor (55), or alternatively, that remission of sentence could be granted pending assessment by a court (45). A somewhat smaller group (26) answered that prison corresponding to the sentence for manslaughter was reasonable. Only 3 students considered voluntary active euthanasia to be murder. Legal monitoring of each case of active euthanasia was very important to these medical students, but many answered that under specific conditions there should be no punishment.

From fact to recommendation: explicit value premises make the conclusion more convincing.

In this article we describe one way to use value premises, i.e. conceptions of what is right or wrong, good or bad, just or unjust. They may, in combination with the results from surveys on attitudes, be used to defend normative conclusions, for example changes in professional guidelines. Several ethical principles may be relevant when discussing an end-of-life decision. We use the preferences of those involved in or affected by that decision (the principle of autonomy) and the obligation to maximize benefits and minimize harm (the principle of beneficence) as value premises. To illustrate the ethical, empirical and logical issues relevant to assess normative conclusions, we present a Swedish survey of the attitudes of health care workers and the general public. In this survey, the physicians stated that they do not want the family to be the sole decision-maker, whilst the public did not want the physician to be the sole decision-maker. As a third option we propose joint decision-making regarding end-of-life decisions. This normative conclusion may be rationally discussed, not only by questioning scientific aspects of the survey, but also by critically assessing value premises (autonomy and beneficence) and the logic of the argument.

Priority setting, justice, and health care: conceptual analysis.

In this paper, priority setting in health care is defined as distributional decisions at the individual level involving clear and direct limitation of access to beneficial health care according to some categorical criterion other than the market. The justification of a particular rule of priority setting depends on conceptual issues as well as on the choice of value premises. Especially important is the type of scarcity involved (whether the imbalance between supply and need can be overcome or not) and the concept of justice used or presupposed (for instance, whether the conception of justice emphasizes efficiency or fairness or both). The proposal put forward is that the task of medical ethics is to provide conceptual clarification and value premises relevant to justify rules of priority setting. The actual choice of such rules belongs primarily to the domain of politics.

[Conflicting values in evaluation of psychiatric care--a review]. / Värdekonflikter vid utvärdering av psykiatrisk vård--en översikt.

Greater understanding is needed regarding psychiatric disorders and their causes, as well as the effects of psychiatric care. Ethical issues ought to be discussed in terms of both the choice of questions and to the ways in which data are collected. So far, most evaluations of psychiatric care have focused on medical utility, while issues of autonomy and impartiality are sorely lacking. An important challenge for the future is therefore to support the evolution of the search for knowledge into a multidisciplinary activity in which values concerning autonomy and impartiality are also incorporated.

Surveys on attitudes to active euthanasia and the difficulty of drawing normative conclusions.

PURPOSE: To present surveys on active euthanasia and to discuss what normative conclusions can be drawn. METHODS: Two summary articles and 30 recent surveys on attitudes to active euthanasia are discussed. RESULTS: According to the first summary article, acceptance of active euthanasia among the public has stabilized around 65%; according to the second, almost 60% of physicians are in favour of legalizing active euthanasia. As for the 30 recent surveys, physicians are most often respondents. while the general public is surveyed in only three. The differences in attitudes are striking: 21-78% answered that active euthanasia should be legalized, and 14-51% rejected this idea. The core of the general problem of drawing normative conclusions from empirical data is first addressed; then we discuss the principles of autonomy and beneficence, which are often referred to in arguments for and against euthanasia.

Palliative care, assisted suicide and euthanasia: nationwide questionnaire to Swedish physicians.

The objective of this study was to investigate what actually happens between physicians and adult patients in difficult end-of-life situations. We circulated an anonymous questionnaire to a randomized sample of 952 Swedish physicians registered in specialties comprising care of dying adult patients, 122 palliative care physicians, and 130 physicians from the Swedish Association for the Study of Pain. Of special interest were themes in conversations between the physicians and the patients, desires expressed by the patients, and actions performed by the physicians that might affect the patients' expected survival. The overall response rate was 79%. Of these, 63% of the randomized physicians, 95% of the palliative care physicians, and 43% of the Association for the Study of Pain physicians had more than occasionally treated dying adult patients during the past year. About half of them had discussed palliative care with all their dying patients, and more than half of the physicians had heard their patients expressing a wish to die. About one-third of all the physicians had given analgesic or other drugs in such doses that some of their patients' deaths were hastened. The same proportion had also been asked for active euthanasia, while 10% had been asked to assist suicide. No case of euthanasia and only a few cases of assisted suicide were reported. By implication, the study suggests that improving patients' awareness of the possibilities to relieve pain, anxiety and dyspnoea during the final days of life is an important way to reduce requests for active euthanasia.

Values and technology assessment in psychiatry.

Economic resources for health care are limited and they should be distributed as fairly and effectively as possible. But the basis for such a distribution is far from clear. What interests are involved? What kind of provision of care is most efficient? How far should the distribution be left to market solutions? What is the proper role of health care politicians and authorities? In technology assessment a promising combination of value premises and empirical knowledge is used in answering such questions. The aim of this introductory article is to explore issues related to values and value conflicts that have implications for technology assessment. Ethical principles are discussed and related to problematic issues in mental health care such as the absence of psychiatry, the abuse of psychiatry, the definition of mental illness, diagnostic activities, treatment decisions, priority setting as well as research and development.

The right to accept and the right to refuse.

The main purpose of this paper is to show that the civil commitment acts of the Nordic countries are in conflict with the ideal of symmetry, i.e. the idea that if a person has the competence (and therefore the right) to accept hospitalisation he or she should also be considered competent (and therefore have the right) to refuse hospitalisation. First, we distinguish between one narrow and one wide concept of coercion in relation to hospital admission; second, we demonstrate that the narrow concept of coercion is used or presupposed with reference to hospitalisation in the Nordic countries; and third, we discuss, from a normative point of view, the rather disturbing asymmetrical conception of patient's competence and rights implied by this narrow concept of coercion. Though the ideal of symmetry supports the use of the wide concept of coercion in civil commitment acts, it does not decide the issue. To justify a change from a narrow to a wide concept would also require empirical data about the practical implications.

Psychiatric ethics and health services research. Concepts and research strategies.

In a conceptual frame of reference a distinction is made between different aspects of coercion (formal, perceived and evaluated) and different levels of coercion (hospitalization, treatment and other measures). This frame of reference is used to analyse empirical data from interviews of representative samples of 100 formally committed, the 'probands', and 99 voluntarily admitted sex- and age-matched 'controls'. The results demonstrate that there are many different aspects of coercion; thus, discussions about psychiatric coercion should not be restricted to formally registered commitment. The data also indicate the need to survey the different perceptions of the persons involved in the process of care, in order to understand whether and how coercion has been applied. The results also exemplify the need to include, in all assessments of health care, questions of respect for patient autonomy and integrity.

Patients' autonomy and medical benefit: ethical reasoning among GPs.

BACKGROUND: During the last decades, the traditional role of GPs as decision-makers for their patients has been questioned. OBJECTIVES: The aim of this study was to identify and discuss how GPs deal with and how they reason in situations where there is a possible tension between the obligation to respect the patients' right to self-determination and the obligation to promote their health. METHODS: One hundred and twenty randomly selected Swedish GPs received a mailed questionnaire with two vignettes, one describing a patient reluctant to have a medically motivated intervention, the other describing a patient requesting a medically doubtful intervention. Forty seven of these GPs subsequently were interviewed by telephone. RESULTS: With regard to the first vignette, approximately two-thirds of respondents to the questionnaire (n = 82) answered that they would not accept the patient's reluctance. Older GPs were somewhat more inclined to try to persuade the patient to come to their surgery than were younger colleagues. In the interview, most respondents answered that the right to self-determination ought to be given priority, but the obligation to promote health had a greater influence on their behaviour. Regarding the second vignette, two-thirds of respondents to the questionnaire answered that they would not give way to the patient's request for intervention. Younger GPs said "No" more often than did their older colleagues. In the interviews, justifications for their response referred to medical benefit, uneasy patients, self-protection and justice. CONCLUSION: When facing such conflicts in everyday practice, the ethical codes of medicine are often too categorical to give any guidance. The situational ideal of covenant would be more helpful, and ought to be emphasized by medical teachers as well as tutoring older colleagues.