Moving from autonomy to responsibility in HIV-related healthcare.
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Confidentiality↗
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Attitudes of registered nurses toward euthanasia.
We sought to identify variables that contribute to euthanasia attitude and behavior, including demographics, death fears, experience with death, attitudes toward patient autonomy, and level of moral development. Subjects were 137 registered nurses from the southeastern United States representing 13 clinical nursing areas. Principal components analysis identified four factors that together explained 62.9% of total variance. These factors were belief in afterlife, nursing experience, liberal or conservative political view, and personal values. Variables identified through factor analysis were entered into regression analyses. These analyses showed that increased religious belief, years of nursing experience, and propensity to view death as an end of existence predicted opposition to euthanasia. Predictors for euthanasia support included a liberal political view, more experience with dying patients, and the belief that patients should have a personal responsibility for their own health-care decisions.
Black or African American↗
Self in context: autonomy and relatedness in Japanese and U.S. mother-preschooler dyads.
Cultural differences and similarities in socialization during two contrasting laboratory tasks were examined in 30 Japanese mothers and their preschoolers, both temporarily residing in the United States, and 30 U.S. mothers and their preschoolers (age: M = 55.8 months, SD = 4.9). Mother and child actions, speech, emotion, and attention were coded from videotaped observations during a free play task and waiting task. Cross-cultural comparisons showed that U.S. mothers had more conversations that emphasized individual experiences, more often acted as playmates and used joint attention, maintained more physical distance, showed more positive emotions, and made more positive responses to child accomplishment. In contrast, Japanese mothers had more conversations that emphasized shared experiences, showed more divided attention, and maintained social role distinctions. Similar, but fewer cultural differences emerged for children. However, maternal and child characteristics also varied by task context. The results suggested an emphasis on autonomy in U.S. dyads and an emphasis on relatedness in Japanese dyads, but the interactions with task context revealed the coexistence of autonomy and relatedness.
Adult↗
Comments on an obstructed death -- a case conference revisited: commentary 1.
The paper comments on Scott Dunbar's "An obstructed death and medical ethics," arguing contra Dunbar that we should not view truth-telling to the terminally ill as primarily governed by principles of veracity and respect for autonomy. All such rules are of limited value in medical ethics. We should instead turn to an ethics deriving from the centrality of moral relationships and virtues. A brief analysis of the connections between moral relationships and moral rules is offered. Such an ethics would lower the value that philosophical fashion places on truth-telling and autonomy and leave decisions about truth-telling and the terminally ill more dependent on the circumstances of particular cases.
Altruism↗
Comparison of patients' and health care professionals' attitudes towards advance directives.
OBJECTIVES: This study was designed to identify and compare the attitudes of patients and health care professionals towards advance directives. Advance directives promote recognition of the patient's autonomy, letting the individual exercise a certain measure of control over life-sustaining care and treatment in the eventuality of becoming incompetent. DESIGN: Attitudes to advance directives were evaluated using a 44-item self-reported questionnaire. It yields an overall score as well as five factor scores: autonomy, beneficence, justice, external norms, and the affective dimension. SETTING: Health care institutions in the province of Québec, Canada. SURVEY SAMPLE: The sampling consisted of 921 subjects: 123 patients, 167 physicians, 340 nurses and 291 administrators of health care institutions. RESULTS: Although the general attitude of each population was favourable to the expression of autonomy, multivariate analysis of variance (MANOVA) indicated that physicians attached less importance to this subscale than did other populations (p < .001). Above all, they favoured legal external norms and beneficence. Physicians and administrators also attached less importance to the affective dimension than did patients and nurses. Specifically, physicians' attitudes towards advance directives were shown to be less positive than patients' attitudes. CONCLUSION: More attention should be given to the importance of adequately informing patients about advance directives because they may not represent an adequate means for patients to assert their autonomy.
Adult↗
The principle of respect for autonomy in the care of nursing home residents.
Respect for autonomy is well known as a core element of normative views on good care. Most often it is interpreted in a liberal way, with a focus on independence and self-determination. In this article we argue that this interpretation is too narrow in the context of care in nursing homes. With the aim of developing an alternative view on respect for autonomy in this setting we described four interpretations and investigated the moral intuitions (i.e. moral judgements) of caregivers regarding these approaches. We found that these caregivers seemed to value different notions relating to respect for autonomy under different circumstances. There was no significant difference in moral judgements between men and women or between doctors and nurses. We conclude that a multidimensional understanding of this principle would best fit this context. We end this article with a description of a modest theory of respect for autonomy in nursing homes.
Adult↗
Beneficent voluntary active euthanasia: a challenge to professionals caring for terminally ill patients.
Euthanasia has once again become headline news in the UK, with the announcement by Dr Michael Irwin, a former medical director of the United Nations, that he has helped at least 50 people to die, including two between February and July 1997. He has been quoted as saying that his 'conscience is clear' and that the time has come to confront the issue of euthanasia. For the purposes of this article, the term 'beneficient voluntary active euthanasia' (BVAE) will be used: beneficient from the prima facie principle of beneficience, to do good, and voluntary to indicate that this must be carried out at the request of a competent client. This implies adherence to another prima facie principle, that of respect for autonomy. Active implies that something is done or given with the intention of hastening death. The word euthanasia itself simply means 'good death'. This article examines the moral positions of two nurses and one junior doctor towards the subject of BVAE and an attempt is made to represent the main conflicting moral positions. The central arguments against BVAE and counterarguments are presented. The conclusion reached is that consenting adults should not be prevented from availing themselves of BVAE if another consenting adult (a medical doctor) is available and capable of carrying out their wishes. This being the case, it is suggested that BVAE should be available as an option in hospices and in the community. The aims of this article are: to generate debate among professionals; to present a three-way discussion that might be useful as a focus for educational purposes, particularly at undergraduate level; to challenge professionals to confront the issue of euthanasia; and to plead the case of those who request assistance in exercising autonomy by gaining control over their own deaths.
Adult↗
Ethics -- perceived or reasoned from principles?: a rejoinder to Korn, Huelsman, and Reed.
In response to Korn, Huelsman, and Reed's (1992) question, "Who defines those interests, and how serious must the setback be?" (p. 126), we argue that a wrongful (unjust) harm (a setback of interest) is not equivalent to a hurt (a temporary distressing mental state) and that the interests of importance are welfare interests (general means to our ulterior aims), not just a desire to avoid unpleasant mental states (hurts). To set back a welfare interest is to reverse its course or to impede, thwart, defeat, or doom it. It is the primary responsibility of the investigator to define both welfare interests and the risk of harm. An informed consent -- one with substantial understanding, in substantial absence of control by others, and given intentionally -- allows participants to autonomously authorize participation in research, including their toleration of acts of mental discomfort or distress during an experiment. Not only were our participants not wrongfully harmed, they benefited and were willing to volunteer for future research. No strong evidence has been advanced or linked to guided imagery in a way that would justify its restraint; to so claim evokes a standard of legal paternalism that fails to respect participants' competence and autonomy to choose to participate in research on rape using guided imagery.
Aggression↗
Ethical principles influencing parents of well children.
The purpose of this descriptive study was to survey the parents of well children to determine the ethical principles that influenced the decisions they made in regard to hypothetical choice of treatment options. Sixty-one parents responded to a mailed survey designed to measure the principles of autonomy, beneficence/nonmaleficence, and justice. The high total mean scores for the principles of autonomy and beneficence/nonmaleficence indicated that all three ethical principles were influential in the decision-making process of parents of well children. A student t-test revealed that the mean score for the principle of autonomy was significantly higher than the mean score for the principles of beneficence/nonmaleficence. Open-ended questions regarding the principle of justice revealed many frustrations of the sample population regarding the health care system. The study identified the need for nurses and other health care providers to be aware of the influence these ethical principles have on decision making and the importance of autonomy to the parents of well children.
Adult↗
Older adults and autonomy in acute care: increasing patients' independence and control during hospitalization.
In a grounded theory study of the experience and actions of hospitalized older adults, autonomy emerged as a major focus, particularly during the last phase of hospitalization. Autonomy, defined in the derived theory as older adults' freedom and ability to act on their own behalf, has two components: independence (the physical ability to act) and control (the ability to make decisions on one's own behalf). Being in the hospital threatens the autonomy of older adults. This article describes changes in the autonomy of older adults throughout hospitalization and makes recommendations for improving their autonomy through acute care hospital system redesign.
Aged↗
Should rationing of health care be explicit?
The aim of this paper is to discuss whether medical professionals should inform patients that there may be drugs or procedures that would benefit them., but which the National Health Service cannot afford to provide. The main body of the paper examines the argument put forward by Professor David Hunter who suggests that rationing of health care should be implicit. I will argue that his arguments are unconvincing. Some of the reasons that Coast and Mechanic give support to implicit rationing of health care are looked at briefly and similarly found to be wanting. In our present culture openness is encouraged from doctors. It is also acknowledged by the medical profession that patients' autonomy should be respected. The importance of autonomy is emphasised in the teaching of our medical students. My submission will be that it is difficult to see how patients' autonomy can properly be exercised unless they are told that treatment is being refused to them that might help their condition.
Decision Making↗
Patient autonomy versus religious freedom: should state legislatures require Catholic hospitals to provide emergency contraception to rape victims?
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Abortifacient Agents↗
Autonomy, respect, and genetic information policy: a reply to Tuija Takala and Matti Häyry.
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Coercion↗
Patient autonomy problems in palliative care: systematic development and evaluation of a questionnaire.
No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a questionnaire through: a) a literature review of the concepts and elements of autonomy; b) qualitative analysis of interviews with patients and professional carers; c) the construction of questionnaires; and d) testing validity and reliability. The basic conceptual elements were: dependency, losing control, and limitation of activities. Patients with disseminated cancer in the palliative stage of the disease (n = 64) participated in the study. A 9-item Patient Autonomy Questionnaire (PAQ) was developed (Cronbach's alpha 0.86), followed by a concise 4-item version (PAQs) (Cronbach's alpha 0.71). Autonomy problems were more prevalent than pain problems. The development of the PAQ may help draw attention to autonomy problems.
Adult↗
The new subjective medicine: taking the patient's point of view on health care and health.
Calls to respect patient autonomy and produce patient-centered outcomes have recently brought the patient's point of view back into the center of clinical medicine. Bioethics has argued that patient values must be respected in health care decisions. But it has generally not questioned medicine's goals, including its definition of health. For bioethics, health has remained an objective biological fact. However, pressures to improve the cost-effectiveness of medical care have increased interest in the subjective health and quality of life of patients. Perceived health, health-related quality of life, and health-state utilities bring health assessment progressively closer to the patient's perspective. Now even death's harm to patients is qualified by the value patients place on their health state. Medicine's epidemiological transition from acute to chronic disease is thus prompting an epistemological transition from primarily objective to primarily subjective evidence of health and health care effectiveness. Now some of the most important patient outcomes, like patient choices before them, are valid because they are subjective. Pathophysiology is appropriately becoming a means to produce health as it is defined from the patient's point of view. The physicians' job description will be changed to focus on patients' lives rather than patients' bodies. Definitive evaluations of medical effectiveness will occur within patients' lives rather than within doctors' hospitals. This further incorporation of patient subjectivity should carry us well beyond informed consent and the other protections for patient autonomy bequeathed to us by bioethics.
Bioethics↗
[Factors impacting on antiretroviral therapy compliance in HIV positive adolescents].
UNLABELLED: Is poor treatment observance frequently observed in HIV positive adolescent population, due to the adolescent developmental process, their experience of living with HIV, or lack of information on the disease or treatment? METHODS: We interviewed the 29 HIV positive adolescents followed up in one pediatric reference center. Confidential interviews were performed according to a standard questionnaire by psychologist and research nurse. RESULTS: Seventy-nine percent had stopped at least once a time their treatment who was the major barrier to their sense of freedom behind their adolescence (one-third of them decided to stop it more than one month), although 75% knew the potential consequences and had a good information about their seeks. Fifty-five percent expressed feelings of loneliness or depression, yet 75% consider they had a pleasant life because they had a normal life. In fact, the secret and silence about HIV were the price for this normality. CONCLUSION: Being dependent upon a treatment is a major constraint on the lives of HIV positive adolescents. Although they are fully informed, the deliberate interruption of treatment could attest of their expressed need for autonomy and medical prescription have to be careful with this problem.
Adolescent↗
Sexuality and women's rights in armed conflict in Sri Lanka.
The discourse of human rights in armed conflict situations is well adapted to respond to violence and violation, invoking internationally agreed principles of civil and political rights. However, in areas where the subject or domain of rights discourse is contested or controversial, human rights advocates appear less prepared to promote and defend such rights. Sexuality is one such domain. This paper explores the complex sexual choices women in Sri Lanka have had to negotiate, particularly widows and sex workers, within a context of ethnic conflict, militarisation and war. It argues that sexuality cannot be defined exclusively in terms of violation, even in a context dominated by violence, and that the sexual ordering of society may be subverted in such conditions. Newly widowed women and sex workers have had to negotiate self-determination as well as take responsibility for earning income and heading households, in spite of contrary community pressures. For women, political and economic rights are closely linked with the ability to determine their sexual and reproductive choices. The challenge to women's and human rights advocates is how to articulate sexual autonomy as a necessary right on a par with others, and strategise to secure this right during armed conflict and postwar reconstruction.
Adaptation, Psychological↗
Autonomy, discourse, and power: a postmodern reflection on principlism and bioethics.
In recent years there has been an increasing critique of the philosophically based reasoning in bioethics which is known as principlism. This article seeks to make a postmodern contribution to this emerging debate by using notions of power and discourse to highlight the limits and superficiality of this abstract, rationalistic mode of reflection. The focus of the discussion will be on the principle of autonomy. Recent doctoral research on a hospice organization (Karuna Hospice Service) will be used to contextualize the debate to end-of life ethical dilemmas. The conclusion will be reached that the discursive richness of this organization's notion of autonomy or choice, which incorporates a holistic respect for the individual and the active creation of alternatives, can provide important insights to our understanding of autonomy in bioethics. The concern is raised that if autonomy is reified as a principle outside of the context of discourse, it may only complement the hegemonic power of biomedicine.
Bioethics↗