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PubMed2005

The right to remain in ignorance about genetic information--can such a right be defended in the name of autonomy?

Within the field of medicine, it has become widely accepted that respecting the autonomy of individuals justifies their right to know. More recently, commentators have asked whether such respect also justifies an individual's right not to know; that is, their right to remain in ignorance. In this paper, I examine what the concept of autonomy entails and whether one is justified in exercising a right not to know genetic information about oneself in the name of autonomy. An important distinction is drawn between autonomous choices generally and autonomous choices about how we shall conduct our lives. Against this theoretical discussion, I consider two hypothetical cases. I conclude by claiming that ignorance cannot be justified in the name of autonomy, and furthermore that where genetic information is pertinent to one's future autonomy, one cannot exercise a right not to know.

Adult↗
PubMed1986

The ethics of resource allocation in critical care.

Increasingly, the ethics of resource allocation is becoming one of the most critical ethical problems faced by critical care decision makers; what is lacking is a framework for analyzing the ethics of decisions in resource allocation. This article examines the four ethical principles--patient-centered beneficence, autonomy, full beneficence, and justice--that can contribute to cost containment/resource allocation.

Beneficence↗
PubMedDate not supplied

Ethical issues in informed consent. Research on medical cost containment.

The decision to contain medical costs, which is a political and social decision, entails restriction of medical services. To guide public policy, research on the impact of such restriction must be carried out, but this type of research differs significantly from most other medical research. Difficult issues concerning informed consent arise, with potential conflicts among principles of maximization of good and minimization of harm to the patient, the patient's right to self-determination, and the utilitarian goal of maximization of collective welfare. We have discussed these principles in the context of relationships between patient and physician and between subject and investigator. Approaches considered include emphasis on retrospective studies, use of statistical techniques to formulate clinical decision-making rules on the basis of available data, three-celled randomization designs, and the role of the primary-care physician in maximizing patient autonomy and minimizing the potentially threatening aspects of informed consent for such studies.

Clinical Trials as Topic↗
PubMed1991

Autonomy's responsibility. A gloss on the Wanglie affair.

In 1990, 87-year-old Helga Wanglie suffered cardiac arrest while being treated for lung disease at a chronic care facility. When she failed to regain consciousness after being resuscitated, a physician suggested the possibility of discontinuing treatment. At this point, her family requested that she be transferred to a hospital for evaluation. After a variety of procedures failed to improve her condition, the attending physician told the family he was no longer willing to prescribe the respirator because it could not serve her personal medical interests and that her unconscious state precluded the possibility of her appreciating life. However, the family insisted that the hospital provide Ms. Wanglie care, and she remained in treatment until she died 13 months later. The dispute between the hospital and the Wanglie family brings into focus the fundamental premises of the doctor-patient-family relationship. The rules for these relationships-described by such terms as "rights," "responsibilities," and "informed consent"--have both private and public dimensions. Mr. Wanglie had a clear right to be fully informed of all medically reasonable treatments and a right to choose or refuse any therapy the physician prescribed. He did not, however, have a right to demand any treatment he wanted.

Aged↗
PubMedDate not supplied

When Danny said no! Refusal of treatment by a patient of questionable competence.

The patient we call Danny was a mildly mentally retarded male in his mid-thirties who adamantly refused kidney dialysis when it was offered as the only therapeutic option for his progressive kidney failure. It was uncertain how fully Danny understood the implications of his refusal. To complicate the case still further, several "advocates" emerged to speak on Danny's behalf--each with a somewhat different interpretation of the situation and different sets of value presuppositions and ethical principles to apply to the choice. We chronicle the development of this situation through a series of scenes; and in each scene we also attempt to clarify the ethical and medico-legal issues involved at that point. Danny was finally permitted to make this decision for himself--though more by default than by an agreement by all parties to honor his autonomy. Our hope is that this presentation will lead to further discussion and clarification of these important issues.

Comprehension↗
PubMedDate not supplied

Preferences for autonomy when patients are physicians.

OBJECTIVE: To assess physicians' preferences for patient autonomy when they are patients themselves. DESIGN: Data from practicing physicians attending a continuing medical education course were obtained by questionnaire. After adjustment for sociodemographic differences, data from the physician population were compared with similar data previously obtained from a patient population. PARTICIPANTS: One hundred fifty-one physicians (94% of the study population) agreed to participate. Ninety percent were primary care physicians. Fifty-eight percent practiced in the eastern United States. MAIN RESULTS: The physicians, like the regular patients, preferred that the principal role in decision making for their own illnesses be handled by their providers, not by themselves. As illness severity increased, physicians indicated significantly less desire for making decisions (p less than 0.01). The magnitudes of the effects of increasing illness severity upon the decision-making preferences of physician and regular patients were comparable (p = 0.53). Physician-patients, however, were slightly more interested than regular patients in making decisions (p less than 0.001). CONCLUSIONS: although physician-patients are slightly more interested than regular patients in making decisions, for the most part their preferences for autonomy resemble those of regular patients. These results suggest that medical knowledge and sociocultural factors are only minor determinants of patient attitudes towards autonomy. Rather, patients' preferences to be relieved of decision-making responsibility are better understood as part of the phenomenology of illness.

Adult↗
PubMedDate not supplied

Cardiovascular aging and psychometric performances: correlations in a group of ultraseptagenarian elderly.

Aging of the Italian population resulted in a net increase of the cardiovascular pathologies, and the correlated disabilities. In addition, the cardiovascular diseases represent actually in Italy the most frequent cause of death. With advancing age, both the heart and the blood vessels undergo numerous morphological and functional modifications, which are reducing the functional reserves of these organs. The present study looked for correlation between the cardiac functionality and the cognitive, as well as affective functions. Furthermore, we evaluated the functional variations of the autonomy and autosufficiency of the same patients. We had 171 enrolled subjects (108 women and 63 men), all above the age of 70 years. Based on the classification of the New York Heart Association (NYHA), 85 of these patients (35 men and 50 women) had a II class (Group A), and 86 of them (28 men and 58 women) a III NYHA class of heart function (Group B). We included only patients who did not have any cerebrovascular event yet, and were not bed-ridden. The psychometric performance has been evaluated by using the mini-mental state examination (MMSE), the geriatric depression scale (GDS), the activities of daily living (ADL) and the instrumental activities of daily living (IADL) scales. Cardiac functions have been measured by Doppler echocardiography, in M-mode. The Group A (of mean age 71 +/- 3 years) displayed ventricular ejection fraction (VEF) values in average of 43 +/- 4%, MMSE scores 27 +/- 2; GDS scores 14 +/- 3; IADL 6 +/- 1, and ADL = 6, i.e., maintained a complete autosufficiency. The Group B (mean age 74 +/- 4 years) displayed VEF values in average of 26 +/- 3%, MMSE scores 23 +/- 4; GDS scores 22 +/- 3; IADL 4 +/- 2, and ADL = 4 +/- 1, i.e., had a reduced autosufficiency. These results confirm that also the heart pays a toll for aging: the myocardial contractility becomes significantly altered, meaning the loss of cardiac functions itself. These morpho-functional heart alterations are accompanied by decreased psychometric performances during aging, with consequent reductions of cognitivity, affectivity, autosufficiency and autonomy, involving a complex decrease of the quality of life.

Activities of Daily Living↗
PubMed1998

Ethics and imagination. Implications of cognitive semantics for medical ethics.

Cognitive semantics has made important empirical findings about human conceptualization. In this paper some findings concerning moral concepts are analyzed and their implications for medical ethics discussed. The key idea is that morality has to do with metaphors and imagination rather than with well-defined concepts and deduction. It is argued that normative medical ethics to be psychologically realistic should take these findings seriously. This means that an "imaginative casuistry" is to be preferred compared to principlism and to other forms of casuistry. Furthermore, the metaphorical character of central principles in medical ethics such as autonomy, utility, justice, and integrity is indicated. Such principles are interpreted as rules of thumb summarizing the collective wisdom concerning prototype cases.

Beneficence↗
PubMed2003

Autonomy, subject-relativity, and subjective and objective theories of well-being in bioethics.

Among the different approaches to questions of biomedical ethics, there is a view that stresses the importance of a patient's right to make her own decisions in evaluative questions concerning her own well-being. This approach, the autonomy-based approach to biomedical ethics, has usually led to the adoption of a subjective theory of well-being on the basis of its commitment to the value of autonomy and to the view that well-being is always relative to a subject. In this article, it is argued that these two commitments need not lead to subjectivism concerning the nature of well-being.

Ethical Relativism↗
PubMed2004

The payment of drug addicts to increase their sterilisation rate is morally unjustified and not simply 'A Fine Balance'.

This paper argues that cash incentives offered to drug addicts in return for sterilisation are both legally and morally unacceptable. Such incentives act coercively, undermines one's freedom and autonomy and importantly invalidates real consent. This has important implications for any clinicians involved in such a scheme. The paper prompts more detailed studies into the use of incentives in modern-day health care.

Coercion↗
PubMed1996

What shall we do with Norman? An experiment in communal discernment.

We were a group of Christian friends searching for affirmations that lay at the heart of our faith and reached to the limits of our existence and moral authority. As we have reflected on our role in deciding whether and to what extent we could assist in allowing our terminally ill friend, seventy-nine-year-old, Norman to die, we were deeply troubled by the moral ambiguity of our involvement. Through a careful process of authority through communal discernment, our responsibility for Norman became clear: we were to assist him in living the life he embraced in baptism -- a life which included a destiny that was conformed to the crucified and risen one. That was not the destiny we chose for Norman; it was the destiny he owned. We recognized with Norman that our lives are not our own to be guided by autonomy and liberty, but rather to be lived for the glory of Jesus the Christ.

Aged↗
PubMedDate not supplied

Children's achievement moderates the effects of mothers' use of control and autonomy support.

Two studies investigated the effects of parents' control and autonomy support on low- and high-achieving children. In Study 1, mothers' (N=110) involvement with children (7 to 10 years old) in the context of a challenging task was observed. During this interaction, mothers' control predicted diminished engagement and their autonomy support predicted enhanced performance for low-achieving children more than for high-achieving children. In Study 2, mothers' (N=121) responses to children's (9 to 12 years old) failure were assessed with a daily checklist. Children's grades were obtained at this time and 6 months later. Mothers' controlling responses predicted decreased performance and their autonomy-supportive responses predicted increased performance over time for low achievers more than for high achievers.

Adult↗
PubMed1996

Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents.

Adolescents who are actively requesting Huntington's predictive testing of their own accord pose a dilemma to those providing testing. In the absence of empirical evidence as regards the impact of genetic testing on minors, current policy and guidelines, based on the ethical principles of non-maleficence and respect for individual autonomy and confidentiality, generally exclude the testing of minors. It is argued that adherence to an age based exclusion criterion in Huntington's disease predictive testing protocols is out of step with trends in UK case law concerning minors' consent to medical treatment. Furthermore, contributions from developmental psychology and research into adolescents' decision making competence suggest that adolescents can make informed choices about their health and personal lives. Criteria for developing an assessment approach to such requests are put forward and the implications of a case by case evaluation of competence to consent in terms of clinicians' tolerance for uncertainty are discussed.

Adolescent↗
PubMed1997

Using clients.

An important part of the student nurse's training involves reflection on practice, as expressed in written assignments and seminar discussions. In this, students make use of material drawn from their work with clients. A key ethical question is, therefore: should clients' permission be sought by students for this use of case material in coursework assignments. This article examines in some detail the arguments both for and against seeking clients' permission and concludes that, in view of the principle of respect for autonomy, there is a moral obligation to gain consent. It is argued, however, that there may be legitimate exceptions to this.

Confidentiality↗
PubMed2004

Intersections of gender and age in health care: adapting autonomy and confidentiality for the adolescent girl.

Autonomy and confidentiality are central topics in adolescent health care, both pertaining to findings that nonparent adults often benefit adolescent girls' psychological resilience. Traditionally, autonomy captures a patient's right to self-determine a course of treatment, whereas confidentiality is understood as privacy between doctor and patient. The author proposes a revision of these constructs to accommodate the psychology of adolescent girls in health care contexts through a case study of a 17-year-old girl's hospitalization. In particular, the importance of voice and trust in girls' psychology calls for understanding autonomy as self in relationship and confidentiality as mutual confidence. Suggestions for practice are guided by the premise that girls' health care can foster psychological risk or resilience, depending on the doctor-patient relationship.

Adolescent↗
PubMed1993

Philosophical foundations of respect for autonomy.

Understanding the philosophical foundations of the principle of respect for autonomy is essential for its proper application within medical ethics. The foundations provided by Immanuel Kant's principle of humanity and John Stuart Mill's principle of liberty share substantial areas of agreement including: the grounding of respect for autonomy in the capacity for rational agency, the restriction of this principle to rational agents, and the important distinction between influence and control. Their work helps to clarify the scope and role of the principle of respect for autonomy in health care delivery; its implications for truth telling, informed consent, and confidentiality; and its relationship to other moral principles, such as beneficence and distributive justice.

Beneficence↗
PubMed2006

[The role of elderly female consumers of allopathic tranquilizers in the popularization of the use of these medicines].

The consumption of allopathic tranquilizers (benzodiazepines) has social and cultural dimensions, not being restricted to a relation between physician and patient. Therefore, we aimed to show that the consumption of tranquilizers is particularized according to the social and cultural contexts their consumers are involved in. Using a qualitative approach with semistructured interviews, we search for conceptions about allopathic tranquilizers in 18 elderly women, psychiatric patients attended to in the Mental Health Centre of the Health Teaching Centre at the, University of São Paulo at Ribeirão Preto Medical School, (FMRP-USP), in the city of Ribeirão Preto (SP), Brazil, who were consumers of benzodiazepines for more than one year. We concluded that the consumption of tranquilizers is entangled in a network of social relations, including neighbors, relatives and friends. The interviewed women showed to have autonomy, feeling able to use, indicate, offer and lend, or not, these medicines, according to their conceptions.

Aged↗