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PubMed2003

Preserving integrity: experiences of people with mental health problems living in their own home in a new neighbourhood.

For patients with mental health problems, de-institutionalization has meant a shift from institutional care to living in the community. However, several studies show that problems of stigmatization, loneliness and negative attitudes devalue the dignity and autonomy of these patients. The aim of this study was to gain a deeper understanding of how people with mental health problems experience living in an apartment of their own. The data collection method was focus group interviews. The constant comparative method revealed the main category 'preserving integrity'. The subcategories were: the need for control over information, similar relationships with both friends and neighbours (symmetrical contact), and 'My home is my castle'. Participants who lived in a group home had little or no contact with their neighbours. The participants experienced lack of acceptance and loss of autonomy when meeting people. Integrity was a necessary condition in order for them to become equal citizens, experience autonomy and dignity, and have the opportunity to develop social contacts.

Adaptation, Psychological↗

PubMed2003

Voluntary assent in biomedical research with adolescents: a comparison of parent and adolescent views.

An informed consent and voluntary assent in biomedical research with adolescents is contingent on a variety of factors, including adolescent and parent perceptions of research risk, benefit, and decision-making autonomy. Thirty-seven adolescents with asthma and their parents evaluated a high or low aversion form of a pediatric asthma research vignette and provided an enrollment decision; their perceptions of family influence over the participation decision; and evaluations of risk, aversion, benefit, and burden of study procedures. Adolescents and their parents agreed on research participation decisions 74% of the time, yet both claimed ultimate responsibility for the participation decision. Both rated most study procedures as significantly more aversive than risky. Parents were more likely to rate aspects of the hypothetical study as beneficial and to provide higher risk ratings for procedures. Disagreements concerning research participation decisions and decision-making autonomy have implications for the exercise of voluntary assent in biomedical research.

Adolescent↗

PubMed2004

Ethics and the proposed treatment for a 13-year-old with atypical gender identity.

The case of a 13-year-old girl given permission by the Family Court of Australia to begin a sex-change process involves complex issues. Nevertheless, the ethical justification for the decision is not complicated. In this case, it can be argued that the net benefit eclipses concerns about competence, autonomy and the appropriateness of the intervention. The debate this case generated in the media reminds us that one of the essential tasks in ethics debates is to get our facts straight.

Adolescent↗

PubMed1991

Advanced directives. In search of self-determination.

Patients are seeking self-determination in health-care through the use of advanced directives. The author discusses advanced directives focusing on patient rights in decision making, autonomy, and the right to refuse life-sustaining treatment. Highlighted is the Patient Self-Determination Act of 1990, including strategies for its implementation in healthcare agencies.

Advance Directives↗

PubMed1990

Socio-cultural inequities in access to prenatal diagnosis: the role of insurance coverage and regulatory policies.

The article presents the results of a 4-month-period survey by questionnaire among all women attending the Marseille Centre for Prenatal Diagnosis for amniocentesis. Socio-cultural status of women getting access to amniocentesis is significantly higher than in the general population of pregnant women in the same geographic area of south-eastern France. Socio-cultural status is also higher among women who have to cover costs of procedure to get access to amniocentesis than among those who benefit from it free-of-charge according to French Social Security regulations. In contrast, risk perception and attitudes toward termination of pregnancy are similar in these two groups. A total of 24.4 per cent of respondents declared that they got access to amniocentesis 'on their own initiative', the remaining 75.6 per cent declaring that they 'were following medical advice'. Multidimensional analysis shows that the women who do not benefit from free-of-charge amniocentesis, and who have a high level of education and no antecedents of fetal and perinatal deaths, are more likely to perceive themselves as 'self-referring'. The study indicates that institutional coverage may be effective in reducing socio-cultural inequities in access to prenatal diagnosis. But such a policy may conflict with the respect of women's individual autonomy in the amniocentesis decision.

Adult↗

PubMed1994

Psychosocial knowledge and allopathic medicine: points of convergence and departure.

The past 15 years have witnessed a call for allopathic medicine to incorporate psychosocial perspectives into education and clinical practice. While a biopsychosocial perspective has influenced academic medicine in areas such as primary care and psychiatry, its direct impact on clinical medicine has been questionable. One barrier to the incorporation of psychosocial information into medicine which has only recently received attention has been different cultural assumptions which govern medicine versus the social-behavioral sciences. These assumptions are examined in the context of four issues: knowledge paradigms, models of education, acculturation of psychosocial knowledge into medicine, and patient autonomy. This cultural analysis provides a vantage point for understanding similarities as well as points of divergence between psychosocial and biomedical knowledge and practice.

Biomedical Technology↗

PubMed1992

Ethically justified guidelines for family planning interventions to prevent pregnancy in female patients with chronic mental illness.

OBJECTIVE: This article proposes ethically justified clinical guidelines for family planning interventions to prevent pregnancy in female patients. STUDY DESIGN: We reviewed literature on family planning and consequences of pregnancy in patients with chronic mental illness and related that literature to ethical principles. RESULTS: Patients with chronic mental illness are ethically unique because they have chronically and variably impaired autonomy. Existing guidelines and proposals for family planning interventions for mentally retarded patients are shown not to apply to such patients. CONCLUSION: Three sets of guidelines for three groups of patients, representing the continuum of chronically and variably impaired autonomy, are proposed: (1) a set of guidelines for patients who can achieve thresholds of autonomy, (2) a set of guidelines for patients irreversibly near thresholds of autonomy, and (3) a set of guidelines for patients irreversibly below thresholds of autonomy. These guidelines should contribute significantly to the quality of obstetric and gynecologic care for female patients with chronic mental illness.

Comprehension↗

PubMed2006

Disease, suffering, and sin: one Anglican's perspective.

This article explores some of the implications of understanding sin as failure of perception. The theological underpinning of the argument is the choice made in the Garden of Eden to eat the fruit of the tree of knowledge rather than the fruit of the tree of life, or wisdom. This has led to distorted perception, in which all things are seen as having separate, independent existences rather than joined together by their common divine source and their deep interrelatedness in the covenant made with God. The article discusses the fascination with the principle of respect for autonomy in the light of this theology. It also looks at perceptions of the HIV/AIDS crisis in Africa. It finishes with a definition of repentance that makes right perception possible.

Africa↗

PubMed2002

Bioethics after the terror.

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.

Bioethics↗

PubMed1984

Involuntary hospitalization of the mentally ill as a moral issue.

Conflict exists between medical model and civil liberties approaches to involuntary hospitalization for mental illness. The amassing and analysis of data will not resolve this conflict because the two sides view the problem from differing moral vantage points. Medical model adherents are influenced chiefly by utilitarian or consequentialist considerations, while the civil libertarians take more of a deontological or absolutist position. Opinions about such issues as hospitalization criteria of dangerousness versus medical necessity and the relative role of rights versus obligations and of autonomy versus paternalism can be seen largely to depend on such underlying value judgments. Neither side has a monopoly on truth or right in the question of involuntary hospitalization.

Attitude of Health Personnel↗

PubMedDate not supplied

Scientific and ethical conflicts in cancer studies involving human subjects.

Cancer studies involving human subjects present ethical conflicts which require a delicate balance to be struck between respect for fundamental human rights and the need to obtain sufficient data to satisfy study goals. Scientific and ethical conflicts at all stages of application of the scientific method are discussed. Legislative safeguards and ethical guidelines continue to evolve. Both must form an integral part of considerations regarding the feasibility of conducting cancer studies involving human subjects. Researchers, administrators, and legislators must be educated in and remain sensitive to two competing forces in epidemiologic research: the need to know versus respect for the individual's right to privacy, safety, dignity, and autonomy. An enhanced role for Institutional Review Boards to include an interactive monitoring function with ongoing studies is proposed.

Confidentiality↗

PubMed2002

Facilitating autonomous motivation for smoking cessation.

Physicians used either an autonomy-supportive or a controlling interpersonal style to counsel smokers based on National Cancer Institute guidelines. Physician autonomy support was rated from audiotapes, and patients' perceived competence and autonomous motivation for quitting were self-reported on questionnaires. Validated point prevalences for 6, 12, and 30 months and for continuous cessation were examined. The intervention did not have a direct effect on quit rates; however, structural equation modeling supported the self-determination process model of smoking cessation. The model indicated that the autonomy-supportive intervention was rated as more autonomy supportive, that rated autonomy support predicted autonomous motivation, and that autonomous motivation predicted cessation at all points in time. Perceived competence contributed independent variance to cessation only at 6 months.

Adult↗

PubMed2003

[The occurrence of coercive measures towards non-hospitalized elderly].

INTRODUCTION: The study is a nation-wide investigation of the occurrence of coercive measures towards non-hospitalised elderly (+65 years) with dementia in Denmark. These measures include the use of alarm and tracking systems, use of physical force and protective devices, detention of the elderly in their own homes, and forced movement to another domicile e.g. nursing home. These types of coercive measures are regulated in the Danish jurisdiction, but not systematically recorded. MATERIAL AND METHODS: A questionnaire was sent to all counties in Denmark concerning occurrence of the coercive measurements mentioned above. RESULTS: All 14 counties reported a very low use of all types of coercion with only a total of 123 incidents reported in all in 2001. DISCUSSION: This modest number gives rise to concern about lack of sufficient care towards elderly with dementia. The autonomy of the demented is important, but must not overrule basic care with the aim of ensuring dignified living conditions and safety from harm. The jurisdiction in this area is complicated and sometimes unclear.

Aged↗

PubMed1989

Prenatal informed consent for sonogram: an indication for obstetric ultrasonography.

Currently in the United States there is widespread agreement that obstetric ultrasonography should be performed when indicated, based on a beneficence-based calculus. However, there is considerable uncertainty that routine ultrasonography is similarly indicated for every pregnant woman. We argue that the standard of care demands that prenatal informed consent for sonogram be accepted as an indication for the prudent use of obstetric ultrasonography performed by qualified personnel. Prenatal informed consent for sonogram, a primarily autonomy-based indication, should be given the same weight in clinical judgment and practice as the beneficence-based indications listed by the National Institutes of Health consensus panel.

Beneficence↗

PubMed2004

Autonomy and integrity: upholding older adult patients' dignity.

AIM: The aim of this study was to deepen understanding of the relationship between autonomy and integrity in interactions between patients and individual health care workers in real-life care situations. METHOD: The data reported here are from a 6- and 12-month follow-up of the teaching of ethics to health care professionals working with older people. The data collection method used was participant observation. Health professionals' caring behaviour in everyday situations was observed from the point of view of patients' autonomy and integrity. Theoretical frameworks relating to autonomy and integrity were used to analyse the data. FINDINGS: The structural framework was useful for identifying the two concepts and their relationship in everyday situations. The data suggest that the two concepts are ethically complex. Autonomy is grounded in respect for patients' ability to choose, decide and take responsibility for their own lives. Autonomy varies within and between individuals and is dependent on context and on those involved. It stresses the intrinsic value of patients, which marks their worth independently of others. Integrity, however, is bound to patients' very existence, no matter what their physical and mental conditions, and must be respected regardless of their ability to act autonomously. CONCLUSION: The concepts of autonomy and integrity appear to presuppose one another and to be indivisible if older adult patients' dignity is to be maintained. This implies that when patients' autonomy is supported their integrity is protected and, consequently, their dignity upheld.

Adult↗

PubMed2001

Utility and treatment decisions: 15 clinical cases in Japan.

The purpose of this study was to investigate the applicability of utility concepts to treatment decision making in different clinical situations. In each of the 15 independent cases studied, subjective utility values were obtained directly from the patients before the treatment decisions were made. The optimal decision based on the utility values was then calculated. The actual treatment decisions were made without any input or influence by this study. The data were obtained at two large public hospitals and two privately owned multi-service hospitals in Kobe, Japan. Active participation by patients in treatment decision making seems particularly useful when two or more treatments are approximately equivalent in terms of outcome. A careful assessment of an individual patient's utilities can help the patient choose a treatment option meeting individual goals. Patient autonomy must be strengthened by giving the patients realistic and unbiased information of the alternatives available and the possible outcomes.

Brain Neoplasms↗

PubMed1993

What counts as success in genetic counselling?

The question of what counts as a successful outcome of the process of genetics counselling has recently become central because of the increasing calls for efficiency in health care, and for means of measuring efficiency. Angus Clarke has drawn attention to this trend, and has argued against both a measure in terms of the number of terminations of pregnancy performed as a result of counselling, and an assessment in terms of the contribution of genetics counselling to a national eugenics policy. He suggests instead a measure of workload. There are good arguments for supporting Clarke's position up to a point. In looking for an appropriate measure, much turns on how genetics counselling is defined. It is here understood in the context of an autonomy model of health care. It is argued that there is a contradiction between such an interpretation and the termination measure of outcome. The political philosophy underlying this outcome is also defective. Workload is not sufficient as a measure of outcome however; it is essential to look at the proper goals of an activity. It is argued that these must be connected in some way with the genetic health of the population; that the promotion of reproductive autonomy itself is not sufficient as a goal. The concern for genetic health, however, is interpreted in a way that avoids Clarke's concerns about a national eugenics policy.

Abortion, Eugenic↗

PubMed1996

Betting your life: an argument against certain advance directives.

In the last decade the use of advance directives or living wills has become increasingly common. This paper is concerned with those advance directives in which the user opts for withdrawal of active treatment in a future situation where he or she is incompetent to consent to conservative management but where that incompetence is potentially reversible. This type of directive assumes that the individual is able accurately to determine the type of treatment he or she would have adopted had he or she been competent in this future scenario. The paper argues that this assumption is flawed and provides theoretical and empirical evidence for this. If the assumption is false, and those taking out advance directives do not realise this, then the ethical bases for the use of these advance directives-the maximisation of the individual's autonomy and minimisation of harm-are undermined. The paper concludes that this form of advance directive should be abolished.

Advance Directive Adherence↗