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PubMed1993

Ethical aspects of the doctor-patient relationship.

Recently, the doctor-patient relationship has undergone major structural change by growing pressure from an ethic of personal autonomy, that gives patients greater control over their own lives, on a paternalistic "helpful healer's" ethic, whereby the doctor determines what should be done. It is a change in which informed consent by the patient has come to the fore in the traditional relationship with his doctor-as-friend-and-counsellor. The change is not without drawbacks as regards the quality of medical practice. The main characteristics of the two kinds of ethics are contrasted and some inferences drawn for the future course of medical practice.

Ethics, Medical↗

PubMed1994

Proxy decision making in Alzheimer disease research: durable powers of attorney, guardianship, and other alternatives.

Individuals in advanced stages of Alzheimer disease are incapable of giving or refusing legally or ethically valid consent to participation in biomedical and behavioral research protocols. Yet, many research protocols aimed at better treatment of persons with this disease can be conducted usefully only if such individuals are themselves involved as human subjects. This dilemma raises difficult issues of personal autonomy and beneficent motives. This article discusses several potential proxy decision-making mechanisms regarding research participation in light of the relevant legal and ethical concerns. The analysis is organized according to a matrix approach that takes into account procedural and substantive questions as well as the specific type of research protocol under consideration.

Advance Care Planning↗

PubMed1998

Why patients use alternative medicine: results of a national study.

CONTEXT: Research both in the United States and abroad suggests that significant numbers of people are involved with various forms of alternative medicine. However, the reasons for such use are, at present, poorly understood. OBJECTIVE: To investigate possible predictors of alternative health care use. METHODS: Three primary hypotheses were tested. People seek out these alternatives because (1) they are dissatisfied in some way with conventional treatment; (2) they see alternative treatments as offering more personal autonomy and control over health care decisions; and (3) the alternatives are seen as more compatible with the patients' values, worldview, or beliefs regarding the nature and meaning of health and illness. Additional predictor variables explored included demographics and health status. DESIGN: A written survey examining use of alternative health care, health status, values, and attitudes toward conventional medicine. Multiple logistic regression analyses were used in an effort to identify predictors of alternative health care use. SETTING AND PARTICIPANTS: A total of 1035 individuals randomly selected from a panel who had agreed to participate in mail surveys and who live throughout the United States. MAIN OUTCOME MEASURE: Use of alternative medicine within the previous year. RESULTS: The response rate was 69%. The following variables emerged as predictors of alternative health care use: more education (odds ratio [OR], 1.2; 95% confidence interval [CI], 1.1-1.3); poorer health status (OR, 1.3; 95% CI, 1.1-1.5); a holistic orientation to health (OR, 1.4; 95% CI, 1.1-1.9); having had a transformational experience that changed the person's worldview (OR, 1 .8; 95% CI, 1 .3-2.5); any of the following health problems: anxiety (OR, 3.1; 95% CI, 1.6-6.0); back problems (OR, 2.3; 95% CI, 1 .7-3.2); chronic pain (OR, 2.0; 95% CI, 1.1 -3.5); urinarytract problems (OR, 2.2; 95% CI, 1.3-3.5); and classification in a cultural group identifiable by their commitment to environmentalism, commitment to feminism, and interest in spirituality and personal growth psychology (OR, 2.0; 95% CI, 1.4-2.7). Dissatisfaction with conventional medicine did not predict use of alternative medicine. Only 4.4% of those surveyed reported relying primarily on alternative therapies. CONCLUSION: Along with being more educated and reporting poorer health status, the majority of alternative medicine users appear to be doing so not so much as a result of being dissatisfied with conventional medicine but largely because they find these health care alternatives to be more congruent with their own values, beliefs, and philosophical orientations toward health and life.

Adult↗

PubMed2001

The role of community advisory boards: involving communities in the informed consent process.

Ethical research involving human subjects mandates that individual informed consent be obtained from research participants or from surrogates when participants are not able to consent for themselves. The existing requirements for informed consent assume that all study participants have personal autonomy; fully comprehend the purpose, risks, and benefits of the research; and volunteer for projects that disclose all relevant information. Yet contemporary examples of lapses in the individual informed consent process have been reported. The authors propose the use of community advisory boards, which can facilitate research by providing advice about the informed consent process and the design and implementation of research protocols. These activities could help reduce the number of individual informed consent lapses, benefiting study participants and the scientific integrity of the research in question.

Advisory Committees↗

PubMedDate not supplied

Eugenics and genetic testing.

Pressures to lower health-care costs remain an important stimulus to eugenic approaches. Prenatal diagnosis followed by abortion of affected fetuses has replaced sterilization as the major eugenic technique. Voluntary acceptance has replaced coercion, but subtle pressures undermine personal autonomy. The failure of the old eugenics to accurately predict who will have affected offspring virtually disappears when prenatal diagnosis is used to predict Mendelian disorders. However, when prenatal diagnosis is used to detect inherited susceptibilities to adult-onset, common, complex disorders, considerable uncertainty is inherent in the prediction. Intolerance and the resurgence of genetic determinism are current pressures for a eugenic approach. The increasing use of carrier screening (to identify those at risk of having affected offspring) and of prenatal diagnosis could itself generate intolerance for those who refuse the procedures. Genetic determinism deflects society from social action that would reduce the burden of disease far more than even the maximum use of eugenics.

Abortion, Eugenic↗

PubMed2004

Ethical issues in research on control of the HIV/AIDS epidemic: report from a workshop of the world federation of scientists, Erice, Sicily, Italy, 22-24 August 2003.

In research on control of the HIV/AIDS epidemic there are many ethical issues to be considered. The problem of personal autonomy versus the interest of society to prevent the spread of the disease in various settings makes it difficult to follow the regulations of the Declaration of Helsinki in all respects. This is particularly clear in the evaluation of trials aimed at preventing mother-to-child transmission of HIV. The interest of the child does not always conform to the policy of avoiding stigmatization of the mother. Programmes for the implementation of antiretroviral therapy and vaccine trials may differ in countries with different mean incomes of the inhabitants, and are also influenced by local patterns. For this reason, the Declaration of Helsinki should be changed in such a way that it conforms with the ways in which it may be possible to combat such a disastrous epidemic as that caused by HIV.

Developing Countries↗

PubMed1998

Ethical dilemmas in a psychiatric nursing study.

This article describes the ethical dilemmas encountered by the authors while conducting qualitative research with psychiatric patients as participants. The ethical conflicts are explored in terms of the principles of personal autonomy, voluntariness and awareness of the purpose of the study, with illustrations from the authors' research experience. This study addresses the everyday life of psychiatric nursing in a psychiatric hospital as described by patients, nurses and nursing students. The data were collected in a university hospital in northern Finland, using videotaped observations and recorded interviews. Although no definitive resolutions are proposed to the conflicts, the article endeavours to enhance awareness of the ethically perplexing situations possibly encountered by researchers during a study process. The institution where the study was conducted has a Research Board entitled to resolve ethical questions. The Ethics Review Committee of the Medical Faculty at the University and the Research Board of the University Hospital's Department of Psychiatry reviewed and accepted this research plan. They also recommended solutions to some specific ethical problems that occurred in the course of the study. Moreover, some ethical dilemmas required further study and debate during the process.

Behavioral Research↗

PubMed2005

[Euthanasia in patients with cancer and the continuous-care providers].

During the clinical evolution of patients with cancer there are many occasions, or phases of the disease, when there are no specific treatments and, as such, we need to provide maximum comfort following appropriate symptom control; in this stage it is fundamental to respect personal autonomy together with the option to reject futile treatment. With appropriate control of symptoms it is possible to reach the stage where the majority of the patients do not continue to suffer. Continuous-care providers for cancer patients are those who are responsible for providing help to resolve these situations. In palliative medicine there are highly-efficacious procedures to the help in these last hours. Sedation is applied when it is impossible to control symptoms by other means. With appropriate Carer cover, it is not necessary to introduce laws on assisted suicide and/or active voluntary euthanasia, neither because of the magnitude of demand, nor because of the difficulties in achieving appropriate control of symptoms.

Australia↗

PubMed1992

'Aid-in-dying' and the taking of human life.

In several US states, the legalisation of euthanasia has become a question for voters to decide in public referenda. This democratic approach in politics is consistent with notions of personal autonomy in medicine, but the right of choice does not mean all choices are morally equal. A presumption against the taking of human life is embedded in the formative moral traditions of society; human life does not have absolute value, but we do and should impose a strict burden of justification for exceptions to the presumption, as exemplified by the moral criteria invoked to justify self-defence, capital punishment, or just war. These criteria can illuminate whether another exception should be carved out for doctor-assisted suicide or active euthanasia. It does not seem, in the United States at any rate, that all possible alternatives to affirm the control and dignity of the dying patient and to relieve pain and suffering, short of taking life, have been exhausted. Moreover, the procedural safeguards built into many proposals for legalised euthanasia would likely be undone by the sorry state of the US health care system, with its lack of universal access to care, chronic cost-containment ills, a litigious climate, and socioeconomic barriers to care. There remains, however, common ground in the quest for humane care of the dying.

Advance Directives↗

PubMed1988

Relative importance of after-effects, environment and socio-economic factors on the social integration of stroke victims.

This research is about the social integration of victims of a cerebrovascular accident. The objective is to evaluate the relative importance of physical after-effects, socio-economic characteristics, social and environmental factors on the degree of social integration subsequently achieved. This is a longitudinal evaluation with three data collections from an initial sample of 129 persons from the Quebec City area, Canada. Individual functional autonomy increases significantly while in institution and during the six months following discharge. At the time of discharge, 72.9% return to a normal home. A regression analysis shows that the determining factors relating to homecoming are motor functions and autonomy, personal perception of health conditions, proximity of children and relatives, relatively low age, regular presence of another person in the home, and proximity of friends. An important decrease in the practice of many activities occurs six months after homecoming: paid work, housework, management of personal affairs, and leisure activities. Absence of serious motor and language after-effects, a high level of perceived health condition, accessible facilities, proximity of relatives, and the ownership of a car are the factors most strongly associated with continued practice of these activities. Social contacts are more frequent than for comparable populations as far as children and relatives are concerned, but they are less frequent with friends. Proximity is a key factor. A quarter of the sample experiences problems relating to psychological well-being.

Activities of Daily Living↗

PubMed1999

Professional nurse autonomy: concept analysis and application to nursing education.

Professional nurse autonomy, an essential attribute of a discipline striving for full professional status, is often confused with personal autonomy, work autonomy or aggregate professional autonomy. Using Walker & Avant's (1995) model for concept analysis, this paper presents an analysis of professional nurse autonomy. Professional nurse autonomy is defined as belief in the centrality of the client when making responsible discretionary decisions, both independently and interdependently, that reflect advocacy for the client. Critical attributes include caring, affiliative relationships with clients, responsible discretionary decision making, collegial interdependence, and proactive advocacy for clients. Antecedents include educational and personal qualities that promote professional nurse autonomy. Accountability is the primary consequence of professional nurse autonomy. Associated feelings of empowerment link work autonomy and professional autonomy and lead to job satisfaction, commitment to the profession, and the professionalization of nursing. A student-centred, process-orientated curricular design provides an environment for learning professional nurse autonomy. To support the development of professional nurse autonomy, the curriculum must emphasize knowledge development, understanding, and clinical decision making.

Curriculum↗

PubMed1996

Ethics of assisted autonomy in the nursing home: types of assisting among long-term care nurses.

Twenty-five long-term care nurses in eight nursing homes in central Kentucky were interviewed concerning ways in which they might assist elderly residents to preserve and enhance their personal autonomy. Data from the interviews were analysed using grounded theory methodology. Seven specific categories of assisting were discovered and described: personalizing, informing, persuading, shaping instrumental circumstances, considering, mentioning opportunities, and assessing causes of an impaired capacity for decision-making. The ethical implications of these categories of assisting for clinical practice are examined. Although nurses recognized the importance of resident autonomy, the majority of them failed consistently to employ the categories of assistance to foster resident self-determination and most of them held an inadequate understanding of the concepts of consent and decisional capacity. To assure confidentiality, pseudonyms are used in the following cases and discussions for all names of nurses, residents and facilities.

Activities of Daily Living↗

PubMed1998

Confirmatory factor analysis of the revised Personal Style Inventory.

The revised Personal Style Inventory (PSI) was developed to measure the sociotropy and autonomy personality dimensions; both of these dimensions are thought to confer specific vulnerabilities to the onset, maintenance, and reoccurrence of depression. Confirmatory factor analysis was used to test the theoretical structure that informed the construction of the PSI. Using a large sample of nonclinical participants (n = 869) and a sample of outpatients with major depression (n = 101), both the items and the subscales of the PSI decomposed into factor structures that were, overall, fair to good representations of the theoretical model. Modifications were needed at the subscale level to achieve an adequate fit for the nonclinical and clinical samples, which provide implications for both the measurement and theory of the PSI and the sociotropy and autonomy domains.

Adult↗

PubMed2001

The interaction between risk factors and self-regulation in the development of chronic diseases.

Most established risk factors for chronic disease incidence and mortality from cancer, such as cigarette smoke, alcohol drinking, occupational and environmental hazards and dietary factors, have been shown to vary in their importance in terms of relative risk. In studies which addressed the individual level of behaviour, but also coping and self-regulation, a strong modifying effect of long-lasting hopelessness and helplessness has been found to depend on personality. Autonomy and healthful self-regulation have been defined as the regulation of behaviour in those activities which are carried out in the physical and social environment and lead to stimulated feeling, pleasure, perception of inner and social security, and competence. Persons with such well-regulated behaviour are capable of coping with sources of listlessness, uncertainty and instability. Those individuals showing a well-regulated behaviour arrive at a psycho-neuro-physiological basis for better competence and defence against health hazards. The capability determined by the degree of self-regulation is measured with different instruments. The experience with a questionnaire for the assessment of self-regulation, its quantification and predictive value is presented here. The method of study is by prospective approach, which permits the demonstration of causal associations (promotion, co-causality) and facilitates the experimental approach through intervention. A causal association is likely if the effect of a modifier is not only found in a prospective (observational) follow-up but also if the (experimental) intervention shows an effect. The method of intervention by stimulation of self-regulation is the autonomy training developed by Grossarth-Maticek. Using several examples presenting the method, the modifying effect is shown by referring to four risk factors. If the risk factors are associated with an inhibited self-regulation, then the effect in terms of disease and pathological outcome is stronger. This was shown with the hazardous effects of smoking, alcohol drinking and dietary malnutrition as well as with automobile exhaust. It may be important, for example, whether a person feels self-determined when driving a car for hours but does not need to consume ethanol-containing drinks for feeling well. One's own capability to regulate well over time apparently modulates functions of the body and hence modifies the effects of physical factors. In epidemiological studies, which assess mostly only exogenous factors (so called established risk factors) this evidence has to be considered by including the pertinent data on the relevant questions in each field study.

Alcohol Drinking↗

PubMed2006

Multidisciplinary care of the dying adolescent.

The adolescent at the end of life poses a unique combination of challenges resulting from the collision of failing health with a developmental trajectory meant to lead to attainment of personal independence. Because virtually all spheres of the dying adolescent's life are affected, optimal palliative care for these young persons requires a multidisciplinary team whose members have a good understanding of their complementary roles and a shared commitment to providing well-coordinated care. Members of the team include the physician (to initiate and coordinate palliative care management); the nurse (to work collaboratively with the physician and adolescent, especially through effective patient advocacy); the psychologist (to assess and manage the patient's neurocognitive and emotional status); the social worker (to assess and optimize support networks); the chaplain (to support the adolescent's search for spiritual meaning); and the child life specialist (to facilitate effective communication in preparing for death). A crucial area for dying adolescents is medical decision making, where the full range of combined support is needed. By helping the young person continue to develop personal autonomy, the multidisciplinary team will enable even the dying adolescent to experience dignity and personal fulfillment.

Adaptation, Psychological↗

PubMed2003

The psychological contracts of National Health Service nurses.

AIMS: Following the psychological contract model of the employee-employer exchange relationship is offered as a means of understanding the expectations of a UK sample of 223 National Health Service (NHS) nurses in association with their leaving intentions. DESIGN AND METHODS: A pilot study involving 21 NHS nurses, using the repertory grid technique was conducted to elicit contract expectations. Twenty-nine categories of expectation were identified through content analysis. The study proper, employed a survey developed on the basis of results from the pilot study to identify contract profiles among 223 nurses from three London/South-east NHS hospitals, using the Q-sort method. Type of contract held (relational/transactional), satisfaction (job and organization), and leaving intentions were also examined. RESULTS: Q-analysis yielded four contract profiles among the nurses sampled: 'self-development and achievement'; 'belonging and development'; 'competence and collegiality' and 'autonomy and development'. Correlation analysis demonstrated that leaving intentions were associated with a need for personal autonomy and development, and the violation of expectations for being appreciated, valued, recognized and rewarded for effort, loyalty, hard-work and achievement, negative endorsement of a relational contract, positive endorsement of a transactional contract, and job and organizational dissatisfaction. CONCLUSION: Findings illustrate the diagnostic utility of the term psychological contract for understanding the expectations of NHS nurses. The potential significance of these findings for managing nurse retention is highlighted.

Adult↗

PubMed1999

Physician-assisted suicide and voluntary euthanasia: is it time the UK law caught up?

People who wish to end their lives when they consider that they cannot endure further pain and suffering cannot legally obtain help to produce a peaceful death. The reality of practice seems to be that, covertly, physician-assisted suicide and voluntary euthanasia do take place. The value of personal autonomy in issues of consent has been clarified in the courts in that a competent adult person has the right to refuse or choose alternative treatments even if death will be the outcome. This issue needs open discussion and regulation in order to protect those vulnerable people in our society.

Adult↗

PubMed1990

Relationship of personal-social variables to belief in paternalism in parent caregiving situations.

Paternalism in family caregiving may jeopardize the older persons' autonomy; it needs to be better understood. Study objectives were to determine the relationship of belief in paternalism to personal-social characteristics and to determine the relative importance of these variables as predictors of belief in paternalism. Forty-six pairs of daughters (age 49.7) and mothers (age 77.7) were measured on belief in paternalism, dogmatism, attitude toward elders, affective feelings toward the other, and background and caregiving variables. Among both mothers and daughters, dogmatism and attitude toward elders were related to belief in paternalism; daughters' affective feelings was also related. Caregiving variables were unrelated, and demographic background was important only for daughters. Attitude toward elders was the strongest predictor. Results were interpreted in terms of a traditional family ideology.

Adult↗