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PubMed2005

Longitudinal changes in adaptive behaviors of movers and stayers: findings from a controlled research design.

Reviews of research on deinstitutionalization show that investigators have focused primarily on adaptive behavior changes of "movers," while paying minimal attention to "stayers." Analysis of their research also revealed some methodological problems. We assessed 150 movers and 150 stayers in 1994, before deinstitutionalization began in 1997. We matched samples on seven distinctive variables, which were again assessed at similar intervals of 3, 15, and 27 months after movement. Movers made significant gains in independence and household skills, while stayers incurred losses in social skills and cognitive competencies. Teaching domestic skills and high autonomy were the best predictors of final self-care and multicognitive competencies, after controlling for initial baseline scores.

Activities of Daily Living↗
PubMed1992

The Patient Self-Determination Act: the ethical dimensions.

Advanced, sophisticated technology, rising health care costs, and consumerism all combined to drive the development of the Patient Self-Determination Act. Ethical implications include, but are not limited, to the principles of autonomy and beneficence. Paternalism is also discussed as a compromise to autonomy. Caring is used to focus on the contextual perspective of both patients and nurses for ethical decision making. Implications for future ethical practice conclude the discussion.

Beneficence↗
PubMed1996

Autonomy for elderly people in long-term care.

A cross-sectional view of the extent to which residents in long-term care exercise autonomy has been obtained from an audit using the Royal College of Physicians' CARE scheme (Continuous Assessment Review and Evaluation) in 17 long-term care facilities among 298 residents. Most centres have procedures in place to enable residents to exercise choice, on information or services provided and how to complain, but only half provide opportunities to comment on policy and procedures and planned changes. There was a high level of personal care plans but many of these were disappointing in their detailed content; less than half of the residents had a key worker; a series of indicators of choice scored reasonably high in nursing homes but lower in hospitals; independent advocates are in evidence where patients' mental competence is in question. The established use of care plans should provide a foundation for improvements in this aspect of the quality of care. Such audits could form the basis for a national quality system in long-term care.

Aged↗
PubMed2006

[Euthanasia, self-determination, and palliative care].

Many of the judicial and ethical questions raised by euthanasia are still the subject of controversial discussions. In this context the article broaches the issues of the doctor- patient relationship, patient's right to autonomy, and advance directive. It deals with the present judicial possibilities of euthanasia in Germany with reference to the situation in the Netherlands. Finally, there is an outlook on the role of palliative care and of hospices.

Euthanasia↗
PubMed1993

Ethical dilemmas in long-term care settings; interviews with nurses in Sweden and England.

With the aim of investigating ethical dilemmas arising in long-term care settings, nurses were interviewed at hospitals in southern Sweden and southern England. The interviews confirmed the occurrence of conflicts in caring for the elderly, and conflicts in the staff-patient-relative constellation. The content of the interviews was analysed with regard to prevailing principles of patient autonomy and the ranking order of preferences among those involved.

Conflict, Psychological↗
PubMed1986

The ethics of mandatory elder abuse reporting statutes.

The ethics of mandatory elder abuse reporting statutes are analyzed in terms of beneficence, autonomy, and nonmaleficence. The statutes, based on the ethical principle of beneficence, are now the law in 37 states. However, evidence to support that the statutes actually fulfill rules derived from beneficence is weak. As a result, the strength of rules derived from autonomy and nonmaleficence, already strong within nursing, is increased, and potential conflicts between the rules to remove harm but to obtain consent, to prevent harm but to maintain confidentiality, and to provide benefits but to inflict no harm are created.

Aged↗
PubMed2005

Amputees by choice: body integrity identity disorder and the ethics of amputation.

Should surgeons be permitted to amputate healthy limbs if patients request such operations? We argue that if such patients are experiencing significant distress as a consequence of the rare psychological disorder named Body Integrity Identity Disorder (BIID), such operations might be permissible. We examine rival accounts of the origins of the desire for healthy limb amputations and argue that none are as plausible as the BIID hypothesis. We then turn to the moral arguments against such operations, and argue that on the evidence available, none is compelling. BIID sufferers meet reasonable standards for rationality and autonomy: so as long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their requests.

Amputation, Surgical↗
PubMed1995

Suicide: the interaction of clinical and ethical issues.

Although bioethical principles such as beneficence, nonmaleficence, and autonomy increasingly guide clinical decision making, in good clinical practice none of these principles is absolute. The authors describe how clinical and ethical issues interact in prioritizing principles in the treatment of suicidal patients. For the acutely suicidal patient, beneficence must be given primacy, as it should for the chronically suicidal patient who is unable to control self-destructive impulses. However, some chronically suicidal patients may be capable of resisting these impulses, and in such situations, respecting patients' autonomy facilitates clinical work and prevents the therapist from being drawn into a role that encourages regression. The successful management of the suicidal patient illustrates the need for dynamic, rather than rigid, application of ethical principles.

Beneficence↗
PubMed1999

An Orwellian scenario: court ordered caesarean section and women's autonomy.

Between 1992 and 1996, a small number of women in the UK were forced by the courts to undergo caesarean section against their expressed refusal. Analysis of the reported cases reveals the blanket assumption of maternal incompetence and the widespread use of thinly veiled coercion. Such attitudes and practices are themselves frequently compounded by inadequate communication. Medical discretion in such problematic cases seems to err on the side of safety and so appears to favour the life of the fetus over maternal autonomy. Despite current policy's placement of the pregnant woman at the centre of maternity care, obstetricians' concerns appear to lie more with the unborn fetus. In other words, there seems to be a point at which the value of fetal life begins to outweigh, not so much the life of the woman, but her right to self-determination, her plans and her choices. While it is important to acknowledge that these court ordered caesareans represent an unusual extreme within contemporary maternity care in this country, that they have happened brings into sharp relief some of the stereotypical assumptions about women. These are assumptions that underlie much of current medical practice and may compromise or disempower women in other ways during their experience of pregnancy and labour. Using the first and last of the six reported cases as contextual illustrations, this article focuses on the complex interplay of processes that have brought the medical profession to a position in which their own self-conviction and determination to do what they believe is best for their patients has resulted in gross denial of women's autonomy and the use of the law to override pregnant women's refusal of consent.

Advance Care Planning↗
PubMed1994

Patient choices, family interests, and physician obligations.

Recent articles in biomedical ethics have begun to explore both the relevance of family interests in treatment decisions and the resultant ramifications for physicians' obligations to patients. This article addresses two important questions regarding physicians' obligations vis-à-vis family interests: (1) What should a physician do when the exercise of patient autonomy threatens to negate the patient's moral obligations to other family members? (2) Does respect for patient autonomy typically require efforts on the part of physicians to keep patients' treatment decisions from being influenced by family considerations? A series of clarifications about the concept of autonomy is also presented.

Altruism↗
PubMedDate not supplied

Ethical decision making in oncology: a case study approach.

Every day healthcare professionals are involved in making difficult clinical decisions. This has become more apparent as society changes, in part due to technologic growth and diminishing resources. This article identifies basic principles of bioethics, applies those principles to situations that occur in the process of providing care to oncology patients, and identifies concerns expressed by nurses attending an oncology conference that are related to those patient situations. Bioethical principles are described and include autonomy, beneficence, nonmaleficence, and justice. A decision-making model is provided as a tool to resolve ethical dilemmas.

Adult↗
PubMed2003

Medicalization and obstetric care: an analysis of developments in Dutch midwifery.

The Dutch system of obstetric care is often recommended for midwife-attended births, the high number of home deliveries, and the low rate of intervention during pregnancy and labour. In this contribution, the question is addressed whether processes of medicalization can be demonstrated in the Dutch midwife practice. Medicalization of pregnancy and childbirth is often criticized because it creates dependency on the medical system and infringement of the autonomy of pregnant women. It is concluded that medicalization is present in the practice of Dutch independent midwives, however it is less clear and outspoken than in hospital policies.

Delivery Rooms↗
PubMed1994

Whose health is it? Views about decision-making and information-seeking from people with HIV infection and their professional carers.

The views of people with HIV and their professional carers about patients' views on involvement in decision-making and information-seeking were studied, using a standardized self-report instrument. Patients and staff reported high levels of desire for patients' involvement in their care, but there were important differences between groups. Staff had higher preference for patients' involvement in decision-making than the patients themselves, while the opposite was the case for information-seeking. There were differences between professional groups and symptomatic and asymptomatic patients, social workers generally reporting higher preference for patients' autonomy, while doctors reported lower levels. Symptomatic patients tended to have lower preference for autonomy than asymptomatic ones. The significance and practical implications of the findings are discussed.

Adult↗
PubMed1989

The myth of informed consent: in daily practice and in clinical trials.

Until about thirty years ago, the extent of disclosure about and consent-seeking for medical interventions was influenced by a beneficence model of professional behaviour. Informed consent shifted attention to a duty to respect the autonomy of patients. The new requirement arrived on the American scene in two separate contexts: for daily practice in 1957, and for clinical study in 1966. A confusing double standard has been established. 'Daily consent' is reviewed, if at all, only in retrospect. Doctors are merely exhorted to obtain informed consent; they often minimise uncertainties about 'best' treatment and they feel duty-bound to provide patients with an unequivocal recommendation for action. 'Study consent' in a clinical trial is reviewed prospectively, and doctors are compelled by regulation to point out that there is insufficient evidence to make a rational choice between two compared treatments. It has been impossible to devise informed consent practices that satisfy, in full, the competing moral imperatives of respect for autonomy, concern for beneficence with emphasis on the value of health, and a vigil for justice. A way must be found to experiment with various discretionary approaches that would strike a realistic balance among competing interests.

Beneficence↗
PubMed2003

Prenatal diagnosis for "minor" genetic abnormalities is ethical.

Is it justified to detect minor genetic aberrations before birth and terminate pregnancies based upon such information? We present the case of a woman who wanted Prenatal Diagnosis (PND) to detect whether her female fetus was a Haemophilia mutation carrier. Such carriers are usually healthy. She wished to eradicate the Haemophilia mutation from her family to avoid future generations being affected and to protect her children from having to go through PND themselves. We explore existing guidelines, public attitudes and possible objections to providing PND for minor abnormalities. We argue that in a society where couples have considerable autonomy relating to decisions about the fetus at least until viability, the routine restriction of PND for minor genetic abnormalities would be an unjust infringement of individual liberty.

Abortion, Eugenic↗
PubMed2002

Autonomy in stroke rehabilitation: the perceptions of care providers in nursing homes.

Twenty-seven health care providers from three nursing homes were interviewed about the autonomy of stroke patients in rehabilitation wards. Data were analysed using the grounded theory method for concept development recommended by Strauss and Corbin. The core category 'changing autonomy' was developed, which identifies the process of stroke patients regaining their autonomy (dimensions: self-determination, independence and self-care), and the factors affecting this process (conditions (i.e. circumstances) and strategies of patients; strategies of care providers and families; and the nursing home). Teamwork on increasing patient autonomy is recommended, which can be stimulated by multidisciplinary guidelines and education, and by co-ordination of the process of changing autonomy.

Adult↗
PubMed1991

Psychosocial correlates of physician-patient communication at time of informed consent for bone marrow transplantation.

In obtaining informed consent for bone marrow transplantation (BMT) oncologist-investigators may feel that they engender emotional distress in patients due to the disclosure of potentially lethal complications associated with BMT. However, little is known regarding the psychological profile of BMT patients at the time of informed consent or what impact the consent process has upon the physician-patient relationship. The purpose of this study was to assess (1) the psychological symptom profile of patients consenting to BMT and (2) the relationship of behavioral and psychological factors to patients' perceptions of the quality of communication between physician and patient. The results indicated that adult BMT patients experienced significant psychological distress at the time at which they provided written consent for BMT. Two factors were positively related to perceived quality of communication between physician and patient: problem-focused coping style and perceived autonomy in decision making. These findings are interpreted in relation to the goals of informed consent and its implications for the physician-patient relationship.

Adult↗