Autonomy in long term care: background issues and a programmatic response.
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Orchestrating social change: an imperative in care of the chronically ill.
The ethical challenges of caring for the chronically ill are of increasing concern to nurses as they attempt to create humanitarian environments for long-term care. This article suggests two ethical perspectives to guide the agenda of the nursing profession to achieve social change in the care of the chronically ill and aging. First, a reemphasis on the public duties of the professions is recommended which extends beyond serving the interests of the nursing profession to recognizing the need to serve the common good. Second, the limitations of the autonomy paradigm are explored and the foundation for the development of a new moral paradigm is analyzed in terms of its' potential usefulness in addressing ethical problems of chronic illness. Several initiatives that nursing must undertake to facilitate the emergence of this paradigm are proposed.
Chronic Disease↗
Informed refusal: the patient's influence on long-term treatment.
Outpatient studies in private practices revealed that psychiatric treatments often do not meet therapeutic standards. One possible explanation for this is that the autonomous patient substantially participates in therapeutic decision-making. Basic preconditions for the therapeutic decision-making are the patient's right of self-determination, the doctor's duty to inform, and a risk-benefit assessment on the part of patient and doctor. However, ethical and possibly also legal problems may result if the physician has to be responsible for a treatment decision which was influenced by the autonomous patient, but which is less effective and less safe than the treatment he recommends to the patient. Two outpatient examples will be given where doctor and patient come to different risk-benefit assessments. Emerging ethical problems will be discussed.
Altruism↗
The ethics of home care: autonomy and accommodation.
The following report offers an initial exploration of home care and its distinctive ethical problems, particularly in the area of autonomy and allocation, and specifically with regard to the frail elderly...The principal source of the report was a...research project of The Hastings Center and the Division of Legal and Ethical Issues in Health Care at Montefiore Medical Center. This project was part of a...program in which the Retirement Research Foundation supported...research projects on the autonomy of the elderly in long term care... Additional material...comes from a Hastings Center project... This earlier project involved a comparative study of home care for the elderly and community-based care of the mentally ill. It provided an initial exploration of many of the ethical issues crucial to this report....
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The advantages of occupational therapy in oral hygiene measures for institutionalised elderly adults.
OBJECTIVE: To investigate a new method in teaching and supervising tooth and denture brushing activities by employing occupational therapy techniques. MATERIALS AND METHODS: Sixty-one residents, 44 women and 17 men, with an average age of 85.7 +/- 6.6 years (range 72-97 years) living in a Long-Term Care home (LTC) in Geneva were enrolled in a randomised controlled trial. They were divided at random into experimental (EG) and control groups (CG) with matched age and sex distribution. Two subjects passed away during the 3-month experimental period. Following medical history, plaque scores and tooth brushing habits were evaluated within the context of a comprehensive clinical assessment. Furthermore, a Mini Mental State and a vision test were taken. Based on the results of these health assessments both the EG and the CG were divided into an 'assisted' (IA) and an 'independent' (II) subgroup. In the EG, tooth brushing was initially taught and in the IA monitored and re-educated once a week by an occupational therapist. In contrast, the CG-IA group received a weekly placebo activity such as manicure by the same person. RESULTS: From the individual movements taught and monitored by the occupational therapist, opening a tube of toothpaste (n.s.) and denture brushing (p < 0.05) were performed more independently after 3 months. Both the occupational therapy and the placebo activity led to a significant improvement in oral (p < 0.01 and 0.05) and in denture hygiene (p < 0.001 and 0.05). From all participants, the EG-IA subgroup presented the most significant amelioration in plaque (p < 0.01) and denture hygiene scores (p < 0.001). This group consisted mostly of subjects with an impaired cognitive state. CONCLUSIONS: Despite the marked placebo effect, the results indicate that occupational therapy is particularly useful to improve the oral and denture hygiene in dependent and cognitively impaired LTC residents and may promote their autonomy in the execution of activities of daily life such as denture brushing.
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Indicators of quality medical care for the terminally ill in nursing homes.
PURPOSE: To identify medical care indicators for nursing home terminal care. DATA SOURCES: Studies examining care of terminally ill patients were identified using computer, bibliography, and expert searches; input from nursing home medical directors in Maryland; and input from expert geriatricians. STUDY SELECTION: More than 900 articles, books, and abstracts from meetings covering medical care for terminally ill patients were reviewed. Information from more than 100 publications is included. DATA EXTRACTION: Indicators of medical care for terminally ill patients, which can be used to quantify performance with respect to standards, guidelines, and options, were identified initially through review of the literature. DATA SYNTHESIS: Indicators were refined by input from medical directors of Maryland long-term care facilities and subsequent review by expert geriatricians. CONCLUSIONS: Minimum standards for which 100% performance is expected are communication of advance directives, attention to pain control, and attention to relief of dyspnea. Performance indicators for medical care guidelines and options in terminal care of nursing home patients are also described.
Home Care Services↗
Shiftwork: what health care managers need to know.
Shiftwork is one of health care worker's oldest problems and is known to have important implications on health. Health risks are compounded with age and the amount of cumulated shiftwork. No shift system is clearly advantaged, yet the worker's ability to choose the shift system seems to maximize adaptation to shiftwork. When designing a work schedule, it is important to take into consideration the shift pattern, length of the shift, and the number of consecutive days worked. A poorly designed work schedule can impact the quality of care, the personal and professional outcomes for health care workers, patient satisfaction, length of stay, unplanned absenteeism, cost effectiveness, and productivity. Long-term studies of shiftworkers may disproportionately represent workers who have adapted to shiftwork. Self-scheduling is an interesting alternative in the quest for a more responsive work environment and is a strategy for retention among new, mid-career, and senior nurses. Planned on-site napping may be a useful tool to combat the pernicious effects of sleep debt on performance. Guidelines must be developed and initiatives implemented and evaluated to protect health care workers, especially older female shiftworkers, from the negative impact of shiftwork as they represent a precious resource in a shrinking supply.
Adaptation, Physiological↗
[Ethical dilemmas in early detection of dementia. An inventory of moral intuitions in practice].
In this article we present an inventory of the moral intuitions of the health care workers who work in the field of early detection of dementia. The effects of pharmacological treatment and professional care and support may improve when dementia is detected in an early stage. Furthermore, the patient (and his family) can prepare themselves for the period to come. Health care workers recognize moral problems and tensions concerning early detection that are related to the question whether persons will benefit from knowledge in an earlier stage of dementia, because this knowledge can be a heavy burden. We asked general practitioners, home care workers, employees of the so-called 'Memory clinic' and specialists, what ethical intuitions they recognize in practice. They mentioned the following questions: when are health care professionals allowed to take initiative, is causing worries and concerns problematic, and should a diagnosis always to be told? We conclude after a first analysis that many moral questions derive from the fact that many health care professionals lack knowledge of the wishes and interests of the elderly. At the same time they try to justify their actions on the (presupposed) consent of the elderly person. We suggest that the general norm 'only act when the patient wants to be helped' in health care should also apply to detection of dementia, although it should not be taken too strictly. Another justification for early detection can be found in the benefits for the elderly people, when their wishes are no longer expressed.
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Two years later: a prospective long-term follow-up of a training intervention in geriatric patients with a history of severe falls.
OBJECTIVE: To study the long-term outcome of a physical training regimen of ambulant postward rehabilitation in community-dwelling geriatric patients with a history of injurious falls. DESIGN: Prospective 2-year follow-up of a randomized placebo-controlled intervention trial. SETTING: Postward rehabilitation in a geriatric hospital in Germany. PARTICIPANTS: Fifty-seven geriatric patients (mean age, 84.3+/-4.4 y) with a history of severe falls. INTERVENTION: Ambulatory training of strength, functional performance, and balance 3 times a week for 3 months for 31 patients versus placebo activities for 26 patients. MAIN OUTCOME MEASURES: Strength, functional performance, fall-related psychologic parameters, and physical activity assessed by standardized protocols 2 years after the training intervention, compared with baseline results. RESULTS: Motor performance decreased substantially in both groups. As patients in the intervention group declined from significantly improved motor performance levels achieved in the initial training intervention, differences between the groups were still significant in most functional performances 2 years later. Functional decline was greater in persons who were institutionalized or being cared for by family members. Physical activity, which increased during the exercise intervention, returned to low baseline levels. CONCLUSIONS: Improved functional performance in the training group did not lead to an increased level of physical activity after training, which might have preserved the functional improvements. In mobility-restricted, frail, geriatric patients such as our study population, training programs should continue to keep patients active and to prevent the decline in strength and functional performance that precedes loss of autonomy.
Accidental Falls↗
Reinterpreting ethnic patterns among white and African American men who inject heroin: a social science of medicine approach.
BACKGROUND: Street-based heroin injectors represent an especially vulnerable population group subject to negative health outcomes and social stigma. Effective clinical treatment and public health intervention for this population requires an understanding of their cultural environment and experiences. Social science theory and methods offer tools to understand the reasons for economic and ethnic disparities that cause individual suffering and stress at the institutional level. METHODS AND FINDINGS: We used a cross-methodological approach that incorporated quantitative, clinical, and ethnographic data collected by two contemporaneous long-term San Francisco studies, one epidemiological and one ethnographic, to explore the impact of ethnicity on street-based heroin-injecting men 45 years of age or older who were self-identified as either African American or white. We triangulated our ethnographic findings by statistically examining 14 relevant epidemiological variables stratified by median age and ethnicity. We observed significant differences in social practices between self-identified African Americans and whites in our ethnographic social network sample with respect to patterns of (1) drug consumption; (2) income generation; (3) social and institutional relationships; and (4) personal health and hygiene. African Americans and whites tended to experience different structural relationships to their shared condition of addiction and poverty. Specifically, this generation of San Francisco injectors grew up as the children of poor rural to urban immigrants in an era (the late 1960s through 1970s) when industrial jobs disappeared and heroin became fashionable. This was also when violent segregated inner city youth gangs proliferated and the federal government initiated its "War on Drugs." African Americans had earlier and more negative contact with law enforcement but maintained long-term ties with their extended families. Most of the whites were expelled from their families when they began engaging in drug-related crime. These historical-structural conditions generated distinct presentations of self. Whites styled themselves as outcasts, defeated by addiction. They professed to be injecting heroin to stave off "dopesickness" rather than to seek pleasure. African Americans, in contrast, cast their physical addiction as an oppositional pursuit of autonomy and pleasure. They considered themselves to be professional outlaws and rejected any appearance of abjection. Many, but not all, of these ethnographic findings were corroborated by our epidemiological data, highlighting the variability of behaviors within ethnic categories. CONCLUSIONS: Bringing quantitative and qualitative methodologies and perspectives into a collaborative dialog among cross-disciplinary researchers highlights the fact that clinical practice must go beyond simple racial or cultural categories. A clinical social science approach provides insights into how sociocultural processes are mediated by historically rooted and institutionally enforced power relations. Recognizing the logical underpinnings of ethnically specific behavioral patterns of street-based injectors is the foundation for cultural competence and for successful clinical relationships. It reduces the risk of suboptimal medical care for an exceptionally vulnerable and challenging patient population. Social science approaches can also help explain larger-scale patterns of health disparities; inform new approaches to structural and institutional-level public health initiatives; and enable clinicians to take more leadership in changing public policies that have negative health consequences.
Abscess↗