Bioethics for clinicians: 18. Aboriginal cultures.

Although philosophies and practices analogous to bioethics exist in Aboriginal cultures, the terms and categorical distinctions of "ethics" and "bioethics" do not generally exist. In this article we address ethical values appropriate to Aboriginal patients, rather than a preconceived "Aboriginal bioethic." Aboriginal beliefs are rooted in the context of oral history and culture. For Aboriginal people, decision-making is best understood as a process and not as the correct interpretation of a unified code. Aboriginal cultures differ from religious and cultural groups that draw on Scripture and textual foundations for their ethical beliefs and practices. Aboriginal ethical values generally emphasize holism, pluralism, autonomy, community- or family-based decision-making, and the maintenance of quality of life rather than the exclusive pursuit of a cure. Most Aboriginal belief systems also emphasize achieving balance and wellness within the domains of human life (mental, physical, emotional and spiritual). Although these bioethical tenets are important to understand and apply, examining specific applications in detail is not as useful as developing a more generalized understanding of how to approach ethical decision-making with Aboriginal people. Aboriginal ethical decisions are often situational and highly dependent on the values of the individual within the context of his or her family and community.

Ethical issues in community health research: implications for First Nations and circumpolar indigenous peoples.

Current changes in research relationships include a re-examination of the ethical contracts made between researchers, individuals, and Aboriginal communities. New guidelines for research have been written by First Nations and circumpolar indigenous peoples' organizations. This paper discusses these guidelines, using case examples to illustrate the ethical, methodological, and political problems in the conduct of community-based health research.

Experience of aboriginal health interpreters in mediation of conflicting values in end-of-life decision making.

This paper examines the experience of Aboriginal medical interpreters working with terminally ill patients, family members, and care providers, and serving as mediators when cultural values and decision frameworks are in conflict. The discussion is based on a qualitative analysis of interaction in 12 patient encounters which were observed and for which transcripts were made of the discourse and interaction. Each case involved intervention by a professional interpreter. Interaction involved the signing of advance directives or other consent agreements in situations in which Aboriginal patients were terminally ill. Analysis will focus on the cultural dimension of value conflict situations, particularly in relation to issues of individual autonomy and biomedical emphasis on truth-telling in the communication of terminal prognosis.

Rehabilitation ideology and respiratory support technology.

This paper examines the impact changing ventilation technology and the ideologies of rehabilitation medicine on the long term adaptations of people with post-polio respiratory disability. Multiple in-depth interviews with 10 respirator-dependent people indicates that cultural ideologies learned during rehabilitation continue to effect the adoption of technology and daily management of respiratory insufficiency. Adaptive strategies through which benefits of technology are maximized and the social costs minimized, have transformed rehabilitation ideologies and moderated the late, aging-related effects of poliomyelitis.

Excessive burden of end-state renal disease among Canadian Indians: a national survey.

Analysis of data from the Canadian National Renal Failure Register indicates that Canadian Natives are at much higher risk for end-stage renal disease (ESRD) than the Canadian population in general. Using two population estimates for the total Native population, the age-standardized incidence rate of newly registered ESRD cases between 1981 and 1986 among Natives was at least 2.5 times (and may be as high as four times) the national rate. Natives were particularly at higher risk for ESRD to diabetes, glomerulonephritis, and pyelonephritis, whereas for the other causes the risk was no different from that of other Canadians. As technologically sophisticated treatment facilities are only available in major urban centers, Native ESRD patients and their families living in remote areas of Canada are faced with major psychosocial disruptions of relocation.

Health beliefs as predictors of success of alternate modalities of smoking cessation: results of a controlled trial.

The primary objective of this study was to determine whether health beliefs influenced the outcome of the three alternate modalities of reducing cigarette consumption. The study randomized volunteers either to a control group or to one of three cessation programs, using behavior modification, health education, or hypnosis. A questionnaire was used to document health beliefs, demographic characteristics, and smoking history. Blood samples were taken before and after the completion of intervention programs to measure changes in serum thiocyanate. A follow-up questionnaire was used to assess smoking behavior after 6 months. Statistically significant decreases in serum thiocyanate levels followed participation in each of the three programs. Factor analysis and reliability tests were used to identify four scales reflecting major variable dimensions in the health belief model. Significant correlations between change in serum thiocyanate and two of the scales (general health concern and perceived vulnerability) were found only for the group randomly assigned to the health education intervention program.

Respiratory poliomyelitis: a follow-up study.

Data from the medical records of 113 patients living in Manitoba who had contracted respiratory poliomyelitis between 1952 and 1959 were compared with information obtained from interviews with these patients in 1980. The study was designed to determine whether the patients' respiratory function, mobility, ability to perform daily tasks, and employment, residential and marital status had changed between 1 year after the onset of polio and 1980. The patients' dependence on mechanical aids and other people was also studied. More than half (56%) of the patients perceived their respiratory impairment to be the same as it was 1 year after the onset of polio, 27% perceived the impairment to be increased, and 17% perceived it to be decreased. There was an association between level of respiratory function, mobility and ability to perform daily tasks. The 69 patients who lived at home had better respiratory function, mobility and ability to perform daily tasks than the 24 patients who were assisted by a home care program and the 20 who lived in hospital. The latter group had the lowest levels of respiratory and functional ability.

Role conflict among 'culture brokers': the experience of native Canadian medical interpreters.

This paper examines the role conflicts among Cree and Saulteau language-speaking interpreters working in two urban hospitals providing tertiary medical care services to Native Canadians from remote northern communities. Over an 18 month period, participant-observation and analysis of videotaped clinical consultations were utilized to develop an inventory of roles and situational contexts characterizing the work of Native interpreters in urban hospitals. Sources of role conflict were found to be associated with cross-pressures in their roles as language interpreters, culture-brokers and patient advocates.

Methodological and conceptual issues in measuring the long term impact of disability: the experience of poliomyelitis patients in Manitoba.

This paper is based on a Canadian study which is examining the long term impact of disability among people who developed respiratory or non-respiratory polio during the epidemics of the 1950s and who were admitted to the same Manitoba hospital, the centralized treatment centre for the Province. This research is exploring change in the lives of these individuals by focusing on three conceptually distinct, although empirically overlapping areas or dimensions. The first is called the 'trajectory of disability' and refers to changes in functional status. The second includes those changes which are the product of the interaction between the normal processes of aging and the long term impact of poliomyelitis. The third is changes in the context of disability. This refers not only to changes in medical and technological knowledge, but sociopolitical developments including the emergence of a Disabled Rights Consumer Movement. This paper discusses the methodological and conceptual issues involved in the study, particularly its combination of different methods of data collection and the value of its historical-prospective design for capturing the effects of change over time in each of these different dimensions.

Functional ability indices: measurement problems in assessing their validity.

This study examines measurement problems which must be considered in assessing the validity of alternative measures of functional ability. Threats to meaningful evaluation of validity include problems of: (1) assessing the impact of aids, adaptations and helpers; (2) controlling for situational variation and motivational factors; (3) controlling for the professional perspective of the rater; and (4) controlling for the role expectations of the patient in the performance of certain functions. These problems were investigated using validity comparisons from the St. Thomas' Hospital elderly study in which questionnaire-based assessments of functional status were compared with assessments of physicians and visiting geriatric nurses. Clinician and questionnaire-based measurements were compared for 92 elderly (age 75 years and older) primary-care patients in terms of performance of 13 mobility and self-help functions. Trichotomous measures of performance controlled more adequately for the compensating effect of aids, adaptations, and helpers, and rater/questionnaire agreement was highest for more basic mobility and self-help functions. Test-retest reliability comparisons indicated that motivational factors and situational variation were minimized by reassessing the subjects in their own homes using members of their primary-care team. Levels of concordance between questionnaire ratings and clinical ratings show systematic variation indicating differences in the clinical perspectives of physicians and visiting nurses. Finally, variations in the reported and clinically-evaluated performance of male and female subjects appear to reflect the culturally determined role expectations of men and women as they relate to self-care.

Medical dominance in Canada in historical perspective: the rise and fall of medicine?

Freidson's concept of medical dominance is compared to the alternative conceptions of neo-Marxist writers. Dominance is then examined in historical perspective, using medicine in Canada (mainly Ontario) as a case study. Medicine emerged as the dominant health occupation in Canada in the late 19th and early 20th centuries, consolidating its power between World War I and the Saskatchewan doctors' strike of 1962. The authors argue that medical dominance has declined since that time due to such factors as the involvement of the state in health insurance, the rise of other health occupations, increasing public or at least elite skepticism, and possible internal fragmentation. The underlying social explanation for this historical process is sought in changes in the Canadian class structure, specifically the spread of the capitalist mode of production, the decline of the petite bourgeoisie, and the rise of the state. It is suggested that Freidson's specific accounts of the history of medicine must be incorporated for explanatory purposes within the broader neo-Marxist view of medicine as an intermediary rather than an ultimately determining institution.

Teaching community medicine to undergraduates: the role of student projects.

The community medicine primary care clerkship at the University of Manitoba integrates didactic elements, clinical placements and student projects in teaching community medicine. The clinical clerkship is undertaken in a variety of community settings and emphasizes ambulatory care. The rotation for each student is eight weeks, six of which are spent in the clinical clerkship, bracketed by two weeks of community medicine. Student research projects allow medical students to become familiar with the principles of population-based and community-oriented medicine as applied in clinical practice. Evaluation of 156 projects completed during the first two years of the program indicates that a wide range of community-based health problems were identified and a variety of methodological approaches applied.

Social and psychological responses to home treatment of haemophilia.

A pilot home treatment programme was set up in 1975 by the Department of Haematology and Community Medicine, St. Thomas's Hospital, London, and the Haemophilia Centre, Churchill Hospital, Oxford. The purpose of the study was to assess the clinical, social, and economic effects of enabling haemophiliacs to treat themselves at home. The clinical and economic aspects of the project have been discussed by Ingram et al. In this paper the immediate social and psychological impact of the home treatment programme is described.