Gelya Frank

Ethnicity and attitudes towards life sustaining technology

The ethical and legal implications of decisions to withhold and withdraw life support have been widely debated. Making end-of-life decisions is never easy, and when the cultural background of doctor and patient differ, communication about these issues may become even more difficult. In this study, we examined the attitudes of people aged 65 and older from different ethnic groups toward foregoing life support. To this end, we conducted a survey of 200 respondents from each of four ethnic groups: European-American, African-American, Korean-American and Mexican-American (800 total), followed by in-depth ethnographic interviews with 80 respondents. European-Americans were the least likely to both accept and want life-support (p < 0.001). Mexican-Americans were generally more positive about the use of life-support and were more likely to personally want such treatments (p < 0.001). Ethnographic interviews revealed that this was due to their belief that life-support would not be suggested if a case was truly hopeless. Compared to European-Americans, Korean-Americans were very positive regarding life-support (RR = 6.7, p < 0.0001); however, they did not want such technology personally (RR = 1.2, p = 0.45). Ethnographic interviews revealed that the decision of life support would be made by their family. Compared to European-Americans, African-Americans felt that it was generally acceptable to withhold or withdraw life-support (RR = 1.6, p = 0.06), but were the most likely to want to be kept alive on life-support (RR = 2.1, p = 0.002). Ethnographic interviews documented a deep distrust towards the health care system and a fear that health care was based on ones ability to pay. We concluded that (a) ethnicity is strongly related to attitudes toward and personal wishes for the use of life support in the event of coma or terminal illness, and (b) this relationship was complex and in some cases, contradictory.

Ethnicity and advance care directives.

dvance care directives for health care have been promoted as a way to improve end-of-life decision A making. These documents allow a patient to state, in advance of incapacity, the types of medical treatments they would like to receive (a living will), to name a surrogate to make those decisions (a durable power of attorney for health care), or to do both. Although studies have shown that both physicians and patients generally have positive attitudes about the use of these documents,’ relatively few individuals have actually completed one? What underlies this discrepancy between amtudes and behavior with regard to advance care directives? One obvious explanation is tack of acccss. Emanuel et al. estimated that approximately 90 percent of the population desire an advance care directive;’ and they pointed to access as the major barrier. Yet interventions that increase accessibility have typically failed to yield more than a 20 percent completion rate.’ Thus, it appears that access is not the sole determinant of advance care directive completion. r\ second and related factor oftcn cited to account for the relatively low completion rate is knowledge. It has been argued that if individuals simply had sufficient information &out advance directives, they would complete one. The bulk of existing research, however, does not support this proposition. Far instance, in a random study of 302 patients, Jacobson et al. found that although 90 percent of them knew about living wills, only 20 percent had actually completed one? Moreover, in a study by Sachs, Stocking, and Mils: fifty-two patients were specifically given both information on advance care directives and copies of forms for living wills and durable powers of attorney for health

Bioethics in a Different Tongue: The Case of Truth-Telling

After a survey of 800 seniors from four different ethnic groups showed that Korean-American and Mexican-American subjects were much less likely than their European-American and African-American counterparts to believe that a patient should be told the truth about the diagnosis and prognosis of a terminal illness, we undertook an ethnographic study to look more deeply at attitudes and experiences of these respondents. European-American and African-American respondents were more likely to view truth-telling as empowering, enabling the patient to make choices, while the Korean-American and Mexican-American respondents were more likely to see the truth-telling as cruel, and even harmful, to the patients. Further differences were noted in how the truth should be told and even in definitions of what constitutes “truth” and “telling”. Clinical and bioethics professionals should be aware of how their cultural and economic backgrounds influence the way they perceive ethical dilemmas and remember to make room for the diverse views of the populations they serve.

On embodiment: a case study of congenital limb deficiency in American culture.

The relationship of mind and body is an issue of importance for Western medicine and psychiatry. An area to which this problem particularly applies is that of physical disability. In evaluating treatment of persons with physical disabilities, the concept of “adjustment” in social psychology may not deal sufficiently with ambiguities arising in varied cultural settings. The related concept of “ stigma” in sociology is also limited, covering the cosmetic aspect of the mind-body relationship only. This paper applies the more abstract and inclusive concept of “embodiment” from the phenomenological movement in philosophy to the life history of a 35-year-old American woman born with quadrilateral limb deficiencies. The resulting description of her functioning and self-image over time calls into question the cultural assumptions of rehabilitation medicine and highlights the more general cultural demands upon persons with severe physical disabilities in the United States since the 1950s.

Life history model of adaptation to disability: The case of a 'congenital amputee'

Life histories can be used to describe adaptation over time to disabling conditions and the context and meaning of disabilities. Data from the life history of Diane DeVries, a 33-year old woman born with quadralateral limb deficiencies (upper extremity hemimelia, lower extremity amelia) illustrate a model for eliciting, presenting and interpreting life histories of persons with disabilities. Substantively, the life history of Diane DeVries indicates, at this time, survival within a niche of institutional supports that include marriage, church membership, and government for the disabled. Her life history is also characterized by choices that support independent living in the community and a cognitive orientation toward her own cultural normality.

Is There Life after Categories? Reflexivity in Qualitative Research

This article encourages occupational therapists conducting qualitative research to use disciplined self-reflection to enrich their studies. Subjective reactions infield situations should not be eliminated or ignored, but examined systematically, leading to new insights and deeper understandings.

Qualitative Research in Occupational Therapy: From the First to the Second Generation:

Qualitative research in occupational therapy has been flourishing for approximately three decades. Qualitative researchers in the profession are asked to take an informed, critical view of the literature to move it from the first to the second generation. The authors present a history of the three main qualitative traditions (ethnography, phenomenology, and grounded theory), focusing on key issues related to naturalism and interpretation, especially since philosophys mid-20th century “linguistic turn.” They offer guidelines for the second generation, including more engagement with social theory, more sophisticated approaches to language, deeper immersion in contexts, more attention to observation, and greater participation in scholarly debates in and out of the profession.

The 2010 Ruth Zemke Lecture in Occupational Science Occupational Therapy/Occupational Science/Occupational Justice: Moral Commitments and Global Assemblages

Twenty years have passed since occupational science was founded. It is time to reassess the relationship of occupational science to its roots in occupational therapy and also to reopen a discussion of some foundational assumptions. In particular, we need to situate the profession, occupational therapy, and the discipline, occupational science, in relation to the phenomenon of globalization. The internationalization of the post-World War II era, followed by the neoliberalism of the 1980s, began an erosion of state sovereignty that has empowered new formations in the global marketplace. New spaces exist for political action by non-state players, especially those concerned with human rights. Globalization did not set the stage for the founding of occupational science, but we can no longer look at the discipline outside the context of globalization. Globalization set the context for the transnational advocacy networks now operating that link occupational therapy with occupational science in service of a shared moral philosophy of social hope.

Artisan occupations in the global economy: A conceptual framework

Abstract Craft production occurs in all sectors of the global economy. This paper provides a context for the study of the occupations of producing and selling crafts. Embedded in the worlds political economy, crafts are a vehicle for individuals and societies to adapt to changing systems of production, a means for economic and cultural expression, and a voice of resistance against domination and oppression. Through crafts, tradition is maintained and/or invented, and marketed to consumers who find other meanings in the objects. Study of the mode of craft production offers insight into new occupational strategies to respond to de‐industrialization, using pre‐industrial forms. Romanticized by the Arts and Crafts Movement, the qualities of craft work took on therapeutic as well as economic significance in European and American society. Today, throughout the world, the marketing of crafts has economic and social significance. Study of work in crafts illustrates the contested nature of occupations and adds to...

The Transactional Relationship between Occupation and Place: Indigenous Cultures in the American Southwest

The transactional metaphysics of philosopher John Dewey (1859–1952) is applied in this article to the study of cultures and occupations among the Pueblo, Navajo, and Ohlone peoples. The data on these peoples’ occupations come from presentations by New Mexico-based scholars Dr Theodore S. (Ted) Jojola, Dr Kathleen Whitaker, and Dr Les W. Field, at the 6th Annual Research Conference of the Society for the Study of Occupation (SSO:USA) in Albuquerque, New Mexico, in 2007. This article makes use of Deweys concept of ‘situation’ to emphasize responses to problems that break into the continuous, emergent nature of human experience in specific regions or locales over time. The author proposes viewing occupations as the sites within Deweyan situations where cultures undergo transformation through the actual doing of things. Further, this article takes a transdisciplinary perspective, drawing on resources in occupational science, geography, anthropology, and postcolonialist perspectives to explore the relevance of Deweyan concepts to occupational science as an emerging and evolving discipline.