Abstracts 23 ( 1 )
SPECIAL ISSUE: “Ethics, Health Care & Anthropology”
Theme articles / Thema-artikelen
Conflicting values
LIANNE HOLTEN & ANNEMIEK RICHTERS
A maternity clinic in Mali. Bioethics and moral experiences in a zone of awkward engagement
The article explores how claims about the universal applicability of biomedicine work out in the particular context of a private health care project in a non-western setting. The empirical data are derived from an ethnographic study in and around a maternity clinic that was set up on request of a village population in southwest Mali. From a Dutch midwifery perspective this clinic can be perceived as a zone of awkward engagement for the imagined universality of biomedicine within the local health and gender arena. Biomedically trained midwives working in the clinic perceived the dissemination of information on pregnancy and birth as potentially dangerous and equated ‘modern’ healthcare with dispensing drugs. The midwives were not autonomous and experienced logistic and existential challenges when referring patients with obstetric complications to a higher echelon of care. Gender relations and a moral discourse of shame inhibited pregnant women’s access to healthcare facilities; local perceptions of the power of words impacted the quality of care. Biomedicine was made to fit the local context with its specific moralities. However, the new practice raises the question whether it is ethically justified. Small-scale private healthcare initiatives may do more harm than good in circumstances of extreme poverty, gender inequality and poor infrastructure, and should therefore be implemented with caution.
[maternal and child health, midwifery, globalisation, medical anthropology, ethics, morality, Mali]
ELLEN KRISTVIK
For whom and for what? Exploring the question of ‘informed consent’ in treatment decision making processes
Whose interests are preserved by a practice of informed consent? While the declared intention behind the introduction of this principle is clear enough, the question about how it actually works in specific, real-life situations can only be answered empirically. In this paper I draw on material from a research project on decision making processes regarding medical treatment for incurable cancer patients. The fieldwork for this has included observations of actual clinical consultations in a Norwegian hospital. On the basis of these I will explore the question of informed consent within two kinds of clinical encounters which regularly take place at two different stages in a diagnostication process. Each of these kinds of consultations followed their own set pattern, with striking contrasts regarding patients’ involvement and consent. This disparity can hardly be explained by a difference in the gravity of the implications for the patients involved, and begs questions about the practice of informed consent in current clinical situations.
[end of life, doctor-patient communication, risk, uncertainty, responsibility, cultural scripts, Norway]
NORA ENGEL
Local adaptation versus standardization? Treatment delivery for multi-drug resistant Tuberculosis in India
Treatment of Tuberculosis (TB) and multi-drug resistant Tuberculosis (MDR-TB) is a public good, due to the risk of transmission of infectious strains and the potential amplification of drug-resistance. The provision of this public good by government programmes has to bear a tension between standardized guidelines within programmatic constraints and local adaptation responding to needs for individual care. This tension is central to Tuberculosis control and is rendered more urgent for the prolonged and complicated MDR-TB treatment. This paper focuses on the first treatment sites for MDR-TB of the public TB programme in India. My fieldwork shows that actors here struggle with the interplay between local adaptation and standardization in service delivery. The literature casts this relationship often in terms of ideological opposites and thus actors would have to make normative choices for one over the other. My results show that there is indeed a risk of being caught in dilemma-thinking, namely that local adaptation goes at the expense of control through standardization and vice versa. Yet, the dilemma-thinking prevents a content-related discussion on the different forms of local adaptation and standardization which actors engage in. Their practices and understandings demonstrate that the relation between local adaptation and standardization can be better characterized in terms of effectiveness; with the actors defining effectiveness differently. To avoid seemingly opposite ethical stands, favouring standardization or local adaptation, it is helpful to analyse different practices engaged with standardization and local adaptation, and to understand how actors relate to them.
[standardization, local adaptation, MDR-TB, treatment delivery, ethical dilemma, India]
ANNEMIEK STOOPENDAAL
Different kinds of gaps: Combined values and partial connections in fall prevention in long-term health care
When observing the improvement of fall prevention in long-term care institutions, various types of ‘gaps’ will be encountered. Fall prevention is aimed at simultaneously diminishing risk and increasing freedom, two values that can contradict one another and thus require ‘groping for good care.’ This paper discusses care organizations that encounter a diversity of gaps while working on the improvement of the quality of care. The improvement takes place in the process of a national quality improvement collaborative. When using ethnographic research methods to evaluate the quality improvement collaborative and the participating care organizations, it became evident that, while managers worked hard to build a better place for their clients, professionals were confronted with a new reality – a considerable number of concrete gaps and holes – that increased rather than decreased the risks of falling incidents. Investigating the activities of the improvement team in an organization of care for mentally disabled people, a familiar issue gained prominence: the management professional gap. Marilyn Strathern’s work on partial connections was used to reframe this symbolic gap from dichotomy into complexity. Analyzing the empirical findings from the perspective of partial connections, it could be demonstrated how health care professionals and managers are complexly connected and how they both cope with the same contradictory values in providing ‘good care’. Consequently, this study shows that the use of a non-dualistic perspective can lead us beyond the management professional gap.
[quality improvement, long-term care, empirical ethics, management-professional gap, partial connections, good care, fall prevention, the Netherlands]
Care and care organization
LIEKE OLDENHOF & KIM PUTTERS
Daily practices of operational healthcare managers: Dealing with tensions between different values
This article gives an empirical analysis of normative questions that come up in the daily practices of operational healthcare managers in the Netherlands. Since the recent introduction of client based financing in the care sector, managers are expected to provide more client-centered and affordable care. In practice, managers experience ambiguity and tensions in the operationalization of these different values. By looking into local management practices, light is shed on the way managers actually deal with these tensions. On the basis of qualitative interviews with healthcare managers, four modes of dealing with tensions between different values are established: balancing values individually and collectively, prioritizing one value over the other, establishing compromises between values and making healthcare workers responsible for balancing different values. Our findings show that managers increasingly feel pressure to more tightly manage their financial budget on location level. As a consequence, managers try to find solutions to keep care affordable, which they often feel ambivalent about. Nevertheless, managers also create flexibility in the new financing system by accomplishing compromises between values and reframing responsibilities for care. The authors conclude that it is necessary to raise more awareness for the specific moral problems that operational healthcare managers experience when managing tensions between values.
[operational healthcare managers, tensions between values, empirical ethics, client-based financing, care sector, the Netherlands]
CAROLIEN PRONK
Ethical care for teenage mothers and the importance of spirituality
This paper explores the ethical meaning of care and how this functions in the specific context of teenage motherhood in Dutch society. Both empirical data gathered at a Dutch care centre, and relevant literature were used for this article. After a short review of the statistics, the problems of teenage mothers are discussed to understand the difficulties and needs they face. Using Tronto’s view of care, it is possible to extract some advice about ethically sound care for teenage mothers. Tronto explains that ethical care aims to maintain, continue and repair the world of the care receiver. This can be achieved by fulfilling the needs of teenage mothers. Of their many needs, research has shown that their most significant needs include a sense of direction in life, as well as the capacity to control personal boundaries. Tronto refers to the importance of paying attention to the spiritual needs of teenage mothers in the caregiving process. She argues that the aim of care involves forming a coherent view of the past, present and future, as well as an understanding of the place and purpose of one’s own being in the world. Applying Tronto’s view on care to the (often conflicting) needs of teenage mothers, I emphasise integration of their needs into a coherent view of themselves and the world around them. This allows their condition to become more acceptable and bearable for them. Feeling at peace in the world can help teenage mothers to cope with the tasks that they have. From my empirical data and the literature on care ethics, the need for spirituality as an important factor in the care for teenage mothers is apparent.
[ethics of care, teenage mothers, spirituality, The Netherlands]
SHARON R. KAUFMAN & LAKSHMI FJORD
Making longevity in an aging society: Linking technology, policy and ethics
An explosion in the varieties of life-extending medical interventions for older persons is changing medical knowledge and societal expectations about longevity and the time for death. Longevity making today is framed by a new ethical rationality, constituted by and enabled through the routines and institutions that comprise ordinary clinical care. To be distinguished from bioethics, with its emphasis on clinical decision-making in individual situations, this new rationality is ‘located’ in and shaped by the value given to clinical evidence and the ‘technological imperative’ which, in turn, organize health care coverage policies and the shaping of standards. The new ethical rationality organizes what patients and families come to need and want. Three developments illustrate this new form of ethics at work: the changing nature of disease, especially the ascent of risk awareness and risk-based strategies for life extension; the role of technology in reshaping the ‘ends’ of medicine; and the role of U.S. Medicare policy in creating need and ethical necessity. Medicare’s expanding criteria for payment coverage of liver transplantation and implantable cardiac devices are the examples illustrating the pervasive logic of this new form of ethics.
[ethics, U.S. health care, technologies of life extension, ageing society, health policy]
Research
SJAAK VAN DER GEEST
Ethnocentric ethics in anthropological research
The paper discusses the application of ethnocentric ethical rules in anthropological research. The ethnocentrism lies in the fact that North American and European definitions of right and wrong are imposed on anthropological research everywhere in the world. Apparently – and ironically – some anthropological committees seem to assume that western values are universally valid. The paper draws mainly on experiences of the author and of PhD researchers supervised by him.
[ethics, ethnocentrism, anthropology, research, informed consent, pseudonym, Ghana]
SHAHADUZ ZAMAN & PAPREEN NAHAR
Searching for a lost cow. Ethical dilemmas of doing medical anthropological research in Bangladesh
In this paper we present our dilemmas regarding ethical issues in doing medical anthropological research in Bangladesh. Our previous works include hospital ethnography, life histories of childless women, sexual and reproductive health issues, and community health interventions. We argue that following the Euro-American framework for research with human subjects may be completely out of place in a context where respondents are extremely poor and have no institutional education, and where relationships between people are generally very hierarchical. We found it difficult to make the villagers understand what ‘research’ is, as there is no equivalent term for it in rural Bangladesh. The formal Bengali word derived from the Sanskrit language has a meaning connected with ‘finding a lost cow’. By presenting several scenarios from our research experience we show how the Euro-American ethical codes for informed consent, confidentiality, respondent protection, deception and compensation may appear absurd in Bangladeshi villages. With this paper we would like to contribute to the debate on the universality of research ethics. We argue that acting ethically while responding culturally is a complex job. It is time that we think of indigenising bioethics.
[ethics, research, medical anthropology, informed consent, confidentiality, Bangladesh]
PRISCA ZWANIKKEN & PAULINE OOSTERHOFF
Why a research ethics committee for social science? Reflections on three years of experience at the Royal Tropical Institute, Amsterdam
The open-ended nature of anthropological research processes and methods such as participatory observation can be at odds with the demands of ethical review boards, which often require a fully worked-out proposal. However, clearance by an ethical review board is increasingly a requirement for all social scientists. Proponents argue that clearance is a logical necessity for compliance with international human rights standards and increased requests from national authorities. Critics argue that these boards are preventing original research because they require fully worked-out studies, which may lead to duplication in the field or run the risk of rigidly following a pre-defined protocol in the field. This article examines the Royal Tropical Institute’s (KIT), Amsterdam, experiences of establishing and using a Research Ethics Committee. A review of KIT’s Research Ethics Committee showed that almost half of the 21 studies presented needed to be adjusted based on the committee’s review. This study employed participant observation, review of policy documents, interviews and questionnaires.
[ethical review boards, research, methods, social sciences, The Netherlands]
Non-theme article
ATHENA MCLEAN (with Annette Leibing)
Ethnography and self-exploration
This article offers a review of the history of the somewhat contested relationship of autobiography and ethnography in anthropology and medical anthropology. The paper begins with Athena McLean’s reflections on an event at a conference that sparked negative responses to apparent confessionalism by an anthropologist. In the second section of the article, McLean together with Annette Leibing describe other moments of tension in the use of autoethnography in anthropology’s past. In the final section, they consider three ways in which ethnography and autobiography may be related in anthropology and medical anthropology today: (1) through exploring the influence of personal life on ethnographic research; (2) through exploring the influence of anthropology and ethnographic research on personal life; and (3) through the use of ethnography as self-exploration. While self-exploration may be an undercurrent of all three approaches, it is the explicit focus of the third. This review is also intended to be a ‘teaser’ for the forthcoming symposium “Ethnography and Self-exploration” December 2011.
[ethnography, autobiography, autoethnography, anthropological research, self-exploration, medical anthropology]