a Research Proposal
- Luis Justo MD and Jorgelina Villarreal, Anthropologist
Cátedra de Bioética, Escuela de Medicina,
Universidad Nacional del Comahue,
Catamarca 140, (8324) Cipolletti, Rio Negro
Eubios Journal of Asian and International Bioethics 13 (2003), 53-57.
In the World Health Report 2000 WHO introduces ethical issues in the evaluation of health systems responsiveness performance. Although we consider this as a positive step, the parameters considered in the Report are in some cases unsustained by extensive research. This is the case of autonomy, which is postulated as a "universal expectation". As we think that this is culture-linked issue we argue that such kind of universal categorizations lacks substantive empirical evidence. We undertook a short review of a small intentional sample of international literature (1), in order to demonstrate that regardless of the philosophical status of autonomy as a principle or category there is not background enough to postulate it as a universal expectation. We propose international collaborative research to define the issue, using qualitative research methodology.
Key words: WHO; autonomy; expectations; bioethics; qualitative research.
Responsiveness and autonomy: a study proposal
In the World Health Report 2000 WHO makes the case for autonomy expectations as "universal", even acknowledging for cultural differences. In this paper we argue that, leaving aside any argument about the universal validity of autonomy as construed by "western" bioethics, the affirmation that autonomy is a universal expectation remains to be empirically demonstrated, as expectations belong to real living persons and not to philosophical principles. To evaluate the issue we conducted a small survey of literature concerning autonomy which shows a wide span of different approaches to the theme. On the whole, as we thought, there is no way to conclude that expectations of autonomy or autonomy-related issues are universal. We propose thereafter a collaborative international study to determine "real people" expectations, as a way to understand more deeply the autonomy issue. Unless such a kind of studies are done we consider that the incorporation of autonomy expectations as a parameter when comparing national health systems seems at the moment unwarranted.
Ethical aspects of health systems performance are introduced by WHO (2) in the World Health Report 2000 through the responsiveness concept. This is a groundbreaking innovation that should convey an important message for health administrators and for all the health-related world, and we endorse it with enthusiasm.
In a fundamental paper Amala de Silva (3) defines the framework for the understanding of the central responsiveness idea: "Responsiveness in the context of a system can be defined as the outcome that can be achieved when institutions and institutional relationships are designed in such a way that they are cognizant and respond appropriately to the universally legitimate expectations of individuals"
In the paper de Silva considers autonomy, one of responsiveness components, as a universally legitimate expectation. We'll try to show that this cautionary note is valid, and we propose the need to undertake a qualitative research international collaborative program to characterize the issue and proceed with further quantitative research.
The autonomy debate
De Silva states that "ethical norms can be set in most instances without much debate as to the optimal desired behavioral process. While resource constraints may hamper the achievement of such outcomes, there is likely to be no debate as to the appropriateness of such norms"(4) While we are not trying to go into the discussion about the philosophical validity of autonomy as a universal principle, we must remember that responsiveness is not referred to philosophical principles but to people's normative expectations. And expectations, even normative ones, belong to concrete existing persons so, if "universal expectations" are hypothesized, its validity should be demonstrated empirically.
We performed a summary search of literature on autonomy, intended only to satisfy any reader interested on discerning the question of autonomy's universality as an expectation. We didn't intend to make a full bibliographic review, and the opinions and citations are intentionally extracted from a very large and fast growing literature.
The "Western" perspective
The debate concerning autonomy exists, and is largely a cultural one (5-9), but it doesn't address the issue on terms of expectations. In highly individualistic cultures that postulate rational choice as the main instrument in patient decision-making(10) autonomy may be expected as an essential part of the model, although it may have been overemphasized. The degree of expected autonomy may be different between patients, and between different times in the same patient. Lynn J et al (11) state that "In short, in a state of illness characterized by uncertainty and vulnerability, many dying patients may not want aggressive promotion of autonomy... normative decision-making models in general, assume that patients can articulate preferences and make choices congruent with them... Unfortunately, the preferences of patients confronting end-of-life care often evolve or are constructed during the situation rather than accessed from a stable set of settled priorities".
Even the most perfectly written advance directive may be put into a doubtful view as "sick patients may be perplexed, distressed, or overwhelmed by the decision-making process, and they may trust their physician's judgment more than their own" as Puchalski et al. (12) postulate, adding that "stating a preference is not equivalent to making an autonomous choice".
Shared decision-making models postulate a careful search to determine the patient needs, expectations and desires, and a negotiating process between physician and patient afterwards. It requires defined competences from doctor and patient (13) and, as Coulter remarks "Self help and informed choice is to be encouraged in the hope that it will keep costs down and ensure that demands for health care are channeled appropriately (14)" So the model conveniently combines human rights respect with market cost containment concerns, an infrequent but becoming merger. Nevertheless some caution should be taken when identifying information provision with the sharing decision model since "when (registrars( were asked to compare these techniques against their 'usual' practice most registrars stated that they normally bias their presentation of facts and consciously "steer" patients - "you choose the data to help the patient make the decision you think they ought to make. I'm sure I do that." (15) Sharing may be on the rise but paternalism delves on the deepest levels of the medical model. The strength of the hippocratic tradition should not be minimized, as it is presente even in the "Solemn oath of a Physician in Russia", published in the June 1992 issue of the Meditsinskaya Gazeta (16).
We could synthesize the search results by saying that most "Western" world literature coincides in the mention of autonomy, either as an expectation or as a basic condition for patient-physician relationship, even if sometimes with a cautious note about its evaluation.
Following this line of thought: what happens within other cultural reference frames? In those frames: is the autonomy paradigm as adequate as in the Western developed world? Has this supposed autonomy expectation been demonstrated in Latin America, Asia, Africa, Islamic or Buddhist countries, etc?
Perspectives from "other countries"
"What, then, do we know about the norms and values that govern physician patient or nurse patient interactions in other countries? The answer is that we know surprisingly little, and much of what we appear to know is based on studies of questionable relevance. ...If it is true that we do not find the same emphasis on autonomy within the medical context in other countries, and it is true therefore that the US emphasis on autonomy is provincial, it would undermine the claim that such an ethics should form a general basis for physician patient or nurse patient relationships. The reason for this is that there is no direct connection between an acceptance of autonomy as a fundamental ethical value and statements about what should be done in concrete clinical situations." Reidar K. Lie "Cross-cultural medical ethics" Presented at the Bioethics "Mega-meeting" in Pittsburgh, Spring, 1995. (Emphasis added by us)
A brief search of Latin American bioethics literature shows that most papers on autonomy are theoretical, and that empirical research about people's expectations related to the issue is lacking. A respected voice in Latin American bioethics such as J. Mainetti, reports paternalism to be an extensive practice (17), and anecdotal evidence points in the same way. Several authors refer to the health quality determinants field, but autonomy expectations are not an addressed topic. There are references to the World Health Report 2000, but in a general way they agree with the ethical responsiveness issues (respect, autonomy, confidentiality) (18,19) without reference to the autonomy expectations question. Even those who disagree with the emphasis on autonomy that arises from US bioethics, formulate their objections from a theoretical point of view. One of us (LJ) must acknowledge that, after 25 years of pediatric practice in Argentina, he isn't sure that many people want to have a fully autonomous physician-patient relationship in a shared decision making model, desirable as it may be (20).
The Islamic Code of Medical Professional Ethics (21) based on Qur'anic ethics, although giving clear advice about respecting patients, fails to mention autonomy as a special premise. Of course, as in any other religious code it is stated that "the physician has no right to follow (popular demand or( his patient's wishes if they are in violation of God's orders". The commentary made by Dr. Shahid Attar in the Medical Ethics Symposium at the Islamic Society of North America Convention as "The family should comply because the physician is one who knows best. But the decision is theirs" fails to shed light on the autonomy issue.
A small sample of Chinese medical ethics literature offers contradictory viewpoints (22). According to Sing Lee the precepts of Confucianism define personhood not by autonomy, voluntarism and assertiveness, but by intergenerational dependence, self-effacement, and social harmony (23). Other authors, as Fu-Chang Tsai (24), state that "... in Chinese thinking, individuals are never recognized as separate entities; they are always regarded as part of a network, each with a specific role in relation to others", while Cheng-tek Tai and Seng Lin(25) remark: "In a Confucian context, the family, more than the individual, is often considered as one basic unit in the two aspects of doctor-patient relationships. Medical ethical decision making tends to respect the opinions and decisions made or agreed to by the family as a whole". This contentions seem to be confirmed by field researchers (26-29) and is sustained by the Chinese bioethicist Ren-Zong Qiu (30) who states that in the post-revolutionary epoch China has developed a decision making mechanism that "emphasizes consultation between physicians and family members involving the competent patient, sometimes including close friends or coworkers and the chief of the unit in which the patient works. Roughly speaking, the medical decision is made by the family after consulting with the attending physician." He further adds "rights oriented individualism is essentially alien to the Chinese". Nevertheless, Dr. Jing-Bao Nie, writing about the "cultural argument", states that "My short answer to it is that, since Chinese perspectives are always plural, to answer the question we first need to define which and whose Chinese perspective we are talking about. While respect for autonomy is far from a universal requirement in contemporary China, this does not mean that it is not compatible with any traditional Chinese moral tradition and that Chinese people (patients) do not want their autonomy to be respected by medical professionals." (31) As we see, if we assimilate "requirements" to "expectations", the autonomy issue remains a contentious one.
In a large qualitative study conducted in six South-East Asian countries (India, Nepal, Myanmar, Indonesia, Sri Lanka and Bangladesh) by Addlakha and Seeberg (32), although autonomy expectation was not addressed as a separate issue, the authors findings allow for considering autonomy as a theme with little connection with the cultural frame of physician-patient relationship. "There is a tendency to place the concept of patient autonomy in the overriding framework of family decision making", "The idea of 'familiy informed consent' emerged as an important concept in the interviews" (33).
The Encyclopedia of Bioethics (34) includes a section about Japanese bioethics, written by Rihito Kimura. He describes the physician-patient relationship as a changing process, going from a traditional basis on a "complete and unquestioning trust of the physician by the patient, such that the physician acts to make health care decision on behalf of the patient", towards a new one in which "responsibility for the care of the dying should be shared between family members and all health professionals, not only physicians" (35).
Another Japanese author, Masahiro Morioka (36), states that "Patients' rights activists started to urge that we change our closed, feudalistic medical community into a more liberal and open society where each of us has the basic right to know medical information concerning our own body, and has the right to make important medical decisions by ourselves". Even if this is actually happening, it is possible that the growing aspiration for autonomy-ladden values such as patient choice are not yet incorporated into population's expectations.
In reference to Africa, a significant opinion is that of Peter Kasenene, Lecturer on Theology at the University of Swaziland (37), who describes the Communalism Principle, which implies that "one's health is a concern of the community, and a person is expected to preserve his life for the good of the group". Individuals that disregard community opinions and do what they think may be regarded as anti-social. "In African societies which emphasize corporate existence, a person is expected to conform to communal decisions", and so discarding freedom to perform actions that involve serious risk for the agent and that others consider to be foolish.
In an essay devoted to Person and Community, Wiredu and Gyekye (38) describe and analyze African culture, remarking "the African view asserts the ontological primacy, and hence the ontological independence, of the community" and "it is the community which defines the person as person, not some isolated static quality of rationality, wills or memory" They also quote former President of Senegal, poet and philosopher Leopold Senghor as stating that "Negro-African society puts more stress on the group than on the individuals, more on solidarity than on the activity and needs of the individual, more on the communion of persons than on their autonomy. Ours is a community society." Although the concept of an "African view" may be challenged, there seems to be little ground to postulate aunomy as an expectation in African people. Until now, the bibliography search has not yielded results referring to autonomy expectations in African patients.
Although the selective character of this small sample of literature review forbids us from drawing any conclusion about the validity of the autonomy concept, we think that it allows us to postulate that there is not enough evidence to construe autonomy as a universal expectation.
Methodological aspects of autonomy research
In view of the importance of autonomy being defined as a cross-cultural dominion (as we have previously shown that this a valid discussion point), our methodological design is oriented towards the examination of the conceptions a defined group of people has about autonomy.
We consider that the nature of this task makes qualitative research more suitable, as it is a privileged approach to understand and explain different behaviors and perspectives from the participant's viewpoint.
It is important to remember some main characteristics of qualitative methodology since it must not become a mechanical application of techniques. It implies a defined epistemological conception about the research process, in which the use given to techniques is related to a dialectical relationship between concept analysis and fieldwork (39).
This kind of empirical work or, as it has been often called, "fieldwork", characterizes by a to and fro movement between data collection and analysis, and from there to new data search. This produces a flexibilization of methodological tools used, as they must change to adequate to results gathered in the previous field sample and its analysis (40,41).
Another important consideration is about the changes that modify the "researcher-research subject" relationship, in which the later is considered an active subject, whose interpretations and the categories arising from them (called "social categories") attain a groundbreaking importance. The researcher works by contrasting and combining theoretical categories (coming from theoretical reference), with empirical categories (resulting from fieldwork analysis) and social categories (those used by the research subjects). In this way it is attempted to understand both the situation the social actor defines and the meaning he gives to his behavior (42).
Knowledge advancement is produced in a "spiraled progress" from theory to practice, from conceptual analysis to fieldwork and back. "The attempt is to get the largest data collection about the study subject in order to -grounded in conceptual work- guide the fieldwork each time in a more systematic fashion, with a sharper focus" (43).
The possibility to generalize and extend the results is given through the application of the comparative method. By its use similar cases are contrasted, trying to formulate explanations that include theoretical concepts. This guides the efforts towards the finding of similarities and differences between the different studied cases. This method requires a sampling method that must be necessarily intentional(44) meaning that cases should be selected in relationship to its potential to research development and not in a random way. As a corollary the conclusions, conceptions and ideal types constructed though the application of this methodology have explanatory but not predictive validity.
Data collected and pieced together in this way are representative, since the work is done with subjects that constitute "sociohistorical individualities" (45) starting from the assumption that there is a correspondence "that is neither linear nor mechanical" between individual and social process (46).
In relation to autonomy and responsiveness issues these methodologies are even more relevant since the field is a new one and not yet deeply explored. Consequently earlier information is lacking when quantitative measurements are attempted, and this causes difficulties in the selection of universal indicators that could be relevant for the different study populations.
The study we propose would be important as it could identify new elements to define the cross-cultural meanings of autonomy as a universal expectation. In a way it would permit us to arrive to an empirical definition of its sense based upon the studied population conceptions; otherwise, as it would allow for comparisons between different population sectors, it would help defining meaningful points to use as indicators for measurement in different social and cultural environments. This would prospectively amplify its use as a cross-cultural dominion if similar studies were conducted on several countries with diverse cultural backgrounds.
Accounting for this approach it would be of the utmost importance for this field the development of a multicentric research agenda, including different cultural traditions. For optimal results this research program should include several countries from all continents, and should develop in concurrent times. This would increase the possibility of making meaningful comparative considerations. Special attention should be paid to aboriginal communities, since they are often not accounted for in so-called "national" studies, when the dominant culture is another one.
As a starting point our goal is to develop a study of this kind in Argentina's North Patagonia (Neuquén Province), where mapuche aboriginal people, "criollo" rural population, and urban population from different cultural backgrounds can be found.
We think that the development of a program as the one here proposed would require the collaboration of several research groups, each one defining its own research design and the strategies relevant to each country and area. In our case we have considered as research tools the use of participatory group techniques such as assemblies, workshops and focus groups, together with ethnographic interviews and life histories. Results will be taken in account not only for results but also for the design of further research phases (47), If needed, the use of qualitative surveys is not discarded.
As our proposal is to investigate on autonomy as a people's expectation in different countries and regions of the world, contact with researchers working on similar ideas would be both necessary and welcome.
Although the small sample of literature reviewed doesn't allow for generalizatons, we hope to have demonstrated that assuming autonomy as a universal expectation seems unwarranted. Note should be taken against the danger of assuming there are "continental" categories such as "Asian" or "African" bioethics, as cautioned by several authors (48-50) Recognition of plurality and diversity of opinions and customs is an ethical requirement.
Since we consider that the incorporation of ethical parameters to health systems evaluation is a meaningful progress and as such it should be supported, we propose to study the issue through an international collaborative program. We think that qualitative research would be the most adequate way to do it, at least initially, until more data are obtained and only with that base large surveys as planned by WHO can be satisfactorily developed.
We wish to thank the useful commentaries of Amala de Silva and Nicole Valentine.
1. We wish to make clear that ours is not an attempt to analyze the literature about autonomy in different cultures in a complete and systematic way, but to give several significant examples of our assertion that autonomy is far from a "universal expectation". We therefore apologize to any author who could feel that her/his work is being excluded, and we acknowledge that much relevant work may have been omitted.
2. WHO. World Health Report 2000.
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4. Emphasis added by authors.
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20. Parents, when confronted with a usually complex explanation about options, alternatives and choices, often say "Please doctor, YOU tell us what to do". Of course this may only mean that they are not used to make health choices owing to paternalistic medical attitudes. But: are they expecting the offer of explanations about alternatives and choices? This is a legitimate question.
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