On the Rationality of Decision-Making Studies: Part 1: Decision Models of Treatment Choice

With reference to both critiques and empirical studies, the theoretical and methodological grounding of anthropological research on medical decision making is examined in this article, giving particular attention to the construction and evaluation of cognitively oriented decision models. A decisionmodeling study carried out in the Mexican village of Pichátaro (in conjunction with James C. Young) frames an exploration of some of the tensions and points of contention about the aims and designs of cognitively oriented studies of decision modeling. While a decision model can provide a reasonably good guide to an understanding of treatment actions and the culturally based rationality that underlies them, such models fall short when they are oriented primarily around predicting treatment accounts. They should also attend to the jointly cultural, personal, social, and cognitive constructive processes through which meaning is conferred upon the occurrence of illness, [care seeking, decision models, decision making, Mexico]     

BALANCING LIBERATION AND PROTECTION: A MODERATE APPROACH TO ADOLESCENT HEALTH CARE DECISION‐MAKING

In this paper I examine the debate between ‘protectionists’ and ‘liberationists’ concerning the appropriate role of minors in decision‐making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision‐making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other hand, argue in favour of expanded participation by minors in treatment decisions, and decision‐making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns.     

Retrospective study of doctors' "end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands.

OBJECTIVES: To gain insight into the reasons behind and the prevalence of doctors'' decisions at the end of life that might hasten a patient''s death ("end of life decisions") in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process. DESIGN: Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews. SUBJECTS: 89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case. MAIN OUTCOME MEASURES: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process. RESULTS: The 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague. CONCLUSIONS: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.     

Fisheries stock assessment and decision analysis: the Bayesian approach

The Bayesian approach to stock assessment determines the probabilities of alternative hypotheses using information for the stock in question and from inferences for other stocks/species. These probabilities are essential if the consequences of alternative management actions are to be evaluated through a decision analysis. Using the Bayesian approach to stock assessment and decision analysis it becomes possible to admit the full range of uncertainty and use the collective historical experience of fisheries science when estimating the consequences of proposed management actions. Recent advances in computing algorithms and power have allowed methods based on the Bayesian approach to be used even for fairly complex stock assessment models and to be within the reach of most stock assessment scientists. However, to avoid coming to ill-founded conclusions, care must be taken when selecting prior distributions. In particular, selection of priors designed to be noninformative with respect to quantities of interest to management is problematic. The arguments of the paper are illustrated using New Zealand's western stock of hoki, Macruronus novaezelandiae (Merlucciidae) and the Bering--Chukchi--Beaufort Seas stock of bowhead whales as examples     

A Discourse of Relationships in Bioethics: Patient Autonomy and End-of-Life Decision Making among Elderly Korean Americans

A two-year, multidisciplinary study (N = 800) was conducted on attitudes about end-of-life decision making among elderly individuals in four ethnic groups (African American, European American, Korean American, and Mexican American). On a quantitative survey, Korean Americans reported negative attitudes about the use of life-sustaining technology for themselves but positive attitudes about its use in general. This article reports on an interview with a 79-year-old typical Korean American respondent to explain the contradiction in the survey data. Expectations among elderly Korean Americans include protecting family members with a life-threatening illness from being informed of their diagnosis and prognosis, and doing everything to keep them alive. Two conclusions, one substantive and the other methodological, are drawn: First, the bioethics discourse on individual rights (patientautonomy) is insufficient to explain the preferences of many Korean Americans and must be supplemented with a discourse on relationships. Second, the rigorous use of qualitative, narrative methods clarifies quantitative data and should not be dismissed as "anecdotal." fbioethics, endoflife decision making, ethnicity, Asian Americans, qualitative methods, narrative]     

Embodied Choice: How Action Influences Perceptual Decision Making

Embodied Choice considers action performance as a proper part of the decision making process rather than merely as a means to report the decision. The central statement of embodied choice is the existence of bidirectional influences between action and decisions. This implies that for a decision expressed by an action, the action dynamics and its constraints (e.g. current trajectory and kinematics) influence the decision making process. Here we use a perceptual decision making task to compare three types of model: a serial decision-then-action model, a parallel decision-and-action model, and an embodied choice model where the action feeds back into the decision making. The embodied model incorporates two key mechanisms that together are lacking in the other models: action preparation and commitment. First, action preparation strategies alleviate delays in enacting a choice but also modify decision termination. Second, action dynamics change the prospects and create a commitment effect to the initially preferred choice. Our results show that these two mechanisms make embodied choice models better suited to combine decision and action appropriately to achieve suitably fast and accurate responses, as usually required in ecologically valid situations. Moreover, embodied choice models with these mechanisms give a better account of trajectory tracking experiments during decision making. In conclusion, the embodied choice framework offers a combined theory of decision and action that gives a clear case that embodied phenomena such as the dynamics of actions can have a causal influence on central cognition.     

Self-Improvement for Team-Players: The Effects of Individual Effort on Aggregated Group Information

By putting effort into behaviours like foraging or scanning for predators, an animal can improve the correctness of its personal information about the environment. For animals living in groups, the individual can gain further information if it is able to assess public information about the environment from other group members. Earlier work has shown that consensus group decisions based upon the public information available within the group are more likely to be correct than decisions based upon personal information alone, given that each individual in a group has a fixed probability of being correct. This study develops a model where group members are able to improve their personal likelihood of making a correct decision by conducting some level of (costly) effort. I demonstrate that there is an evolutionarily stable level of effort for all the individuals within the group, and the effort made by an individual should decrease with increasing group size. The relevance of these results to social decision making is discussed: in particular, these results are similar to standard theoretical predictions about the amount of vigilance shown by individuals decreasing with increasing group size. However, this model suggests that these results could come about where individuals are coordinating their effort within the group (unlike standard models, which assume that all individual effort is independent of the actions of others). This ties in with experimental findings where individuals have been shown to monitor the efforts of others.     

A model for change: An approach for forecasting well-being from service-based decisions

Every community decision incorporates a “forecasting” strategy (whether formal or implicit) to help visualize expected results and evaluate the potential “feelings/responses” that people living in that community may have about those results. With more communities seeking to make decisions based on sustainable alternatives, forecasting efforts that examine potential impacts of decisions on overall community well-being may prove to be valuable for not only gauging future benefits and trade-offs, but also for recognizing a community's affective response to the outcomes of those decisions. This paper describes a forecasting approach based on concepts introduced in the development of the U.S. Environmental Protection Agency's (US EPA) Human Well-Being Index (HWBI) (Smith et al., 2014, Summers et al., 2014). The approach examines the relationships among selected economic, environmental and social services that can be directly impacted by community decisions and eight domains of human well-being. Using models developed from constructed- or fixed-effect step-wise and multiple regressions and 11 years of data (2000–2010), these relationship functions may be used to characterize likely direct impacts of decisions on future well-being, as well as the possible intended and unintended secondary and tertiary effects relative to any main decision effects.     

Lessons from the field--health care experiences and preferences in a Latino community

As part of Midwest Bioethics Center's PATHWAYS to Improve End-of-Life Care project, we conducted an exploratory study in the Latino community of Kansas City to understand health beliefs, practices, and values, particularly as they relate to end-of-life care. We conducted ten focus groups and interviewed more than seventeen individuals who serve the Latino community in a social service, ministry, or health care capacity. We found that people were very concerned with "barriers to health care" (our term), and very willing to reveal their preferences for health care decision making and end-of-life care treatment options. We believe that bioethicists should conduct other, similar projects because they can improve our engagement with the Latino population and help Latinos find a greater voice in health care settings.     

Intrinsic Valuation of Information in Decision Making under Uncertainty

In a dynamic world, an accurate model of the environment is vital for survival, and agents ought regularly to seek out new information with which to update their world models. This aspect of behaviour is not captured well by classical theories of decision making, and the cognitive mechanisms of information seeking are poorly understood. In particular, it is not known whether information is valued only for its instrumental use, or whether humans also assign it a non-instrumental intrinsic value. To address this question, the present study assessed preference for non-instrumental information among 80 healthy participants in two experiments. Participants performed a novel information preference task in which they could choose to pay a monetary cost to receive advance information about the outcome of a monetary lottery. Importantly, acquiring information did not alter lottery outcome probabilities. We found that participants were willing to incur considerable monetary costs to acquire payoff-irrelevant information about the lottery outcome. This behaviour was well explained by a computational cognitive model in which information preference resulted from aversion to temporally prolonged uncertainty. These results strongly suggest that humans assign an intrinsic value to information in a manner inconsistent with normative accounts of decision making under uncertainty. This intrinsic value may be associated with adaptive behaviour in real-world environments by producing a bias towards exploratory and information-seeking behaviour.     

Surviving at Any Cost: Guilt Expression Following Extreme Ethical Conflicts in a Virtual Setting

Studying human behavior in response to large-scale catastrophic events, particularly how moral challenges would be undertaken under extreme conditions, is an important preoccupation for contemporary scientists and decision leaders. However, researching this issue was hindered by the lack of readily available models. Immersive virtual worlds could represent a solution, by providing ways to test human behavior in controlled life-threatening situations. Using a massively multi-player zombie apocalypse setting, we analysed spontaneously reported feelings of guilt following ethically questionable actions related to survival. The occurrence and magnitude of guilt depended on the nature of the consequences of the action. Furthermore, feelings of guilt predicted long-lasting changes in behavior, displayed as compensatory actions. Finally, actions inflicting immediate harm to others appeared mostly prompted by panic and were more commonly regretted. Thus, extreme conditions trigger a reduction of the impact of ethical norms in decision making, although awareness of ethicality is retained to a surprising extent.     

Adaptive Management and the Value of Information: Learning Via Intervention in Epidemiology

Optimal intervention for disease outbreaks is often impeded by severe scientific uncertainty. Adaptive management (AM), long-used in natural resource management, is a structured decision-making approach to solving dynamic problems that accounts for the value of resolving uncertainty via real-time evaluation of alternative models. We propose an AM approach to design and evaluate intervention strategies in epidemiology, using real-time surveillance to resolve model uncertainty as management proceeds, with foot-and-mouth disease (FMD) culling and measles vaccination as case studies. We use simulations of alternative intervention strategies under competing models to quantify the effect of model uncertainty on decision making, in terms of the value of information, and quantify the benefit of adaptive versus static intervention strategies. Culling decisions during the 2001 UK FMD outbreak were contentious due to uncertainty about the spatial scale of transmission. The expected benefit of resolving this uncertainty prior to a new outbreak on a UK-like landscape would be £45–£60 million relative to the strategy that minimizes livestock losses averaged over alternate transmission models. AM during the outbreak would be expected to recover up to £20.1 million of this expected benefit. AM would also recommend a more conservative initial approach (culling of infected premises and dangerous contact farms) than would a fixed strategy (which would additionally require culling of contiguous premises). For optimal targeting of measles vaccination, based on an outbreak in Malawi in 2010, AM allows better distribution of resources across the affected region; its utility depends on uncertainty about both the at-risk population and logistical capacity. When daily vaccination rates are highly constrained, the optimal initial strategy is to conduct a small, quick campaign; a reduction in expected burden of approximately 10,000 cases could result if campaign targets can be updated on the basis of the true susceptible population. Formal incorporation of a policy to update future management actions in response to information gained in the course of an outbreak can change the optimal initial response and result in significant cost savings. AM provides a framework for using multiple models to facilitate public-health decision making and an objective basis for updating management actions in response to improved scientific understanding.     

Dying under the bird's shadow: narrative representations of degedege and child survival among the Zaramo of Tanzania

In this article, I examine the cultural interpretations of degedege, an indigenous illness commonly recognized by the Zaramo people of coastal Tanzania as life threatening. Drawing on the narratives of three bereaved parents who lost a child to degedege, I analyze the contextual and circumstantial factors involved in these parents' negotiation of the identity of an illness and in their subsequent therapy seeking behavior. I show that even though cultural knowledge and etiological beliefs about degedege may be shared locally, there is significant variation in the therapeutic pathways that parents follow to deal with an actual episode of the illness. I emphasize the need for more contextualized data on health-seeking behaviors, and argue that it is necessary to pay attention to the micropolitics of health care decision making at the household level. Finally, I also call attention to the politics of provider-patient communication at public health facilities as a means to improve public health interventions to increase child survival.     

Care Seeking Behaviour for Children with Suspected Pneumonia in Countries in Sub-Saharan Africa with High Pneumonia Mortality

Pneumonia is the leading cause of childhood mortality in sub-Saharan Africa (SSA). Because effective antibiotic treatment exists, timely recognition of pneumonia and subsequent care seeking for treatment can prevent deaths. For six high pneumonia mortality countries in SSA we examined if children with suspected pneumonia were taken for care, and if so, from which type of care providers, using national survey data of 76530 children. We also assessed factors independently associated with care seeking from health providers, also known as ‘appropriate’ providers. We report important differences in care seeking patterns across these countries. In Tanzania 85% of children with suspected pneumonia were taken for care, whereas this was only 30% in Ethiopia. Most of the children living in these six countries were taken to a primary health care facility; 86, 68 and 59% in Ethiopia, Tanzania and Burkina Faso respectively. In Uganda, hospital care was sought for 60% of children. 16–18% of children were taken to a private pharmacy in Democratic Republic of Congo (DRC), Tanzania and Nigeria. In Tanzania, children from the richest households were 9.5 times (CI 2.3–39.3) more likely to be brought for care than children from the poorest households, after controlling for the child’s age, sex, caregiver’s education and urban-rural residence. The influence of the age of a child, when controlling for sex, urban-rural residence, education and wealth, shows that the youngest children (<2 years) were more likely to be brought to a care provider in Nigeria, Ethiopia and DRC. Urban-rural residence was not significantly associated with care seeking, after controlling for the age and sex of the child, caregivers education and wealth. The study suggests that it is crucial to understand country-specific care seeking patterns for children with suspected pneumonia and related determinants using available data prior to planning programmatic responses.     

Health-seeking behaviour for childhood malaria: household dynamics in rural Senegal

Research on health care behaviour in sub-Saharan Africa usually considers the mother as the reference in the household when a child is sick. The study of health care management within the family is a key issue for understanding therapeutic rationales. This study was conducted in the region of Fatick in Senegal among 902 children with malaria-related fever. The data were taken from a retrospective quantitative survey conducted in all compounds of the DSS (Demographic Surveillance Site) of Niakhar. The results show that child care-taking is fundamentally a collective process: in 70.9% of out-of-home resorts, the treatment decision was collective. The health care process of 68.1% of morbid episodes involved several individuals. The involvement of the mother, the father and other relatives in the collective management of health care followed different logics. Each care-giver had a specific and complementary function depending on gender norms, intergenerational relations and characteristics of the family unit. Family management of illness aims at optimizing financial and human resources given the economic, logistical and social constraints on health care. Nevertheless, collective management also favoured home-based care, prevented good treatment compliance and delayed the resort to health facilities. These results suggest that health education campaigns should focus on an early involvement of fathers in health care-giving and also on the strengthening of the autonomy of mothers. Mothers' empowerment should give women more autonomy in their child's treatment choice. Lastly, there is a need to develop community health facilities and establish shared funding at the community level.     

Revisiting Community Case Management of Childhood Pneumonia: Perceptions of Caregivers and Grass Root Health Providers in Uttar Pradesh and Bihar,Northern India

Background

Community-acquired pneumonia (CAP) is the leading cause of under-five mortality globally with almost one-quarter of deaths occurring in India.

Objectives

To identify predisposing, enabling and service-related factors influencing treatment delay for CAP in rural communities of two states in India. Factors investigated included recognition of danger signs of CAP, health care decision making, self-medication, treatment and referral by local practitioners, and perceptions about quality of care.

Methods

Qualitative research employing case studies (CS) of care-seeking, key informant interviews (KII), semi-structured interviews (SSI) and focus group discussions (FGD) with both video presentations of CAP signs, and case scenarios. Interviews and FGDs were conducted with parents of under-five children who had suffered CAP, community health workers (CHW), and rural medical practitioners (RMP).

Results

From September 2013 to January 2014, 30 CS, 43 KIIs, 42 SSIs, and 42 FGDs were conducted. Recognition of danger signs of CAP among caregivers was poor. Fast breathing, an early sign of CAP, was not commonly recognized. Chest in-drawing was recognized as a sign of serious illness, but not commonly monitored by removing a child’s clothing. Most cases of mild to moderate CAP were brought to RMP, and more severe cases taken to private clinics in towns. Mothers consulted local RMP directly, but decisions to visit doctors outside the village required consultation with husband or mother-in-law. By the time most cases reached a public tertiary-care hospital, children had been ill for a week and treated by 2-3 providers. Quality of care at government facilities was deemed poor by caregivers.

Conclusion

To reduce CAP-associated mortality, recognition of its danger signs and the consequences of treatment delay needed to be better recognized by caregivers, and confidence in government facilities increased. The involvement of RMP in community based CAP programs needs to be investigated further given their widespread popularity.