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1.  A regret theory approach to decision curve analysis: A novel method for eliciting decision makers' preferences and decision-making 
Decision curve analysis (DCA) has been proposed as an alternative method for evaluation of diagnostic tests, prediction models, and molecular markers. However, DCA is based on expected utility theory, which has been routinely violated by decision makers. Decision-making is governed by intuition (system 1), and analytical, deliberative process (system 2), thus, rational decision-making should reflect both formal principles of rationality and intuition about good decisions. We use the cognitive emotion of regret to serve as a link between systems 1 and 2 and to reformulate DCA.
First, we analysed a classic decision tree describing three decision alternatives: treat, do not treat, and treat or no treat based on a predictive model. We then computed the expected regret for each of these alternatives as the difference between the utility of the action taken and the utility of the action that, in retrospect, should have been taken. For any pair of strategies, we measure the difference in net expected regret. Finally, we employ the concept of acceptable regret to identify the circumstances under which a potentially wrong strategy is tolerable to a decision-maker.
We developed a novel dual visual analog scale to describe the relationship between regret associated with "omissions" (e.g. failure to treat) vs. "commissions" (e.g. treating unnecessary) and decision maker's preferences as expressed in terms of threshold probability. We then proved that the Net Expected Regret Difference, first presented in this paper, is equivalent to net benefits as described in the original DCA. Based on the concept of acceptable regret we identified the circumstances under which a decision maker tolerates a potentially wrong decision and expressed it in terms of probability of disease.
We present a novel method for eliciting decision maker's preferences and an alternative derivation of DCA based on regret theory. Our approach may be intuitively more appealing to a decision-maker, particularly in those clinical situations when the best management option is the one associated with the least amount of regret (e.g. diagnosis and treatment of advanced cancer, etc).
PMCID: PMC2954854  PMID: 20846413
2.  How do physicians decide to treat: an empirical evaluation of the threshold model 
According to the threshold model, when faced with a decision under diagnostic uncertainty, physicians should administer treatment if the probability of disease is above a specified threshold and withhold treatment otherwise. The objectives of the present study are to a) evaluate if physicians act according to a threshold model, b) examine which of the existing threshold models [expected utility theory model (EUT), regret-based threshold model, or dual-processing theory] explains the physicians’ decision-making best.
A survey employing realistic clinical treatment vignettes for patients with pulmonary embolism and acute myeloid leukemia was administered to forty-one practicing physicians across different medical specialties. Participants were randomly assigned to the order of presentation of the case vignettes and re-randomized to the order of “high” versus “low” threshold case. The main outcome measure was the proportion of physicians who would or would not prescribe treatment in relation to perceived changes in threshold probability.
Fewer physicians choose to treat as the benefit/harms ratio decreased (i.e. the threshold increased) and more physicians administered treatment as the benefit/harms ratio increased (and the threshold decreased). When compared to the actual treatment recommendations, we found that the regret model was marginally superior to the EUT model [Odds ratio (OR) = 1.49; 95% confidence interval (CI) 1.00 to 2.23; p = 0.056]. The dual-processing model was statistically significantly superior to both EUT model [OR = 1.75, 95% CI 1.67 to 4.08; p < 0.001] and regret model [OR = 2.61, 95% CI 1.11 to 2.77; p = 0.018].
We provide the first empirical evidence that physicians’ decision-making can be explained by the threshold model. Of the threshold models tested, the dual-processing theory of decision-making provides the best explanation for the observed empirical results.
PMCID: PMC4055375  PMID: 24903517
Medical decision-making; Threshold model; Dual-processing theory; Regret, Expected utility theory
3.  Unreliable Gut Feelings Can Lead to Correct Decisions: The Somatic Marker Hypothesis in Non-Linear Decision Chains 
Dual-process approaches of decision-making examine the interaction between affective/intuitive and deliberative processes underlying value judgment. From this perspective, decisions are supported by a combination of relatively explicit capabilities for abstract reasoning and relatively implicit evolved domain-general as well as learned domain-specific affective responses. One such approach, the somatic markers hypothesis (SMH), expresses these implicit processes as a system of evolved primary emotions supplemented by associations between affect and experience that accrue over lifetime, or somatic markers. In this view, somatic markers are useful only if their local capability to predict the value of an action is above a baseline equal to the predictive capability of the combined rational and primary emotional subsystems. We argue that decision-making has often been conceived of as a linear process: the effect of decision sequences is additive, local utility is cumulative, and there is no strong environmental feedback. This widespread assumption can have consequences for answering questions regarding the relative weight between the systems and their interaction within a cognitive architecture. We introduce a mathematical formalization of the SMH and study it in situations of dynamic, non-linear decision chains using a discrete-time stochastic model. We find, contrary to expectations, that decision-making events can interact non-additively with the environment in apparently paradoxical ways. We find that in non-lethal situations, primary emotions are represented globally over and above their local weight, showing a tendency for overcautiousness in situated decision chains. We also show that because they tend to counteract this trend, poorly attuned somatic markers that by themselves do not locally enhance decision-making, can still produce an overall positive effect. This result has developmental and evolutionary implications since, by promoting exploratory behavior, somatic markers would seem to be beneficial even at early stages when experiential attunement is poor. Although the model is formulated in terms of the SMH, the implications apply to dual systems theories in general since it makes minimal assumptions about the nature of the processes involved.
PMCID: PMC3466990  PMID: 23087655
dual system decision-making; affect; decision chains; dynamic decision-making; somatic marker hypothesis; discrete-time Markov chains
4.  Organization-wide adoption of computerized provider order entry systems: a study based on diffusion of innovations theory 
Computerized provider order entry (CPOE) systems have been introduced to reduce medication errors, increase safety, improve work-flow efficiency, and increase medical service quality at the moment of prescription. Making the impact of CPOE systems more observable may facilitate their adoption by users. We set out to examine factors associated with the adoption of a CPOE system for inter-organizational and intra-organizational care.
The diffusion of innovation theory was used to understand physicians' and nurses' attitudes and thoughts about implementation and use of the CPOE system. Two online survey questionnaires were distributed to all physicians and nurses using a CPOE system in county-wide healthcare organizations. The number of complete questionnaires analyzed was 134 from 200 nurses (67.0%) and 176 from 741 physicians (23.8%). Data were analyzed using descriptive-analytical statistical methods.
More nurses (56.7%) than physicians (31.3%) stated that the CPOE system introduction had worked well in their clinical setting (P < 0.001). Similarly, more physicians (73.9%) than nurses (50.7%) reported that they found the system not adapted to their specific professional practice (P = < 0.001). Also more physicians (25.0%) than nurses (13.4%) stated that they did want to return to the previous system (P = 0.041). We found that in particular the received relative advantages of the CPOE system were estimated to be significantly (P < 0.001) higher among nurses (39.6%) than physicians (16.5%). However, physicians' agreements with the compatibility of the CPOE and with its complexity were significantly higher than the nurses (P < 0.001).
Qualifications for CPOE adoption as defined by three attributes of diffusion of innovation theory were not satisfied in the study setting. CPOE systems are introduced as a response to the present limitations in paper-based systems. In consequence, user expectations are often high on their relative advantages as well as on a low level of complexity. Building CPOE systems therefore requires designs that can provide rather important additional advantages, e.g. by preventing prescription errors and ultimately improving patient safety and safety of clinical work. The decision-making process leading to the implementation and use of CPOE systems in healthcare therefore has to be improved. As any change in health service settings usually faces resistance, we emphasize that CPOE system designers and healthcare decision-makers should continually collect users' feedback about the systems, while not forgetting that it also is necessary to inform the users about the potential benefits involved.
PMCID: PMC2809050  PMID: 20043843
5.  Gut Feelings as a Third Track in General Practitioners’ Diagnostic Reasoning 
General practitioners (GPs) are often faced with complicated, vague problems in situations of uncertainty that they have to solve at short notice. In such situations, gut feelings seem to play a substantial role in their diagnostic process. Qualitative research distinguished a sense of alarm and a sense of reassurance. However, not every GP trusted their gut feelings, since a scientific explanation is lacking.
This paper explains how gut feelings arise and function in GPs’ diagnostic reasoning.
The paper reviews literature from medical, psychological and neuroscientific perspectives.
Gut feelings in general practice are based on the interaction between patient information and a GP’s knowledge and experience. This is visualized in a knowledge-based model of GPs’ diagnostic reasoning emphasizing that this complex task combines analytical and non-analytical cognitive processes. The model integrates the two well-known diagnostic reasoning tracks of medical decision-making and medical problem-solving, and adds gut feelings as a third track. Analytical and non-analytical diagnostic reasoning interacts continuously, and GPs use elements of all three tracks, depending on the task and the situation. In this dual process theory, gut feelings emerge as a consequence of non-analytical processing of the available information and knowledge, either reassuring GPs or alerting them that something is wrong and action is required. The role of affect as a heuristic within the physician’s knowledge network explains how gut feelings may help GPs to navigate in a mostly efficient way in the often complex and uncertain diagnostic situations of general practice. Emotion research and neuroscientific data support the unmistakable role of affect in the process of making decisions and explain the bodily sensation of gut feelings.The implications for health care practice and medical education are discussed.
PMCID: PMC3019314  PMID: 20967509
gut feelings; diagnostic reasoning; non-analytical reasoning; general practitioner; family physician; dual processes; intuition
6.  Cognitive debiasing 1: origins of bias and theory of debiasing 
BMJ Quality & Safety  2013;22(Suppl 2):ii58-ii64.
Numerous studies have shown that diagnostic failure depends upon a variety of factors. Psychological factors are fundamental in influencing the cognitive performance of the decision maker. In this first of two papers, we discuss the basics of reasoning and the Dual Process Theory (DPT) of decision making. The general properties of the DPT model, as it applies to diagnostic reasoning, are reviewed. A variety of cognitive and affective biases are known to compromise the decision-making process. They mostly appear to originate in the fast intuitive processes of Type 1 that dominate (or drive) decision making. Type 1 processes work well most of the time but they may open the door for biases. Removing or at least mitigating these biases would appear to be an important goal. We will also review the origins of biases. The consensus is that there are two major sources: innate, hard-wired biases that developed in our evolutionary past, and acquired biases established in the course of development and within our working environments. Both are associated with abbreviated decision making in the form of heuristics. Other work suggests that ambient and contextual factors may create high risk situations that dispose decision makers to particular biases. Fatigue, sleep deprivation and cognitive overload appear to be important determinants. The theoretical basis of several approaches towards debiasing is then discussed. All share a common feature that involves a deliberate decoupling from Type 1 intuitive processing and moving to Type 2 analytical processing so that eventually unexamined intuitive judgments can be submitted to verification. This decoupling step appears to be the critical feature of cognitive and affective debiasing.
PMCID: PMC3786658  PMID: 23882089
Patient safety; Cognitive biases; Decision making; Diagnostic errors
7.  Implementation science: a role for parallel dual processing models of reasoning? 
A better theoretical base for understanding professional behaviour change is needed to support evidence-based changes in medical practice. Traditionally strategies to encourage changes in clinical practices have been guided empirically, without explicit consideration of underlying theoretical rationales for such strategies. This paper considers a theoretical framework for reasoning from within psychology for identifying individual differences in cognitive processing between doctors that could moderate the decision to incorporate new evidence into their clinical decision-making.
Parallel dual processing models of reasoning posit two cognitive modes of information processing that are in constant operation as humans reason. One mode has been described as experiential, fast and heuristic; the other as rational, conscious and rule based. Within such models, the uptake of new research evidence can be represented by the latter mode; it is reflective, explicit and intentional. On the other hand, well practiced clinical judgments can be positioned in the experiential mode, being automatic, reflexive and swift. Research suggests that individual differences between people in both cognitive capacity (e.g., intelligence) and cognitive processing (e.g., thinking styles) influence how both reasoning modes interact. This being so, it is proposed that these same differences between doctors may moderate the uptake of new research evidence. Such dispositional characteristics have largely been ignored in research investigating effective strategies in implementing research evidence. Whilst medical decision-making occurs in a complex social environment with multiple influences and decision makers, it remains true that an individual doctor's judgment still retains a key position in terms of diagnostic and treatment decisions for individual patients. This paper argues therefore, that individual differences between doctors in terms of reasoning are important considerations in any discussion relating to changing clinical practice.
It is imperative that change strategies in healthcare consider relevant theoretical frameworks from other disciplines such as psychology. Generic dual processing models of reasoning are proposed as potentially useful in identifying factors within doctors that may moderate their individual uptake of evidence into clinical decision-making. Such factors can then inform strategies to change practice.
PMCID: PMC1523359  PMID: 16725023
8.  Cortical and Hippocampal Correlates of Deliberation during Model-Based Decisions for Rewards in Humans 
PLoS Computational Biology  2013;9(12):e1003387.
How do we use our memories of the past to guide decisions we've never had to make before? Although extensive work describes how the brain learns to repeat rewarded actions, decisions can also be influenced by associations between stimuli or events not directly involving reward — such as when planning routes using a cognitive map or chess moves using predicted countermoves — and these sorts of associations are critical when deciding among novel options. This process is known as model-based decision making. While the learning of environmental relations that might support model-based decisions is well studied, and separately this sort of information has been inferred to impact decisions, there is little evidence concerning the full cycle by which such associations are acquired and drive choices. Of particular interest is whether decisions are directly supported by the same mnemonic systems characterized for relational learning more generally, or instead rely on other, specialized representations. Here, building on our previous work, which isolated dual representations underlying sequential predictive learning, we directly demonstrate that one such representation, encoded by the hippocampal memory system and adjacent cortical structures, supports goal-directed decisions. Using interleaved learning and decision tasks, we monitor predictive learning directly and also trace its influence on decisions for reward. We quantitatively compare the learning processes underlying multiple behavioral and fMRI observables using computational model fits. Across both tasks, a quantitatively consistent learning process explains reaction times, choices, and both expectation- and surprise-related neural activity. The same hippocampal and ventral stream regions engaged in anticipating stimuli during learning are also engaged in proportion to the difficulty of decisions. These results support a role for predictive associations learned by the hippocampal memory system to be recalled during choice formation.
Author Summary
We are always learning regularities in the world around us: where things are, and in what order we might find them. Our knowledge of these contingencies can be relied upon if we later want to use them to make decisions. However, there is little agreement about the neurobiological mechanism by which learned contingencies are deployed for decision making. These are different kinds of decisions than simple habits, in which we take actions that have in the past given us reward. Neural mechanisms of habitual decisions are well-described by computational reinforcement learning approaches, but have not often been applied to ‘model-based’ decisions that depend on learned contingencies. In this article, we apply reinforcement learning to investigate model-based decisions. We tested participants on a serial reaction time task with changing sequential contingencies, and choice probes that depend on these contingencies. Fitting computational models to reaction times, we show that two sets of predictions drive simple response behavior, only one of which is used to make choices. Using fMRI, we observed learning and decision-related activity in hippocampal and ventral cortical areas that is computationally linked to the learned contingencies used to make choices. These results suggest a critical role for a hippocampal-cortical network in model-based decisions for reward.
PMCID: PMC3854511  PMID: 24339770
9.  Patchy ‘coherence’: using normalization process theory to evaluate a multi-faceted shared decision making implementation program (MAGIC) 
Implementing shared decision making into routine practice is proving difficult, despite considerable interest from policy-makers, and is far more complex than merely making decision support interventions available to patients. Few have reported successful implementation beyond research studies. MAking Good Decisions In Collaboration (MAGIC) is a multi-faceted implementation program, commissioned by The Health Foundation (UK), to examine how best to put shared decision making into routine practice. In this paper, we investigate healthcare professionals’ perspectives on implementing shared decision making during the MAGIC program, to examine the work required to implement shared decision making and to inform future efforts.
The MAGIC program approached implementation of shared decision making by initiating a range of interventions including: providing workshops; facilitating development of brief decision support tools (Option Grids); initiating a patient activation campaign (‘Ask 3 Questions’); gathering feedback using Decision Quality Measures; providing clinical leads meetings, learning events, and feedback sessions; and obtaining executive board level support. At 9 and 15 months (May and November 2011), two rounds of semi-structured interviews were conducted with healthcare professionals in three secondary care teams to explore views on the impact of these interventions. Interview data were coded by two reviewers using a framework derived from the Normalization Process Theory.
A total of 54 interviews were completed with 31 healthcare professionals. Partial implementation of shared decision making could be explained using the four components of the Normalization Process Theory: ‘coherence,’ ‘cognitive participation,’ ‘collective action,’ and ‘reflexive monitoring.’ Shared decision making was integrated into routine practice when clinical teams shared coherent views of role and purpose (‘coherence’). Shared decision making was facilitated when teams engaged in developing and delivering interventions (‘cognitive participation’), and when those interventions fit with existing skill sets and organizational priorities (‘collective action’) resulting in demonstrable improvements to practice (‘reflexive monitoring’). The implementation process uncovered diverse and conflicting attitudes toward shared decision making; ‘coherence’ was often missing.
The study showed that implementation of shared decision making is more complex than the delivery of patient decision support interventions to patients, a portrayal that often goes unquestioned. Normalizing shared decision making requires intensive work to ensure teams have a shared understanding of the purpose of involving patients in decisions, and undergo the attitudinal shifts that many health professionals feel are required when comprehension goes beyond initial interpretations. Divergent views on the value of engaging patients in decisions remain a significant barrier to implementation.
PMCID: PMC3848565  PMID: 24006959
Shared decision making; Implementation; Patient-centered care; Normalization Process Theory
10.  Pupil-Linked Arousal Determines Variability in Perceptual Decision Making 
PLoS Computational Biology  2014;10(9):e1003854.
Decision making between several alternatives is thought to involve the gradual accumulation of evidence in favor of each available choice. This process is profoundly variable even for nominally identical stimuli, yet the neuro-cognitive substrates that determine the magnitude of this variability are poorly understood. Here, we demonstrate that arousal state is a powerful determinant of variability in perceptual decision making. We measured pupil size, a highly sensitive index of arousal, while human subjects performed a motion-discrimination task, and decomposed task behavior into latent decision making parameters using an established computational model of the decision process. In direct contrast to previous theoretical accounts specifying a role for arousal in several discrete aspects of decision making, we found that pupil diameter was uniquely related to a model parameter representing variability in the rate of decision evidence accumulation: Periods of increased pupil size, reflecting heightened arousal, were characterized by greater variability in accumulation rate. Pupil diameter also correlated trial-by-trial with specific patterns of behavior that collectively are diagnostic of changing accumulation rate variability, and explained substantial individual differences in this computational quantity. These findings provide a uniquely clear account of how arousal state impacts decision making, and may point to a relationship between pupil-linked neuromodulation and behavioral variability. They also pave the way for future studies aimed at augmenting the precision with which people make decisions.
Author Summary
Variability is a hallmark of how we make decisions between different alternatives: Even when we are presented with identical repetitions of a stimulus, the timing and accuracy of our associated decisions vary dramatically. Representations of variability or ‘noise’ have necessarily been a prominent feature of how cognitive scientists model the decision making process. However, very little is known about the underlying neural processes or psychophysiological states that determine the magnitude of this variability. In this study, we measured people's pupil size as an indicator of their physiological arousal state during performance of a challenging motion-discrimination task, and modelled decisions on this task using an established computational model of the decision process in which evidence gradually accumulates toward a response threshold. We found that arousal state was tightly and uniquely linked to a computational parameter that specifically represents variability in the rate at which people accumulate evidence to inform their decisions: Larger pupil size, both within- and between-individuals, corresponded to greater variability in this critical aspect of decision making. Our findings uncover a potent source of variability in how people make decisions, and forge a new link between the classical construct of arousal and modern theories of decision making.
PMCID: PMC4168983  PMID: 25232732
11.  Rationality versus reality: the challenges of evidence-based decision making for health policy makers 
Current healthcare systems have extended the evidence-based medicine (EBM) approach to health policy and delivery decisions, such as access-to-care, healthcare funding and health program continuance, through attempts to integrate valid and reliable evidence into the decision making process. These policy decisions have major impacts on society and have high personal and financial costs associated with those decisions. Decision models such as these function under a shared assumption of rational choice and utility maximization in the decision-making process.
We contend that health policy decision makers are generally unable to attain the basic goals of evidence-based decision making (EBDM) and evidence-based policy making (EBPM) because humans make decisions with their naturally limited, faulty, and biased decision-making processes. A cognitive information processing framework is presented to support this argument, and subtle cognitive processing mechanisms are introduced to support the focal thesis: health policy makers' decisions are influenced by the subjective manner in which they individually process decision-relevant information rather than on the objective merits of the evidence alone. As such, subsequent health policy decisions do not necessarily achieve the goals of evidence-based policy making, such as maximizing health outcomes for society based on valid and reliable research evidence.
In this era of increasing adoption of evidence-based healthcare models, the rational choice, utility maximizing assumptions in EBDM and EBPM, must be critically evaluated to ensure effective and high-quality health policy decisions. The cognitive information processing framework presented here will aid health policy decision makers by identifying how their decisions might be subtly influenced by non-rational factors. In this paper, we identify some of the biases and potential intervention points and provide some initial suggestions about how the EBDM/EBPM process can be improved.
PMCID: PMC2885987  PMID: 20504357
12.  Development and pilot testing of a decision aid for surrogates of patients with prolonged mechanical ventilation 
Critical care medicine  2012;40(8):10.1097/CCM.0b013e3182536a63.
Shared decision making is inadequate in intensive care units (ICUs). Decision aids can improve decision making quality, though their role in an ICU setting is unclear. We aimed to develop and pilot test a decision aid for shared decision makers of patients undergoing prolonged mechanical ventilation.
ICUs at three medical centers.
53 surrogate decision makers and 58 physicians.
Design and interventions
We developed the decision aid using defined methodological guidelines. After an iterative revision process, formative cognitive testing was performed among surrogate-physician dyads. Next, we compared the decision aid to usual care control in a prospective, before/after design study.
Measurements and main results
Primary outcomes were physician-surrogate discordance for expected patient survival, comprehension of relevant medical information, and the quality of communication. Compared to control, the intervention group had lower surrogate-physician discordance (7 [10] vs 43 [21]), greater comprehension (11.4 [0.7] vs 6.1 [3.7]), and improved quality of communication (8.7 [1.3] vs 8.4 [1.3]) (all p<0.05) post-intervention. Hospital costs were lower in the intervention group ($110,609 vs $178,618; p=0.044); mortality did not differ by group (38% vs 50%, p=0.95). 94% of surrogates and 100% of physicians reported that the decision aid was useful in decision making.
We developed a prolonged mechanical ventilation decision aid that is feasible, acceptable, and associated with both improved decision making quality and less resource utilization. Further evaluation using a randomized controlled trial design is needed to evaluate the decision aid's effect on long-term patient and surrogate outcomes.
PMCID: PMC3826165  PMID: 22635048
decision aid; decision making; respiration; artificial; critical illness; prolonged mechanical ventilation
13.  Learning to maximize reward rate: a model based on semi-Markov decision processes 
When animals have to make a number of decisions during a limited time interval, they face a fundamental problem: how much time they should spend on each decision in order to achieve the maximum possible total outcome. Deliberating more on one decision usually leads to more outcome but less time will remain for other decisions. In the framework of sequential sampling models, the question is how animals learn to set their decision threshold such that the total expected outcome achieved during a limited time is maximized. The aim of this paper is to provide a theoretical framework for answering this question. To this end, we consider an experimental design in which each trial can come from one of the several possible “conditions.” A condition specifies the difficulty of the trial, the reward, the penalty and so on. We show that to maximize the expected reward during a limited time, the subject should set a separate value of decision threshold for each condition. We propose a model of learning the optimal value of decision thresholds based on the theory of semi-Markov decision processes (SMDP). In our model, the experimental environment is modeled as an SMDP with each “condition” being a “state” and the value of decision thresholds being the “actions” taken in those states. The problem of finding the optimal decision thresholds then is cast as the stochastic optimal control problem of taking actions in each state in the corresponding SMDP such that the average reward rate is maximized. Our model utilizes a biologically plausible learning algorithm to solve this problem. The simulation results show that at the beginning of learning the model choses high values of decision threshold which lead to sub-optimal performance. With experience, however, the model learns to lower the value of decision thresholds till finally it finds the optimal values.
PMCID: PMC4033239  PMID: 24904252
semi-Markov decision process; average reward rate maximization; speed-accuracy trade-off; reinforcement learning; sequential sampling models; diffusion process; decision threshold
14.  Discussing Uncertainty and Risk in Primary Care: Recommendations of a Multi-Disciplinary Panel Regarding Communication Around Prostate Cancer Screening 
Journal of General Internal Medicine  2013;28(11):1410-1419.
Shared decision making improves value-concordant decision-making around prostate cancer screening (PrCS). Yet, PrCS discussions remain complex, challenging and often emotional for physicians and average-risk men.
In July 2011, the Centers for Disease Control and Prevention convened a multidisciplinary expert panel to identify priorities for funding agencies and development groups to promote evidence-based, value-concordant decisions between men at average risk for prostate cancer and their physicians.
Two-day multidisciplinary expert panel in Atlanta, Georgia, with structured discussions and formal consensus processes.
Sixteen panelists represented diverse specialties (primary care, medical oncology, urology), disciplines (sociology, communication, medical education, clinical epidemiology) and market sectors (patient advocacy groups, Federal funding agencies, guideline-development organizations).
Panelists used guiding interactional and evaluation models to identify and rate strategies that might improve PrCS discussions and decisions for physicians, patients and health systems/society. Efficacy was defined as the likelihood of each strategy to impact outcomes. Effort was defined as the relative amount of effort to develop, implement and sustain the strategy. Each strategy was rated (1–7 scale; 7 = maximum) using group process software (ThinkTankTM). For each group, intervention strategies were grouped as financial/regulatory, educational, communication or attitudinal levers. For each strategy, barriers were identified.
Highly ranked strategies to improve value-concordant shared decision-making (SDM) included: changing outpatient clinic visit reimbursement to reward SDM; development of evidence-based, technology-assisted, point-of-service tools for physicians and patients; reframing confusing prostate cancer screening messages; providing pre-visit decision support interventions; utilizing electronic health records to promote benchmarking/best practices; providing additional training for physicians around value-concordant decision-making; and using re-accreditation to promote training.
Conference outcomes present an expert consensus of strategies likely to improve value-concordant prostate cancer screening decisions. In addition, the methodology used to obtain agreement provides a model of successful collaboration around this and future controversial cancer screening issues, which may be of interest to funding agencies, educators and policy makers.
Electronic supplementary material
The online version of this article (doi:10.1007/s11606-013-2419-z) contains supplementary material, which is available to authorized users.
PMCID: PMC3797347  PMID: 23649782
prostate cancer screening; men’s health; shared decision-making; communication; funding priorities; risk
15.  Why integrated care? Conclusions from an international expert survey 
Exploring the indicators most crucial for actors in health and social care services and identifying those which lead up to the initiation and implementation of integrated care. By analysing the reasons why integrated care is chosen and initiated, the underlying mechanisms and decision-making processes of integrated care are highlighted.
Even though integrated care projects and programmes are implemented in very different settings and health systems one can find the same main actors everywhere. They share similar goals and principles which are universal and not unique to one specific country or system. Hence, it is likely that the type of actor, i.e. health insurance, is more influential on the decision-making process than the health system and surrounding setting. In other words, it was stipulated that a health insurer in the Netherlands will have similar priorities for integrated care as a health insurer in Singapore and hence will choose similar integrated care approaches.
On the other hand, system administrators can strongly incentivise or discourage innovation and cooperation within the health and social care dominions, i.e. by passing laws or (re)organising the financing system. It is suggested that integrated care is implemented more widely in countries where stakeholders receive targeted incentives and fragmentation within the system is less pronounced.
The hypotheses were tested using an international expert questionnaire, contacting integrated care managers and decision-makers in Europe, North America and Australasia. The results were quantitatively analyzed using SPSS.
Results and conclusions
Integrated care is stipulated to offer solutions to the demographic changes, the concurring increase of chronic disease and the pressures on restricted resources experienced in the modern health systems of today. The survey conducted suggested a more diversified picture regarding the expectations and priorities set into the concept by health care decision-makers. While all of these challenges are perceived by them, their undisputed priority is on the introduction and enhancement of management structures on all levels. They do not value financial restrictions as severely as may have been anticipated and they revealed that neither active patient participation nor the introduction of outcome measurement are high priorities when introducing integrated care. The findings also suggest that the same stakeholders follow similar priorities disregarding the different health systems they act in.
In conclusion, two levels of priority setting have been identified as highly important for integrated care initiation: on the policy level, prioritisation of integrated care along with specific promotion measures influence decision-making; on the organisational level, the need for clear structures and better management tools both in the organisation itself and in the management of the targeted patient population, reflect the highest priorities for the decision-making process.
The response rate was 18% with the majority of responses coming from Germany, The Netherlands, UK and the USA.
Integrated care has come a long way from the first projects implemented by health insurance organisations to a colourful array of projects and permanent programmes, spanning from local to national level and from very targeted to very broad inclusion criteria, initiated, owned and financed by a mix of all stakeholders and agents in the system. Hence, integrated care developed into a ‘Jack-of-all-trades’ approach, stimulating change and confusion at the same time. Still, in most countries, it has not entered mainstream health care organisation and management and continues to struggle in proving its value. Asking why integrated care is initiated and implemented in the first place helps understand the priorities and objectives of decision-makers in health care, and hence can lead to a more targeted development and application of integrated care models.
PMCID: PMC3184810
decision-making; priority setting in integrated care; stakeholder-specific differences
16.  Uncertainty and Equipoise: At Interplay Between Epistemology, Decision-Making and Ethics 
In recent years, various authors have proposed that the concept of equipoise be abandoned since it conflates the practice of clinical care with clinical research. At the same time, the equipoise opponents acknowledge the necessity of clinical research if there are unresolved uncertainties about the effects of proposed healthcare interventions. Since equipoise represents just one measure of uncertainty, proposals to abandon equipoise while maintaining a requirement for addressing uncertainties are contradictory and ultimately not valid. As acknowledgment and articulation of uncertainties represent key scientific and moral requirements for human experimentation, the concept of equipoise remains the most useful framework to link the theory of human experimentation with the theory of rational choice. In this paper, I show how uncertainty (equipoise) is at the intersection between epistemology, decision-making and ethics of clinical research. In particular, I show how our formulation of responses to uncertainties of hoped-for benefits and unknown harms of testing is a function of the way humans cognitively process information. This approach is based on the view that considerations of ethics and rationality cannot be separated. I analyze the response to uncertainties as it relates to the dual-processing theory, which postulates that rational approach to (clinical research) decision-making depends both on analytical, deliberative processes embodied in scientific method (system II) and “good” human intuition (system I). Ultimately, our choices can only become wiser if we understand a close and intertwined relationship between irreducible uncertainty, inevitable errors, and unavoidable injustice.
PMCID: PMC3183244  PMID: 21817885
Clinical Equipoise; Informed Consent; Clinical Research; Research Ethics
17.  Interactions between Non-Physician Clinicians and Industry: A Systematic Review 
PLoS Medicine  2013;10(11):e1001561.
In a systematic review of studies of interactions between non-physician clinicians and industry, Quinn Grundy and colleagues found that many of the issues identified for physicians' industry interactions exist for non-physician clinicians.
Please see later in the article for the Editors' Summary
With increasing restrictions placed on physician–industry interactions, industry marketing may target other health professionals. Recent health policy developments confer even greater importance on the decision making of non-physician clinicians. The purpose of this systematic review is to examine the types and implications of non-physician clinician–industry interactions in clinical practice.
Methods and Findings
We searched MEDLINE and Web of Science from January 1, 1946, through June 24, 2013, according to PRISMA guidelines. Non-physician clinicians eligible for inclusion were: Registered Nurses, nurse prescribers, Physician Assistants, pharmacists, dieticians, and physical or occupational therapists; trainee samples were excluded. Fifteen studies met inclusion criteria. Data were synthesized qualitatively into eight outcome domains: nature and frequency of industry interactions; attitudes toward industry; perceived ethical acceptability of interactions; perceived marketing influence; perceived reliability of industry information; preparation for industry interactions; reactions to industry relations policy; and management of industry interactions. Non-physician clinicians reported interacting with the pharmaceutical and infant formula industries. Clinicians across disciplines met with pharmaceutical representatives regularly and relied on them for practice information. Clinicians frequently received industry “information,” attended sponsored “education,” and acted as distributors for similar materials targeted at patients. Clinicians generally regarded this as an ethical use of industry resources, and felt they could detect “promotion” while benefiting from industry “information.” Free samples were among the most approved and common ways that clinicians interacted with industry. Included studies were observational and of varying methodological rigor; thus, these findings may not be generalizable. This review is, however, the first to our knowledge to provide a descriptive analysis of this literature.
Non-physician clinicians' generally positive attitudes toward industry interactions, despite their recognition of issues related to bias, suggest that industry interactions are normalized in clinical practice across non-physician disciplines. Industry relations policy should address all disciplines and be implemented consistently in order to mitigate conflicts of interest and address such interactions' potential to affect patient care.
Please see later in the article for the Editors' Summary
Editors' Summary
Making and selling health care goods (including drugs and devices) and services is big business. To maximize the profits they make for their shareholders, companies involved in health care build relationships with physicians by providing information on new drugs, organizing educational meetings, providing samples of their products, giving gifts, and holding sponsored events. These relationships help to keep physicians informed about new developments in health care but also create the potential for causing harm to patients and health care systems. These relationships may, for example, result in increased prescription rates of new, heavily marketed medications, which are often more expensive than their generic counterparts (similar unbranded drugs) and that are more likely to be recalled for safety reasons than long-established drugs. They may also affect the provision of health care services. Industry is providing an increasingly large proportion of routine health care services in many countries, so relationships built up with physicians have the potential to influence the commissioning of the services that are central to the treatment and well-being of patients.
Why Was This Study Done?
As a result of concerns about the tension between industry's need to make profits and the ethics underlying professional practice, restrictions are increasingly being placed on physician–industry interactions. In the US, for example, the Physician Payments Sunshine Act now requires US manufacturers of drugs, devices, and medical supplies that participate in federal health care programs to disclose all payments and gifts made to physicians and teaching hospitals. However, other health professionals, including those with authority to prescribe drugs such as pharmacists, Physician Assistants, and nurse practitioners are not covered by this legislation or by similar legislation in other settings, even though the restructuring of health care to prioritize primary care and multidisciplinary care models means that “non-physician clinicians” are becoming more numerous and more involved in decision-making and medication management. In this systematic review (a study that uses predefined criteria to identify all the research on a given topic), the researchers examine the nature and implications of the interactions between non-physician clinicians and industry.
What Did the Researchers Do and Find?
The researchers identified 15 published studies that examined interactions between non-physician clinicians (Registered Nurses, nurse prescribers, midwives, pharmacists, Physician Assistants, and dieticians) and industry (corporations that produce health care goods and services). They extracted the data from 16 publications (representing 15 different studies) and synthesized them qualitatively (combined the data and reached word-based, rather than numerical, conclusions) into eight outcome domains, including the nature and frequency of interactions, non-physician clinicians' attitudes toward industry, and the perceived ethical acceptability of interactions. In the research the authors identified, non-physician clinicians reported frequent interactions with the pharmaceutical and infant formula industries. Most non-physician clinicians met industry representatives regularly, received gifts and samples, and attended educational events or received educational materials (some of which they distributed to patients). In these studies, non-physician clinicians generally regarded these interactions positively and felt they were an ethical and appropriate use of industry resources. Only a minority of non-physician clinicians felt that marketing influenced their own practice, although a larger percentage felt that their colleagues would be influenced. A sizeable proportion of non-physician clinicians questioned the reliability of industry information, but most were confident that they could detect biased information and therefore rated this information as reliable, valuable, or useful.
What Do These Findings Mean?
These and other findings suggest that non-physician clinicians generally have positive attitudes toward industry interactions but recognize issues related to bias and conflict of interest. Because these findings are based on a small number of studies, most of which were undertaken in the US, they may not be generalizable to other countries. Moreover, they provide no quantitative assessment of the interaction between non-physician clinicians and industry and no information about whether industry interactions affect patient care outcomes. Nevertheless, these findings suggest that industry interactions are normalized (seen as standard) in clinical practice across non-physician disciplines. This normalization creates the potential for serious risks to patients and health care systems. The researchers suggest that it may be unrealistic to expect that non-physician clinicians can be taught individually how to interact with industry ethically or how to detect and avert bias, particularly given the ubiquitous nature of marketing and promotional materials. Instead, they suggest, the environment in which non-physician clinicians practice should be structured to mitigate the potentially harmful effects of interactions with industry.
Additional Information
Please access these websites via the online version of this summary at
This study is further discussed in a PLOS Medicine Perspective by James S. Yeh and Aaron S. Kesselheim
The American Medical Association provides guidance for physicians on interactions with pharmaceutical industry representatives, information about the Physician Payments Sunshine Act, and a toolkit for preparing Physician Payments Sunshine Act reports
The International Council of Nurses provides some guidance on industry interactions in its position statement on nurse-industry relations
The UK General Medical Council provides guidance on financial and commercial arrangements and conflicts of interest as part of its good medical practice website, which describes what is required of all registered doctors in the UK
Understanding and Responding to Pharmaceutical Promotion: A Practical Guide is a manual prepared by Health Action International and the World Health Organization that schools of medicine and pharmacy can use to train students how to recognize and respond to pharmaceutical promotion.
The Institute of Medicine's Report on Conflict of Interest in Medical Research, Education, and Practice recommends steps to identify, limit, and manage conflicts of interest
The University of California, San Francisco, Office of Continuing Medical Education offers a course called Marketing of Medicines
PMCID: PMC3841103  PMID: 24302892
18.  Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research 
PLoS Medicine  2013;10(6):e1001473.
In a systematic review of qualitative research, Katie Gallacher and colleagues examine the evidence related to treatment burden after stroke from the patient perspective.
Please see later in the article for the Editors' Summary
Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.
Methods and Findings
The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.
Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
Systematic Review Registration
International Prospective Register of Systematic Reviews CRD42011001123
Please see later in the article for the Editors' Summary
Editors' Summary
Every year, 15 million people have a stroke. About 5 million of these people die within a few days, and another 5 million are left disabled. Stroke occurs when the blood supply of the brain is suddenly interrupted by a blood vessel in the brain being blocked by a blood clot (ischemic stroke) or bursting (hemorrhagic stroke). Deprived of the oxygen normally carried to them by the blood, the brain cells near the blockage die. The symptoms of stroke depend on which part of the brain is damaged but include sudden weakness or paralysis along one side of the body, vision loss in one or both eyes, and confusion or trouble speaking or understanding speech. Anyone experiencing these symptoms should seek immediate medical attention because prompt treatment can limit the damage to the brain. In the longer term, post-stroke rehabilitation can help individuals overcome the physical disabilities caused by stroke, and drugs that thin the blood, reduce blood pressure and reduce cholesterol (major risk factors for stroke) alongside behavioral counseling can reduce the risk of a second stroke.
Why Was This Study Done?
Treatment for, and rehabilitation from, stroke is a lengthy process that requires considerable personal investment from the patient. The term “treatment burden” describes the self-care practices that patients with stroke and other chronic diseases must perform to follow the complicated management strategies that have been developed for these conditions. Unfortunately, treatment burden can overwhelm patients. They may be unable to cope with the multiple demands placed on them by health-care providers and systems for their self-care, a situation that leads to poor adherence to therapies and poor outcomes. For example, patients may find it hard to complete all the exercises designed to help them regain full movement of their limbs after a stroke. Treatment burden has been poorly examined in relation to stroke. Here, the researchers identify and describe the treatment burden in stroke by undertaking a systematic review (a study that uses predefined criteria to identify all the literature on a given topic) of qualitative studies on the patient experience of stroke management. Qualitative studies collect non-quantitative data so, for example, a qualitative study on stroke treatment might ask people how the treatment made them feel whereas a quantitative study might compare clinical outcomes between those receiving and not receiving the treatment.
What Did the Researchers Do and Find?
The researchers identified 69 qualitative studies dealing with the experiences of stroke management of adult patients and analyzed the data in these papers using framework synthesis—an approach that divides data into thematic categories. Specifically, the researchers used a coding framework informed by normalization process theory, a sociological theory of the implementation, embedding and integration of tasks and practices; embedding is the process of making tasks and practices a routine part of everyday life and integration refers to sustaining these embedded practices. The researchers identified four main areas of treatment burden for stroke: making sense of stroke management and planning care; interacting with others, including health care professionals, family and other patients with stroke; enacting management strategies (including enduring institutional admissions, managing stroke in the community, reintegrating into society and adjusting to life after stroke); and reflecting on management to make decisions about self-care. Moreover, they identified problems in all these areas, including inadequate provision of information, poor communication with health-care providers, and unsatisfactory inpatient care.
What Do These Findings Mean?
These findings show that stroke management is extremely demanding for patients and is influenced by both the micro and macro organization of health services. At the micro organizational level, fragmented care and poor communication between patients and clinicians and between health-care providers can mean patients are ill equipped to organize their care and develop coping strategies, which makes adherence to management strategies less likely. At the macro organizational level, it can be hard for patients to obtain the practical and financial help they need to manage their stroke in the community. Overall, these findings suggest that care provision for stroke needs to be transformed so that the needs of patients rather than the needs of health-care systems are prioritized. Further work is required, however, to understand how the patient experience of treatment burden is affected by the clinical characteristics of stroke, by disability level, and by other co-existing diseases. By undertaking such work, it should be possible to generate a patient-reported outcome measure of treatment burden that, if used by policy makers and health-care providers, has the potential to improve the quality of stroke care.
Additional Information
Please access these Web sites via the online version of this summary at
The US National Institute of Neurological Disorders and Stroke provides information about all aspects of stroke (in English and Spanish); its Know Stroke site provides educational materials about stroke prevention, treatment, and rehabilitation including personal stories (in English and Spanish); the US National Institutes of Health SeniorHealth website has additional information about stroke
The Internet Stroke Center provides detailed information about stroke for patients, families, and health professionals (in English and Spanish)
The UK National Health Service Choices website also provides information about stroke for patients and their families, including personal stories
MedlinePlus has links to additional resources about stroke (in English and Spanish)
The UK not-for-profit website Healthtalkonline provides personal stories about stroke
Wikipedia provides information on the burden of treatment and on the normalization process theory (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
PMCID: PMC3692487  PMID: 23824703
19.  A Model of Reward- and Effort-Based Optimal Decision Making and Motor Control 
PLoS Computational Biology  2012;8(10):e1002716.
Costs (e.g. energetic expenditure) and benefits (e.g. food) are central determinants of behavior. In ecology and economics, they are combined to form a utility function which is maximized to guide choices. This principle is widely used in neuroscience as a normative model of decision and action, but current versions of this model fail to consider how decisions are actually converted into actions (i.e. the formation of trajectories). Here, we describe an approach where decision making and motor control are optimal, iterative processes derived from the maximization of the discounted, weighted difference between expected rewards and foreseeable motor efforts. The model accounts for decision making in cost/benefit situations, and detailed characteristics of control and goal tracking in realistic motor tasks. As a normative construction, the model is relevant to address the neural bases and pathological aspects of decision making and motor control.
Author Summary
Behavior is made of decisions and actions. The decisions are based on the costs and benefits of potential actions, and the chosen actions are executed through the proper control of body segments. The corresponding processes are generally considered in separate theories of decision making and motor control, which cannot explain how the actual costs and benefits of a chosen action can be consistent with the expected costs and benefits involved at the decision stage. Here, we propose an overarching optimal model of decision and motor control based on the maximization of a mixed function of costs and benefits. The model provides a unified account of decision in cost/benefit situations (e.g. choice between small reward/low effort and large reward/high effort options), and motor control in realistic motor tasks. The model appears suitable to advance our understanding of the neural bases and pathological aspects of decision making and motor control.
PMCID: PMC3464194  PMID: 23055916
20.  Finding common ground to achieve a “good death”: family physicians working with substitute decision-makers of dying patients. A qualitative grounded theory study 
BMC Family Practice  2013;14:14.
Substitute decision-makers are integral to the care of dying patients and make many healthcare decisions for patients. Unfortunately, conflict between physicians and surrogate decision-makers is not uncommon in end-of-life care and this could contribute to a “bad death” experience for the patient and family. We aim to describe Canadian family physicians’ experiences of conflict with substitute decision-makers of dying patients to identify factors that may facilitate or hinder the end-of-life decision-making process. This insight will help determine how to best manage these complex situations, ultimately improving the overall care of dying patients.
Grounded Theory methodology was used with semi-structured interviews of family physicians in Edmonton, Canada, who experienced conflict with substitute decision-makers of dying patients. Purposeful sampling included maximum variation and theoretical sampling strategies. Interviews were audio-taped, and transcribed verbatim. Transcripts, field notes and memos were coded using the constant-comparative method to identify key concepts until saturation was achieved and a theoretical framework emerged.
Eleven family physicians with a range of 3 to 40 years in clinical practice participated.
The family physicians expressed a desire to achieve a “good death” and described their role in positively influencing the experience of death.
Finding Common Ground to Achieve a “Good Death” for the Patient emerged as an important process which includes 1) Building Mutual Trust and Rapport through identifying key players and delivering manageable amounts of information, 2) Understanding One Another through active listening and ultimately, and 3) Making Informed, Shared Decisions. Facilitators and barriers to achieving Common Ground were identified. Barriers were linked to conflict. The inability to resolve an overt conflict may lead to an impasse at any point. A process for Resolving an Impasse is described.
A novel framework for developing Common Ground to manage conflicts during end-of-life decision-making discussions may assist in achieving a “good death”. These results could aid in educating physicians, learners, and the public on how to achieve productive collaborative relationships during end-of-life decision-making for dying patients, and ultimately improve their deaths.
PMCID: PMC3556163  PMID: 23339822
Family medicine; Advance care planning; Conflict; Substitute decision-makers; Good death
21.  Decision-making for long-term tube-feeding in cognitively impaired elderly people 
BACKGROUND: The decision to start long-term tube-feeding in elderly people is complex. The process by which such decisions are made is not well understood. The authors examined the factors involved in the decision to start long-term tube-feeding in cognitively impaired older people from the perspective of the substitute decision-maker. METHODS: A telephone survey was administered to the substitute decision-makers of tube-fed patients over 65 years old in chronic care facilities in Ottawa. Subjects were recruited from September 1997 to March 1998. Patients were incapable of making their own decisions about tube-feeding. Data were collected on sociodemographic factors, patients' health status, advance directives, communication between the substitute decision-maker and the health care team, and the decision-maker's perceived goals of tube-feeding and satisfaction with the decision regarding tube-feeding. RESULTS: Among the 57 cases in which the patient was eligible for inclusion in the study, 46 substitute decision-makers agreed to participate. Most of the patients had not given advance directives, and only 26 substitute decision-makers (56.5%) were confident that the patient would want to be tube-fed. A physician spoke with the substitute decision-maker about tube-feeding for 15 minutes or less in 17 cases (37.0%) and not at all in 13 cases (28.3%). Most of the substitute decision-makers (39 [84.8%]) felt that they understood the benefits of tube-feeding, but less than half (21 [45.7%]) felt that they understood the risks. The prevention of aspiration and the prolongation of life were the medical benefits most often cited as reasons for tube-feeding. Just over half (24 [52.2%]) of the substitute decision-makers felt that they had received adequate support from the health care team in making the decision. Substitute decision-makers of patients less than 75 years old were more likely than those of older patients to feel supported (odds ratio [OR] 4.2, 95% confidence interval [CI] 1.0-17.9). Compared with the physician's making the decision independently, substitute decision-makers felt more supported if they primarily made the decision (OR 16.5, 95% CI 2.7-101.4) or if they made the decision together with the physician (OR 5.3, 95% CI 1.0-27.9). Most (20 [43.5%]) of the substitute decision-makers did not feel that tube-feeding improved the patient's quality of life, and less than half (21 [45.7%]) indicated that they would choose the intervention for themselves. INTERPRETATION: The substitute decision-making process for tube-feeding in cognitively impaired elderly people is limited by a need for advance directives, lack of confidence in substituted judgement and poor communication of information to the substitute decision-maker by the health care team.
PMCID: PMC1230404  PMID: 10410631
22.  The ASTUTE Health study protocol: Deliberative stakeholder engagements to inform implementation approaches to healthcare disinvestment 
Governments and other payers are yet to determine optimal processes by which to review the safety, effectiveness, and cost-effectiveness of technologies and procedures that are in active use within health systems, and rescind funding (partially or fully) from those that display poor profiles against these parameters. To further progress a disinvestment agenda, a model is required to support payers in implementing disinvestment in a transparent manner that may withstand challenge from vested interests and concerned citizens. Combining approaches from health technology assessment and deliberative democratic theory, this project seeks to determine if and how wide stakeholder engagement can contribute to improved decision-making processes, wherein the views of both vested and non-vested stakeholders are seen to contribute to informing policy implementation within a disinvestment context.
Systematic reviews pertaining to illustrative case studies were developed and formed the evidence base for discussion. Review findings were presented at a series of deliberative, evidence-informed stakeholder engagements, including partisan (clinicians and consumers) and non-partisan (representative community members) stakeholders. Participants were actively facilitated towards identifying shared and dissenting perspectives regarding public funding policy for each of the case studies and developing their own funding models in response to the evidence presented. Policy advisors will subsequently be invited to evaluate disinvestment options based on the scientific and colloquial evidence presented to them, and to explore the value of this information to their decision-making processes with reference to disinvestment.
Analysis of the varied outputs of the deliberative engagements will contribute to the methodological development around how to best integrate scientific and colloquial evidence for consideration by policy advisors. It may contribute to the legitimization of broad and transparent stakeholder engagement in this context. It is anticipated that decision making will benefit from the knowledge delivered through informed deliberation with engaged stakeholders, and this will be explored through interviews with key decision makers.
PMCID: PMC3520863  PMID: 23088222
Public participation; User involvement; Disinvestment; Policy
23.  “The problem often is that we do not have a family spokesperson but a spokesgroup”: Family Member Informal Roles in End-of-Life Decision-Making in Adult ICUs 
To support the process of effective family decision-making, it is important to recognize and understand informal roles various family members may play in the end-of-life decision-making process.
The purpose of this study was to describe some informal roles consistently enacted by family members involved in the process of end-of-life decision-making in intensive care units (ICUs).
Ethnographic study. Data were collected via participant observation with field notes and semi-structured interviews on four ICUs in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical ICU, a surgical ICU, a burn and trauma ICU, and a cardiovascular ICU.
Participants included health care clinicians, patients, and family members.
Informal roles for family members consistently observed were:, Primary Caregiver, Primary Decision Maker, Family Spokesperson, Out-of-Towner, Patient Wishes Expert, Protector, Vulnerable Member, and Health Care Expert. The identified informal roles were part of family decision making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision-making within the family system, and between the family and health care domains.
These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these family member informal roles can assist clinicians to recognize and understand the functions of these roles in family decision making at the end-of-life, and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.
PMCID: PMC3615559  PMID: 22210699
informal family roles; family roles; end-of-life decision making; intensive care units; critical care; adults
24.  How physicians face ethical difficulties: a qualitative analysis 
Journal of Medical Ethics  2005;31(1):7-14.
Background: Physicians face ethical difficulties daily, yet they seek ethics consultation infrequently. To date, no systematic data have been collected on the strategies they use to resolve such difficulties when they do so without the help of ethics consultation. Thus, our understanding of ethical decision making in day to day medical practice is poor. We report findings from the qualitative analysis of 310 ethically difficult situations described to us by physicians who encountered them in their practice. When facing such situations, the physicians sought to avoid conflict, obtain assistance, and protect the integrity of their conscience and reputation, as well as the integrity of the group of people who participated in the decisions. These goals could conflict with each other, or with ethical goals, in problematic ways. Being aware of these potentially conflicting goals may help physicians to resolve ethical difficulties more effectively. This awareness should also contribute to informing the practice of ethics consultation.
Objective: To identify strategies used by physicians in dealing with ethical difficulties in their practice.
Design, setting, and participants: National survey of internists, oncologists, and intensive care specialists by computer assisted telephone interviews (n = 344, response rate = 64%). As part of this survey, we asked physicians to tell us about a recent ethical dilemma they had encountered in their medical practice. Transcripts of their open-ended responses were analysed using coding and analytical elements of the grounded theory approach.
Main measurements: Strategies and approaches reported by respondents as part of their account of a recent ethical difficulty they had encountered in their practice.
Results: When faced with ethical difficulties, the physicians avoided conflict and looked for assistance, which contributed to protecting, or attempting to protect, the integrity of their conscience and reputation, as well as the integrity of the group of people who participated in the decisions. These efforts sometimes reinforced ethical goals, such as following patients' wishes or their best interests, but they sometimes competed with them. The goals of avoiding conflict, obtaining assistance, and protecting the respondent's integrity and that of the group of decision makers could also compete with each other.
Conclusion: In resolving ethical difficulties in medical practice, internists entertained competing goals that they did not always successfully achieve. Additionally, the means employed were not always the most likely to achieve those aims. Understanding these aspects of ethical decision making in medical practice is important both for physicians themselves as they struggle with ethical difficulties and for the ethics consultants who wish to help them in this process.
PMCID: PMC1734016  PMID: 15634746
25.  A Canonical Theory of Dynamic Decision-Making 
Decision-making behavior is studied in many very different fields, from medicine and economics to psychology and neuroscience, with major contributions from mathematics and statistics, computer science, AI, and other technical disciplines. However the conceptualization of what decision-making is and methods for studying it vary greatly and this has resulted in fragmentation of the field. A theory that can accommodate various perspectives may facilitate interdisciplinary working. We present such a theory in which decision-making is articulated as a set of canonical functions that are sufficiently general to accommodate diverse viewpoints, yet sufficiently precise that they can be instantiated in different ways for specific theoretical or practical purposes. The canons cover the whole decision cycle, from the framing of a decision based on the goals, beliefs, and background knowledge of the decision-maker to the formulation of decision options, establishing preferences over them, and making commitments. Commitments can lead to the initiation of new decisions and any step in the cycle can incorporate reasoning about previous decisions and the rationales for them, and lead to revising or abandoning existing commitments. The theory situates decision-making with respect to other high-level cognitive capabilities like problem solving, planning, and collaborative decision-making. The canonical approach is assessed in three domains: cognitive and neuropsychology, artificial intelligence, and decision engineering.
PMCID: PMC3613596  PMID: 23565100
decision-making; autonomous agents; clinical decision-making; unified theories of cognition; cognitive systems

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