Foreigners traveling to the U.S. for transplantation may adversely affect organ donation: a national survey.

The aims of this study were (1) to determine attitudes among the American public regarding foreigners coming to the United States for the purposes of transplantation, and (2) to investigate the impact this practice might have on the public's willingness to donate organs. A probability-based national sample of adults age > or =18 was asked whether people should be allowed to travel to the United States to receive a transplant, and whether this practice would discourage the respondents from becoming an organ donor. Among 1049 participants, 30% (95% CI 25-34%) felt that people should not be allowed to travel to the United States to receive a deceased donor transplant, whereas 28% felt this would be acceptable in some cases. Thirty-eight percent (95% CI 33-42%) indicated that this practice might prevent them from becoming an organ donor. In conclusion, deceased-donor transplantation of foreigners is opposed by many Americans. Media coverage of this practice has the potential to adversely affect organ donation.

Attitudes of the American public toward organ donation after uncontrolled (sudden) cardiac death.

Concerns about public support for organ donation after cardiac death have hindered expansion of this practice, particularly rapid organ recovery in the context of uncontrolled (sudden) cardiac death (uDCD). A nationally representative Internet-based panel was provided scenarios describing donation in the context of brain death, controlled cardiac death and uncontrolled cardiac death. Participants were randomized to receive questions about trust in the medical system before or after the rapid organ recovery scenario. Among 1631 panelists, 1049 (64%) completed the survey. Participants expressed slightly more willingness to donate in the context of controlled and uncontrolled cardiac death than after brain death (70% and 69% vs. 66%, respectively, p < 0.01). Eighty percent of subjects (95% CI 77-84%) would support having a rapid organ recovery program in their community, though 83% would require family consent or a signed donor card prior to invasive procedures for organ preservation. The idea of uDCD slightly decreased trust in the medical system from 59% expressing trust to 51% (p = 0.02), but did not increase belief that a signed donor card would interfere with medical care (28% vs. 32%, p = 0.37). These findings provide support for the careful expansion of uDCD, albeit with formal consent prior to organ preservation.

Can a moral reasoning exercise improve response quality to surveys of healthcare priorities?

OBJECTIVE: To determine whether a moral reasoning exercise can improve response quality to surveys of healthcare priorities METHODS: A randomised internet survey focussing on patient age in healthcare allocation was repeated twice. From 2574 internet panel members from the USA and Canada, 2020 (79%) completed the baseline survey and 1247 (62%) completed the follow-up. We elicited respondent preferences for age via five allocation scenarios. In each scenario, a hypothetical health planner made a decision to fund one of two programmes identical except for average patient age (35 vs 65 years). Half of the respondents (intervention group) were randomly assigned to receive an additional moral reasoning exercise. Responses were elicited again 7 weeks later. Numerical scores ranging from -5 (strongest preference for younger patients) to +5 (strongest preference for older patients); 0 indicates no age preference. Response quality was assessed by propensity to choose extreme or neutral values, internal consistency, temporal stability and appeal to prejudicial factors. RESULTS: With the exception of a scenario offering palliative care, respondents preferred offering scarce resources to younger patients in all clinical contexts. This preference for younger patients was weaker in the intervention group. Indicators of response quality favoured the intervention group. CONCLUSIONS: Although people generally prefer allocating scarce resources to young patients over older ones, these preferences are significantly reduced when participants are encouraged to reflect carefully on a wide range of moral principles. A moral reasoning exercise is a promising strategy to improve response quality to surveys of healthcare priorities.

Do incentives matter? Providing benefits to families of organ donors.

Whether the number of organs available for transplant would be positively or negatively affected by providing benefits to families of organ donors has been debated by policymakers, ethicists and the transplant community at large. We designed a telephone survey to measure public opinion regarding the use of benefits in general and of five types in particular: funeral benefits, charitable contributions, travel/lodging expenses, direct payments and medical expenses. Of the 971 adults who completed the survey (response rate = 69%), all were from Pennsylvania households, 45.6% were registered organ donors, and 51.7% were nonwhite. Although 59% of respondents favored the general idea of incentives, support for specific incentives ranged from 53% (direct payment) to 84% (medical expenses). Among those registered as donors, more nonwhites than whites supported funeral benefits (88% vs. 81%; p = 0.038), direct payment (63% vs. 41%; p < 0.001) and medical expenses (92% vs. 84%; p = 0.013). Among those not registered as donors, more nonwhites supported direct payment (64% vs. 46%; p = 0.001). Most respondents believed that benefits would not influence their own behavior concerning donation but would influence the behavior of others. While benefits appear to be favored, their true impact can only be assessed through pilot programs.

Physicians' willingness to participate in the process of lethal injection for capital punishment.

BACKGROUND: It has been found that physicians condone colleague involvement in capital punishment. Physicians' own willingness to participate has not been explored. OBJECTIVE: To examine physicians' willingness to be involved in cases of capital punishment. DESIGN: Survey exploring physicians' willingness to participate in 10 aspects of capital punishment by lethal injection, 8 of which are disallowed by the American Medical Association. SETTING: United States. PARTICIPANTS: 1000 randomly selected practicing physicians. MEASUREMENTS: Questions assessing willingness to be involved in and attitudes toward capital punishment. RESULTS: 41% of respondents indicated that they would perform at least one action disallowed by the American Medical Association; 25% would perform five or more disallowed actions. Perceived duty to society (P < 0.001), approval of the death penalty (P < 0.001), and approval of assisted suicide (P = 0.015) correlated with increased willingness to perform disallowed actions. Only 3% of respondents knew of any guidelines on this issue. CONCLUSIONS: Despite medical society policies, many physicians would be willing to be involved in the execution of adults. The medical profession needs to be better informed about the ethical issues involved in physician participation in capital punishment.

Between two worlds medical student perceptions of humor and slang in the hospital setting.

OBJECTIVE: Residents frequently use humor and slang at the expense of patients on the clinical wards. We studied how medical students react to and interpret the "appropriateness" of derogatory and cynical humor and slang in a clinical setting. DESIGN: Semistructured, in-depth interviews. SETTING: Informal meeting spaces. PARTICIPANTS: Thirty-three medical students. MEASUREMENTS: Qualitative content analysis of interview transcriptions. MAIN RESULTS: Students' descriptions of the humorous stories and their responses reveal that students are able to take the perspective of both outsiders and insiders in the medical culture. Students' responses to these stories show that they can identify the outsider's perspective both by seeing themselves in the outsider's role and by identifying with patients. Students can also see the insider's perspective, in that they identify with residents' frustrations and disappointments and therefore try to explain why residents use this kind of humor. Their participation in the humor and slang--often with reservations--further reveals their ability to identify with the perspective of an insider. CONCLUSIONS: Medical students describe a number of conflicting reactions to hospital humor that may enhance and exacerbate tensions that are already an inevitable part of training for many students. This phenomenon requires greater attention by medical educators.

Using survival curve comparisons to inform patient decision making can a practice exercise improve understanding?

BACKGROUND: Patients often face medical decisions that involve outcomes that occur and change over time. Survival curves are a promising communication tool for patient decision support because they present information about the probability of an outcome over time in a simple graphic format. However, previous studies of survival curves did not measure comprehension, used face-to-face explanations, and focused on a VA population. METHODS: In this study, 246 individuals awaiting jury duty at the Philadelphia County Courthouse were randomized to receive one of two questionnaires. The control group received a questionnaire describing two hypothetical treatments and a graph with two survival curves showing the outcomes of each treatment. The practice group received the same questionnaire preceded by a practice exercise asking questions about a graph containing a single curve. Subjects' ability to interpret survival from a curve and ability to calculate change in survival over time were measured. RESULTS: Understanding of survival at a single point in time from a graph containing two survival curves was high overall, and was improved by the use of a single curve practice exercise. With a practice exercise, subjects were over 80% accurate in interpreting survival at a single point in time. Understanding of changes in survival over time was lower overall, and was not improved by the use of a practice exercise. With or without a practice exercise, subjects were only 55% accurate in calculating changes in survival. CONCLUSION: The majority of the general public can interpret survival at a point in time from self-administered survival curves. This understanding is improved by a single curve practice exercise. However, a significant proportion of the general public cannot calculate change in survival over time. Further research is necessary to determine the effectiveness of survival curves in improving risk communication and patient decision making.

Revising a priority list based on cost-effectiveness: the role of the prominence effect and distorted utility judgments.

BACKGROUND: People sometimes object to the results of cost-effectiveness analysis when the analysis produces a ranking of options based on both cost and benefit. We suggest 2 new reasons for these objections: the prominence effect, in which people attend mostly to a more prominent attrbute (benefit as opposed to cost), and distortion of utility judgments. METHOD: We simulated the production of a cost-effectiveness ranking list in 3 experiments using questionnaires on the World Wide Web. Subjects rated the utility of 16 health benefits using either rating scale or person trade-off elicitation methods. In some experiments, subjects were asked to rate the utility of the health benefits with attention also to the cost of achieving the benefits. In all experiments, at the end, subjects were shown a priority list based on their own utility judgments and were asked whether they wanted to move any of the health benefits up or down the list. RESULTS: In all experiments, subjects wanted to give higher priority to treatments with higher benefit, even when they also had higher cost. They thus wanted to give less weight to high cost (which would, by itself, lead to lower ranking) and more weight to benefit than the weight implied by their own prior judgments. The desire for revision was reduced when subjects made their utility judgments after indicating whether the utility was above or below the midpoint of the scale (a manipulation previously found to reduce distortion). CONCLUSION: The desire to change cost-effectiveness rankings is in part a preference reversal phenomenon that occurs because people attend mainly to the benefit of health interventions as opposed to cost, when they examine the ranking. People should be wary of tinkering with priority lists by examining the lists themselves.

Allocation of transplantable organs: do people want to punish patients for causing their illness?

Some people believe patients with alcoholic cirrhosis should not receive equal priority for scarce transplantable organs. This may reflect a belief that these patients (1) are personally responsible for causing their own illnesses, (2) have poor transplant prognoses, or (3) are unworthy because they have engaged in socially undesirable behavior. We explore the roles that social desirability and personal responsibility have in people's judgments about transplant allocation. We presented prospective jurors with 4 scenarios, asking them to distribute 100 transplantable organs among 2 groups of 100 patients each. In each scenario, 1 group of patients, but not the other, was described as having a history of unhealthy behavior (alcohol or cigarette use) associated with a poorer prognosis. In some scenarios, alcohol or cigarette use was said to cause the organ failure. In others, it only contributed to the patients' transplant prognosis. We also obtained self-reports of subjects' own smoking status. Subjects allocated significantly fewer than half the organs to those with unhealthy behaviors and worse prognoses (33%; P <.001), but the specific behavior (alcohol versus cigarette use) was not significantly associated with subjects' allocation choices. Significantly fewer organs were allocated to patients with behavior responsible for causing their diseases than to other patients (P <.0001). Subjects who never smoked discriminated the most and current smokers discriminated the least against patients with a history of unhealthy behavior (P <.0001). The public's transplantation allocation preferences are influenced by whether patients' behaviors are said to have caused their organ failure.

Who will enroll? Predicting participation in a phase II AIDS vaccine trial.

BACKGROUND: The problems of underenrollment and selective enrollment may undermine AIDS vaccine trials. If prospective study subjects' stated willingness to participate (WTP) in hypothetical vaccine trials predicts future enrollment, then measuring WTP before recruitment may enhance the enrollment in, and ethics of, such trials. METHODS: We prospectively studied changes over an 18-month period in the stated WTP in, and knowledge of, a hypothetical AIDS vaccine trial among 610 Philadelphia residents at high risk for HIV infection. Of these people, 499 were subsequently recruited to participate in an actual, phase II AIDS vaccine trial. We used multivariable logistic regression and the area under the receiver-operating characteristic (ROC) curve to model predictors of actual enrollment. RESULTS: Actual enrollment rates were 8.3%, 6.8%, 15.8%, and 29.0% among those who had initially said they were "definitely not," "probably not," "probably," and "definitely" willing to participate, respectively (p =.006). The area under the ROC curve was 0.65, indicating a modest ability of stated WTP to differentiate those who enroll from those who do not. Knowledge of basic vaccine trial concepts, though unrelated to enrollment, increased over an 18-month period with repeated education sessions (p <.0001), whereas stated WTP declined over this same period (p <.0001). CONCLUSION: Although other factors not captured by stated WTP may also influence future enrollment, prospectively assessing stated WTP may augment the validity of the informed consent process, help prevent underenrollment, and clarify the population from which the study sample is drawn.

Preference for equity as a framing effect.

BACKGROUND: In previous studies, the authors found that most people, given a fixed budget, would rather offer a less effective screening test to 100% of a Medicaid population than a more effective test to 50% of the population. In a subsequent study, the authors found that the number of people preferring the less effective screening test was dramatically reduced when the percentage of Medicaid enrollees receiving it was less than 100. In this article, 2 new studies are reported that explore whether people's preferences for equity versus efficiency are susceptible to a framing effect. METHODS: In 2 studies, the authors presented subjects with multiple scenarios involving screening tests that vary in the proportion of people who could receive the tests within a budget constraint and the number of people whose lives each test would save. Across scenarios, the proportion of Medicaid enrollees who could receive each test was varied, as was the question of whether scenarios involved Medicaid enrollees from the same or a different state. In addition, the authors varied the order in which subjects received the scenarios. RESULTS: In the 1st study, people's preferences for equity over efficiency varied significantly depending on the way situations were framed. Preference for equity was stronger when the more widely distributed choice covered the entire population than when it covered only half the population (P < 0.001). In addition, people's preferences were susceptible to order effects, with preference for equity being significantly stronger when the 1st scenario received by subjects involved 1 screening test that could be offered to the entire population (P < 0.001). In the 2nd study, preferences for equity over efficiency diminished even when the different framings were descriptions of identical circumstances--preference for equity was significantly reduced when the population to be screened was framed broadly, in terms of the percentage of patients across 2 states who could receive testing rather than narrowly, in terms of the percentages of patients in 1 state who could receive testing (P = 0.04). CONCLUSION: Policy planners should be careful about accepting public preferences for equity over efficiency at face value, because such preferences can be dramatically influenced by framing effects and order effects.

Do nonpatients underestimate the quality of life associated with chronic health conditions because of a focusing illusion?

BACKGROUND: A number of studies show that the general public often estimates that the quality of life (QOL) associated with various health conditions is worse than patients say it is. These studies raise the possibility that people overestimate the impact that unfamiliar health conditions will have on their quality of life. One possible reason people overestimate this is because they are susceptible to a focusing illusion--when asked to imagine themselves in unfamiliar circumstances, people overestimate the emotional impact of those features of their life that would change. METHODS: The authors surveyed members of the general public to test the hypothesis that their QOL ratings of hypothetical health conditions would be higher (indicating a better quality of life) after thinking about how the health condition would affect a broad range of life domains. Across 3 experiments, the authors varied the health conditions people were asked to consider (either paraplegia, below-the-knee amputation, or partial blindness), the life domains they were asked to consider, the response mode with which they evaluated how each health condition would affect each life domain, whether subjects rated the health condition before and after considering life domains or only after, and whether subjects rated their own current quality of life first. RESULTS: Across 3 experiments, using 10 different questionnaire versions, only 1 instance was found in which subjects' ratings were significantly higher after thinking about the effect of the health condition on life domains than before, and the magnitude of this increase was small. CONCLUSION: It could not be established that a focusing illusion contributes significantly to the discrepancy in QOL ratings of patients and nonpatients. Further research should explore other factors that could contribute to the discrepancy or other ways of testing for the influence of a focusing illusion.

Rationing HIV medications: what do patients and the public think about allocation policies?

BACKGROUND: New medications for treating HIV/AIDS are effective, but expensive, and funding shortfalls have led many state AIDS Drug Assistance Programs (ADAPs) to ration these drugs. Little is known about the views of those most directly affected by rationing policies. This study explores attitudes of patients with HIV and the general public toward specific rationing strategies. METHODS: A Likert-style, self-administered questionnaire about rationing expensive HIV medications in the context of a budget shortfall was administered to patients with HIV and shopping mall patrons in central Pennsylvania. Subjects were asked how much they agreed or disagreed with seven drug rationing policies. RESULTS: In all, 100 patients and 101 shoppers completed the survey (response rate = 89%). A majority in both groups "strongly" or "somewhat" disagreed with six of the seven rationing policies described, and patients more strongly disagreed with the policies than did the public. The five policies actually used by state ADAPs (first come first serve, limiting expensive medicines, limiting new patient enrollment, giving the expensive medicines to the sickest, using a spending cap) lacked support in either group. CONCLUSIONS: HIV drug rationing policies currently in use do not reflect the preferences of patients and the public. Integrating the views of those affected by the rationing decisions would raise difficult challenges to current programs.

Measuring patient expectations: does the instrument affect satisfaction or expectations?

BACKGROUND: Fulfillment of patients' expectations may influence health care utilization, affect patient satisfaction, and be used to indicate quality of care. Several different instruments have been used to measure expectations, yet little is known about how different assessment methods affect outcomes. OBJECTIVE: The object of the study was to determine whether different measurement instruments elicit different numbers and types of expectations and different levels of patient satisfaction. DESIGN: Patients waiting to see their physician were randomly assigned to receive 1 of 2 commonly used instruments assessing expectations or were assigned to a third (control) group that was not asked about expectations. After the visit, patients in all 3 groups were asked about their satisfaction and services they received. SUBJECTS: The study subjects were 290 male, primary care outpatients in a VA general medicine clinic. MEASURES: A "short" instrument asked about 3 general expectations for tests, referrals, and new medications, while a "long" instrument nested similar questions within a more detailed list. Wording also differed between the 2 instruments. The short instrument asked patients what they wanted; the long instrument asked patients what they thought was necessary for the physician to do. Satisfaction was measured with a visit-specific questionnaire and a more general assessment of physician interpersonal skills. RESULTS: Patients receiving the long instrument were more likely to express expectations for tests (83% vs. 28%, P <0.001), referrals (40% vs. 18%, P <0.001), and new medications (45% vs. 28%, P <0.001). The groups differed in the number of unmet expectations: 40% of the long instrument group reported at least 1 unmet expectation compared with 19% of the short instrument group (P <0.001). Satisfaction was similar among the 3 groups. CONCLUSIONS: These different instruments elicit different numbers of expectations but do not affect patient satisfaction.

The inclusion of patient testimonials in decision aids: effects on treatment choices.

BACKGROUND: Decision aids often provide statistical information and patient testimonials to guide treatment choices. This raises the possibility that the testimonials will overwhelm the statistical information. METHODS: Prospective jurors in Philadelphia County were presented with hypothetical statistical information about the percentage of angina patients who benefit from angioplasty and bypass surgery (50% and 75%, respectively). They were also given written testimonials from hypothetical patients who had benefited or not benefited from each of the two treatments. The numbers of patients benefiting and not benefiting were varied to be either proportionate to the statistical information or disproportionate. In study 1, all participants received 1 testimonial from a patient who had benefited from angioplasty and 1 from a patient who had not. Participants receiving the proportionate questionnaire version were also given 3 testimonials from patients who benefited from bypass surgery and 1 from a patient who did not, coinciding with the hypothetical statistical information. In contrast, participants receiving the disproportionate questionnaire version received only 1 testimonial from a patient who benefited from surgery and 1 from a patient who did not. In study 2, all participants received 2 examples of patients who benefited from angioplasty and 2 who did not. Participants with the proportionate questionnaire version received the same testimonials regarding surgery as in study 1. Those receiving the disproportionate questionnaire version received 2 testimonials from patients who benefited from bypass and 2 from patients who did not. Finally, a separate set of participants in study 2 received a questionnaire with no testimonials. RESULTS: In study 1, 30% of participants receiving the disproportionate questionnaire version chose bypass surgery versus 44% of those receiving the proportionate questionnaire (P = 0.002 by chi2). In study 2, 34% of participants receiving the disproportionate questionnaire version chose bypass surgery versus 37% of those receiving the proportionate questionnaire (P = 0.59 by chi2). Of those receiving no patient testimonials, 58% chose bypass surgery. CONCLUSIONS: The inclusion of written patient testimonials significantly influenced hypothetical treatment choices. Efforts to make the mix of positive versus negative testimonials proportionate to statistical information may, under some circumstances, affect choices in ways that cannot automatically be assumed to be optimal.

Barriers to influenza immunization in a low-income urban population.

BACKGROUND: Although influenza immunization significantly reduces mortality from influenza, over one third of elderly Americans are not immunized each year. Low rates of immunization are particularly concerning among African-American low-income populations. Preliminary interviews suggested that fear of undisclosed ingredients in the influenza vaccine may impede vaccine acceptance in this vulnerable population. OBJECTIVES: To assess the role of concern about vaccine contents and other factors in the use of influenza immunization among a predominantly African-American low-income urban population. METHODS: Cross-sectional, health-system-population-based, telephone survey of a random sample of West Philadelphia residents aged > or =65 years. RESULTS: Of 659 eligible individuals, 486 (73.8%) were successfully interviewed. Concern about undisclosed shot contents was reported by 132 (20%) respondents and was inversely associated with vaccine receipt (OR 0. 49, 95% CI 0.26-0.91). This association was similar among African Americans and Caucasians. In addition, receipt of influenza vaccine was inversely associated with belief that immunization is inconvenient (OR 0.14, 95% CI 0.05-0.36), belief that immunization is painful (OR 0.21, 95% CI 0.08-0.54), and history of previous side effects (OR 0.33, 95% CI 0.18-0.60), and positively associated with physician recommendation (OR 3.22, 95% CI 1.76-5.93). CONCLUSIONS: In a low-income urban population, concern about undisclosed vaccine contents appears to impede acceptance of influenza immunization among both African Americans and Caucasians. Directly addressing this concern offers a new approach to increasing immunization in this vulnerable population.

Physicians, thou shalt ration: the necessary role of bedside rationing in controlling healthcare costs.

Physicians are often asked to be "gatekeepers," determining their patients' access to medical therapies and technologies. At the same time, most physicians have been taught that they should act as patient advocates, pursuing patients' best interests regardless of cost. This paper reviews moral arguments ethicists have made for and against "bedside rationing." It argues that healthcare rationing is appropriate in order to help control healthcare costs, and that rationing decisions made at the bedside by physicians must be part of the rationing system. A system that attempts to control costs by mandating an elaborate set of rules would be burdensome, and many physicians would find ways