Linda M. Hunt

Are Good Intentions Good Enough?: Informed Consent Without Trained Interpreters

ObjectiveTo examine the informed consent process when trained language interpreters are unavailable.BackgroundEnsuring sufficient patient understanding for informed consent is especially challenging for patients with Limited English Proficiency (LEP). While US law requires provision of competent translation for LEP patients, such services are commonly unavailable.Design and ParticipantsQualitative data was collected in 8 prenatal genetics clinics in Texas, including interviews and observations with 16 clinicians, and 30 Latina patients. Using content analysis techniques, we examined whether the basic criteria for informed consent (voluntariness, discussion of alternatives, adequate information, and competence) were evident for each of these patients, contrasting LEP patients with patients not needing an interpreter. We present case examples of difficulties related to each of these criteria, and compare informed consent scores for consultations requiring interpretation and those which did not.ResultsWe describe multiple communication problems related to the use of untrained interpreters, or reliance on clinicians’ own limited Spanish. These LEP patients appear to be consistently disadvantaged in each of the criteria we examined, and informed consent scores were notably lower for consultations which occurred across a language barrier.ConclusionsIn the absence of adequate Spanish interpretation, it was uncertain whether these LEP patients were provided the quality and content of information needed to assure that they are genuinely informed. We offer some low-cost practice suggestions that might mitigate these problems, and improve the quality of language interpretation, which is essential to assuring informed choice in health care for LEP patients.

BiDil: Assessing a Race-Based Pharmaceutical

Isosorbide and hydralazine in a fixed-dose combination (BiDil) has provoked controversy as the first drug approved by the Food and Drug Administration marketed for a single racial-ethnic group, African Americans, in the treatment of congestive heart failure. Family physicians will be better prepared to counsel their patients about this new drug if they understand a number of background issues. The scientific research leading to BiDil’s approval tested the drug only in African American populations, apparently for commercial reasons, so the drug’s efficacy in other populations is unknown. Race as a biological-medical construct is increasingly controversial; BiDil offers a good example of how sociocultural factors in disease causation may be overlooked as a result of an overly simplistic assumption of a racial and hence presumed genetic difference. Past discrimination and present disparities in health care involving African American patients are serious concerns, and we must welcome a treatment that promises to benefit a previously underserved group; yet the negative aspects of BiDil and the process that led to its discovery and marketing set an unfortunate precedent. Primary care physicians should be aware of possible generic equivalents that will affect the availability of this drug for low-income or uninsured patients.

Clinical myths of the cultural "other": implications for Latino patient care.

Purpose Cultural competency is now a requirement in the curriculum of many health professions. However, clinicians’ understandings of cultural difference, the accuracy of those understandings, and their impact on patient care have not yet been carefully explored. The authors conducted an ethnographic study designed to describe clinicians’ views of Latino culture in the context of amniocentesis decision making, compared those to patients’ discussions of their decision making, and explored how clinicians’ views about culture are manifested in consultations with Latinas. Method Between 2000 and 2002, semistructured, open-ended interviews were conducted in southern Texas with convenience samples of 50 clinicians who discuss prenatal testing with patients, and 40 self-identified Latina patients who had been offered amniocentesis. Observations were also made of 101 genetic counseling sessions. Content analysis focused on the cultural characteristics clinicians identified as affecting Latinas’ decision making, patients’ self-reported decision-making processes, and clinician and patient comments and actions observed during genetics counseling sessions. Results Most clinicians said Latinas are likely to decline amniocentesis because they are religious, fatalistic, male-dominated, family-centered, and superstitious. However, patients’ discussions of their decision making were not consistent with these characterizations. Furthermore, clinicians reported providing less complete information to Latina patients in their efforts to be culturally sensitive. Conclusions Comparing patient and clinician interviews bring into question clinicians’ notion of Latino culture’s role in amniocentesis decision making. Efforts to be “culturally competent,” in the absence of a patient-centered approach, may unintentionally encourage stereotyping, thereby negatively affecting the quality and content of clinical care.

The Changing Face of Chronic Illness Management in Primary Care: A Qualitative Study of Underlying Influences and Unintended Outcomes

PURPOSE Recently, there has been dramatic increase in the diagnosis and pharmaceutical management of common chronic illnesses. Using qualitative data collected in primary care clinics, we assessed how these trends play out in clinical care. METHODS This qualitative study focused on management of type 2 diabetes and hypertension in 44 primary care clinics in Michigan and was based on interviews with 58 clinicians and 70 of their patients, and observations of 107 clinical consultations. We assessed clinicians’ treatment strategies and discussions of factors influencing treatment decisions, and patients’ understandings and experiences in managing these illnesses. RESULTS Clinicians focused on helping patients achieve test results recommended by national guidelines, and most reported combining 2 or more medications per condition to reach targets. Medication selection and management was the central focus of the consultations we observed. Polypharmacy was common among patients, with more than one-half taking 5 or more medications. Patient interviews indicated that heavy reliance on pharmaceuticals presents challenges to patient well-being, including financial costs and experiences of adverse health effects. CONCLUSIONS Factors promoting heavy use of pharmaceuticals include lower diagnostic and treatment thresholds, clinician-auditing and reward systems, and the prescribing cascade, whereby more medications are prescribed to control the effects of already-prescribed medications. We present a conceptual model, the inverse benefit law, to provide insight into the impact of pharmaceutical marketing efforts on the observed trends. We make recommendations about limiting the influence of the pharmaceutical industry on clinical practice, toward improving the well-being of patients with chronic illness.

A critical review of racial/ethnic variables in osteoporosis and bone density research.

SummaryRacial and ethnic variables are common in research on variation in bone density. This literature review describes some of the common flaws associated with the use of these variables and provides some suggestions for how bone density research may be able to better document and address skeletal health disparities.IntroductionRacial/ethnic differences in bone density have been commonly documented in the research literature. While effective identification of the specific factors underlying these trends might go a long way in informing treatment and screening for osteoporosis, this would require careful consideration of exactly what these variables are capturing. However, the basis and implications of what racial/ethnic variables represent have not carefully been examined in bone density research.MethodsFor this paper, we systematically reviewed 55 articles that included bone density and race/ethnicity as key variables. Our analysis reveals that racial/ethnic terminology in these articles is highly variable, and discussion of how race/ethnicity is determined is often vague and idiosyncratic. Racial/ethnic variables are being used for a wide range of analytical purposes in statistical tests, which may not be appropriate for such a complex and poorly defined variable.ResultsMany articles attribute racial/ethnic differences in bone mass/bone density to genetic causes, although few studies actually examine genetic data.ConclusionThis analysis indicates that more rigorous examination of what race/ethnicity actually captures, more careful definitions of group labels and the procedures for assigning them, and attention to the limitations of how such variables can reliably be used in data analyses is needed to help address the problems and issues outlined in this review.

Genes, race and research ethics: who’s minding the store?

Background: The search for genetic variants between racial/ethnic groups to explain differential disease susceptibility and drug response has provoked sharp criticisms, challenging the appropriateness of using race/ethnicity as a variable in genetics research, because such categories are social constructs and not biological classifications. Objectives: To gain insight into how a group of genetic scientists conceptualise and use racial/ethnic variables in their work and their strategies for managing the ethical issues and consequences of this practice. Methods: In-depth semi-structured interviews were conducted with a purposive sample of 30 genetic researchers who use racial/ethnic variables in their research. Standard qualitative methods of content analysis were used. Results: Most of the genetic researchers viewed racial/ethnic variables as arbitrary and very poorly defined, and in turn as scientifically inadequate. However, most defended their use, describing them as useful proxy variables on a road to “imminent medical progress”. None had developed overt strategies for addressing these inadequacies, with many instead asserting that science will inevitably correct itself and saying that meanwhile researchers should “be careful” in the language chosen for reporting findings. Conclusions: While the legitimacy and consequences of using racial/ethnic variables in genetics research has been widely criticised, ethical oversight is left to genetic researchers themselves. Given the general vagueness and imprecision we found amongst these researchers regarding their use of these variables, they do not seem well equipped for such an undertaking. It would seem imperative that research ethicist move forward to develop specific policies and practices to assure the scientific integrity of genetic research on biological differences between population groups.

Genes, race, and culture in clinical care: racial profiling in the management of chronic illness.

Race, although an unscientific concept, remains prominent in health research and clinical guidelines, and is routinely invoked in clinical practice. In interviews with 58 primary care clinicians we explored how they understand and apply concepts of racial difference. We found wide agreement that race is important to consider in clinical care. They explained the effect of race on health, drawing on common assumptions about the biological, class, and cultural characteristics of racial minorities. They identified specific race-based clinical strategies for only a handful of conditions and were inconsistent in the details of what they said should be done for minority patients. We conclude that using race in clinical medicine promotes and maintains the illusion of inherent racial differences and may result in minority patients receiving care aimed at presumed racial group characteristics, rather than care selected as specifically appropriate for them as individuals.

The pursuit of preventive care for chronic illness: turning healthy people into chronic patients

Preventive health care has become prominent in clinical medicine in the US, emphasising risk assessment and control, rather than addressing the signs and symptoms of pathology. Current clinical guidelines, reinforced by evidence-based decision aids and quality of care assessment, encourage clinicians to focus on maintaining rigid test thresholds that are based on population norms. While achieving these goals may benefit the total population, this may be of no benefit or even harmful to individual patients. In order to explore how this phenomenon is manifested in clinical care and consider some factors that promote and sustain this trend, we analysed observations of over 100 clinical consultations, and open-ended interviews with 58 primary care clinicians and 70 of their patients. Both clinicians and patients equated at-risk states with illness and viewed the associated interventions not as prevention, but as treatment. This conflation of risk and disease redefines clinical success such that reducing the threat of anticipated future illness requires the acceptance of aggressive treatments and any associated adverse effects in the present. While the expanding emphasis on preventive medicine may improve the health profile of the total population, the implications of these innovations for the wellbeing of individual patients merits careful reconsideration.

Pharmacogenetics in Primary Care: The Promise of Personalized Medicine and the Reality of Racial Profiling

Many anticipate that expanding knowledge of genetic variations associated with disease risk and medication response will revolutionize clinical medicine, making possible genetically based Personalized Medicine where health care can be tailored to individuals, based on their genome scans. Pharmacogenetics has received especially strong interest, with many pharmaceutical developers avidly working to identify genetic variations associated with individual differences in drug response. While clinical applications of emerging genetic knowledge are becoming increasingly available, genetic tests for drug selection are not as yet widely accessible, and many primary care clinicians are unprepared to interpret genetic information. We conducted interviews with 58 primary care clinicians, exploring how they integrate emerging pharmacogenetic concepts into their practices. We found that in their current practices, pharmacogenetic innovations have not led to individually tailored treatment, but instead have encouraged use of essentialized racial/ethnic identity as a proxy for genetic heritage. Current manifestations of Personalized Medicine appear to be reinforcing entrenched notions of inherent biological differences between racial groups, and promoting the belief that racial profiling in health care is supported by cutting-edge scientific authority. Our findings raise concern for how pharmacogenetic innovations will actually affect diverse populations, and how unbiased treatment can be assured.

Counterproductive Consequences of a Conservative Ideology: Medicaid Expansion and Personal Responsibility Requirements

Medicaid expansion, a key part of the Affordable Care Act, has been opposed by conservative politicians despite its fiscal and public health benefits. In response, some Republican-led states have expanded Medicaid with new reforms, including requirements for cost sharing and behavioral incentives, that promote conservative political values tied to an ideology of personal responsibility. We examine this trend using Michigans Medicaid expansion as a case example. We explore the origins, evidence base, and possible consequences of these reforms. We argue that these reforms prioritize ideology over sound public health knowledge, deflecting attention away from the social, economic, and structural factors that influence the health of the poor, and may ultimately contribute to counterproductive public health and fiscal outcomes.