University: Texas Tech University
Description of Work:
My research focuses on patient-provider communication with an emphasis on shared decision-making. I am interested in patient decision aids (PDAs), documents created to assist people who must contemplate difficult health care choices. I argue that practitioners who create PDAs produce deliberative rhetoric—arguments for and against treatment possibilities. I have developed a framework that extends problematic integration theory’s dimensions of scientific knowledge and embodied knowledge. Using this context, I have created a rubric that PDA authors may use to check that they provide balanced arguments that include advantages and disadvantages for each treatment option. One of my future projects includes working with researchers in other disciplines on a study of PDAs that combines quantitative and rhetorical methods.
(Re)defining Balance: Problematic Integration in Patient Decision Aids for Prenatal Genetic Testing
Patient Decision Aids (PDAs) are documents created by biomedical practitioners to assist people who must contemplate “two or more health care options” (Volk & Llewellyn-Thomas, 2012, p. 2). In principle, biomedical practitioners who construct PDAs produce deliberative rhetoric—arguments for and against each health care option. International Patient Decision Aid Society (IPDAS) standards demand a balanced presentation of benefits and disadvantages: “The extent to which a decision aid is ‘balanced’ is the extent to which it presents—in content, in format, and in display—the available options and the positive and negative information about each of those options in a complete and neutral manner” (Stalmeier et al., 2012). However, the authors also suggest that scholars theorize additional criteria to broaden and deepen this definition. Their meta-analysis of PDA efficacy studies found few assessments of balance. They conclude: “There is a need to carry out a range of comparative studies…” to “…investigate whether different approaches to assessing balance lead to different evaluations of a decision aid” (Stalmeier et al., 2012, p. 20).
By extending problematic integration theory (PI), I construct a rhetorical framework that interrogates the idea of balance in PDAs. In an early discussion of PI, Babrow (1992) argues that people make decisions based on “probabilistic orientations” and “evaluative orientations,” and that “A basic integrative predicament arises when there is a discrepancy between what we believe to be so and what we want to be so…” (p. 100). In biomedical decision-making, I argue that probabilistic orientations align with the epistemology of science represented by the biomedical practitioner while evaluative orientations most closely reflect the embodied epistemology of the patient. The incorporation of these ways of knowing complicates the IPDAS definition of balance in PDAs. Evaluative orientations of patients (through the values accrued in phronesis and the lived life) may overwhelm even the most persuasive scientific argumentation. For example, the embodied knowledge of a patient (or patient’s friend) may outweigh a large number of scientific disadvantages or benefits. Alternatively, a person who values scientific knowledge (or the powerful role of the biomedical practitioner) more than her own embodied knowledge may default to statistical probability. Authors of PDAs must create documents that acknowledge the existence of both epistemologies. Additionally, authors must address the interaction of the epistemologies and the challenges that patients will experience in coping with the outcomes of their decisions in light of the ambivalence and ambiguity that occur in biomedical decision-making situations.
I apply this framework to a sample of four documents for prenatal genetic testing in a genre of PDAs that I term gateway documents: web documents from non-commercial sites returned during an initial query for decision-making information. The authors of the documents accomplish several tasks to assist parents in the early stages of decision-making in this situation. First, they provide information about screening, procedures for collecting genetic material for testing, and hyperlinks to documents that may increase patient knowledge. In some instances, authors also provide lists of possible genetic defects or disorders. Second, authors in three of the four documents give some benefits of genetic testing and argue that the benefits of medical knowledge combined with implied embodied knowledge may assist parents in making decisions either to terminate the pregnancy or to search for information about caring for children with genetic disorders or defects. Third, the authors, through the introduction of family history criteria, support genetic screening and/or testing for fetuses of women who meet one or more of the particular biomedical conditions found in themselves or other family members who have genetic defects or disorders.
However, as producers of deliberative rhetoric, none of the authors argues that parents may use embodied knowledge alone to provide reasons against genetic testing, even in light of research that provides evidence that some people may not want to know the outcome of genetic testing for themselves or their children. Moreover, the authors never describe the nature or extent of postnatal challenges in caring for children with special needs—the realm of embodied knowledge. The implication is that parents must take up these subjects with their physicians and/or genetic counselors. While prenatal genetic testing itself (as scientific epistemology) may provide a level of certainty about whether a fetus has a genetic defect or disorder, it cannot provide the embodied knowledge necessary to decrease uncertainty about how a positive test result may affect the child’s quality of life or that of the child’s caregivers. Moreover, categorizing any embodied knowledge as a benefit relates entirely to the life experiences of the parents. If a person has had a negative experience in relation to a disorder or defect, this same embodied knowledge may become a disadvantage of positive genetic testing results.
Instead of focusing on the risks aligned with positive or negative testing results, the authors discuss (what they consider low) probabilities of harm of the procedures to retrieve genetic material for testing. Without a fuller discussion of the benefits and disadvantages of genetic testing itself, the authors of the documents skew their arguments toward supporting genetic testing.
The emphasis on statistical risk without a complementary discussion of embodied knowledge underscores a conclusion that the use of scientific knowledge outweighs the use of embodied knowledge throughout the documents. While the authors may suggest the need for embodied knowledge in decision-making, they maintain that this form of deliberation should occur during genetic counseling sessions. The authors do not prompt the use of embodied knowledge to support or negate topoi in the decision-making process for the actual genetic test. Instead, the authors imply that the bulk of the decision-making for this aspect ought to occur with the assistance of genetic counselors and/or their physicians, entrenching the authoritative role of biomedical practitioners and decreasing the qualities of this set of gateway PDAs to emphasize and balance the roles of embodied knowledge and scientific knowledge in the decision-making process.
Babrow, A. S. (1992). Communication and problematic integration: Understanding diverging probability and value, ambiguity, ambivalence, and impossibility. Communication Theory, 2(2), 95–130.
Stalmeier, P., Volk, R. J., Abhyanker, P., Blumenthal-Barby, J., Bravo, P., Buchholz, A., Col, N., Ozanne, E., Vidal, D. C. (2012). Balancing the presentation of information and options. In Volk, R. and Llewellyn-Thomas, H. (Eds.) 2012 Update of the International Patient Decision Aids Standards (IPDAS) Collaboration’s Background Document. Chapter I. Retrieved from http://ipdas.ohri.ca/resources.html
Volk, R. & Llewellyn-Thomas, H. (2012). The 2012 IPDAS background document: An Introduction. In Volk, R. and Llewellyn-Thomas, H. (editors) 2012 Update of the International Patient Decision Aids Standards (IPDAS) Collaboration’s Background Document. Chapter F. Retrieved from http://ipdas.ohri.ca/resources.html