Enhancing shared decision making in assisted reproductive technologies through the use of multimedia platforms for informed consent

Abstract

Informed consent embodies the ethical principle of autonomy. The key goal of informed consent is to ensure that patients are making a medical decision in keeping with their goals and values, based on an understanding of the risks, benefits, and alternatives of a recommended treatment. This laudable goal has unfortunately become lost in a formulaic process involving lengthy paperwork that is laden with complex explanations with little room for discourse and dialogue. Informed consent has morphed into “consenting” or signing a piece of paper to avoid liability rather than an ongoing discussion and engagement between clinician and patient. Informed consent has become adversarial rather than collaborative, putting patient and clinician at odds. The concept of shared decision making is an effort to realign the goals of the patient and his or her clinician. HealthIT.gov defines shared decision making as “a process in which clinicians and patients work together to make decisions and select tests, treatments and care plans based on clinical evidence that balances risks and expected outcomes with patient preferences and values” (1National Learning ConsortiumShared decision making fact sheet.https://www.healthit.gov/sites/default/files/nlc_shared_decision_making_fact_sheet.pdfDate accessed: September 21, 2018Google Scholar). Shared decision making regarding treatment options is a more balanced, cooperative approach to informed consent that respects the role of both patient and clinician. “A basic tenet of shared decision making is that clinicians are the experts in the evidence and patients are the experts in what matters most to them” (2Spatz E.S. Krumholz H.M. Moulton B.W. Prime time for shared decision making.JAMA. 2017; 317: 1309Crossref PubMed Scopus (97) Google Scholar). Patient decision aids are one way to balance the “expertise” of both patient and clinician. The use of multimedia platform decision aids or patient decision aids (PDAs) is a shift away from the perfunctory signing of a document that few, if any, read and or comprehend, toward a more shared and individualized approach to decision making. In “Improving Ovulation Induction-Intrauterine Insemination and In-Vitro Fertilization Informed Consent through the EngagedMD Multimedia Platform” by Madeira et al. (3Madeira J.L. Rehbein J. Christianson M.S. Lee M. Parry J.P. Pennings G. et al.Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilization.Fertil Steril. 2018; 110: 1338-1346Google Scholar), the benefits of PDAs in improving the informed consent process for some of the particularly complex and emotional decisions around the use of assisted reproductive technologies (ART) are clearly articulated. The multimedia platform reviewed and analyzed in the article illustrates one approach for enhancing shared decision making that allows for both uniformity of information and specialized information that meets the particular patient's needs. PDAs can take many forms to address the varying ways in which people receive and process information. PDAs may be in the form of videos, supplemental reading, infographics, charts, illustrations, a combination of written and video material, interactive materials, and so on. The use of PDAs as a means of enhancing or promoting shared decision making was recognized by the legislature of the State of Washington in 2007 when they enacted RCW 41.05.033, Shared decision-making demonstration project—Preference-sensitive care. The basis for the legislation was “growing evidence that, for preference-sensitive care involving elective surgery, patient-practitioner communication is improved through the use of high-quality decision aids that detail the benefits, harms, and uncertainty of available treatment options. Improved communication leads to more fully informed patient decisions” (4Washington State Legislature RCW 41.05.033: Shared decision-making demonstration project—Preference-sensitive care.http://apps.leg.wa.gov/RCW/default.aspx?cite=41.05.033Date accessed: September 21, 2018Google Scholar). The platform described by Madeira et al. (3Madeira J.L. Rehbein J. Christianson M.S. Lee M. Parry J.P. Pennings G. et al.Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilization.Fertil Steril. 2018; 110: 1338-1346Google Scholar) is interactive, allowing for targeted follow-up with the clinician and highlights those topics on which the patient(s) may need or desire more information. More specifically, “Patients are also able to submit questions to their medical teams, who can see patients' completion progress, quiz results, and questions through a ‘backdoor.’ This allows clinicians to customize consent conversations to patients' individual needs” (3Madeira J.L. Rehbein J. Christianson M.S. Lee M. Parry J.P. Pennings G. et al.Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilization.Fertil Steril. 2018; 110: 1338-1346Google Scholar). This kind of interactive rather than static tool promotes shared decision making between patient and clinician, enhancing the informed consent process. Madeira et al. (3Madeira J.L. Rehbein J. Christianson M.S. Lee M. Parry J.P. Pennings G. et al.Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilization.Fertil Steril. 2018; 110: 1338-1346Google Scholar) acknowledge that informed consent is a process and that decision aids are one means of improving that process, stating that their “data suggests that a multimedia platform improves patient education regarding ART treatment, gives them more control over their medical decision making, and better prepares them to participate in consent processes.” They do acknowledge, however, that PDAs are not without their flaws. The notion that PDAs enhance shared decision making rather than replace the existing informed consent model of signing a descriptive document was espoused by lawyer/ethicist Thaddeus Mason Pope: “Importantly, despite their typically self-directed and self-paced nature, PDAs do not supplant physician patient conversation about treatment options. Instead, they supplement it, by better preparing patients to engage in that conversation” (5Pope T.M. Certified patient decision aids: solving persistent problems with informed consent law.J L Med Ethics. 2017; 45: 12-40Google Scholar). Based upon the survey data collected by Madeira et al. (3Madeira J.L. Rehbein J. Christianson M.S. Lee M. Parry J.P. Pennings G. et al.Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilization.Fertil Steril. 2018; 110: 1338-1346Google Scholar), the EngagedMD multimedia platform also better prepares clinicians for their conversation with patients and helps the patient to ask for more information about those issues that are most relevant to their goals and values. Given the complexity of ART and its life-creating rather than life-sustaining or life-enhancing nature, fully informed, comprehended, and deliberate decision making is essential. The study by Madeira et al. (3Madeira J.L. Rehbein J. Christianson M.S. Lee M. Parry J.P. Pennings G. et al.Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilization.Fertil Steril. 2018; 110: 1338-1346Google Scholar) is the “the first to empirically assess multimedia interventions in ART informed consent processes and to analyze a multimedia platform from both patient and provider perspectives.” It recognizes that PDAs are not without their flaws; however, it begins an important discussion of how to ensure that patients undergoing ART feel confident and informed about the choices that they are making and that their clinicians know how to best communicate the risks, benefits, and alternatives for particular patients. Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilizationFertility and SterilityVol. 110Issue 7PreviewTo study patient and provider feedback on how a multimedia platform (EngagedMD) helps patients to understand the risks and consequences of in vitro fertilization (IVF), ovulation induction (OI), and intrauterine insemination (IUI) treatments and the impact of the informed consent process. Full-Text PDF