How do medical ethics influence the way patient engagement specialists connect with patients?
As I shared in the post “Zen and the Art of Relationship Centricity”, I had the privilege of interviewing a group of patient engagement specialists (specifically, pharmaceutical-sponsored clinical nurse educators) for my doctoral dissertation. I was familiar with their roles and responsibilities because of my prior work in this area, so many of the insights that were uncovered from that study were astute but not too surprising. One unexpected theme though that emerged was the frequency and depth of moral uncertainty that these specialists experienced. These individuals regularly found themselves contending with internal struggles such as the one highlighted by Iris that appears on the home page that says...
“There is no little pharma bird on the wall listening to everything we say. So, it becomes an ethical question. What do I do ethically? Where is my first responsibility? Is it to this patient or to this drug company?” [1].
As an unrelated aside, at the time of the interview, Iris
apparently was not aware of the emerging viral satirical conspiracy theory called "Birds Aren't Real", though
I’m sure she’d relish its irony. It pokes fun at the increasing rise of misinformation campaigns popping up in popular media by asserting that the federal government has been killing off the real birds in the country and replacing them with mechanical bird drones that spy on us. Weird, but they sell some fun and kitschy t-shirts.
Anyway, it was obvious during the interviews that many educators faced moral struggles in their work similar to Iris. It was also clear that such concerns were born from their commitment to uphold the foundational medical ethics that were the cornerstone of their professional orientation. But before diving deeper, here’s a quick and dirty primer about medical ethics. In Western culture, the fundamental framework that underlies the art and science of medicine are built upon the four ethical pillars most notably articulated by the researchers Beauchamp and Childress (2019) in their book “Principles of Biomedical Ethics”, now in its 8th edition [2]. These include:
beneficence (i.e., “do good”)
non-malfeasance (i.e., “do no harm”)
autonomy (i.e., “giving the patient the freedom to choose freely, where they are able”)
justice (i.e., “ensuring fairness”)
In short, healthcare professionals should be guided by these pillars when making decisions about patient care. However, since the pillars are not intended to be hierarchical, they often fall in conflict, precipitating ethical dilemmas. A common example is a patient’s desire to refuse a particular treatment, such as chemo (i.e., autonomy) over the physician’s decision to prescribe it as the best course of action for slowing the spread of cancer (i.e., beneficence). In Western cultures, we often tend to defer to autonomy as the default decision-maker in such cases given how our society values individual empowerment. This could also explain why autonomy is critical to three of Emanuel and Emanuel’s four models of patient-provider relationships—informative, interpretive, and deliberative [3]—that were explored in the post “Dr John and the Surreptitious Assessment”. In fact, researchers contend that these types of relationships have been instrumental for Western society’s fundamental shift from the biomedical model of medicine that focused on disease pathology and a paternalistic communication, toward a relationship-centered model. They state:
“Relationship-centered care values the individual characteristics and concerns of patients…and places moral value on the formation and maintenance of genuine provider-patient relationships” [4].
Adding further complexity to these moral dilemmas are the external, or ecological factors that function outside the four ethical pillars and frequently have a disproportionate influence on decision making. You know what these are, things like health insurance access and coverage type, government regulations, hospital policies, patient socioeconomic status, cost-saving measures, etc. The health communication researcher Street categorized ecological factors into four contexts—cultural, media, organizational, and political/legal—in his framework titled “ecological models of communication in medical encounters” [5]. In short, that framework portends that health behaviors cannot be interpreted in isolation of the environmental and policy contexts in which they occur [6]. This is especially relevant for the patient engagement specialists who work on behalf of an industry that is driven by, and adherent to, strict organizational policies and legal regulations that fall under the umbrella term known as COMPLIANCE.
Street was well aware of legal and regulatory compliance factors’ influence on the patient-provider communication dynamic. He hypothesized that in those situations, two outcomes were possible, one being that the constant threat of litigation would pressure HCPs to adopt a more cautious and guarded style of interaction with patients (see Informative model in post “Dr. John”). The converse possibility was that HCPs might engage in more patient-centered communication as such relationship styles are viewed as more likely to lower malpractice risks (see Interpretive and Deliberative models in “Dr. John”). If we were to examine those compliance factors’ influence within the context of patient engagement services provided by the life science industry, similar uncertainty regarding the most appropriate communication style would also likely prevail. All of this helps explain how one of the main themes of my study was “The influence of ecological factors, particularly within the political/legal context, would frequently force educators to experience ethical dilemmas” [1]. Clinical educators were often conflicted by their professional ethics and sense of duty to their patients (i.e., “do good” and “do no harm”) versus the compliance requirements expected by their employers. Further, educators often felt morally bound to do whatever was necessary to avoid breaching the trust they established with patients. For some educators, such attitudes prevailed over their obligation to deliver a compliant educational engagement. As a result, they would sometimes choose to engage in purposeful non-compliant behaviors.
One such nurse educator, Tabitha, used phrases in her interview like “skirted the compliance thing” or “almost compliant” to downplay the severity of her non-compliant behaviors. She even implied that, though her companies’ sales representatives would never publicly acknowledge such, they understood and possibly even supported her actions. She mused,
“They understood, but did their due diligence as we took classes ad nauseam about compliance…The reps understood these regulations were hard to follow and didn’t benefit the patient…So we were close to compliant. Kind of like almost pregnant, almost compliant.” [1]
Insights such as these highlight that, when providing patient engagement solutions, the industry cannot divorce those services from the very real and very problematic ethical dilemmas they frequently provoke for the specialists charged with implementation. If we ignore this reality, we can imperil these specialists with a never-ending cycle of having to weigh what is in the best interest for their patients against what is in the best interest for their company. Which one should prevail? Which one often does? Since there are (likely) no mechanical bird drones spying on these specialists, will we ever know?
Don’t worry, we’ll be revisiting this topic again soon.
[1] Barshinger, T.A. (2020) Interpretations of communication experiences of pharmaceutical-sponsored clinical educators (Doctoral dissertation). Retrieved from ProQuest Dissertation and Theses database (UMI No. 28086978)
[2] Beauchamp, T., & Childress, J. (2019). Principles of biomedical ethics (8th ed.). Oxford University Press.
[3] Emanuel, E. J., & Emanuel, L. L. (1992). Four Models of the Physician-Patient Relationship. JAMA: The Journal of the American Medical Association, 267(16), 2221.
[4] Duggan, A., & Street, R. L. (2015). Interpersonal communication in health and illness. In K. Glanz, B. K. Rimer, & K. Viswanath (Eds.), Health behavior: Theory, research, and practice (Fifth edition). Jossey-Bass & Pfeiffer Imprints, Wiley
[5] Street, R. L. (2003). Communication in medical encounters: An ecological perspective. In T.L. Thompson, A. M. Dorsey, K. I. Miller, & R. Parrot (Eds.), Handbook of health communication (pp. 63–89). Lawrence Erlbaum.
[6] Sallis, J. F., et al. (2008). Ecological models of health behavior. In K. Glanz, B. K. Rimer, & K. Viswanath (Eds.), Health behavior and health education: Theory, research, and practice (4th ed, pp. 465–485). Jossey-Bass
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