The ethics of fighting misinformation
By Gianna Melillo
How would clinical decision making differ for a patient who refuses a blood transfusion based on religious beliefs and one who does so based on medical misinformation?
That was the question posed to attendees at “Ethical Case Challenges: Health Care Disinformation and Misinformation,” a panel discussion moderated by Jan K. Carney, MD, MPH, MACP, and featuring panelists Amy K. Holbrook, MD, FACP, and Erik Wallace, MD, MACP.
The three presenters acted out the two patient scenarios Friday morning, with Dr. Wallace posing as a hospitalist and Dr. Holbrook as the designated surrogate and decision maker for her mother, played by Dr. Carney. Dr. Carney’s character needed a transfusion and had mild cognitive impairment.
Prior to the role play, Dr. Carney explained the difference between misinformation and disinformation, defining the latter as “false or misleading statements an author or speaker knows to be wrong and intends to cause harm.” Misinformation “is spread unwittingly" in contrast to disinformation, which is "spread intentionally to confuse, deceive, or otherwise manipulate.”
In 2024, patients can believe and perpetuate both types of incorrect information.
Asked how they would handle the scenario where the transfusion was refused because it went against the patient’s belief as a Jehovah’s Witness, the majority of attendees responded that they would “respect the family’s autonomy and not discuss transfusion further, then strategize how to stabilize the patient without blood products.”
There was less consensus on the second scenario, when the daughter refused the transfusion for her mother unless the hospitalist “absolutely guaranteed the blood is from an unvaccinated donor,” said Dr. Holbrook during the exercise. She went on to explain, in character, that she’s done a lot of research and knows that the protein “that's in the COVID vaccine, if that gets into the blood that we transfuse to my mom, it could kill her.”
When asked who had encountered this situation or a similar one in clinic, more than a few attendees raised their hands. Participants were asked to share their thoughts and tips throughout the session. Some encouraged the hospitalist to ask the patient for permission to share some knowledge about the vaccine. Others said the physician could ask if other family members are involved in the mother’s care decisions.
Panelists and audience members also highlighted the lack of established trust between the hospitalist and the patient’s decision maker as a barrier. To overcome this, the hospitalist could involve the mother’s primary care physician—someone who already has a relationship with the patient.
It may also be useful to emphasize to the decision maker that the hospitalist is just as concerned as she is about helping her mother, underscoring their shared goal.
“We might feel that her daughter is not making decisions in the best interest of her mother based on what we know. But that's clearly not the case,” said Dr. Wallace. “Acknowledging [the daughter’s best wishes for her mother] is really important to try and build that trusting relationship.”
When it comes to differentiating between declining care based on religious beliefs versus beliefs rooted in misinformation, some audience members suggested they were more willing to accept a religious objection because these beliefs extend beyond mortality. One audience member classified the two cases as faith-based versus fear-based objections.
Others noted that a rejection of care based on religious beliefs has a long track record of being upheld in court.
Another issue is that the public considers physicians a highly trusted source of information, panelists said. Thus, it may be incumbent upon physicians to communicate correct information when necessary.
But medical information evolves over time, and “helping to convey that uncertainty to the public is a really challenging thing," said Dr. Holbrook. “In addition to our medical education and making sure that we’re learning and being humble and being open about the medical information process, I think it’s important from a public education standpoint to make sure that people are understanding the whole process of the scientific method, and that we are open about [how] things change, we get more information, and things evolve,” she concluded. ■