Author, Case History
Erik A. Wallace, MD, MACP
Primary Care Internal Medicine Physician
Oak Street Health
Clinical Professor of Medicine
Faculty Associate, Center for Bioethics and Humanities
University of Colorado School of Medicine
Colorado Springs, CO
Authors, Commentary
Elliott J. Crigger, PhD
Senior Associate
Center for Ethics and Professionalism
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Philadelphia, Pennsylvania
Jan K. Carney, MD, MPH, MACP
Associate Dean for Public Health & Health Policy
Professor of Medicine
Larner College of Medicine at the University of Vermont
South Burlington, VT
Erik A. Wallace, MD, MACP
Editor
Lois Snyder Sulmasy, JD
Director
Center for Ethics and Professionalism
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Philadelphia, Pennsylvania
Ethics case studies are developed by the ý Ethics, Professionalism and Human Rights Committee and the ACP Center for Ethics and Professionalism. The series uses hypothetical examples to elaborate on controversial or subtle aspects of issues in the College's Ethics Manual or other College position statements. The current edition of the ACP Ethics Manual and additional case studies and College policy on ethics, professionalism, and human rights issues are available at /clinical-information/ethics-and-professionalism or by contacting the Center for Ethics and Professionalism at 215/351-2839.
CASE HISTORY
Ms. Sanders is an 81-year-old patient with a history of hypertension, chronic kidney disease stage 3A, bilateral knee osteoarthritis, and mild cognitive impairment. She presents to the emergency department with dizziness and three episodes of melena over the past 24 hours. Over the past week she has taken ibuprofen 600mg twice daily for worsening knee pain; she does not want to undergo knee replacement surgery.
She currently lives in an assisted living facility. Her daughter, Ms. Williams, the oldest of her 3 children, lives locally and is her designated surrogate under Ms. Sanders’s medical power of attorney (MPOA). Ms. Sanders has decision-making capacity but wants Ms. Williams to make all medical decisions.
In the ED Ms. Sanders is awake and alert, has orthostatic blood pressures, but no active rectal bleeding or hematemesis. Initial labs show eGFR 40 mL/min/1.73m2 (baseline 55) and Hgb 7.8 g/dL (baseline 11.5). Home medications are held and, after receiving 2 liters of IV normal saline, Ms. Sanders’s blood pressure and dizziness improve, eGFR improves to 45, and Hgb decreases to 7.1.
Dr. Arneson, the internal medicine hospitalist treating Ms. Sanders, consults gastroenterology to perform an EGD and colonoscopy for the patient’s acute blood loss anemia. Given the current Hgb of 7.1, he wants to secure consent in advance for blood transfusion should the Hgb drop below 7.0.
After Dr. Arneson explains the risks and benefits of the procedures he recommends and the likely need for transfusion, Ms. Williams replies, “My mom will not be receiving a blood transfusion. The spike protein from blood that has been exposed to the COVID-19 vaccine will destroy her immune system and kill her.” Ms. Sanders herself says nothing.
Taken aback by Ms. Williams’s refusal of transfusion on her mother’s behalf, Dr. Arneson assures them that with so much uncertainty around COVID, their concern about vaccines is understandable. He reassures them, however, that there is no evidence that the vaccine affects DNA or can infect them with COVID and reviews the serious risks for Ms. Sanders should she need transfusion.
Ms. Williams explains that she has researched the dangers of mRNA vaccines, naming physicians who have been outspoken in articles and on social media. She argues the risks of receiving blood from a vaccinated donor outweigh the risks of declining transfusion. Dr. Arneson is aware of the position taken by the sources she names but knows that it does not represent medical consensus.
Ms. Sanders wants decision making done by her daughter, who declines blood from a vaccinated donor. Dr. Arneson isn’t certain how to proceed.
CASE COMMENTARY
The COVID-19 pandemic drew heightened public attention to the scientific process and how challenging it can be for the scientific community to reach consensus and communicate clearly about the uncertainty inherent in science and medicine. The public was often unprepared to understand why the picture of the pandemic changed repeatedly over time. As the science evolved, differing views about the health threat, changing guidance about appropriate protective measures, and disputes—sometimes heated—across the professional community about what lines of treatment to pursue left the public confused, frightened, and distrustful. “What should I believe? Who can I trust? Why can’t you get the story straight?!”
The pandemic in general and this case in particular pose questions about the ethical responsibilities of individual physicians and the profession to respond to patients and families who encounter mis- or disinformation; to promote health literacy; and to protect the integrity of science and medicine.
Responding to Individual Patients
Along with acting in the best interest of the patient (duty of beneficence) and avoiding harm to the patient (duty of nonmaleficence), respecting patient autonomy is a central principle in health care decision making and medical ethics, fostering the patient’s free, uncoerced choices [1]. Like any other patient, Ms. Sanders has the right to give—or withhold—her consent for recommended care or to have Ms. Williams make decisions for her as her authorized surrogate, including the right to refuse even life-saving interventions.
At the same time, physicians have a responsibility to promote informed decision making. They must “provide enough information for the patient to make an informed judgment about how to proceed” [1]. In doing so, physicians have a responsibility to be balanced, to include their recommendations for care, and to assess the patient’s understanding [1]. They must be confident that the information is accurate [23] and must strive to create “an environment in which honesty can thrive and patients feel that concerns and questions are elicited” [1]. When decision making falls to the patient’s surrogate, by necessity or by the patient’s choice as in Ms. Sanders’s case, physicians have a responsibility to take reasonable care to ensure that the decision reflects the patient’s preferences and best interests [1].
That Ms. Sanders and Ms. Williams refuse recommended treatment based on what Dr. Arneson knows to be scientifically incorrect information about the risks of COVID-19 vaccines creates a dilemma to which he is trying to determine how best to respond.
He might jump in to try to educate Ms. Williams and her mother. He could explain the current science and set out arguments against the position they rely on, and/or direct them to authoritative sources, such as the Centers for Disease Control, in the hope that more information will change their position. Or Dr. Arneson could offer to arrange to have them speak with an expert subspecialist, whom they might consider more knowledgeable or trustworthy, to help them understand the science of COVID and the safety of the blood supply. Yet as patients increasingly challenge physician expertise, simply providing information and advice “has become and inadequate way to disseminate information and promote informed consent” [3]. Moreover, it could be received as disrespectful and unwelcome criticism of their reasoning, especially in the current climate of vaccine hesitancy.
Stepping back, however, since Dr. Arneson wants to be and be seen as a trusted source of information, he could take a different approach and seek to engage the patient and surrogate in a mutual process to build trust. As a recent article noted, rather than assume that better data can restore expertise, physicians “need to understand, in a nonjudgmental way how patients process both information and misinformation” [3].
Rather than try to press information on Ms. Williams and her mother, Dr. Arneson should acknowledge that they all want the decision to be made that will be best for Ms. Sanders. He could ask whether they would be open to having him share his view of the science of mRNA vaccines and its implications for Ms. Sanders’s care and clarify the reasoning behind his recommendation [4]. As the ACP Ethics Manual notes, “Effective communication is critical to a strong patient-physician relationship. … Physicians and patients may have different concepts of or cultural beliefs about the meaning and resolution of medical problems. The care of the patient and satisfaction of both parties are best served if physician and patient discuss their expectations and concerns” [1]. The College’s Resources to Counter Medical Mis/Disinformation provide further information about communicating accurate health care information, responding to trending health narratives, identifying and interpreting reliable information, and identifying credible sources of health information on social media.
Would Dr. Arneson’s dilemma be different if Ms. Williams had declined transfusion on her mother’s behalf based not on mis- or disinformation, but on religious beliefs? For example, most physicians are familiar with patients who are Jehovah’s Witnesses who decline to receive blood products. Not being able to transfuse a patient in certain clinical scenarios makes medical and surgical management more challenging. However, physicians routinely accept such a decision, respecting patient autonomy without questioning the patient’s choice or decision-making capacity when treatment options are declined based on known religious beliefs. While the ultimate outcome of declining treatment is the same here, the reasoning behind the decision presents challenges about how physicians assess, accept, or question patient decisions and decision-making capacity based on weighing and balancing ethical principles, in the context of various sources of information, family dynamics, and other considerations.
Promoting Health Literacy
Physicians—and the profession as a whole—also have a responsibility to promote health literacy and help patients better understand medical information. By sharing his understanding of the current science of mRNA vaccines with Ms. Sanders and her daughter, Dr. Arneson can help them to better consider how uncertainty is part of the scientific process and how thoughtful, rigorous debate is essential to scientific advancement [2]. Additionally, the cumulative impact of health misinformation can adversely affect the health of entire communities. This was particularly challenging during the COVID-19 pandemic response and vaccine dissemination and led the Office of the U.S. Surgeon General to publish and widely disseminate, Confronting Health Misinformation: The U.S. Surgeon General’s Advisory on Building a Healthy Information Environment [5]. The National Library of Medicine offers extensive advice to support individual efforts to make health information more accessible [6].
Promoting health literacy cannot be a passive process and must include efforts at the level of the individual patient, the community, and the health system. A recent systematic review about physician perspectives on health literacy emphasizes the importance of addressing barriers and identifies potential strategies to help ensure that patients receive high-quality, understandable health information [7]. Others have called for addressing the disparities in health literacy highlighted by the pandemic through skills-based training as a component of medical education and for community-based organizations to promote cultural humility in interactions with individual patients and a supportive community and/or health system [8].
Dr. Arneson should acknowledge that what seem promising lines of research at the outset don’t always bear fruit, for a variety of possible reasons—e.g., because ongoing inquiry disproves the idea, or the hypothesis being tested in the research, unearths evidence that calls into question the approach being taken, or reveals flaws in the assumptions on which the theory or research is based. So too, Dr. Arneson should humbly acknowledge that sometimes views that are initially considered incorrect or contrary to prevailing wisdom turn out
Dr. Arneson can use the opportunity to explain to Ms. Sanders and Ms. Williams why he believes the COVID vaccine is safe to help them understand how physicians evaluate levels of medical evidence in making treatment recommendations. Providing accurate information and being transparent about his thought process can not only build trust in his relationship with his patient and her daughter. It can assist them in better understanding claims about treatments and health care offered in social media and other sources in the future and enhance their ability to make informed decisions about their health in collaboration with health care professionals.
As ACP’s position paper on ethics and academic discourse maintains, “Public education, health, and health care literacy should be promoted so that patients and the public have a better understanding of the scientific process and the uncertainty associated with, and evolving nature of, medical advancements” [2].
Protecting the Integrity of Science and Medicine
The COVID-19 pandemic undermined trust among a public already increasingly skeptical about science in the setting of abundant sources of contradictory information on social media and elsewhere. All parties to the scientific endeavor—clinicians, researchers, publishers, educators, health care institutions, regulators—share in the responsibility to protect and promote the norms of “openness, independence, objectivity, and healthy scientific skepticism” critical to the evolution of science [2].
Physicians have a responsibility to use their skill in evaluating the scientific literature, clinical judgment and prescribing authority in the best interests of their individual patients. Prescribing medication off label or providing innovative therapy can contribute to scientific advancement, but must meet ethical standards for assessing risk, possible consequences of foregoing standard therapy, and informed consent [2. Dr. Arneson would be right to offer to share information about uncertainty in science and medicine with Ms. Sanders and Ms. Williams. Physicians who find themselves in situations like Dr. Arneson’s should do their best to be trustworthy by ensuring they share the best available evidence and that they refer patients to reputable sources of health information [2].
Educational institutions have a responsibility to provide the training Dr. Arneson and colleagues need to be able to carry out these tasks responsibly [2]. Institutions should cultivate core scientific values among their faculty and teach them to trainees—by requiring disclosure of conflicts of interest, promoting diversity of views and debate without fear of retaliation, demonstrating humility and respect in the face of disagreement, exercising care in announcing research and clinical advances, etc. [2].
Promoting objectivity in research, e.g., through peer review and requiring that individuals and institutions disclose and mitigate conflicts of interest is fundamental to scientific integrity. Setting preconditions on publication of research findings or failing to report clinical trials can compromise the evidence base on which scientific advancement rests [2]. Raising false expectations or providing misleading information to patients and the public can undermine the credibility of the professional community [1]. A physician or entity who violates accepted standards for disseminating scientific information—for example, not respecting publication embargos or seeking to bring external pressure to bear on publication, as occurred with guidelines regarding consumption of red meat released in the Annals of Internal Medicine [2]—violates ethical principles and compromises scientific integrity. So too do those who disseminate information they know to be false or contrary to best available evidence, which can harm patients and the public and can undermine public trust [2].
As a self-regulating profession, medicine has a responsibility to address misconduct or misleading behavior on the part of its members [3]. But it must do so thoughtfully, with an eye to unintended consequences. Limiting speech around scientific disagreement is ethically problematic, however [2]. In 2022, for example, California specifically amended its statutory definition of unprofessional conduct to include “disseminat[ing] misinformation or disinformation related to COVID-19, including false or misleading information regarding the nature and risks of the virus, its prevention and treatment, and the development, safety, and effectiveness of COVID-19 vaccines” [9]. The provision was repealed a year later as interfering with the patient-physician relationship and having unintended consequences [2].
Importantly, efforts to address disinformation must remember that “today’s yet to be proven therapies can become tomorrow’s treatments” [2]. The goal of protecting the interests of patients and the public must be balanced with that of promoting the commitment to rigorous inquiry and self-corrective critique that define the ethics of science.
Conclusion
As the College notes in its position paper on academic discourse and mis/disinformation, scientific understanding “is a process for seeking truth that leads to provisional knowledge” [2], which knowledge in turn is reviewed and confirmed, modified, or outright contradicted. In the face of a public health crisis, ongoing research and debate in the professional community can leave patients confused about what information and which sources to trust. As Dr. Arneson has experienced, physicians have important roles to play in helping their patients better understand the scientific process and become informed consumers of medical information, and in promoting humility and rigorous, respectful debate among their colleagues.
REFERENCES
- Snyder Sulmasy L, Bledsoe TA, for the ACP Ethics, Professionalism and Human Rights Committee. ý ethics manual, seventh edition. Ann Intern Med. 2019;170:S1-S32. doi:10.7326/M18-2160.
- Snyder Sulmasy L, Burnett JR, Carney JK, DeCamp M, for the ý Ethics, Professionalism and Human Rights Committee. Ethics and academic discourse: scientific integrity, uncertainty, and disinformation in medicine: An ý position paper. Ann Intern Med 2024; July 30. doi: 10.7326/M24-0648.
- Lerner BH. Medical expertise—balancing science, values, and trust. New Engl J Med. 2024;391:577–79. DOI: 10.1056/NEJMp2310424.
- Brody H. Transparency: informed consent in primary care. Hastings Cent Rep. 1989;Sept/Oct:5–9.
- Department of Health and Human Services. Health misinformation—current priorities of the U.S. Surgeon General, 2021. . Accessed 20 September 2024.
- National Library of Medicine. An Introduction to health literacy. Published 4 October 2023. . Accessed 20 September 2024.
- Louizou E, Panagiotou N, Dafli E, Smyrnakis E, Bamidis PD. Medical doctors’ approaches and understanding of health literacy: a systematic literature review. Cureus. 2024 Jan 1;16(1):e51448. doi: 10.7759/cureus.51448.
- Allen-Meares P, Suarez-Balcazar Y, Garcia-Bedoya O, Khare M, Brazil EA, Ford C. Promoting health literacy and cultural humility: CBOs and wraparound services. J Health Care Poor Underserved 2024;35:47–61. . Accessed 20 September 2024.Assembly Bill No. 2098. An act to add Section 2770 to the Business and Professions Code, relating to the healing arts. . Accessed 20 September 202