Other people matter: Reexamining informed consent to combat misinformation

We explore how in the current information context, the medical practice of informed consent, with its sole focus on patients, interacts with misinformation to exacerbate the harms caused by misinformation. In response, we argue that practitioners should expand informed consent to include the consequences of patient decisions on others.
 
Information is critical for informed and autonomous decisions. Accurate information allows people to prevent harm to both themselves and others. The opposite is also true; misinformation can impair decision making and can cause harm to the decision maker and others. Much of our understanding of information’s importance for autonomy has centered on the practice of medicine, emphasizing the right of patients to consent to medical care, and to do so on the basis of adequate information. In the clinical context, informed consent is the standard mechanism used to enable patients to have the information they need to make decisions that reflect their autonomous wishes. The right to informed consent also reflects the moral and social value we place on free will and self-determination. But as currently practiced, informed consent does not realize those goals because it fails to consider the impacts of medical decision making on third parties and the proliferation of medical misinformation. If we want to respect patients’ autonomy, the practice of informed consent needs to be reformed.

Informed consent is based on the recognition that while physicians and other health care practitioners presumably have a greater understanding and knowledge of health information than (lay) patients, they do not necessarily know what is right for a particular patient. Ideally, informed consent allows health professionals to convey important knowledge to patients, who can then exercise their own choices based on their preferences and circumstances. (1)

Underlying the principle of informed consent is the idea that the choices to be made are the patient’s alone. This assumes that medical decisions are self-regarding decisions, to borrow the language of John Stuart Mill. (2)  But that assumption is not true; medical decisions are rarely solely self-regarding. This is obvious when it comes to decisions that relate to communicable diseases. Refusing to accept a vaccine that lowers the risk of transmission will increase the risk that third parties will contract the disease. (3) Likewise, the decision not to adhere to treatment for tuberculosis may endanger others who can contract drug resistant forms of that disease. (4) Conversely, the decision to use PreP (pre-exposure prophylaxis) lowers the likelihood that the patient will infect their sexual partner with HIV. Individual decisions affect the health of others. (5)

Medical decisions that do not pertain to a communicable disease can also have significant third party effects. Consider the decision of a parent who needs a blood transfusion to stay alive. The decision to decline the treatment may result in a child losing a parent, changing the course of their life. Or imagine the case of an individual who chooses to avoid, due to cost or inconvenience, screening for a treatable cancer. That decision may result in the need for treatment that is more painful, costly, and burdensome not only for the patient, but for their family, who may suffer even more if the patient succumbs to a preventable death. Even strangers may be affected when individuals make decisions that land them in overcrowded emergency rooms, forcing others to wait longer for care. As John Donne stated, “no man is an island.” (6)

Given the interwoven nature of the health care system, treatment decisions inevitably have economic consequences that spill over to third parties. For example, delayed or unnecessary treatments can add to the health care costs borne by employers, fellow employees, and taxpayers.

None of this challenges the value of autonomy understood as self-determination. In many if not most situations, the impact of a treatment decision on the individual outweighs the relatively indirect and sometimes trivial impact on others. But the analysis above suggests that informed consent, as currently understood, relies on an unrealistic assumption about the impact of medical decisions on patients and others. Patients are not as isolated, nor are their decisions as self-regarding, as the current practice of informed consent suggests.
 

Equally, many patients are not as solipsistic as the model of informed consent presumes. Because patients are embedded in communities and relationships, they may very well want to know the implications of their decisions on others. During the COVID-19 pandemic, for example, many people went out of their way to help community members. At least early in the pandemic, there was a rise in both mutual aid associations and philanthropic donations. People value others and don’t want to harm them. (7)

Once people recognize that their health decisions are rarely self-regarding, they ought to be concerned about the risks they pose to others, at least if John Stuart Mill had his way. And when people acknowledge that they are embedded in communities, we should not be surprised to learn that they are concerned about others. The health care context is a good place to nurture our responsibilities to others. This would require a more nuanced conception of informed consent than currently prevails.

The need to reconsider informed consent in light of patients’ interests in third party effects is further complicated by the current, and deeply problematic, informational environment. Today, many or most people do not rely on their care providers for all or even much of the health-related information they consume and use when making health-related decisions. They often secure information from the internet, their neighbors, news, their workplace and social media. Studies show that up to 81.5% of adults living in the United States use the internet to search for medical information. (8) This may be because it’s so easy to access information from the internet and patients often cannot reach their providers as needed; assuming they even have a provider, which many do not. Or patients who do have providers may not trust them. Furthermore, overly busy providers may not have the time to answer all of a patients’ questions.

Unfortunately, patients may overestimate their ability to understand or assess the information they receive from lay sources. (9) Some of the information that patients receive from these sources, including the internet, is erroneous or misleading. In some instances, it is spread by actors who seek to profit from poor information (see Purdue Pharma; tobacco companies (10); anti-vaxx doctors pedaling ineffective treatments for COVID such as ivermectin). In other cases, those who convey disinformation simply hope to create division and chaos (11) or use the discord to attain political advantage (12). Some is simply mistaken, as misunderstandings by lay people can go viral. Because so many medical decisions affect third parties, decisions that patients make based on erroneous information have the potential to not only affect them, but others as well. In this sense, the fact that patients do not rely on advice from their providers to the extent that informed consent presumes, magnifies the risk of third party harms.

Yet despite the ideal of informed consent, the health care system increasingly relies on patients to secure relevant information from “outside” sources. Insurers don’t compensate providers adequately to enable them to fully inform their patients; nor do hospitals or other provider organizations encourage providers to do so. Patients may also find that even when they can talk to their providers, their need for information may go unmet. For example, in the case of long COVID, many patients, aka long haulers, who turned to their providers about their symptoms were met with skepticism and medical gaslighting. It is not uncommon for physicians to deny the existence of something they do not understand.

There are many other reasons why patients may not trust the information their providers may offer them. The long history of racism in health care has bred understandable suspicion on the part of many patients of color. Even today, studies show that the symptoms of Black people are often given less attention than those of white patients. (13) More generally, lack of cultural competency may erode the patient-provider relationship, leaving many patients to rely on others for their health care information, often to the detriment of themselves and others.

Given the high value placed on individual autonomy, and the pressures on the health care system that thwart meaningful conversations between patients and their providers, it is difficult to imagine there will be significant change any time soon. Similarly, it is difficult to imagine that governments will provide enough financial support to ensure that medical professionals have the time and wherewithal to provide information about not only the impact of patients’ decisions on themselves, but on third parties.

Nevertheless, ethicists and providers can adopt a few modest changes to reduce the harmful effects of misinformation, including to third parties. First, health professionals should recognize an expanded conception of informed consent that includes a discussion about the impact of a patient’s health care choices on other people. In other words, the practice of informed consent should accept that other people matter. Embracing a vision of informed consent that includes our embeddedness in communities can begin to change on-the-ground practices. Informed consent is a good place to begin to change the conversation. And to ensure that this conversation takes place physicians should be reimbursed for it. Physicians should be reimbursed for it.

Second, health care providers and ethicists must try to rebuild trust. Some scholars, such as Maya Goldberg, (14) argue that vaccine misinformation is given credence precisely because experts have betrayed the public’s trust. We may not go quite that far – there are also bad actors pushing disinformation and discord – but it seems likely that breaches of trust by health professionals (gaslighting patients, racism, misogyny, not to mention saying that they lack time to listen) and public health authorities (including those who peddled misinformation during the pandemic) (15), as well as poor messaging, have helped to erode trust. (16)

Can such steps make a difference in this informational environment? We don’t know. We do believe it is time for ethicists and health professionals to try. COVID has provided us with a window of opportunity for norm change, one that will have a bandwagon effect. If we recognize that others matter when we make medical decisions, why not food, housing, and the environment. Hopefully, we can move forward before the next pandemic.

Patricia Illingworth and Wendy E. Parmet

References

1. Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit, 1972.
2. John Stuart Mill, “On Liberty”, 1859.
3. Phadke, V. K. et al., “Association Between Vaccine Refusal and Vaccine-Preventable Diseases in the United States”, 2016.
4. Melsew, Y. A. et al., “Risk factors for infectiousness of patients with tuberculosis: a systematic review and meta-analysis”, 2018.
5. Ruchita Balasubramanian et al., “Projected Impact of Expanded Long-Acting Injectable PrEP Use Among Men Who Have Sex With Men on Local HIV Epidemics”, 2022.
6. Donne, J., “No Man is an Island”, 1624
7. Patricia Illingworth, “Giving Now, Accelerating Human Rights for All”, 2022.
8. Finney Rutten L.J. et al., “Online Health Information Seeking Among US Adults: Measuring Progress Toward a Healthy People 2020 Objective”, 2019.
9. Canady, B.E. and Larzo, M., “Overconfidence in Managing Health Concerns: The Dunning-Kruger Effect and Health Literacy”, 2022.
10. United States v. Philip Morris USA, United States District Court, District of Columbia, 2006.
11. Broniatowski, D. A. et al., “Weaponized Health Communication: Twitter Bots and Russian Trolls Amplify the Vaccine Debate”, 2018.
12. Henricksen, W., “Disinformation and the First Amendment: Fraud on the Public”, 2022.
13. Hoffman, K. M. et al., “Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites”, 2016.
14. Maya Goldberg, “Vaccine Hesitancy: Public Trust, Expertise, and the War on Science”, 2021.
15. Rasmussen, S. A. et al. “Addressing the Need for Accountability in Public Health”, 2023.
16. Patricia Illingworth, “Trusting Medicine”, 2005.

Received: 11.7.23, Ready: 18.08.23,. Editor: Federico Germani and Alexander F. Brown