Opinion

COVID-related beliefs and challenges for informed consent

There is no shortage of beliefs related to the COVID-19 pandemic and how society ought to respond to it.

Amid this, clinical ethicists (such as three of the authors) have been asked, Do the beliefs patients hold about COVID-19 indicate anything about their ability to provide informed consent to treatment? More specifically, Can patients who deny the existence or nature of COVID-19 have the capacity to consent to the treatment of COVID-19?

The answers to these questions determine who will decide what happens to a patient’s body – the patient, or a substitute decision-maker. If a patient denies the existence of the SARS-COV2 virus, the nature of the illness it causes or the appropriate treatments for COVID-19, does that indicate someone else ought to be making consent-related decisions for them?

Fortunately, in Ontario the law allows for patients to challenge findings of incapacity for treatment decisions through the Consent and Capacity Board (via a Form A Application). Normally, we could look to this board’s decisions for guidance, but to our knowledge no Form A application related to beliefs about COVID-19 have been heard by them to date. Without this guidance, we have suggested that even when there is disagreement between a patient and a physician related to the SARS-COV2 virus, the patient might still be capable of providing informed consent. Where such disagreements exist, we suggest the relationships between three things need to be considered: (1) the treatment being proposed; (2) the content of a patient’s COVID-related belief; and (3) a patient’s abilities to understand and appreciate the information related to the proposed treatment. We focus our arguments specifically on the Ontario context, but our general reasoning applies across the country.

Ontario’s Health Care Consent Act (HCCA) states that physicians (and all health practitioners) must obtain informed consent before providing any treatment that is not an emergency. Informed consent requires the patient (or the incapable patient’s substitute decision-maker) to be capable. The HCCA states that capacity is decision-specific. In other words, when a physician is evaluating a patient’s capacity to consent, that physician must first start by outlining the treatment that is being proposed. The physician provides information about the nature of the treatment, expected benefits, risks, side effects, alternative courses of action and likely consequences of not having the treatment. This is provided because consent must be informed.

Most treatment proposals in hospitals are unrelated to COVID-19, and most beliefs and values held by patients are unrelated to COVID-19. However, in some cases a physician will propose treatment related to COVID-19 to a patient who has beliefs or values that are related to this illness or the SARS-COV2 virus. These beliefs could be about the existence or source of the virus, the impact on one’s body or the various medications or interventions to prevent or treat COVID-19 symptoms. When evaluating a patient’s capacity in these cases, the physician must determine whether (and how) that patient’s particular belief about COVID-19 relates to the particular treatment plan being proposed.

The HCCA states that health-care providers can presume patients are capable “unless … there are reasonable grounds” to think otherwise. When a patient’s COVID-19-related beliefs do in fact relate to the treatment being proposed, physicians still must determine if the beliefs compromise both the patient’s ability to understand the relevant information and the ability to appreciate the reasonably foreseeable consequences of the treatment decision. Only if the patient’s COVID-related beliefs impair the patient’s abilities to understand and appreciate information related to the proposal would they be relevant.

Unfortunately, the HCCA does not provide us with a definition of “understand,” nor of “appreciate;” however, we can gain insight from the Supreme Court of Canada’s (SCC) 2003 Starson vs. Swayze decision. The SCC maintains that to have the ability to understand, a person must be capable of “intellectually processing the information” as it applies to the proposed treatment, including the relevant risks and benefits. Referring to an earlier work, the SCC also identifies three “common clinical indicators” of the ability to appreciate: (1) the ability to “acknowledge the fact that the condition for which treatment is recommended may affect” them; (2) “whether the person is able to assess how the proposed treatment and alternatives, including no treatment, could affect his or her life or quality of life”; and (3) whether “the person’s choice is not substantially based on a delusional belief.”

As stated in Starson v. Swayze, a person can be capable without “[a]greement with a medical professional’s diagnosis per se, or with the ‘label’ used to characterize the set of symptoms.” In other words, a patient might be capable of consenting to a treatment plan that addresses the COVID-19 symptoms while simultaneously believing there is no SARS COV2 virus that caused those symptoms. As long as the patient and the physician agree on what the proposal refers to, the difference in the terms that they use to refer to it (e.g., “lung infection” or “COVID pneumonia”) is inconsequential as far as capacity to consent is concerned – what matters is the relationship between the belief, what is being proposed and the patient’s ability to understand and appreciate.

Capable patients have the right to make health-care decisions, even seemingly foolish ones, for themselves.

Their disagreement over words, in itself, likely will tell the physician little about the patient’s capacity to consent to the treatment proposed. That is, the fact that the patient and the physician refer to the illness with different words does not tell us much (if anything) about whether the patient has the ability to understand and the ability to appreciate the decision to consent (or withhold consent).

Bearing this in mind, physicians must be careful to avoid a finding of incapacity based on an evaluation that took place using words that the patient cannot accept. For example, the patient who refuses a “COVID vaccination” because it is called that might capably accept the treatment if told, “This will help prevent the illness that brought you to hospital from recurring.”

In its decision, the SCC says that “a person cannot be found to lack capacity on the basis of lack of information about his or her illness or the fact that he or she holds contrary views to a prescribed diagnosis.” The SCC decision states that “the fact that the person’s actual conclusion does not agree with that of other people, for example medical experts, does not in itself demonstrate lack of understanding or capacity.”

Cases in which the patient disagrees with both the name and presentation of the illness are much more likely to indicate incapacity than cases in which disagreement is about names alone. Although the patient can disagree with the physician’s diagnosis and have a different belief about what is happening, the SCC clarified that to be capable, a patient must be able to recognize he or she displays the “manifestations” of the condition. Specifically, the SCC said, “if the patient’s condition results in him being unable to recognize that he is affected by its manifestations, he will be unable to apply the relevant information to his circumstances, and unable to appreciate the consequences of his decision.”

The SCC decision suggests that patients who recognize COVID symptoms in themselves might still be capable even if they do not think those symptoms are a bad thing. The SCC states that although patients must recognize an illness’s manifestations, they are “not required … to … characterize the condition in negative terms.” We think “condition,” as used in this sentence, refers not only to the condition being treated but to the patient’s overall mental and physical condition, which might include refusal to believe in the existence of the SARS-COV2 virus.

Is it possible for a patient to disagree with the physician about not only the name and presentation of an illness but also its cause, and still be capable? We argue that if the treatment proposal relates to the cause of the symptoms (rather than to the symptoms alone), it is likely that patients’ beliefs will affect their ability to understand and appreciate the information related to the proposal. It is important to note that the attention on a patient’s belief in the non-existence of COVID has changed over the course of the pandemic – this is because what can be proposed has also changed. In March 2020, when COVID-19 could be treated only symptomatically, a patient’s belief in the cause was less relevant (or irrelevant) to the evaluation of the patient’s capacity than it is now in April 2022, with the approval of antiviral medication. We argue that patients’ beliefs in the existence of the virus itself are becoming more relevant to evaluations of capacity as more preventative approaches become available – the patient may be capable to consent to treatment of COVID symptoms while being incapable to consent to prevention of a condition of which he or she denies the existence.

Patients have always had personal beliefs and values that influence their health-care decision-making; this has not changed in the context of this pandemic, and it will endure beyond it.  Whether or not these disagreements indicate anything about the patient’s capacity to consent requires careful reflection on the relationship between the three elements outlined above – proposed treatment, patients’ beliefs and ability to understand and appreciate – that always will need to be determined at the time. Furthermore, there are different roles in the consent process and, ultimately, capable patients have the right to make health-care decisions, even seemingly foolish ones, for themselves.

Acknowledging this right and recognizing that each patient comes with his or her own unique set of beliefs and values can help physicians (and all health-care practitioners) provide truly patient-centered care, despite disagreements that may arise.

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Authors

Jill Oliver

Contributor

Jill Oliver is Community Ethicist at William Osler Health System, and Lead of the PoET Project.

jill.oliver@williamoslerhs.ca

Angel Petropanagos

Contributor

Angel Petropanagos is the Quality Improvement Ethicist at William Osler Health System.

angel.petropanagos@williamoslerhs.ca

Megan Bailey

Contributor

Megan Bailey is a Clinical Ethics Intern at William Osler Health System.

meganbailey.co@gmail.com

Babitha Paulose

Contributor

Babitha Paulose is a Clinical Ethics Intern at William Osler Health System.

babithapaulosep@gmail.com

Zachary Walbaum

Contributor

Zachary Walbaum is a Clinical Ethics Intern at William Osler Health System.

zachwalbaum@hotmail.com

Mark Handelman

Contributor

Mark Handelman is a Senior Lawyer and Member of the Ontario Consent and Capacity Board

Paula Chidwick

Contributor

Paula Chidwick is the Director, Research & Corporate Ethics at William Osler Health System and the founding Director of Osler’s Ethics Quality Improvement Lab.

paula.chidwick@williamoslerhs.ca
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