CAERS SUBSTACK ARTICLE #19
CAERS SUBSTACK ARTICLE #19
In my previous article I explored what doctors can offer patients. This article looks at how we do that. As is so often the case in life, the ‘how’ can be at least as important as the ‘what’.
You might be surprised that there is more than one way that doctors do what we do. Emmanuel and Emmanuel examined this many years ago and we’ll see shortly that their work relates to ethics in a very crucial way. They suggested that there are four ways that doctors can assist patients: 1) by being providers of information; 2) by being interpreters of that information; 3) by helping patients to deliberate about that information; 4) by making decisions for patients. Fittingly, these models are referred to as informative, interpretive, deliberative and paternalistic, respectively.
The informative method is straightforward—the patient simply wants to be educated, something that is hopefully accomplished with every doctor visit of any kind. A good example is a person wanting to understand more about cholesterol in general before doing any testing. The interpretive visit goes a step further and involves that same patient wanting to understand the significance of their specific cholesterol levels after laboratory testing is complete.
The deliberative model enhances the interaction between the patient and doctor wherein they discuss what might be done to lower the patient’s cholesterol if it is elevated. Such deliberation requires data, of course, but the decision to engage in certain interventions, such as consultation with a dietician or taking a medication, is done in the context of the patient’s value system. The doctor works with the patient to explore the various options in order to figure out what the patient feels is the best choice for them. Ultimately it is the patient who must make the decision because they are the ones with the high cholesterol that might contribute to a heart attack, not the doctor. And they are the ones who will have to take the cholesterol pill daily, for example, and assume the associated risks and suffer any possible side effects, not the doctor.
This model of interaction is considered the ideal because it respects the patient as a unique individual who is capable of making their own life decisions and should have the right to do so. However, if we look at the history of medicine, this model is relatively new.
Until recently, the fourth model, paternalism, has dominated medical practice: the doctor essentially made the decisions for the patient. In part that may have occurred in the past because people tended to visit doctors only after they had exhausted all other options and many of the measures used by doctors reflected that desperation. There are still many times when paternalism is appropriate: you are brought unconscious to a hospital with no one who can speak for you and the doctor must do what is medically necessary to save your life; or you are actively suicidal and the doctor must make a decision to admit you to hospital against your will for assessment in the hope of deterring you from harming yourself. And once you are no longer unconscious or someone can speak for you, for example, paternalism must end. But these are more the exception than the rule. So, how do we decide what qualifies as an exception? That’s where ethics enters with the concept of consent.
In the historical use of paternalism, the doctor communicated little to the patient and simply did what they thought should be done. Over time, as people became more educated and assertive, they demanded that the doctor explain the proposed treatment beforehand so as to allow for refusal. Initially the doctor would tell the patient what they, the doctor, thought the patient should know, but over time this evolved to telling each patient what the doctor thought most patients would want to know. It finally dawned on the profession that each patient is unique, as is their medical situation, and thus the information should be individualized to meet the needs of each particular patient. This process of relaying information is referred to as disclosure: making sure that all information, good and bad, that a patient feels could be helpful in making their decision around treatment be conveyed to them in a way that they can understand, with the opportunity to ask questions until satisfied. This is a crucial feature of the Nuremberg Code that developed after the atrocities of Nazi Germany during World War II. It was instrumental in the development of the concept of consent.
Consent involves three aspects: the disclosure mentioned above (‘informed’), capacity (the ability to understand and appreciate the nature of the disease and the proposed treatment, and capacity is always assumed until proven otherwise) and voluntariness (the patient is completely free to make their own decisions without coercion of any kind).
As is likely obvious, consent reflects the ‘how’ of practising medicine. Consent is supposed to guide us in everything we do as physicians. That means that we must provide a very powerful justification if we are to skirt the issue of consent. As with paternalism above, we must have very convincing reasons any time we ignore capacity, disclosure and voluntariness.
Has consent been utilized during the pandemic? Was disclosure adequately done? If not, were the justifications for not utilizing the process of consent or not disclosing information sufficiently powerful and applied appropriately? Were the boundaries as clear as when a patient is unconscious or suicidal?
I’ll explore voluntariness and capacity in other articles, because these elements of consent speak to the very heart of health care. Recent history has shown us what can happen when we do not reflect deeply enough on them.
J. Barry Engelhardt MD (retired) MHSc (bioethics)
CAERS Health Intake Facilitator
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