CAERS SUBSTACK ARTICLE #23
CAERS SUBSTACK ARTICLE #23
When I hear the word ‘capacity’ I think of the ability to contain something, like the capacity of a box to hold a certain volume or weight. With respect to consent in health care, capacity means the ability to understand and appreciate, akin to being able to ‘contain’ the full meaning of an idea.
The default assumption in medicine is always to assume that each individual has capacity unless we can prove otherwise. This is similar to the legal system that assumes innocence until guilt is proven. In both circumstances, it is likely obvious that the reasoning behind such an assumption is based on the idea of respect discussed in my last article. Our starting point is that everyone has certain fundamental rights to control their own destiny that should always be respected and we should not deprive them of these without an excellent justification for doing so.
Consent, whose elements include capacity, disclosure (article #19, ‘Doctoring’) and voluntariness (article #21, ‘Voluntariness‘), was a central focus during the Nuremberg Trials following World War II. In health care, it continues to be the mechanism whereby we assure ourselves that patients will be able to make their own decisions in all but exceptional circumstances.
Those exceptional circumstances often relate to the issue of capacity. Whenever a doctor is attempting to gain consent from a patient for a specific course of therapy, they are actually confirming that patient’s capacity because capacity, like consent itself, is specific to each situation. For example, a person may have the maturity and mental aptitudes to make a decision about a simple matter like having an ultrasound, but not have the maturity and/or mental aptitudes to decide about a complex neurosurgical procedure. Not only is capacity specific to each clinical situation, it can change over time, either improving (as we mature, for example) or worsening (with illness, for example). Many people do not realize, therefore, that consent is never universal or eternal because capacity is never universal or eternal either.
Capacity does not require that patients make their decisions purely rationally, but it does require that they demonstrate that they have the ability to do so. For example, they may fully understand and appreciate the implications of having a very high cholesterol, but still not want to do anything about it. Maybe everyone in their family has the same cholesterol issue and yet none of them have ever had any cholesterol-related illnesses, so their gut-feeling is that they need not worry either. They have the capacity to understand the risk and are comfortable taking their chances, and have the right to do so.
However, there are clinical situations when a doctor may question whether a patient has the ability to understand and appreciate the information presented (disclosure,) and to make a decision consistent with their own values in a rational fashion. When this occurs, there are mechanisms to formally assess someone’s capacity for decision-making. Not surprisingly, there is always some subjective element to this assessment. When you combine that with the fact that humans are not always perfectly rational, and that disclosure ultimately involves doctors making projections into the future, there are significant limitations to the process of consent, but it is the best process we have to offer.
Many measures used during the pandemic have been done without complete disclosure regarding their efficacy and safety. Children, who were clearly at low risk of getting very sick from COVID, were banned from attending school and engaging in many forms of physical activity. Did this policy produce any harm to their mental and physical health, or social development? Was this monitored and the results of such study shared with parents?
Clearly some measures have ignored the issue of voluntariness through mandates. Have the reductions in both risk of transmission and acquisition of serious illness been sufficient to justify mandates that at times seemed somewhat extreme? Forcing a young woman who is pregnant or contemplating pregnancy to take an experimental, gene-based injection or lose her job as a much needed and valued health care worker runs contrary to voluntariness. Have the justifications been sufficiently strong to support such an exception to voluntariness?
Have the authorities assumed capacity in the general population, or have they behaved in a way that was disrespectful of this? Have you felt that your ability to understand and appreciate has been ignored to some degree?
History is replete with examples of consent being ignored without sufficient justification. When information is withheld, voluntariness is overridden and capacity is ignored, very bad things can happen. That’s why the threshold for dismissing consent is so high; it should be the rare exception not the rule.
And exceptions should always concern us, even if we are not sure that harm will ensue.
J. Barry Engelhardt MD (retired) MHSc (bioethics)
CAERS Health Intake Facilitator
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