CAERS SUBSTACK ARTICLE #61
CAERS Substack Article #61
I suspect you know by now that I believe that there is so much that we do not yet know or understand in the world, including the world of medicine. As a generalist, my ignorance is even more profound as I have expertise in nothing.
Perhaps, however, the one area that we understand the very least, and yet is of critical relevance in medicine, is this: how do we, as patients, make decisions? Perhaps the answer seems obvious to you, but it continues to both elude and fascinate me.
The process of Informed Consent is an important one, and one that we have explored in previous articles (#21 Voluntariness, #23 Capacity). It basically affirms the importance of individual autonomy: the right of every person to make decisions for themselves, including medical decisions, free of undue influence or pressure from others (referred to as ‘voluntariness’). It is always assumed that each individual has the ability to understand and appreciate (has ‘capacity’, unless proven otherwise), and therefore has the right to make their own decisions.
It is interesting to note in the context of informed consent that it is not necessary for a patient to make a decision based purely on rational thought; they must simply provide evidence that they are capable of rational thought. If they are capable, they can trust their ‘gut’ instincts, for example, in order to make a decision and we must respect that.
Of course, we often hope that their decision is at least influenced by rational thought because we have come to value it. But as discussed in previous articles, non-rational thought, intuitive thought, often guides our most important decisions in life. Provided that someone does not make an irrational decision (thinking that open heart surgery is the best way to treat toenail fungus), we accept whatever decision they make.
Rational medical decisions are often based on knowledge obtained from the scientific process, and we refer to it as evidence. We trust that so-called evidence has been discovered after careful analysis by people more experienced than ourselves. But is evidence just a binary concept—there either is evidence or there isn’t? Or are there degrees of evidence?
Science attempts to find the most accurate picture of how the world really works by developing a theory. We look for evidence to confirm or deny a theory, and the stronger the evidence, or the more of it we have, the more confident we are that that theory is close to describing the true state of the universe. In general, a larger well-thought-out study will provide stronger evidence than a smaller, weaker study. The stronger the evidence supporting it, the more a theory can explain the world and make new predictions, and the more we come to trust its usefulness.
Any medical decision involves predicting the future based on our confidence in the evidence that supports our theory. In other words, all decisions are probabilistic guesses. How good is the evidence? How well does it help to predict the future? How good are people at interpreting the probabilities a theory provides and utilizing them in decision-making? People make different choices if they are told that a treatment is successful in 95% than if they are told it fails in 5%. People are often more afraid to lose something they already have, than they are willing to takes risks for something they don’t yet have. Not everyone deals with risk in the same way—some are risk-averse and others are risk-tolerant depending on the details of the situation. Some things matter more to us than others, and that may change throughout our lifetime. As we age, often we enjoy adrenaline rushes less and so are less willing to take risks knowing how much can go wrong and how precious, and fragile, life can be.
Emotion plays a large part in decision-making, irrespective of the strength of the evidence. It influences how we interpret evidence, and how we weigh and balance it. It’s easy to get fooled because statistics can be deceiving. Some things are counter-intuitive. For example, the Monty Hall problem (the host of ‘Let’s Make a Deal’) illustrates that point. If one door is excluded after you have made your pick, you are better to switch guesses rather than stay with your original one. And we can be very influenced by what the crowd is telling us what to do.
A lot of our decisions are based on our values. That can be problematic if one has not spent much time reflecting on one’s values and life priorities. To further complicate things, our values change over time and sometimes quite significantly; ask any parent. And what we think are our values in theory does not always align when reality hits us head-on. Many people who state with great assuredness that they would never take chemotherapy for cancer, for example, change their mind when it becomes real, not just an abstraction. In fact, a significant percentage of people ignore their own living will directives when they are actually in an unexpected crisis.
Disclosure, providing all information necessary for making medical decisions, is one of the three pillars of modern-day Informed Consent. But how we process and use the information presented (evidence) to make a decision is still somewhat mysterious, and at times unpredictable. We must simply trust that the complex and poorly understood process of deciding in the context of informed consent is the best we have.
During the pandemic, did you face any difficult decisions? Do you understand how you made them? Are you happy with the ones you made? Might your experiences change how you make decisions going forward?
Hopefully those responsible for many of the major decisions during the pandemic will ask themselves these questions, too. It would be a shame if we did not learn more about this complex business of making decisions in the real world so as to help us the next time around.
J. Barry Engelhardt MD (retired) MHSc (bioethics)
CAERS Health Intake Facilitator
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