We at Accolade help people make decisions. We do not make decisions for them and we do not judge the quality of their decisions, rather we help them put voice to their own values, their own beliefs and help them understand their options as they enter and travel through the maze that is health care. When one reads the scholarly articles about “decision analysis” (and there is an entire body of study, even an organization and journal dedicated to the science of medical decision making) there are critical truths that Accolade Health Assistants deal with every day that are only rarely addressed in the scholarly literature.
In a wonderful article in the New England Journal of Medicine, entitled, “There is More to Life than Death”, the husband wife team of Jerry Groopman and Pamela Hartzband point out that while the emperor may have clothes those clothes are rather tattered rather than being the sweeping robes of royalty. They point out the central focus in decision research is on death as the main, and often only factor to be considered while the truth is that people are complex beings who make decisions that are based on factors in which the risk of death is but one of many. How will my decision affect my family, my ability to work, my ability to be independent, my need for money, my relationship with God if I am religious? These are just some of the factors that go into every decision that involves the state of one’s own body and well-being.
Groopman and Hartzband further point out that while decision support may encourage decisions be made before the issue is possibly present, hence the push towards advance directives and the public discussions of PSA screening and mammography testing, it is virtually impossible to anticipate how one will look at a situation until one is in that situation. They state: “”But these calculations are flawed. They require people to imagine themselves in a health state that they haven’t experienced.” This brings to mind a quote from Freud who said, “We cannot, indeed, imagine our own death; whenever we try to do so we find that we survive ourselves as spectators.” Freud’s statement is not only true for death but also holds true for all health issues. We cannot really imagine our own illness and our own individual decisions that we have to make when moving through the progressive nature (progressing towards resolution, chronicity or death) of any illness. Hartzband and Groopman point out that this is due to what cognitive psychologists call “focusing illusion”. That is the illusion that occurs when one tries to anticipate the global impact of any future change especially a health change. People tend to focus on one aspect of the change and disproportionately weigh its effect on their lives. Thus their decision when nothing is really at stake is different than when they are actually in the situation.
This type of “focusing illusion” occurs in a sense with medical decision researchers. The fact that they put numbers against these often faulty assumptions based on their own focusing illusions make their conclusions appear to be precise when in reality that is false precision. They tend to focus on death as an outcome and also tend to put their own values and their own numbers, on quality of life, rather than take the much more difficult step, and the step that may be virtually impossible to quantify, of trying to understand the individual process of decisions making based on the global impact to different people with different beliefs, values, family issues, economic issues, and psychological issues.
At Accolade, we help each individual with their own decisions as they work through their personal health decisions, best done with their doctors, at the time they need to make those decisions. We use those numbers that our brilliant colleagues in medical decision research develop but help people understand their limitations and the assumptions that lie beneath the surface of the numbers. We focus on their values, their needs and their family support as they go through their decision making process.
Drs. Groopman and Hartzband end their article with the following paragraph which sums out the issue quite well so I will also end this commentary with their words.
“Basing decision on the outcome of death ignores vital dimensions of life that are not easily quantified. There are real complexities and uncertainties that we all, patients and physicians alike, confront in weighing risk and benefit. Wrestling with these uncertainties requires nuanced and individualized judgment. It is neither ignorant nor irrational to question the wisdom of expert recommendations that are sweeping and generic. There is more to life than death.”