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A Grateful but not Passive Patient: Our JAMA article.
July 26, 2016
Several days after we met in Baltimore to discuss and plan a video about our BRCT concept, Erik did not feel well. Always active--he walked several miles uphill on that day to meet Andy--Erik was not used to being ill. But he had some frightening chest pain and could not get out of bed. He called Andy that night, and Andy sent him to the emergency room. In fact, Erik was in the throws of a serous heart attack. He was taken immediately to the catheter lab, had two stents placed, and then was stabilized in the coronary care unit.
Eric to this day credits the medical team for saving his life. But what transpired subsequently in the hospital revealed how little doctors actually listen to their patients, present accurate medical information, and base their plan on shared decision making. Erik was exposed to potentially dangerous over-treatment and was not taken seriously when he sought to learn more about his care options. When he left the hospital the medical team felt he was being irresponsible for eschewing some of the "essential" medicines mandated by his medical conditions. In fact, the medicines he was taking were making him tired and short of breath. Erik and Andy used BRCTs, Erik's individualized reactions to medicines, and Erik's own personal goals to trim his medicine list, with the result that he regained his strength and was receiving treatment we believe is giving him the maximal benefit with the least risk. Every person responds to treatment uniquely and has different wants and needs, and so with shared decision making an optimal care plan can be developed that is individualized and offers the best chance of success. This is not what happened to Erik in the hospital, and that is why we decided to use the forum of JAMA to tell his story.
CLICK HERE to read a copy of the article, and click JAMA IM to go to the site, where you can write a comment or tweet. The article has received a lot of attention, mostly positive, but some questioning if the decisions made by Erik and Andy were denying him optimal care. Certain protocols suggest that Erik should have been treated more aggressively, but those protocols are designed not for Erik, but rather for theoretical patients that do not exist in reality. With BRCTs, had they been used in the hospital setting, had they been employed by the medical team to engage in a meaningful conversation with Erik about the risks and benefits of treatments, then Erik's hospital experience would have been more fulfilling and fruitful. Protocols and generic treatment do not help individual patients; shared decision making using accurate and easily comprehended information will provide the best care possible. It is time that hospitals, and all medical institutions, understand that shared decision making is the best way to provide optimal care.
In future blogs we will use BRCTs to evaluate several of the decisions forced upon Erik in the hospital, demonstrating the choices that Erik made using accurate and understandable information. None of these BRCTs were provided by his medical team, which clearly was unfortunate. Rather, the medical team simply told Erik what he had to do, offering him no explanation or choice. The result could have been medically dangerous for him. Luckily he took matters in his own hands and, together with Andy, chose a course that gave him the best outcome. It is unfortunate that Erik had to have a heart attack, but it was also enlightening to him, showing him just how far we have to go to enable quality and individualized medical care.