It was a little before midnight when I found myself in an odd situation during my cardiac critical care rotation. There was a new consult for admission from the ED. The patient—a sweet, older man his late 60s—laid in the ER stretcher. His wife and I flanked him on either side. While she was calm and poised standing to his left with a reassuring look on her face, I stood on his right, befuddled and lost for words, still drinking in the curious and unique conversation I just finished having with them.
In spite of his history of having a previous heart attack less than a decade ago that required placement of cardiac stents, the patient and his wife decided they did not want to be admitted to the hospital. They disregarded the fact that he had a classic and concerning triad of substernal chest pain, radiating into his arm (only just relieved by nitroglycerin), and acted in pure defiance of the worry and concern that I had for a man who was no doubt having an NSTEMI. They were unfazed by the blundered look on my face and jointly explained that they would prefer to embark on a one-and-a-half hour drive to treat his “mini heart attack” at a hospital closer to home and family.
My midnight anomaly was the result of the sweet couple visiting the city for a short vacation, even while the patient unexpectedly found himself suffering from chest pain just one night shy of their planned departure. He was no stranger to the symptom, as he had experienced similar pains just prior to his last major heart attack. Usually, at our institution, a patient with his history and symptoms would need to be monitored in a Cardiac ICU setting to ensure that he was not having an ischemic cardiac event.
The typical plan after admission generally diverged into two potential treatment courses. If signs, symptoms, or lab data provided more evidence of ongoing cardiac tissue death, he would require a procedure to evaluate and help restore blood flow to his starved heart muscle. Alternatively, if things remained stable or improved, the admission would serve as an observation period while the stressed heart relaxed, requiring no acute, invasive intervention.
That night, I did my best to explain this to the vacationing grandparents. I told the patient and his wife that I honestly could not say for certain which path he would end up on. I did my best to try and stifle my desire to inject my own bias for what I’d prefer for myself or a loved one to make when faced with the decision.
In the end, they decided that the risk of this being a major ischemic event paled in comparison to a hospital stay far away from friends and family. So, they signed the infamous “AMA” paperwork in the ED and prepared to leave.
As I slinked out of their room—defeated in my quest to treat his medical condition—I overheard his wife jokingly say to her husband, “Well everyone just thinks we’re crazy now.”
On my way out of the ED, the emergency room attending who also made a valiant effort to convince them to stay came and found me. “They’re Cajuns, you know,” he began to explain to me. “And in my experience, they have their own perception of risk. Unlike the usual American, a Cajun’s understanding and acceptance of risk are far higher than any other group of patients I’ve worked with.”
Although it was an unsettling experience for me, with all the information about their treatment options and the risks associated with leaving, they made the right decision for them. And now as I reflect on that evening, I feel bad for trying to force a treatment plan that did not align with their priorities and goals. They made a decision to “act against medical advice” — a decision I wouldn’t have made if I were in their shoes, and a decision I would force a loved one to overturn—but a decision nonetheless.
Risk discussions are not about forcing a patient to chose the “right” care plan. And that rings true whether it’s a conversation about deciding to undergo a surgery, receive a bedside procedure, start a medication, or any of the myriads of choices and branch points related to the care of patients. It serves as a way to provide an open, two-way exchange of probative information and professional opinion in order to allow a patient to make an informed decision about their own medical care.
As physicians, we have the difficult job of deciding not only what, but how this information is delivered to patients. And making these conversations even more complex and nuanced is finding a way to carry out these conversations devoid of personal bias. That’s what makes the process of shared decision-making so darn hard. Not to mention the spectrum of patient medical literacy and the variability of a patient’s level of acceptable risk. Because of this, we sometimes find ourselves feeling like Goldie Locks, stammering in a trial-and-error fashion through discussions with different patients in an attempt to figure out just the right way to have these discussions. Luckily, as with almost every other aspect of medicine, risk discussion and shared decision-making have been the source of academic research for a long while.
In fact, if you’re like me and still working on figuring out a good style for discussing risk with patients, there are plenty of resources to help (see below). But I’ve found that it can be summed up by focusing on the four C’s of shared decision-making: context, content, clarity, and care.
- Provide your information in the most meaningful and useful way for the patient you are communicating with.
- Tailor your information based on the patient’s unique situation.
- Realize and remember that benefits to a patient or their caregiver can be subjective.
- Provide enough information to show your competency in your field in a way that minimizes misinformation.
- Use absolute numbers instead of relative risk. (Some patients have different levels of magnitude for words like low, medium, and high.)
- Use the same denominator. (If different denominators are used, the patient can confuse this for greater risk, e.g. — instead of saying 1 in 25 and 1 in 200, use 40 in 1,000 and 5 in 1000).
- Provide both positive and negative perspectives to diversify the benefits and risks discussed.
- Consider providing only the most critical information for the patient’s decision-making even at the expense of completeness.
- Use standardized vocabulary for that specific patient’s background.
- Provide the information in a way that will provide the patient with the best chance of understanding the risks and benefits being discussed.
- Be honest and don’t provide false reassurances.
- Remember that risk discussions play a crucial part in the development of a strong and lasting patient-physician relationship.
- Use a patient-centered approach to provide the space and information (not just data) to help your patient come to an informed decision
- Shared decision-making and risk communication, when done right, can lead to a better understanding of the care plan; patients feeling more active in their care; improved quality of care; and less deception and coercion.
Finally, here are some extra resources I’ve found helpful in my quest to improving my risk discussions:
- Paling J. Strategies to help patients understand risks. BMJ : British Medical Journal. 2003;327(7417):745–748.
- Corke CF, Stow PJ, Green DT, Agar JW, Henry MJ. How doctors discuss major interventions with high risk patients: an observational study. BMJ : British Medical Journal. 2005;330(7484):182.
- Lloyd A, Hayes P, Bell PRF, Naylor AR. The role of risk and benefit perception in informed consent for surgery. Med Decis Making. 2001. Mar-Apr;21(2):141–149.
- Naik G, Ahmed H, Edwards AG. Communicating risk to patients and the public. The British Journal of General Practice. 2012;62(597):213–216.
Dr. Chioma Udemgba is a third-year Med-Peds resident physician currently training at Tulane University in New Orleans, LA. She is passionate about creative writing, graduate medical edication, and working with underserved populations.
Dr. Udemgba is a 2018–2019 Doximity Author.