“How do I even know what questions I should be asking?”
A father said as he stood over his 8-year-old daughter, Sophia, who had been diagnosed with IBD a few months prior. They had traveled a distance from where she was first diagnosed to get a second opinion at a large tertiary care children’s hospital. There was a perception hovering in the air that the family had presented to the ED simply to “cut ahead” of others on a busy clinic schedule to see a specialist, potentially taking advantage of an already stressed hospital system. Those who work in the field of pediatrics, however, know very well the protective, oftentimes fierce nature of scared or nervous parents. They will do whatever it takes to try to provide the best care for their child.
The father asked questions I’ve seen others in the past hesitate to voice. How will the decisions they make in the days to come affect their daughter’s long-term quality of life? Based on their decisions now, was there a way to predict how much her life would revolve around visiting the doctor or being admitted to the hospital? How many sleepovers, vacations, or school field trips would she miss? How could they make their daughter feel like a normal 8-year-old, despite the diagnosis she would carry with her for the rest of her life?
Curiosity coupled with a blend of concern and frustration, he asked the attending gastroenterologist a barrage of questions related to the long-term management of IBD: Curiosity, for the array of treatments possible for his daughter’s chronic systemic illness; concern, for the nuances in the risks versus benefits for each treatment option that he felt hadn’t been explained by their first physician. Frustration at the potential of having to repeat invasive diagnostic tests that were already done at another institution months ago. The conversation left the family wondering how they could choose the best route – how would they know what was best for their daughter when presented with multiple reasonable options?
The problem with many chronic medical conditions, such as IBD, is that managing these conditions is based on assessing a combination of the patient’s symptoms and physical exam, as well as imaging, histopathological, and endoscopic studies. Although we try to establish “standards of care” or “treatment algorithms,” the path that a disease takes may not fit the molds that medicine tries to force it into. It is in these crossroads where families hope they can trust and rely on their physicians and the medical community to help them choose the path that is right for them.
A few years prior to entering residency, I assumed patients obtained multiple medical opinions simply because they may not have liked the options initially presented to them by their physician. When they didn’t hear the answer they desired, perhaps another physician would differ in their opinion, and they would feel vindicated. Now, as a resident and having seen loved ones seek second opinions for themselves in their own medical struggles, I realize it is far more complex than that.
For one, what we lack for in time as physicians, we also often lack in effective communication and meeting families where they’re at. Walking a family through the treatment options for chronic and life-changing illnesses such as IBD takes time (so often in short supply in busy clinics), effort, and the patience to address the questions and concerns the family has. What we have memorized as standard of care or guidelines for diagnosis over the years spent in medical training can easily get lost in translation – I think of it as like asking a patient to complete a thousand-piece puzzle without telling them that the puzzle is actually double-sided.
Second, there is a particular burden placed on the patient who requests a second opinion. It can be as simple as seeking a referral from your current primary doctor or specialist, but it also can involve making sure your health insurance will pay for it. Patients are very often left with the ordeal of requesting medical records be transferred between entire hospital systems that are unable, or slow, to communicate with each other.
Third, once those records are finally in the hands of a new physician, it can take time and multiple visits to determine whether lab work, imaging, or invasive testing needs to be repeated. Furthermore, the potential psychological trauma of going through repeated invasive procedures should not be taken lightly.
So how should we as clinicians approach the patient who seeks out a second opinion? Awareness of the barriers from doing so should be followed by endeavoring to meet patients where they are in the journey of their illness. Patients may approach the new physician with a different set of goals and expectations than they did with the first, whether due to a sense of shock over an initial diagnosis, the pressure of time to decide on a treatment option, or simply information overload. It’s our job, then, to create the space for them to voice these goals and expectations. In the case of a young patient like Sophia, her parents simply wanted to choose the path that would allow their daughter to still have the hopes and dreams of a typical 8-year-old. The end result, regardless of the second physician’s opinion, is what matters most – the patient’s empowerment for their own health.
Dr. Zahur Fatima Sallman is a resident physician in Pediatrics at Children’s Hospital of Michigan. She is a graduate of the University of Maryland School of Medicine. She loves acrylic painting, pizza making with her husband, and considers herself an amateur carpenter. Dr. Sallman is a 2022–2023 Doximity Op-Med Fellow.
All names and identifying information have been modified to protect patient privacy.
Image by artbesouro / GettyImages
