As first-year medical students, we learn that the hallmark of a holistic medical education is an emphasis on the human, personal side of this profession. One way we develop our patient-centered competency is through attending patient panels as part of our curriculum. Here, we learn from people who experience healthcare from the opposite end. From cancer survivors to leaders in healthcare policy, these panels supplement our education by encouraging us to think of medicine beyond our textbooks. At our very first patient panel, we were privileged to have three advocate-mothers of special needs children speak to us. They delved into their individual experiences as parents to reveal the complexity of caring for their children. From battling compassion fatigue to navigating specialty appointments, these mothers seem to tackle more daunting tasks than your average superhero.
Yet, these mothers’ jobs are often complicated by the very people who intend to help them. At this panel, one mother revealed that her child’s physician used her child as a unique learning opportunity to residents and students at rounds. Frustrated, she complained that some of these conversations should certainly have taken place in a private setting. Situations like these occur when doctors distance themselves from the humanistic side of practicing medicine. We were incredibly fortunate to have been introduced to this unique perspective, as this experience reminds us to place the needs of the patient above all, even at the cost of learning opportunities.
From a practical perspective, the economic burden on these families was a shocking realization. For instance, we learned that Supplemental Security Income (SSI) for affected families is often income-based. These are programs that assist disabled adults and families with children with special needs. Unfortunately, many families that earn slightly more than the threshold are heavily burdened with daunting medical expenses and exorbitant bills to pay for the technology that assists their children.
The aggravating factors detailed above makes the difficult job of caring for children with special needs even more demanding. As future physicians, we are constantly reminded of the value of patient-centered care. However, the impact of that reminder is significantly more powerful when colored by personal stories. This panel reinforced that successful doctors go beyond just addressing the health needs of a patient. Physicians are almost obligated to arrive at the correct diagnoses or provide the best treatment. But the real challenge lies in ensuring that we are doing so, not at the cost of compassion.
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