My father’s melanoma diagnosis arrived on a Tuesday. By Thursday, we had a plan of care. By the following Monday, I was back at work seeing my own patients, pretending the world had resumed its normal shape. But it hadn’t. Not really. Because his cancer didn’t pause between appointments, didn’t stop growing or spreading, and neither did the fear, the questions, or the quiet unraveling that comes with navigating a disease that feels larger than any one clinic visit can contain.
My husband and I are what demographers call “the sandwich generation.” We have teenagers approaching college on one side, and on the other, multiple aging parents who collectively carry more medical complexity than I ever anticipated navigating, even as a physician.
My father battled melanoma, my mother has Alzheimer’s dementia requiring 24/7 care, my father-in-law received a later-than-usual diagnosis of Crohn’s disease, and my mother-in-law has atrial fibrillation. Each of them has excellent physicians. Each sees specialists who are knowledgeable, thorough, and genuinely caring within the confines of the allotted appointment time. But here’s what I’ve learned, as a physician and as a caregiver: a slice of medicine happens in the appointment. Life happens in between.
Whether patients are considering medication adjustments, side effects, weighing the pros and cons of surgical vs. medical options, developing new symptoms, or deciding whether to go to the ER for a flare or a flutter, these are the decisions patients and families frequently are making between appointments, without a physician present.
I’ve come to understand this space, the days and weeks stretching between scheduled appointments, as the presence gap. It is the five days my father waited to tell me about his diagnosis as he worried quietly to himself with a thousand questions. It is the six weeks we were told we needed to wait to see the Mohs surgeon. It is the eight weeks my father-in-law was awaiting his colonoscopy to determine if he had Crohn’s and would survive, or colon cancer and was dying. It is my mother-in-law calling me from a parking lot, heart fluttering, unsure whether to drive home or dial 911. It’s the two months last summer that my mother was unable to care for herself but too unstable to be accepted to her designated memory care unit.
The presence gap is a structural reality, one that our health care system, which is built around episodic encounters, was never designed to address. Physicians are extraordinary within their domain. But no doctor can be present in a parking lot on a Sunday. No specialist can anticipate every question that surfaces at 10 p.m. when a patient is lying awake, uncertain and afraid. No physician can anticipate all of a patient’s life events and how those will impact the medical decisions that need to be made.
This is the problem that physician-led advocacy can help solve.
Physician advocates have been on both sides of the platform. They understand the constraints that prevent providers from being present between visits, and the very real cost patients and families pay when that presence is absent.
Scaled physician advocacy on a widely accessible health tech platform could provide a structured, meaningful bridge between appointments. Similar to telemedicine, and analogous to Uber, this could be an app-based service that provides patients and caregivers expedited access to around-the-clock advocacy support from live physicians, helping them across that presence gap and to their next appointment.
Millions of families are living in the presence gap right now, doing their best with the hum of worry that never quiets between appointments. For many families, accessible advocacy would not be a mere convenience. It would be a lifeline, because, unlike mine, not every family has a physician in their circle.
Patients deserve better than a system which asks they be managed in short 15 to 20 minute increments of time. The family members and loved ones of those patients deserve better, and so do the very physicians who entered this field to help patients and provide care. We never agreed to a system in which we would treat complex medical illness in 15 or 20 minute appointments. We never agreed to a system that ties us up endlessly in prior authorizations, insurance denials, paperwork, and everything else that limits our ability to deliver high quality humane care.
Scalable physician advocacy gives physicians another way to serve patients. Balancing bedside clinical medicine with a virtual profession that allows you to be a fully present physician advocate has the potential to help solve burnout for physicians working full-time at the bedside.
Additionally, this type of service has potential for people operations and human resource organizations providing health benefits to their employees. Having access to physician advocates can improve utilization of benefits, adherence to treatment plans, and improve employee health outcomes, thereby reducing care costs.
In a health care system stretched thin by physician extraction and burnout, physician exodus and attrition, administrative burden, and an aging population with increasingly complex needs, the presence gap is arguably the most important gap in modern health care, and one that scalable physician advocacy on a health technology platform, applied thoughtfully and led by physicians, has the power to close.
Samantha Jackson Dilts is a pediatrician.
