I am asking my fellow medical professionals to give a sincere show of hands: How many of you are terrified of your fate should you become the patient?
The prospect of navigating the medical system as a patient should strike fear in your heart, especially if you cannot advocate for yourself (although the system will also make that next to impossible).
The current medical/hospital system of care in the United States has been built upon an aging scaffolding. The holes in the foundation are becoming more and more apparent. The recent pandemic, with the subsequent medical personnel exodus, staffing, and supply shortages, have further pressured a system that is teetering on the precipice of an abyss.
As a primary care pediatrician, I have assumed everyone entering the medical profession does so with the desire to help others and that patient care will come first. My assumption has recently been put to the test. Given this realization, I find the prospect of becoming an aging patient in today’s medical system something I will attempt to avoid at all costs.
My recent experiences assisting with the care of my mother at the auspicious a US News top-rated hospital have left me shocked and deeply disturbed by what is now the accepted norm in patient care in this country. My mother’s inpatient care was woefully lacking and tantamount to negligence at an institution that physicians have long considered the “mecca” of health care.
The attending physicians did not care or listen to a fellow physician advocating for a family member. The house staff and attendings in the teaching hospital never introduced themselves as they rotated on service. They barely bothered to advise the patient that they were rotating off hospital duty. Most patients and families are unaware of the typical rotational system employed by physicians in Academic Institutions covering the care of patients in the hospital. How will the average American understand who to approach on the medical team to discuss a patient’s progress and medical plan? How do patients without medical backgrounds navigate this convoluted, demoralizing labyrinth that is dictated by insurance companies, Epic EHR, and satisfaction surveys, not to mention closely scrutinized statistics of mortality and complications? This system makes it nearly impossible for physicians to practice evidence-based medicine, much less care for or about the individual patient.
I want to preface my story with the history that my father spent the better part of his professional medical career at this hospital. He is a trained physician who also pursued medical research. He has contributed a great deal financially and intellectually over the past fifty years, having been vice chairman of the board of governors, director for research, director for the Center for Individualized Medicine, and innumerable other administrative and leadership roles over the years. At the age of 82, my father still has grants funded by the NIH, and he is still a full-time working consultant there.
I grew up receiving all my medical care at this hospital. I was spoiled, seeing hyper-specific specialists in every area of concern (for example, an internist specializing in hypertension only and a cardiologist specializing in arrhythmias). It never dawned on me that the highly specialized care this hospital was known for would eventually become a drawback and even an impediment to a patient’s competent, comprehensive care. I suspect this is also a result of the specificity of focus juxtaposed with the hyper-vigilant, cost-counting, productivity-scoring framework that is now the norm in almost every medical interaction dictated by medical insurance companies. They dictate what prescriptions are written, what tests are needed, and what cookie-cutter algorithm a diagnosis will allow in the care of an individual patient. This pushes medical institutions to look at patient care based on profit/loss and cut quality for expedient discharge if at all possible.
I have learned from my mother’s recent experience that communication is minimal. The hyper-focused, single-system admitting specialty that this clinic was built upon used to mean multi-specialty collaborative care to improve overall outcomes in an individual patient. Since collaboration takes time and increases costs, the individual, ultra-specific medical service that admits a patient at this hospital instead opts for tunnel vision without collaboration, resulting in poor comprehensive patient care. Previously, when I rotated as a medical student through the hospital services, the individual specialties had no problem consulting and collaborating to try to provide the best medical care and outcome for each patient. Now, a highly specific admitting team will assume and latch on to an admitting diagnosis, even when evidence and testing do not support it or they point to the need for alternative, more extensive evaluations outside the area of the admitting specialty. The blinders worn by the admitting physicians do not bode well for optimal patient outcomes, though they improve institutional profits, especially if the patient is expediently discharged, albeit with an incorrect diagnosis.
I have also realized that this prestigious, world-renowned medical training center I have long extolled has evolved into a two-tiered system of the out-of-pocket or privately insured affluent patient that is catered to. The aging local community patients with Medicaid and Medicare have been brushed aside, disregarded, and forced out quickly since they are not fiscally rewarding to the medical institution. The residents and fellows are so self-extolled in the prestige of their training institution they do not look at the entire patient. This arrogance resulted in my mother’s misdiagnosis and treatment that almost killed her.
In my mother’s case, an attending surgeon on call could not be bothered to come in or even call to speak to our family to inform us he deemed the patient not surgically salvageable, and instead sent a fellow to convince our family that my mother qualified for palliative care as her only option for her missed aortic dissection in the middle of the night. A cardiology resident on call for my mother’s complaint of chest pain looked at the EKG and never touched or spoke to the patient. That patient, my mother, had a dissection of her aorta that was not discovered during her initial two-week hospitalization.
It was found on her return to the emergency department for more chest pain after discharge to an inpatient cardiac rehab program. The prescribed treatment resulted in the extension of the dissection. My father and I pushed and questioned the initial diagnosis, saying that something was off and that the cookie-cutter explanations of the specialists did not fit, but we were dismissed. I knew this was a problem. But I am a physician, and it took over three weeks and a devastating, horrendous diagnosis to get anyone to pay attention. What happens to all the other patients? What happens in the smaller hospitals with fewer resources? What happens when the shoe is on the other foot, and these self-glorified physicians that ignored the need for further investigation into my mother are dealing with similar medical care for their loved one? Or if God forbid, the one in the hospital bed, is you?
Rebecca Weinshilboum is a pediatrician.