Falling through the Cracks in the Healthcare System
POORER HEALTH OUTCOMES
To care properly for patients who have complex, chronic illnesses, physicians require time. Lack of adequate time to care for patients is the number one complaint of physicians who practice medicine in the fee-for-service system (in which compensation comes from third-party payors like large insurance carriers and more patients seen means more revenue). When I practiced in the fee-for-service system, I had to figure out how to see 20 – 25 patients a day to keep up with the flow of patients that the administrators demanded I see.
But having to see that many patients per day results in poorer clinical outcomes, racks up large, unnecessary costs for patients and their health plans, and crushes physicians professionally and emotionally. Primary care physicians are true caretakers. They want to do right by their patients. But the fee-for-service system has made this too hard.
A PATIENT’S STORY
I can think of no patient’s story that better illustrates the problems with the fee-for-service system than the story of a patient of mine whom I’ll call B. (who’s given me permission to tell this story.) B. was my patient for 10 years while I practiced medicine in the fee-for-service system in a university hospital setting. After a brief interval, she followed me into my direct primary care practice, ImagineMD, after I left fee-for-service medicine because she valued the improved access I could offer her, the extra time I could spend with her, and the extra time I had to research, think, and focus on shepherding her through the rest of the medical system when it became necessary. She was looking for someone to captain her medical ship and in direct primary care I was ready, willing, and able.
B. is far too young to have as many medical problems as she does. In fact, she has so many medical problems that a former colleague of mine, who temporarily took over her care when I left in January of 2016 to start ImagineMD, even asked me at one point if I really believed she had all the rare diagnoses she was purported to have. (These include atrial tachycardia, bronchiolitis, pseudotumor cerebri, migraine headaches, gastroesophogeal reflux disease (GERD), hypothyroidism, iron deficiency, postural orthostatic tachycardia syndrome (POTS), restrictive lung disease, Raynaud’s disease, and chronic pain, to name just a few.)
Unfortunately, he hasn’t been the only physician involved in her care who’s been suspicious of her. She’s had too many admissions to hospitals over the years to count, often for problems that have exacerbated her chronic pain. As with many chronic pain patients, she’s been accused of drug-seeking on more than one occasion. I’d often found myself intervening on her behalf with suspicious physicians—or trying to—when they wouldn’t focus adequately on treating her pain. Or would simply ignore her pain outright. Or want to discharge her from the hospital without having adequately addressed the reason she was admitted in the first place. Her relationships with inpatient physicians have often been adversarial through no fault of her own. More often than not, her clinical presentations have been unusual. It’s been far easier for physicians who haven’t known her well (and even for those who have) to believe she’s been drug-seeking rather than pain-relief seeking and that her unusual symptoms have been the product of a carefully crafted manipulative strategy rather than another undiagnosed unusual medical problem.
But this is a story of exactly one such unusual medical problem. She joined my new practice at ImagineMD in September of 2017 not only for the reasons I stated above, but also because she felt the university hospital system in which she was receiving care provided its physicians inadequate time to spend with someone whose medical history was as complex as hers and that her care was suffering as a result. The specific impetus for her joining ImagineMD was the appearance of yet another new, unexplained symptom: abdominal pain.
She’d been recently hospitalized—again—at the university hospital system for severe right upper quadrant abdominal pain associated with intractable nausea and vomiting that led to a severe headache (fourth of her four types of headaches—not a migraine, supraorbital neuralgia, or Chiari-associated headache). The abdominal pain began without obvious inciting event, often radiated to her right shoulder and back, would last anywhere from 2 hours to 9 days at a constant level, unchanged by position, eating, or defecation, and would taper off gradually and with pain meds. An abdominal CT done during that admission suggested redundant stomach folds or possibly a stomach mass and a heterogenous pancreatic head and body.
This pattern of symptoms had actually been recurrent for many years: she’d get admitted and the focus would be on her nausea and vomiting and headache, not her right upper quadrant abdominal pain (multiple CT scans and ultrasounds had shown no stones in her gallbladder and only mildly and chronically dilated liver ducts). In the past, doctors had considered her nausea, vomiting, and abdominal pain to be the result of chronic narcotic use, altered intracranial pressure from her normal pressure hydrocephalus, or GERD (heartburn). After spending a full two hours with her at her initial ImagineMD appointment, during which I painstakingly reconstructed her history and performed a thorough physical exam, I did something I rarely had time to do in my former fee-for-service practice: I developed a complete differential diagnosis. I wondered if she had biliary dyskinesia or sphincter of Oddi dysfunction, so I scheduled a CCK scintigraphy test to look for a gallbladder ejection fraction that was less than 40%. If the test was positive, my plan was to refer her for a gall bladder removal. If not, I was going to refer her for an ERCP to rule out sphincter of Oddi dysfunction.
Both of these diagnoses are extremely rare. What’s more, her clinical picture wasn’t entirely consistent with either. And sure enough, both tests came back negative. Unfortunately, her symptoms continued with unusual regularity: she would develop intractable nausea, vomiting, and right upper quadrant abdominal pain every four weeks, so severe she’d need to be admitted to the hospital each time. There, she’d receive IV fluids, some IV narcotics, and more and more tests, all of which continued to be negative. She’d then get better on her own and be discharged, only to be readmitted four weeks later. Her vomiting was so severe at times that she developed several Mallory-Weiss tears (rips in the inner lining of the stomach from severe vomiting that cause bleeding). As no physical cause could be identified for her symptoms, she was given multiple referrals to psychiatry.
PATIENTS IGNORED BY DOCTORS
At that point, had I still been practicing in the fee-for-service system, I would have told her there was nothing more I could do for her. Both of us continued to believe there was an underlying medical cause of her symptoms. They occurred with too much regularity, had too stereotypical a pattern, and were too severe to represent psychiatric disease. Certainly B. was depressed, but this was because her existence had progressed from miserable to intolerable. But I simply wouldn’t have had the time or emotional energy to pursue the issue had I remained in a fee-for-service practice.
But because I now did have the time and emotional energy to read deeply into the medical literature and the time to think and synthesize all that I read, I continued to search for an underlying medical cause. This brought to my attention a relatively new disease entity called mast cell activation syndrome, a condition in which mast cells become overactive and cause a multitude of unusual symptoms. The disorder is associated with POTS (which B. has) and has been known to cause vomiting, among many other things. I also had the time to find and have an extensive discussion with an expert in mast cell activation syndrome. This expert subsequently tested B. for the condition but found little evidence that she had it. Yet the expert also thought treating her for it empirically was worth trying. Unfortunately, this treatment also failed to make B. better.
Yet during one of the many subsequent conversations I was able to make time to have with this expert, she also suggested another diagnosis I hadn’t considered: porphyria. I thought this an inspired idea. Many of B.’s clinical symptoms fit. There was even a connection to menstrual periods, which I thought could explain why her abdominal pain and vomiting came so regularly every four weeks.
So we tested her for porphyria—but these results also, heartbreakingly, came back negative. Around this time, B. was admitted to the university hospital system for the same symptoms, accused of malingering by the physicians who cared for her there, and discharged her from the hospital against her will. She called me in tears, in pain, and utterly demoralized. I reached out to the attending with whom I’d previously conversed when she’d been admitted. I explained to him I didn’t believe she was malingering, but his mind was made up that they could do nothing further for her. Disgusted, I told B. to go immediately to another university hospital system to be re-admitted and that she should never to go to the first hospital system for admission again. It was because I’d known her so long and had spent so much time with her that I knew the accusation of malingering was the product of lazy thinking and, even more, inadequate time spent listening to her and thinking critically about her. In the fee-for-service system, physicians only have so much time and energy to think about complex problems. If symptoms don’t fit themselves neatly into a physician’s initial thinking, often not much more thinking takes place. Sadly, the cracks in the fee-for-service system were more than wide enough for B. to fall through.
But she still had me. And I, having left the fee-for-service world for direct primary care, had the time and energy to continue to research and think. So I did. And I came across another diagnostic possibility: cyclic vomiting syndrome. This also fit her symptoms fairly well. So I began empirically treating her for it.
But the treatment didn’t help. She continued to be admitted to the hospital (now a different one) every four weeks. So I continued to research and think.
THE ANSWER IS FOUND
Finally, I came across yet another diagnostic possibility: abdominal migraines. These are literally what they sound like—a headache in the abdomen. Like regular migraines, they’re often accompanied by nausea and vomiting and often occur in patients who have regular migraines. The treatment is the same as for regular migraines, a treatment she’d already been on but that she’d never tried for the abdominal pain. So I told her to do so.
The next week, she told me something astounding. The Imitrex she’d been using for her migraines aborted her abdominal pain. For the first time in two years, she’d avoided being admitted to the hospital. The next month when the symptoms recurred, the Imitrex worked again. For the second month in a row, she’d managed to avoid a hospital admission.
I decided to try to prevent her abdominal migraines with prophylactic medication, as is done with regular migraines. We tried beta blockers, melatonin, Elavil—all with minimal success. And then I read a research paper on the use of magnesium oxide for the prevention of migraines. It’s fairly benign, so I started her on it. And her symptoms almost completely resolved.
Today, B. is feeling better than she has in years. She still contends with multiple other medical problems, but having had the cause of her abdominal pain and severe vomiting identified and treated seems to have represented a turning point for her. We’ve successfully weaned her chronic narcotic use down dramatically and she’s beginning to enjoy everyday life in a way she hasn’t in years.
THE BENEFIT OF DIRECT PRIMARY CARE
The reason I was finally able to correctly diagnose B.’s abdominal pain as abdominal migraines and treat them successfully is because as a direct primary care physician, I now work in a system that affords me not just adequate time to spend with patients, not just adequate time to research and think, but also, most importantly, adequate time to breathe. I now have the emotional energy required to stick with someone as sick as B. and not become discouraged myself. Because I’m no longer overwhelmed by my schedule and long lists of boxes I need to check in an electronic medical record to bill insurance companies and am no longer made to sit through coding audits with hospital administrators chastising me for missing an opportunity to code at a level 5 instead of a level 4, I’m finally able to practice medicine the way it was meant to be practiced. I use all the skills I’ve spent literally decades developing: not just my critical thinking skills but my communication skills and my empathy skills. The one thing I repeatedly told B. through the two years it took me to figure out what was wrong with her was simply this: I will not abandon you. I will keep researching. I will keep thinking. I will keep trying. I may not be able to make you better, but I will stick with you.
I didn’t know if I’d be able to figure out her problem, but I knew I had the space to keep trying. That I had the energy and empathy to stand by her so that she never felt alone in her terrifying journey from specialist to specialist and hospital to hospital.
Direct primary care isn’t just a new way for primary care physicians to collect revenue. It’s a system that frees primary care physicians to flourish into their best doctor selves. And in doing so, every once in a while, transform the lives of their patients.
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This reads like a bestselling mystery, Alex. Thanks for the inspiration!
P.S. We miss having you on the show. 🙂
Did you communicate your diagnosis and treatment results to the dismissive hospital physicians? If so, what was their reaction?
I can so emphathize with this poor patient’s struggles. I am on a very similar road with doctor after doctor telling me they can’t help me or dismissing me because my symptoms are “too vague.” It’s so refreshing and gives me a bit of renewed hope that someday I might find a doctor like you that takes the time and care to actually help those of us that don’t fit into a box. Thank you for sharing this and for giving a sick and suffering person hope again.