The Road Less Traveled
N Engl J Med 2011; 365:2449-2451December 29, 2011DOI: 10.1056/NEJMp1111322
I worry that the primary care physician is a dying breed. Though it was once considered the noblest profession, U.S. medical students today believe the work is too hard, the hours too long, the pay too low. So they're choosing to hit the “ROAD” — the high-paying specialties of radiology, ophthalmology, anesthesia, and dermatology.
But if you think being a primary care doctor is hard, meet Mary. Not many people have it harder than Mary. She always leaps to mind when I consider how our health care system fails our patients — and why I chose primary care. I'm Mary's doctor, and though I care deeply about her, seeing her name on my schedule evokes mixed feelings: irritation that I'll be an hour behind schedule the rest of the day; trepidation over the 50-50 chance she'll need to be admitted, disrupting my busy day; and fear about intractable social problems.
Boston Irish, Mary has striking white hair and mischievous blue eyes; she's feisty, funny, and utterly determined. Her neighborhood has seen generations of immigrants; its streets are lined with two-family homes and historic red brick churches, and there are pubs on every corner. Born and raised not far from her current apartment, she was stricken with rheumatic fever as a young girl. She remembers her youth as plagued by poor health, yet she graduated from high school, worked, married, and raised three children.
But the early heart infection took a toll. By her mid-40s, Mary had an increasingly calcified mitral valve, an enlarging heart, and a damaged conduction system that caused atrial fibrillation and hypertension. Then came the stroke and a life forever changed. The paralysis of her right side was devastating enough, but she was also left unable to speak. Ultimately, with great difficulty, she began to utter a few simple words. Overwhelmed by her disabilities and dependent on others as never before, Mary saw her losses mount when her husband, unable to cope with her situation, left her.
Soon thereafter, Mary's creatinine level began to climb. No diabetes, no new meds, no obvious explanation for her failing kidneys. She saw a nephrologist and had innumerable blood and urine tests and finally a renal biopsy — the challenge of each experience heightened by the difficulty of communication and her loss of mobility. Eventually, she received a diagnosis of focal glomerular sclerosis. The kidney deterioration couldn't be stopped, and she became overloaded with fluid and toxins. Mary had multiple hospital admissions for congestive heart failure and was facing the prospect of dialysis. An attempt at mitral valvuloplasty bought her a little time, but the admissions soon resumed.
Then hemodialysis began. Consider the logistics of requiring a wheelchair, being unable to communicate over the phone, and needing to get to dialysis appointments three times a week. Add to the mix that Mary was unemployed, estranged from her children, took 16 medications daily, and also had to get to appointments for physical, occupational, and speech therapy — plus regular visits to the nephrologist, the cardiologist, and me. Somehow, she did it: her tenacity is astounding.
Finally, Mary got a lucky break: a cadaveric kidney that was a close match. She had a rocky perioperative course but ultimately a good outcome. Mary's joy at not having to return to dialysis was palpable; she strained to utter the words, “Thanks, thanks!”
Mary's pharmacy is one of few that still have the personal touch — Mary receives her pills in blister packs weekly by mail. There's a real pharmacist I can speak to on the phone; he knows Mary well, knows all her meds, and is there every day, so whenever I adjust Mary's Lasix dose, I can call him and get an extra blister pack sent to her the next day. It seems like a gift from above.
Traveling by wheelchair down the sidewalk of her bustling neighborhood is part of Mary's daily routine. Draped over the back of her wheelchair, she keeps a bag containing all her medications and a book with her doctors' phone numbers and upcoming appointments; it makes her feel secure. But one day, a desperate stranger found it too tempting: a disabled woman, all alone, with that bag just dangling for the taking. In a moment, it was gone. Mary felt like her world was gone, too.
“I understand she's not due for her medications yet, but as I just explained to you, her medications were stolen.” I don't know how many people I spoke to, but no one seemed to be able to fix the problem. Without her Lasix, Mary would probably be in heart failure in 48 hours, and her immunosuppressants and prednisone prevent acute rejection of her transplanted kidney. Finding someone who understood the seriousness of the situation and could help seemed impossible. Even her pharmacist was willing to give her only a few days' supply until Mary sorted things out with the insurance company — our government. But how could she “sort things out” when she couldn't even speak? Somehow, miraculously, I persuaded someone to replace Mary's pills.
But for Mary, such miracles are rare. She arrives at my office for a follow-up visit, clearly distraught. She struggles through tears to choke out a few words (“darn, thanks, yes”) that don't convey what she needs to say. She points to the phone, “You want me to call someone?” I ask. She nods emphatically. “Who? A relative? One of your specialists? Do you need a refill on one of your medications?” She lurches forward. I'm on the right track. “Which one?” I ask. She frowns. Off track. “OK, you don't need a refill; what do you need?” Of course I know she can't answer that. And if I'm feeling this frustrated, how does Mary feel every hour of every day? How does she go on?
I finally figure out that she wants me to call her pharmacist. Without knowing why, I dial the number. “I was expecting your call,” he says. There's a “problem” with Mary's treatment. She's been dropped from Medicaid and is no longer eligible for her medications. My heart sinks. Mary's eyes are filled with fear — it's as bad as she thinks. Again, the pharmacist offers a few days' supply until Mary can straighten things out. I want to scream, “But she can't speak!”
I talk to social workers. Connected with every department in the vast Medicaid bureaucracy, I repeat the story, getting variations on a standard response: “That shouldn't have happened, but I'm not sure how to reverse the problem.” Luckily, the pharmacist is flexible about “a few days,” and after about a month, Mary is back on the Medicaid logs. It was a fluke, I'm told — a simple error that could send a life into a tailspin.
Mary's life is filled with such stories, but she musters awe-inspiring strength and determination for each challenge. At times, it does feel too hard to be Mary's doctor. But it also has priceless rewards — which those medical students on the ROAD don't yet understand and may never get to experience. Every time Mary rolls into the emergency department, the overworked housestaff quickly tire of being unable to “get the story” from her. They just give her a squirt of Lasix or an antibiotic and head for the door. I understand their frustration. But what about Mary?
I get the call and head over to the ED. As I pull back the curtain, a smile of recognition spreads over Mary's face. She can relax now. She knows I care, that I'll figure out her story and make sure the ED docs know all her meds, allergies, and complications; I'll let her specialists know she's here. She knows that if her medicines change, I'll contact her pharmacy to ensure she gets a new blister pack. She lies back and breathes more comfortably.
And at times like this, I recognize my deep satisfaction with the road I've chosen to travel.
Disclosure forms provided by the author are available with the full text of this article at NEJM.org.
From Harvard Medical School and Massachusetts General Hospital — both in Boston.
- Citing Articles (1)
(2012) The Road Less Traveled. New England Journal of Medicine 366:11, 1061-1062
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