As it turns out, being a patient is not easy.

Shivams Kidney

With all the talk of it being difficult to be a doctors – something I have published on before, being a patient is not easy either1. My disease: kidney stones. Let’s make no mistake; I am fortunate enough to have never had cancer, been in a disabling car crash, or dealt with any actually serious malady that other people have had (including my friends), but experiencing medicine from the other end was an eye-opening and unnecessarily cumbersome experience that gave me a new appreciation for my patients.

The process of being a patient hadn’t always been difficult. In fact, it was fairly straight forward when I was a child and still under my parents’ insurance plan. Having a physician-father also helped in navigating my disease and the healthcare system. Being a patient couldn’t have been easier. Not having to worry about copays and preferred providers, I could focus on my disease.

My first brush with having a kidney stone came as a surprise. I still remember the moment: I was eating lunch in the English room during the 11th grade. And then I was supine on the reading couch cringing from unbearable flank pain. My first thought was indigestion, but as the pain exploded past 10 on the 10-point scale, I realized I had something more sinister going on. My mother picked me up from school and took me to the emergency room. They told me I passed a kidney stone. I got the care I needed and that was it.

Now in my residency, I had a recurrence and the experience was much different. For my 29th birthday in July, I spent the day out on a boat with maximal sun exposure. Replacing water with beer – a known risk factor for kidney stones – and being subject to an unforgiving sun, my stones re-emerged, literally. Instead of having the tell-tale renal colic, I had persistent blood in my urine for the week following my afternoon soiree. I knew that these Goldilock-sized stones – not too big to obstruct my ureter and render me infantile, not too small to go completely unnoticed, but just big enough to cause some bleeding – were the cause because I had it first present this way in medical school. My primary care physician then, who after doing a few tests, told me it was nothing to worry about it and to drink water. I forgot to drink water and was now worrying. I was particularly worried because the bleeding went on for days – as opposed to just once or twice in medical school. Again, I needed those “few tests” to ensure I was still O.K. I needed to see my primary care physician.

I tried to make an appointment. Easier said than done. According to my employer, my insurance was no longer contracted with my previous primary care physician at the University of Man Hospitala. The change had preceded my hematuria by only a matter of weeks; I didn’t even have a chance to find a new primary care physician. I attempted to find a new physician, but who? Who does my insurance take? I called My Insurance and they directed me to their website which included more than 1,000 providers in a 15 mile radius based on my zip code. Narrowing this down to a 5 mile radius produced 427 results. Who do I call? I called a reputable and prominent facility near me: Mount Everest Medical Center. The first time I called they said they take My Insurance and connected me to “scheduling” where no one answered after waiting for ten minutes (an incredibly long period of time when you are the one waiting on the other end listening to a pre-recorded message on loop). I called again, no answer even from the operator. I called again the next day and they said they didn’t take my insurance. I called for a fourth time and same story – they don’t take my insurance despite what My Insurance’s website says. I gave up on Mount Everest Medical Center.

I went back to My Insurance’s website and now had 426 results to sort through. With each hematuric day, I grew weary of the blood and the listings on the website. Clicking through, I found my original primary care physician at the University of Man Hospital. I called the office of my primary care physician to see if they were listed on the website erroneously, and they said they still took my insurance. An insurance agent from My Insurance verified this. But the insurance representative at my employer was adamant that I could not go there. I threw my proverbial hands up in the air and decided to make an appointment regardless of the provider was “in-network” or “out-of-network.” I thought that I will know for sure if they are covered or not when I get a bill in the mail.

The next appointment we have available for you is in six weeks.”

I told her I couldn’t wait that long.

Have you thought about going to the emergency room?

“Yes, I have but this is not an emergency.” I’ve worked in an emergency room. Me peeing blood feels like an emergency but doesn’t compare to the guy having a heart attack, the mother about to give birth, the baseball player with a broken finger, or the family of three that’s in a car accident. My problem is urgent. Not emergent. Emergency rooms are for emergencies.

Thinking about this for a few more days and realizing the predicament I was in, I knew that I wouldn’t be seen any faster as a new patient with any primary care provider within a 15 mile, let alone 5 mile, radius. I was one of the 62 million Americans without adequate access to a primary care physician2. Even more ironic, I am a physician myself and am surrounded by doctors. During this time, I even treated a patient with kidney stones. His stones had progressed to the point that he had obstructed his kidney and needed urgent decompression. He, like me in high school, went to the ER because he was bed bound from severe pain. In the back of my head, I couldn’t stop wondering was this happening to me – perhaps silently? Although completely silent stones are uncommon, they can cause partial or complete obstruction in up to 20% of patients3. Was I having silent obstruction? Would I be destined to a life of chronic kidney disease or, worse, kidney failure? Of all the causes of kidney failure, stones are the cause only 2% of the time. When considering that kidney stones affect 5% of the entire population, the total number of patients succumbing to kidney failure from stones is quite small4. As the days and blood passed, logic waned and hypochondria took over. With nephrology being my ultimate field of study and choice of specialty, I found it ironic that the physician-turned-patient was now beset by the very disease he had been studying.

And, I was not the first physician to self-diagnose his own disease of study. Armand Trousseau – famous for Trousseau’s sign of malignancy – found his namesake sign on himself when he had pancreatic cancer. And of course, generation after generation will remember Leonid Rogozov – the Russian surgeon who diagnosed himself with appendicitis while on an Antarctic research expedition and performed his own appendectomy5. Although only a resident, I knew the tests that I need to be done – after all, I had ordered them countless times for my patients. Yet, self-prescribing and self-treating are taboo. According to the most recent edition of the American College of Physicians Ethics Manual,

Except in emergent circumstances when no other option exists, physicians ought not care for themselves. A physician cannot adequately interview, examine, or counsel herself; without which, ordering diagnostic tests, medications, or other treatments is ill-advised6.

For urgent problems, there are urgent care centers, and some of them are covered by My Insurance, but they are only open during normal business hours – when I am at work. I suppose I could have taken a day off at work for the issue, but what if they weren’t able to do the blood work or imaging on the same day? Would I have to come back on different days for both the blood work and the imaging? Would I have to come back a third or fourth time for the results? How many times would I have to take off work? Anyone who has a full-time job understands my predicament. And now after being in the predicament myself, I better understand the hurdles my working patients have to overcome to see me during my business-hours-only clinic.

There are after-hours urgent care centers near me. But finding which ones were close by, covered by my insurance, open during business hours, and had same-day imaging and blood-testing available became a time-consuming and administrative nightmare. After much thought, I realized that I just needed any physician to order the most basic of tests. Once I had the prescriptions, I could have it done at the hospital I worked at before or after my shifts and have it covered by my insurance. Since I couldn’t write the prescriptions myself, I called a friend – a friend who happened to be a physician – to do it. And he did. Since the first episode of hematuria, it took me nearly three weeks to get a prescription for an ultrasound and blood work to check my kidney function and another 1-2 weeks to complete them and get the results, all of which were normal.

Creatinine

It was not an optimal choice, but perhaps the easiest solution for me. Although I did not self-prescribe and self-treat, in theory it is what I did. My physician-friend trusted my judgement and ordered the benign tests under his name using my judgement. I was not in the same situation as Leonid Rogozov, but I was becoming increasingly impatient and frustrated with the locating and seeing a primary care physician. What if I weren’t a college-educated, health-literate, English-speaking, American-born, middle-class physician with physician-friends? What if I didn’t have health insurance or couldn’t get the imaging and blood work at the same place as my employment? How does everyone else without all these advantages navigate the system and obtain healthcare? Maybe it is an urgent care facility requiring several half-days of missed work. Or maybe it is an emergency room visit followed by a hefty bill or two laterb. Or worse, maybe it is accepting defeat and letting diseases thrive unfettered. Or maybe it’s my expectations that healthcare should come easily?

Again, I have to state that I only had kidney stones. I can’t imagine what it is like to require chronic treatment for a serious illness like chemotherapy or repeated surgeries. It reminds of a statement one of my healthier, pentagenarian patients told me about after he repeatedly declined to have any form of colorectal cancer screening, which is recommended as routine for all over the age of 50. “I don’t want to spend the rest of my afternoons dealing with lab results, insurance companies, and doctor visits like all the rest of my friends my age,” he reasoned. Although most people don’t refuse screening so adamantly and most have normal cancer screening results, my patient was unmoved. I, however, was moved. His statement introduced something I had never thought about before: medicine, and the insurers of it, can so cumbersome that it inhibits healthcare.

Despite my advantages in navigating the health-care system, it still took me nearly three weeks to get the orders I needed and five weeks to get the results – which I obtained the way my patients do when they want a copy: through medical records. The process of getting my blood work done, having my ultrasound done, and retrieving my results was a time-consuming process that required patience and determination.

I knew what I did was not ideal, but it is not uncommon. Others have documented it regarding varying circumstances7,8. There are merits to having a friend that is a physician or, in some cases, your physician. The very same American College of Physicians Ethics Manual that I cited earlier acknowledges this. Read the excerpt (specifically the last two sentences):

Physicians should usually not enter into the dual relationship of physician–family member or physician-friend for a variety of reasons. The patient may be at risk of receiving inferior care from the physician. Problems may include effects on clinical objectivity, inadequate history-taking or physical examination, overtesting, inappropriate prescribing, incomplete counseling on sensitive issues, or failure to keep appropriate medical records. The needs of the patient may not fall within the physician’s area of expertise. The physician’s emotional proximity may result in difficulties for the patient and/or the physician. On the other hand, the patient may experience substantial benefit from having a physician-friend or physician–family member provide medical care, as may the physician. Access to the physician, the physician’s attention to detail, and physician diligence to excellence in care might be superior [emphasis added] 6.

I did not gain any additional benefit from having the prescriptions written through my physician-friend other than simply having them. But having the tests done was what mattered the most. I know I can’t do this continually, but it allowed me enough time to find a primary care physician at a time that was convenient for me. As such, I called back my original primary care physician and scheduled an appointment within two weeks. They initially tried to give me an appointment months away, but I pestered and pleaded, and they added me on as an “over-book.” When my visit came, I did have to wait nearly two hours past my appointment time to be seen.

After nearly six weeks from the original episode of hematuria, I saw my primary care physician. My copay was $15, and I haven’t received a supplemental bill in the mail. Yet. I also haven’t had any more instances of bleeding in weeks. However, things could change, and I may still be charged in full for the visit if my insurance truly doesn’t cover my primary care physician. My primary care physician agreed that my blood work (creatinine) and ultrasound were normal. But he referred me to a stone specialist and ordered a special urine test for people with recurring kidney stones. The urine test is, of course, not provided by the laboratory that is contracted with My Insurance. And so, the saga continues…

Footnotes:

  1. Names of all health-care establishments have been fictionalized.
  2. While in medical school, I went to the ER after injuring my arm. In total I received three bills, one was the deductible up-front. The second bill included the items the insurance company decided not to cover. And finally the third bill was for the services of the ER physician himself who was contracted separately from the ER. I am surprised that the nurse, nurse tech, janitor, plumber, line cook, and electrician didn’t also send me individual bills for their services during my brief 5 hour stay in the ER.

References:

  1. Joshi, Shivam, Roger Nehaul, and Monica A. Broome. “Declining proportion of physician-owned practices possibly related to increasing burnout.” JAMA internal medicine8 (2013): 710-710.
  2. http://medicaleconomics.modernmedicine.com/medical-economics/content/tags/affordable-care-act/access-primary-care-remains-challenge-62-million-?page=full
  3. Wimpissinger, Florian, et al. “The silence of the stones: asymptomatic ureteral calculi.” The Journal of urology4 (2007): 1341-1344.
  4. Asplin JR, Favus MJ, Coe FL. Nephrolithiasis. In: Brenner BM, ed. Brenner and Rector’s the kidney. 5th ed. Philadelphia: Saunders, 1996: 1893-935.
  5. Rogozov, Vladislav, and Neil Bermel. “Auto-appendectomy in the Antarctic: case report.” BMJ 339 (2009).
  6. Snyder, Lois. “American College of Physicians ethics manual.” Annals of Internal Medicine1_Part_2 (2012): 73-104.
  7. Latessa, Robyn, and Lisa Ray. “Should you treat yourself, family or friends.” Family practice management3 (2005): 41-44.
  8. http://www.kevinmd.com/blog/2012/10/doctors-treat-family-friends.html

2 thoughts on “As it turns out, being a patient is not easy.

  1. Another superb post!
    I usually work 3 weeks on, 1 week off in my OTR (over the road) job. On my down time I have what I like to call Doctor Daze. I try to schedule my follow up appointments, lab tests, and any occasional X-ray, joint injection, mri, or random dental visit on the same day. It may sound crazy but if they are scheduled throughout my week off I often feel like I have no down time. Not good if I’m headed back trucking on the beginning of a holiday weekend.

    Like

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