The Work of Being a Patient

It’s widely known that people with diabetes — as with many other chronic diseases — are expected to spend a fair amount of time self-managing their condition. This can include monitoring your blood glucose level, counting carbohydrates at mealtimes, taking insulin and other diabetes drugs, exercising, and keeping a log of any or all of the previous activities. But beyond these health-enhancing behaviors, patients are often expected to play a different and potentially far more frustrating role: coordinator of their own health care.

This role may seem unavoidable, and to some degree it is — some time has to be spent scheduling appointments, giving permission to share medical records, and navigating certain aspects of insurance companies. But exactly how much time these kinds of activities take can vary widely, depending on your condition, how good your doctors’ offices are at communicating with you and each other, and simply how lucky you are at avoiding bureaucratic messes and mistakes.

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A recent article at Vox explores the constant demands that are imposed on patients, as the writer deals with foot problems stemming from a running injury. Some of these demands are hardly significant on their own — after all, everyone encounters some inconvenience in daily life when dealing with services and businesses. But when it comes to health care, those smaller inconveniences can easily add up to an enormous time burden and massive frustration.

In one anecdote, the writer is given a prescription for a topical drug that her doctor hopes will reduce swelling in her joint. She takes this prescription to the nearest pharmacy, only to be told they don’t carry it. She tries two other pharmacies, which also don’t carry the drug, and then her insurance company’s mail-order pharmacy, which doesn’t cover it. She e-mails her doctor’s medical assistant the next day to ask for help, and several hours later she receives a reply saying that she shouldn’t have received the prescription in the first place — it would have to be ordered by a specialty pharmacy. But then another assistant e-mails to ask if she needs help filling the prescription, and doesn’t respond to two e-mail replies. Finally, three days later, she receives a call from the specialty pharmacy asking where to ship the drug.

Many other small but potentially very frustrating problems are discussed in the article, such as phones that aren’t answered, calls that aren’t returned, and procedures like requiring patients to fax a form allowing the release of records, which can then only be sent by fax to another doctor’s office. But one anecdote stands out because of who the patient is: a doctor and professor of pediatrics at Indiana University. She explains that due to the lack of communication between her doctor and her pharmacy, every three months she loses several hours trying to get her prescription refilled — and even then, she usually runs out of it before her refill is approved and ready. As the article notes, if this happens to a doctor and professor of medicine, what hope is there for the rest of us?

The author of the article mentions several measures that could reduce the time and organizational burden that patients face, such as universal adoption of electronic medical records that can easily be shared between doctors. And computers might be able to do certain other tasks better than humans, such as keeping track of when a prescription needs to be refilled and contacting a pharmacy automatically. But this would require doctors, pharmacies, and insurance companies to be connected electronically in a way they aren’t right now, and would take a decent amount of money and coordinated effort. Each of these parties may simply prefer not to spend that money, figuring that patients will always fill in the gaps as they do now.

What’s your experience been like with regard to coordinating your health care — are your doctors, insurance company, and pharmacy easy to deal with most of the time? Have you ever had a seemingly easy task — like filling a prescription, or getting an MRI — turn out to be extremely difficult? How much time do you typically spend dealing with health-care coordination and problem resolution? Leave a comment below!

  • Michael Donohoe

    For a number of years, I did not take care of myself. After a period of declining health at the age of 47, I finally found a physician who found me to be in congestive heart failure due to a congenital valve issue. Since that time, I ended up with the valve surgery, along with a triple bypass, retinopathy, neuropathy and have decreased my A1C from 10.0 to 5.9 in a little over a year through diet (near vegan) and exercise. In short, yes, it has become a full time job to bring the overall health to a point of status quo, as well as working through physical injuries caused by staying in constant motion. I left my high stress job and I am consulting as well as sharing my diabetes story with anyone who will listen.

  • Fedup Pauper

    I can’t afford to purchase a smart phone as a tool for managing the wireless technologies needed to monitor my illness. There ought to be better way. *sniff* I am going to have a very difficult time with managing this very recently diagnosed disease. Y’all please pray for me and thanks for your comments. This is a good website.

    • RAWLCM

      Many of the makers of glucose monitors have models with advanced tracking features, and they give them away free so you will be locked into using their test strips. Older model smartphones are often available for a minimal up-front charge -like a penny- when you agree to a service contract. Unlocked older phones are available on eBay for a few bucks, and you can use them with a discount carrier, some of which charge about a dollar a day. And if that’s too much, some of the programs run on a phone or tablet (again an older or used tablet can be had for very little money) without an active service account or by using public Wi-Fi.