Practice being an engaged patient: Choose your own adventure


Be empowered. Get informed. Be engaged. Get involved. We’re exhorted to help make our medical decisions, to speak up, to ask questions, to say how we feel. But if we’re going to get the hang of being engaged patients, we could use a way to practice our role in the privacy of our own homes.

Well, read on my fellow patient. I give you a choose-your-own-adventure story of the medical kind. It’s based on the true story of one savvy woman’s experience getting the right diagnosis and care. You’ll get to make the decisions she faced so you can see if you do as well as our heroine. (Hint: The second choice is what really happened.)

Meet our heroine, Jan

Jan is a 102-pound powerhouse who is losing weight for no apparent reason. As a businesswoman in her 60’s, Jan has a lot of life experience that helps her advocate for herself at the doctor’s office and she isn’t afraid to do it even when she’s down a few pounds.

When her clothes get baggy, Jan sees her doctor who runs some blood tests. Results: pre-diabetes. Yup, skinny people get diabetes, too. But her doctor is very certain that pre-diabetes has nothing to do with Jan’s weight loss. She suggests that maybe Jan simply isn’t eating enough.

Jan does some research on caloric intake and decides to make to eat about 400 calories more than she needs to maintain her weight. After a few weeks, she fails to gain an ounce.

  • What should Jan do?

1.      Go shopping for smaller clothes, OR

2.      Call her doctor back to ask what to do next.

1. Go shopping for smaller clothes. At 98 pounds, Jan ends up shopping in the pre-teen department. When she shows up at work in her new trendy outfits, her professional credibility plummets. Her own doctor suggests that she see a pediatrician.

2. Call her doctor back to ask what to do next. When Jan fails to gain weight, she calls her primary care doctor back and presses her, “What are we going to do about my weight loss?” Her doctor answers dully, “We could do a CT scan.”

Jan isn’t pleased. She knows a CT scan means getting a big hit of radiation. Jan asks, ”What are we looking for with a CT scan?“ The doctor has a one-word answer:


  • What should Jan do?

1.      Schedule that CT scan ASAP! OR

2.      Don’t panic. Get a second opinion.

1. Schedule that CT scan ASAP! Jan schedules a CT scan for the next week. The report says there’s a vague shadow that might be nothing. An MRI is recommended. Two weeks later Jan has an MRI. The report shows “nothing remarkable.” After 3 weeks and a four-digit medical bill, Jan is a half- pound lighter and has no answers.

2. Get a second opinion. Though she’s slightly unnerved by her doctor’s recommendation, she decides not to panic. Looking for cancer seems like an extreme next step. She wonders whether she should get a second opinion from an endocrinologist or a nutritionist.

Feeling a little confused, she calls a friend to talk it over. As they talk, her friend suddenly remembers, “Jan! You were in Southeast Asia a couple months ago. You could have parasites!”

Jan balks. “No way. I was too careful.” She’s silent for a moment. Then she swears. “I ate sushi at an American hotel Thailand! ” She swears again.

  • What should Jan do?

1.      Go back to see her PCP, OR

2.      Go to an infectious disease specialist.

1. Go back to see her PCP. This is a reasonable thing for Jan to do. Jan’s PCP can give her a simple stool test to look for parasites. But when she calls her doctor, she’s put on hold for 15 minutes. While listening to crummy music, Jan realizes how upset she is that her PCP jumped to the cancer possibility and recommended an expensive test with possible harms. She recognizes that she doesn’t communicate well with this doctor and she decides she’d be better off seeing a specialist while she searches for a new PCP. She hangs up in the middle of a sanitized version of Smells Like Teen Spirit.

2. Go to an infectious disease specialist. Jan gives the infectious disease doctor her complete medical and travel history. After a quick exam he is confident about his diagnosis. “You don’t have parasites.”

  • What should Jan do?

1.      Go back to her PCP and schedule a CT scan, OR

2.      Ask for the parasite test anyway.

1. Go back to your PCP and schedule a CT scan. (See “Schedule that CT scan ASAP!” above.)

2. Ask for the parasite test anyway. Jan tells the infectious disease doctor that she prefers to have a test to make sure she doesn’t have parasites. He tells her, “You don’t need it.” Jan won’t be deterred.  “I was in Southeast Asia and I am here now,” she tells him. “I’d like to do this simple test.”

A meeker patient would have left the office empty-handed and signed up for the CT scan. But Jan leaves with a paper bag containing one stool sample collection kit. She doesn’t want the big guns until the small stuff is ruled out.

Jan gets a diagnosis, but does she get the right treatment?

A week later the results are in. The sushi wasn’t to blame. Jan has hookworm, a parasite that usually burrows through the skin of the foot. Jan had taken off her shoes to enter several ancient temples. The doctor prescribes medication.

You probably expect a happily-ever-after ending right here — the one where Jan gains weight and all her grown-up clothes fit again. That’s eventually what happens, but not before she has one more adventure in empowered patient-hood.

On the phone, the doctor tells Jan how to take her meds. But the next day when she picks up the prescription, the label shows a higher dosage. Jan calls the doctor’s office to clear up the confusion. The physician’s assistant is blunt, “Do what the doctor told you yesterday.”

  • What should Jan do?

1.      Follow the doctor’s verbal orders and ignore the medication label, OR

2.      Insist that someone check with the doctor.

1. Follow the doctor’s verbal orders.Jan takes the lower dosage according to the doctor’s phone instructions. She finishes the medicine, but doesn’t gain weight. A follow-up test shows that her hookworm population is thriving.

2. Insist that someone check with the doctor.Jan does not like the tenants in her gut. She wants to be sure she takes enough medicine to evict them quickly. She insists that the physician’s assistant check with the doctor. It turns out the higher dosage on the label is the right one after all.

Jan isn’t afraid to speak up at the doctor’s office. What about you? What are you going to do if your gut tells you that your doctor’s recommendation isn’t right for you?

Sherry Reisner blogs on patient-doctor communications for HD Care Compass.

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