Practice being an engaged patient: Choose your own adventure

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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  • justanotherepatient

    These scenarios seem to assume Jan either has some hefty assets or awesome health insurance. Most of us with insurance can’t just choose to see a specialist on our own. We have to negotiate that with our PCPs and get a referral. It sounds as if Jan needs a better relationship with her PCP to be able to request the less expensive parasite tests up front before doing the CT scan.

    • sherry reisner

      Jan definitely needed a better PCP relationship and it was this incident that made her realize her overall dissatisfaction with her PCP. She had Medicare so she did not need a referral. Ideally, she would have gone back to her PCP to request the stool test, and in all likelihood she would have received the needed treatment without needing to see a specialist. So you could say that the poor communication with her doctor drove up costs even though Jan’s involvement in her healthcare avoided the expense of unnecessary testing. A good PCP relationship is valuable on many levels!

  • Lynne Lee

    This is an awesome example of a patient that feels and is truly empowered. Do you know of or have any information on how a patient becomes a self advocate? I am on the Patient Education Advisory Panel for Pain B.C. and we are looking at developing a webinar series for self advocacy. Any help would be greatly appreciated.
    Thank you,
    Lynne Lee

  • Homeless

    I wouldn’t call my misdiagnoses an adventure. It was painful and awful and I will never completely trust a doctor again.

    If Jan wanted to take control of her care, she could have done a web search for the differential diagnosis of her weight loss and perhaps used one of the online labs to confirm or rule out her suspicions.

    Perhaps she should look into LADA…just to make sure.

    • Sherry Reisner

      I’m sorry for your difficult experience. I certainly don’t mean to imply that difficulties with healthcare are ever fun. Fortunately, Jan did gain weight back after the treatment for hookworm and, her blood sugar levels returned to normal, too.

  • Nabin Sapkota, MD

    This is the kind of story that happens everyday all over this country. Our health care system seems to be designed for the benefit of the population at large, not for the benefit of an individual patient. All practice guidelines and policies talk about what percentage of patients benefit from a particular strategy over another.

    Unfortunately, doctors have been conditioned to think in statistics and probability. They fail to look for a zebra when the probability of it being just another horse is very high. Evidence based medicine encourages doctors to think in probabilities. The focus seems to be shifting towards improving statistical outcomes rather than taking care of a patient as an individual person. They have been conditioned to think that missing one diagnosis is not as important as following the standard of care that work for the majority of the patients. All quality measures and incentives promote this type of behavior.

    Unfortunately, it means that if you are sick with something that only happens to a small number of patients, you are basically on your own. For you, the statistics does not matter. Even if you have a 99% probability of not having that disease, it makes no difference to you. If you happen to be a zebra, you are 100% zebra.

    Now the question becomes, how do you know when you are the outlier. You basically need to trust your gut feeling. Doctors who faithfully follow the guidelines and only think in terms of probability rarely make the diagnoses of unusual and rare conditions; doctors who follow their hunch when things do not make sense are the ones that get these diagnoses right.

    When your doctor fails to think outside the box, you need to do so. When you are sick, you usually get a strong gut feeling when things are not getting better. Trust your instincts. When something does not fit the usual pattern, do not just listen to the doctor and reassure yourself. Tell you doctor when you are not feeling well despite the treatment. The doctor may ignore you once or twice but will eventually be forced to think twice about his theory. Do not be afraid of being labelled a “difficult patient”.

    In Jan’s case, Jan did everything right but the odds were against her. Most patients who went to the primary doctor with a possible diagnosis of pre-diabetes were not loosing weight. Most of them probably needed to lose weight. The doctor knew exactly what he needed to do for the majority of patients but he did not know what to do with Jan. He had probably not treated anyone with parasite infestation but he probably had seen patients lose weight from cancer. Ordering CT scan rather than testing for parasite made sense to him from a probability point of view.

    I admire Jan’s courage when Jan insisted on being tested for parasites even when the infectious disease specialist dismissed it as being very unlikely. Again he was thinking “low probability.” But Jan had a gut feeling and she did her homework. The doctor could not ignore her request because she made him think twice.

    I think every patient needs to hear Jan’s story to understand that we have cracks in our healthcare system. There are doctors who look out for every patient to make sure they do not fall into the cracks but most doctors cannot afford to do so with the current system. That is why you have to look out for yourself when things do not make sense. In the end, the doctor will always try to find an excuse when he misses a diagnosis but you will have to bear the consequences.

    Thank you.

    • Sherry Reisner

      Thank you for such a thoughtful response. There is, indeed, a lot to mine in this story for both doctors and patients.

  • carolynthomas

    Sherrie, I love this “choose your own adventure” format. Life’s all about choices every day – and that certainly includes health care. Yet we sometimes shuffle through our own medical visits as if we have neither a voice nor a choice. Thanks for this reminder.

    • sherry reisner

      Sometimes we don’t even recognize when a decision has been made for us! Thanks for reading and sharing your thoughts

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