“I don’t know.”

It’s an answer patients hate to hear. It is also an answer we doctors hate to utter. And in truth, many of us fail to say those words when it would be appropriate to say them. We spent long hours over many years of training, sacrificing personal time and family life. Most of us are perfectionists and not knowing a medical diagnosis often feels like failure. Perhaps, the better answer is, “I don’t know, but I am going to help you find out.”

As doctors, we don’t know everything. Unfortunately, when we fail to admit when we don’t know the answers, we cause great harm to our patients. We become the doctor that patients don’t trust and the doctors who they think don’t listen and care. We may care a great deal, but it won’t matter if our patients don’t think we have their best interests at heart or are helping them uncover what is the cause of their symptoms or fears. Patients may avoid seeking care when they need it or get frustrated and not seek any further help because they feel their doctor has no clue what is wrong with them.

Patients do not get upset when I tell them “I don’t know” (except for one guy, but that is a whole other article), because they know I will help them find the answer. Yes, it is upsetting when you don’t feel well and all the blood results come back normal. Medicine is not always an exact science and often I feel more like a sleuth than a clinician. But, the fact that neither I, nor the test results, reveal the cause of a patient’s symptoms doesn’t mean there is not an underlying problem. And here is where I think many doctors fail to address their patient concerns: they tell them there is nothing wrong. Yes, there very well is! The patient doesn’t feel well and they are scared that there is something wrong with them. It is our responsibility to help them find the answer and to feel better. If we give up on the patient, what are they supposed to do?

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In our current healthscape, medical systems are getting larger and larger and patients are getting lost in the system. Not only do they have to open themselves up to disclosing sometimes embarrassing details, they also have to know what are deductibles, prior-authorizations, formularies, out-of-network services, and on and on. Many times, there is no one to help them even begin to navigate the system. And once they do, they often feel like they are on the assembly line at Amazon and no one is listening or cares.

“Patient advocacy” is a key phrase these days, with many groups advocating for patients. Advocacy is especially important for patients with rare disease, who often take years to diagnose only to find no treatment is available or affordable. While these groups do a great job raising awareness and advocating for research and the need for new therapies, every patient must be their own advocate.

Helping patients advocate for themselves

  • Education. Encourage patients to know what their insurance coverage means and what they’re entitled to. Many plans promise to pay for brand names only for patients to find out this is true only with a $50 copay when they show up at the pharmacy. Advise patients to research their disease but to use only reputable sources, which you can direct them toward.
  • Speaking up. Patients who don’t believe they are being treated right should be supported in speaking up. Many patients return from specialists with unanswered questions because the “doctor was too busy” or they “didn’t want to bother the doctor” with these questions. Encourage patients to ask the questions! It is our job as physicians to answer them. Suggest to patients that they write questions out, bring them to their office visit, and check them off as they get answered.
  • Appealing denied services. Primary care doctors do this many times a day, and we know it often doesn’t work. Many times when we have failed at getting something covered, I will see patients take charge and get approval for a medication or diagnostic test. I don’t know why it works, but I often think it is the luck of the draw who they connect with at the insurance company.
  • Not following medical advice blindly. Encourage patients to understand their medications and why they are taking them, as well as their medication allergies and medical diagnoses so they can share that information with anyone who cares for them.
  • Embarrassment. Inform patients that we don’t judge their behavior and are simply looking for a diagnosis and how to help. It is the doctor’s job again to make the patient feel more comfortable in order for them to tell us anything that may help reach an answer.
  • Second opinions. Not all my patients agree with my conclusions, and when they don’t, I offer a referral for another opinion.
  • Getting a new doctor. Like in any other profession, there are good and bad doctors. And like anything else in life, there are personalities that just clash. Patients need a doctor they trust and feel comfortable with and should be aided in finding an alternative when such clashes occur.
  • Teammates. We are in the best position to advocate for patients: with insurance companies, against hospitals that want to discharge them, etc. Inform patients that they need a doctor in order to get the tests and medications you need and that it is far better to bring doctors onto their team rather than making us the enemy.

While the doctor-patient relationship has traditionally been a sacred bond in medicine, it has take a beaten in recent years. Some of the blame can be cast on doctors, but far more influencing this is the intrusion of third parties into our relationship. Many times we cannot give patients what they want or need because insurance companies say no. Hating doctors when lost in the sea of medical uncertainty only adds another layer of frustration. Tell patients it’s OK to stand up and be heard, but not to hate their doctors. Be straightforward with your patients, and let them know when you don’t know something. Difficult and chronic diseases need much open communication by both parties and a commitment to the relationship to do the best for the patient.