Patients Need to Advocate for Themselves, But Don’t Hate Your Doctor

 “I don’t know”

That is an answer patients hate to hear. It is also an answer doctors hate to utter and in truth, many of us fail to say those words when it would be proper to say them. Doctors 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. If you come across one who does, they are lying. Unfortunately, when we as doctors fail to admit when we don’t know the answers, we cause great harm to our patients. We become the doctor 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.

Being a family doctor, I am expected to know a lot across the whole lifespan and across every organ system. But also, being a family doc, the wide range of diseases I have seen makes me realize there is a whole realm of medical information out there that I don’t know. It is my responsibility  to help the patient by either diagnosing and treating them myself, sending them to the specialist who may help them when I can’t, and give them resources to search on their own outside the limited time we spend together in the exam room.

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 I, nor the test results, reveal the cause of your symptoms doesn’t mean that 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?

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. Is anyone out there that can help, they are left to wonder.

Patient advocacy is a key word these days and there are many groups out there that advocate for patients. They may be very popular and easy to find or they may be more elusive. Advocacy is especially important for rare disease patients who often take years to diagnose only to find there is no treatment available, or it is just too unaffordable. 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 as well.

How can a patient advocate for himself/herself?

• Educate yourself. Know what your insurance coverage means and what you are 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. Do research on your disease but be careful of abusing Dr. Google. Use only reputable sources. Know your disease and what should you expect when you go to the doctor.
• Speak up. If you believe you are not being treated right, speak up. I see so many patients come back from specialists with unanswered questions. When I ask them why they didn’t ask when they were there, they say that doctor was too busy or they didn’t want to bother them. Ask the questions! It is our job to answer them. If they are headed out the door, speak up and tell them you have more questions. In fact, write them out and bring them to your visit and check them off as they get answered. As a family doctor, I may be able to answer them but I cannot get into the specialist’s head to see what their thought process is. For example, a surgeon may insist you need surgery. I may disagree but if I were privy to the surgeon’s reasoning, that could very much change my mind.
• Appeal 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. Why? If anyone can answer this, it would make many of our lives much easier but I often think it is the luck of the draw who you connect with at your insurance company.
• Don’t follow medical advice blindly. When I see new patients, part of the history I ask is medications. In the same day, I see a patient with a color-coordinated graph of all their medications and later in the same day see one who is taking “a little white pill” they got in Mexico but they don’t know what it is for. If someone told you to drink something that might or might not be poison, would you? Of course not! But, some medications are equally as dangerous when combined with other medications or in the presence of certain underlying medical conditions. Know your medications and why you are taking them. Know what you are allergic to. If you come to see me for pneumonia and know you are allergic to an antibiotic but don’t know which one, that does not help very much. Also, know what your medical diagnoses are. If you have had a heart attack in the past, you need to make us know that.
• Don’t be embarrassed. Yes, I know this is easier said and done. I hear patients often say something is embarrassing but I honestly have seen it all before. We don’t judge your behavior no matter what you may have done. We don’t care if you didn’t shower the day of your appointment. We are looking for the diagnosis and how to help. Sure, something may be extremely embarrassing but it is the doctor’s job again to make you feel more comfortable in order for you to tell us anything that may help reaching an answer.
• If you disagree, get a second opinion. Not all my patients agree with my conclusions. In fact, when they don’t, I offer a referral for them to get another opinion. Again, doctors don’t know everything.
• If you don’t like your doctor, get a new one. You are putting your most valuable possession in your doctor’s hands: your life. Why would you entrust it to someone who you don’t have a good relationship with? Like in any other profession, there are good and bad doctors. And like anything else in life, there are personalities that just clash. You need a doctor you trust and feel comfortable with. Would you buy a car from a salesman you thought was pulling something over on you? No, you would go to the car dealer down the road. You may not always agree with your doctor and that is OK. But, if you do not like your doctor, you need a new one.
• Make your doctor a teammate. Your doctor is in the best position to advocate for you: with insurance companies, against hospitals that want to discharge you too soon, etc. I have seen several advocacy groups who are very “anti-doctor”. However, you need a doctor in order to get the tests and medications you need. In the US, there is currently no way around that fact. It is far better to bring doctors onto your team, whether you are advocating for yourself or a whole group, rather than making them enemy. We truly are not and most of us really care about and want to help our patients. But, we don’t know everything.

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 you what you want or need because insurance companies say no. Hating doctors when your are lost in the sea of medical uncertainty only adds another layer of frustration. As a patient stand up and be heard, but don’t hate your doctor. And doctors, be straight forward 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.

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