• They never called me with an appointment for the CT scan my doctor recommended to evaluate my abdominal pain. Did the office get it approved? Did they forget about me? I’ve been hurting for 3 weeks.
  • They told me I needed to take medication, but I’m not sure what it is, what it’s for, how long I’m supposed to take it, if it has side effects, or if it will interfere with my other meds.
  • I don’t understand what “diabetic retinopathy” means, how I got it, if it’s serious, or what to do about it. Am I going to go blind?
  • What do you mean my insurance won’t cover it? But the doctor says I need to have it, and I think so, too!
  • I’ve been doing well on the same blood pressure medication for 15 years. Why do I have to change to something else?
  • It seems like it’s taking forever (it’s been at least 2 weeks) for my biopsy/lab/X-ray results and I’m worried. Why hasn’t anyone contacted me? Is it bad? Is it lost?

These scenarios play out for patients every day. If you’ve ever been seen in a doctor’s office, a clinic, an immediate care center, a hospital, a long-term care facility, or had any interactions with the US healthcare delivery system whatsoever, chances are good that you have experienced something similar. Navigating your way through illness, or even routine medical care, in the US can be more difficult than climbing Mt. Everest-and leave you just as exhausted and oxygen deprived. At least that’s how your brain and body feel. Why does this happen, and what can you do about it?

Human nature Patients in a healthcare setting frequently feel vulnerable, scared, and anxious about what may or may not be found, even during a routine exam. These emotions can be compounded by other distractions or concerns, such as a project or trouble at work, getting out of the office in time to pick up children from school, family conflicts, or financial stressors. All of these internal and external factors can impact what and how pertinent medical information is heard and processed. Even good news. “Did you just say the results were normal?”

Understanding A car is ostensibly less complicated than the human body, but that theory never helped me in an autobody shop. The mechanic very dramatically gestures to the faulty carburetor/radiator/brake in question, then slowly and carefully explains what’s broken, what needs to be done about it, and what it will cost. As he speaks, the following thoughts poing around in my head like deranged atoms in a box, “I don’t know what that is or what it does,””Those words sound familiar, but strung together, they’re not making any sense,””huh, where did that scratch on my bumper come from,” and “wahwahwahwahwah.” I may ask the nice and tolerant technician to repeat what they just said, usually with the same result. Then I say, sure, go ahead and fix it- because I need my car to run, and I don’t want reveal just how ignorant I am in the vehicle operations department. So, the mechanic explained, and I listened, but we were separated by a chasm of knowledge and understanding. The same thing happens to patients in medical settings.

The communication disconnects are amplified if there are language, cultural, and temporal impediments. For example, I had patients for whom English was not their native language, where it was obvious during our discussions that chunks of relevant information were being lost, not to mention nuance and fine detail, yet they declined the use of a translator. This may have been out of pride, shame, overestimation of their English skills, concern over the loss of privacy, or other reasons. The upshot was that it compromised my patients’ ability to participate in the decision-making process, to absorb the most complete understanding of their clinical situation, and to fully and accurately weigh the risks and benefits of their treatment options. Cultural norms may make people reluctant to ask questions or to challenge authority.  The pressures to produce, and the burdens of the electronic medical record reduce face time with patients, and compromise doctors’ ability to have substantive and effective conversations.

Memory Studies show that patients only remember 49% of the recommendations made during a doctor’s visit, and this figure drops to 38% for those with less than a high school education. When my mother was ill, my father, an internist known for his intellect and prodigious memory, and I accompanied her to a consult with an out-of-state oncologist to whom she had been referred. Several months later, my father and I were having a disagreement about something that the oncologist had said. The issue was only resolved by reference to my written notes from the visit. Dad was a physician, he had cared for patients with my mother’s diagnosis, he understood far more than either my mother or me, and yet he had it wrong. 

Private insurance The US healthcare delivery system has evolved radically since the time when you could pay for medical services with a dozen eggs and a hug. Many of the changes have been beneficial, such as specialty driven clinical care guidelines, and adoption of safety measures. However, under the guise of improved quality of care, other changes are primarily designed to maximize the profits of commercial entities. The more hurdles that need to be overcome, the longer the process takes, the greater the odds that the patient or the physician will give up, the patient will change insurance carriers, making coverage of the condition in question another company’s responsibility, or the patient will, very unfortunately, die. All 3 situations produce an actuarial win for the original insurer.

Lack of choice For-profit insurance companies impede access to care in a myriad of ways. Typically, as premiums, co-pays and deductibles go down in price, the more limited the plan’s network of providers (doctors, hospitals, etc).  In 2020, Congress passed legislation to help protect consumers from surprise billing, in cases where you use an in-network hospital, but receive care from an out-of-network provider who is not employed by the hospital, such as an anesthesiologist or ER physician. While this is a step in the right direction, there are still many situations where needed care is not covered care. For example, if you are covered by an HMO or other restricted network, and are away from home, it may be very difficult or impossible to obtain covered non-emergent care.

Rules Most, if not all, commercial insurance plans require pre-authorizations (PA) for at least some (or many) procedures, tests, and/or medications. These reviews are initiated by insurance company employees with less education and expertise than the ordering providers.  If the request is escalated to the “peer review” level, there is no guarantee that the “peer” will be in the same specialty as the ordering physician. And of course, none of the reviewers have ever met the patient. While traditional Medicare does not require pre-authorization for most services, 80% of Medicare Advantage (administered by commercial insurance carriers) participants are enrolled in plans that require pre-authorization for at least some services. The pre-authorization process delays care, consumes physician and staff time, and is of unclear benefit from a medical or cost perspective. A 2021 American Medical Association survey[1] found that 91% of physician respondents reported that PA policies had adverse clinical consequences for their patients.

Scheduling departments If your doctor recommends a procedure or diagnostic testing, the odds are good that you’ll be told that someone in the office will request the required authorization from your insurance company, and then you’ll be notified about when and where you need to go. How long should this take? Who will call? Will your scheduling needs be considered?  Will the tests, procedures, labs be arranged at an in-network facility, and performed by an in-network provider? Should you call your insurance company as well? Hold please, we’ll connect you to our offshore operator shortly. Your health needs are important to us.

True stories While it’s hard to choose from my trove of examples, the following are illustrative of the senseless impediments to physicians providing, and patients receiving, necessary and appropriate care.

1. I lobbied for days for permission to perform a laparoscopy (procedure to put a scope into the abdomen to see what’s going on) on Nancy* who had had several weeks of right lower quadrant pain not explained by imaging studies. The patient was understandably reluctant to proceed, as without the approval of her insurance company, she could be held responsible for the entire bill (hospital, physicians, and ancillary charges). When we finally obtained permission to perform surgery, she was found to have chronic appendicitis and a walled off abscess-a condition that demands surgical attention.

2. Frances* had severe itching and pain due to a biopsy-proven skin condition of her external genitalia, the standard-of-care treatment of which is a particular high potency steroid ointment. Her insurance company wanted me to substitute a therapeutically inferior product. It took 3 weeks of sustained effort to finally reach her insurance company’s pharmacy benefit manager, who also insisted that I prescribe the “preferred” inappropriate medication. After 15 minutes of unsuccessfully arguing my case, I became so exasperated that I told the pharmacist if she didn’t believe me to “Google it.” She put me on  hold. 5 minutes later, the medication was approved. So much wasted time. Too much unnecessary suffering.

Billing It is important to reconcile your bills for treatment with your insurance company’s explanation of benefits, known as EOBs. Never assume they’re correct. Once I was charged for an X-ray that was never done. I was charged for a preventive visit that should have been covered at 100%, without copay or deductible. I was told that providers weren’t in network when they actually were. If money is being spent on your behalf, especially if it’s your money, make sure the money is actually owed. If not, spend it on shoes. (OK, that’s just me)

The solution I’m glad that I caught the mistakes that I did, and that I had the time, knowledge, and fortitude to get them corrected. Yet, every single time something like this happens, I wonder how those with less healthcare experience manage. Sadly, all too often, the answer is, not that well. Without a streamlined, portable, patient over profit system, with interconnected/interoperable electronic medical records, and universal insurance coverage, these obstacles, misplaced incentives, and harms will persist.  In the meantime, almost everyone who receives medical care would greatly benefit from a personal patient advocate and navigator. Not just any advocate/navigator, but one with medical and health systems expertise- to listen, take notes, keep track of, and follow, the rules, regulations, referrals, and recommendations, and to actively advocate on the patient’s behalf.  

Here are some hard won suggestions:

Write down your questions before your visit.

Make a list of your medical conditions, surgeries (regardless of how long ago they were done), allergies, the names of your medications, their dosages, and how often you take them. Keep this information in your purse/wallet and computer.  Edit the list as often as necessary, keeping it current and accurate. Don’t assume it will “be in my medical record”. What if you have an accident out of town and need emergency care? Until we have a national interconnected medical record database, the ER doctor in Hilton Head may not be able to see your family doctor’s notes from Cleveland.

Take a friend, family member, and/or the aforementioned patient advocate with you to your visit, especially if the provider is going to review results or make a treatment plan. The more people receiving the information, the less likely something gets forgotten. 4 ears are better than 2. Also, the support person may be able to listen with more objectivity and less emotional static.

Take notes.

If you don’t understand something, ask for clarification.

To the greatest degree  possible, learn which facilities in your area are in-network with your particular insurance plan, if you wish to avoid higher out of pocket costs.

If you think you will be away from home for long periods of time, have or might develop a condition which would benefit from medical care at a “mecca” like The Mayo Clinic, Johns Hopkins, MD Anderson, or Memorial Sloan Kettering, or that you might move out of town before you are enrolled with an insurance plan in your new location, you will be better off with traditional Medicare, Medicaid, TriCare, or a commercial insurance plan with national coverage.

Take and review your After Visit Summary, if one is provided to you by your provider. In addition to your vital signs, such as blood pressure, this document usually lists medications and tests ordered at the time of your visit. It may also have instructions, or helpful information or advice from your clinician.

Compare the bills you receive from your provider to the EOBs from your insurance company and your plan benefits. To the best of your ability, make sure that what you pay is what you owe.

If you are not a native English speaker, do not hesitate to ask for a translator. Under Section 1557 of the Affordable Care Act, most providers are required to provide them without charge to the patient.

Have all of your prescriptions filled at the same pharmacy, and get to know your pharmacist. This will decrease the chances of inadvertent drug-drug interactions, or receiving medications to which you might be allergic or have side effects.

Your doctor is responsible for many patients. You are only responsible for one-you. Take that responsibility seriously and be an active participant in your care.

When in doubt, get a second opinion.

[1] https://www.ama-assn.org/system/files/prior-authorization-survey.pdf

*Names changed to protect patient privacy.