Maybe It’s Time To Be A Difficult Patient By Alice Herb

As a health care attorney and patient advocate for over 30 years, I can certainly attest to the importance of patients being informed when dealing with health care providers. We must always remember that we are the most important patient to ourselves and our own best advocate. But for many patients, especially older adults such as myself, no matter how well prepared we are, it can be an exercise in futility. I’ve come to the conclusion that our current healthcare system is not serving us well and is entirely too complicated to navigate.

I say this as someone who sold health insurance while in law school and who understands the details of insurance and its practitioners better than most. I have worked in the healthcare field as a bioethicist and patient advocate. And even I am having trouble getting the care I need. Let me explain and provide some suggestions for how to respond.

At large teaching hospitals in urban centers, the doctor/patient relationship is becoming more and more remote as many of the doctor’s tasks are being carried out by nurse practitioners (NPs), physician assistants (PAs)  or nurses (RNs). In many instances, these professionals can be very helpful but none of them is a good substitute for a physician whom you trust and with whom you want to confer on your health. The PCP (primary care physician) should be the person and traffic manager to gather all the expert consults or suggested treatments/procedures and discuss with you what you, the patient, should consider doing. But that often is wishful thinking in today’s world. The PCP does not have the time to digest the information, consider next steps and discuss the benefits and burdens of your situation.  In some facilities, the solution is moving towards telemedicine (communicating through electronic devices rather than in the flesh) which distances you even further from your trusted doctor. Telemedicine may be a lifesaver in remote areas where there is no nearby hospital or emergency center or any available physicians to contact. It can also be useful in talking to the doctor on follow-up or NPs or PAs when it is a workaday issue that does not need the expert advice of a physician. But it feels like another barrier to the doctor/patient relationship when you really need to speak with your physician. 

Another reality is that most doctors are no longer one-person practices. Many physicians work at hospitals or have joined together to form an out-of-hospital medical group. While you may trust one doctor, you may have to see one of the other physicians whom you barely know and who does not know you either. The wisdom of seeing one physician with whom you have a relationship and who is aware of your individual health status is lost by these administrative decisions. It takes tricky maneuvering to stay connected with that one doctor you want to see. If you believe, as I do, that good medical care is as much an art as it is a science, then the physician who really knows you will inevitably be a better diagnostician to discern what is right for you. But alas, the doctor/patient relationship is much at risk.

A third issue is a major one – money.  And that is a complicated story.

-Many physicians no longer take Medicare patients or frequently change the insurance carriers they will accept. The result is that the patient has to go doctor shopping to find new providers. The reason for this instability in physician availability is the three-tier fee system of what the physician or hospital will earn for a particular service. Medicare and Medicaid pay one set of fees (lowest), insurance companies another set (which can be different among insurers) and then there is the uninsured person who is unable to negotiate an acceptable fee (the highest).

-Cost of insurance – Premiums can be high or even unaffordable as one has to read inclusions and exclusions for supplementary coverage that is urged for Medicare recipients or choose among a number of options that one’s employer offers. The uninsured are in the weakest position in this scenario.

-Deductibles – the amount that insurance companies can deduct each year before reimbursements come into play.

-Insurance companies set rates/fees they consider reasonable and then reimburse a set percentage of those rates/fees. These are irrespective of what the patient is charged.

-Insurance companies favor HMOs (Health Maintenance Organizations) that establish a “network” of professionals they deem adequate and who inevitably charge far less than the “out of network” providers. These HMOs have their own rules and negotiate with insurers for fees. And in some instances, insurance companies no longer cover “out of network” providers.

-Finally, due to wildly differing fee structures established among specialties, physician earnings may vary sharply. Fee schedules for Pediatrics, Geriatrics, Palliative Care, Psychiatry and Primary Care are far lower than those of other specialties. Thus fewer medical students tend to train in these areas, resulting in fewer professionals able to provide this specialized care. 

All of these obstacles are difficult to overcome, especially for older adults. And solutions or strategies are hard to come by. The politics of health care has not dealt with the nitty-gritty of what this all means for patients who are elderly and need specialized attention.

Perhaps my first suggestion would be to become involved in the political process or urge your family to become involved. That’s a broad brush and long-term solution but we cannot let “amateurs” (including politicians, legislators or judges who write the plans, laws, and coverage) decide what is good for us. They do not necessarily know what needs fixing. We, the patients/voters/citizens, must advocate for ourselves. 

Another strategy is to let the physician know that you will not simply accept a substitute, that you want to be able to reach him/her within a reasonable period of time, that follow-up may be by telephone but that emails, texts or on-line “portals” will not do. Assert yourself or make sure that whoever is helping you is doing that on your behalf.

And complain if you are getting nowhere. And keep on complaining in the evaluations they keep sending. Let them know how you feel. Be a difficult patient. My belief is based on my experience that the difficult patient does get attention and has better outcomes. Worrying about whether the doctor, the department/office, etc. likes you because you are nice gets you nowhere. Demanding what you should be getting most often gets the respect and attention you need.

 I have tried to state in the simplest way I can the complexities and yes, the craziness of our current healthcare system from my perspective as an older patient. I do think we deserve better. Please do respond to me if you have questions or would like to share your own experiences.

Alice Herb is a retired attorney, journalist, and bioethics consultant. Having reached the age of 85+, she’s more than ready to share her experiences and opinions with agebuzz readers. Want to comment on something she’s said? She welcomes your feedback at [email protected].

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