No one told me that along with 50 comes a more intimate relationship with today’s healthcare. Between my aging father, college age daughter, my husband and me, I have recently gotten up-close-and-personal with how the system works (or doesn’t work).
There are 2 points that strike me the most:

(1) It is not just hype, you really do have to own your own healthcare. Taking your doctors word for it is not ok anymore. When a doctor in the John’s Hopkins network recently said to me, “I am just an employee here” I knew healthcare had gone down a deadly path where doctors no longer feel in charge or in command, of diagnosis, prognosis and treatment. They are helpless to the machine of big business and insurance.

(2) Knowledge is power – Being a thinker, a strategist, a problem solver, I have the skills needed to navigate today’s healthcare, albeit a little clunky while I get up-to-speed. What about people who don’t have the skills, the time or the energy to figure this out? That is where the mistakes are made. That is when miscommunications happen. That is where precious time and resources are lost… and not all diagnosis can afford those losses.

Fortunately for me, prior to now, my family has not needed doctors beyond the routine check-up or maintenance, so it surprised me to really grasp how things have changed.

Most doctors have joined some type of group practice as a way of managing insurance claims and other red tape that prevented them from focusing on medical care. The trade off is that they no longer control (or seem to care about) the overall patient experience. These groups have become so large that now the support has become its own big industry. Follow the money. Giant insurance companies, without medical knowledge, dictate everything by deciding what will or will not be paid for all patients who use insurance. The medical administration industry takes that information and creates systems and care programs based, not around what would provide the best outcome for the patient, but rather what will create optimal revenue for them.

So, the doctors have now become glorified data entry operators as they key in the information provided by the patient. This data produces a list of tests that can be performed to help with diagnosis. This data approach may work well for patients with textbook diseases, but I am not convinced all diseases can read textbooks. The other challenge is that the tests are performed by another big business that have their own algorithms creating policy and the two organizations often clash. For added complexity, the insurance company and plan you pay for demands their own set of policies and procedures.

The good news for me is that, knock-on-wood, our reasons for so many healthcare experiences in recent months have not resulted in any catastrophic conclusions and overall, we are healthy. I am sharing my recent experiences in hopes they provide you some food-for-thought the next time you find yourself navigating the system.

“You can’t have that test
When I heard the doctor say those words to my father, it left me with lots of questions, but my father didn’t think twice about it. “OK”, was his response as he waited for what steps would be next.

The reported problem is chronic constipation and significant weight loss. I am no doctor, but I would have expected a conversation about food intake, both volume and quality of calories, which after 4 visits to various doctors has yet to be a topic of conversation without my insistence, but I digress.

The system spits out an order for a colonoscopy, which at 86 years old, my father has never once had. Due to his age and frailty, the risks do not outweigh the benefits, so we decline that procedure. The doctor agrees but is still interested in seeing what might be lurking inside so, the general physician has requested imaging of my father’s full torso.

The insurance company declines the request and only approves an image of the chest. Again, I am no doctor but if the patient is constipated, I am thinking it is likely not the chest causing the problem. 6 weeks later, my father returns with another 8 lbs lost and the doctor tries again with the same result. The doctor follows the book and is not able to order the full imaging needed to rule in or out any obstructions in his bowels – he tells my father “You can’t have that test”.

By this point, I have figured out that phrase means that insurance will not cover it based on the doctor’s entries into the system. It did not mean that he is too old, or it is too invasive, or it won’t show anything. It also doesn’t mean that a more creative thinking physician would fail in the same way. It simply means insurance will not approve it for payment to this physician. Beyond the lunacy of the entire experience, it concerns me that at no time does the question get asked, “Do you want to pay out of pocket for it?” For my father, the answer is no – not just because he can’t afford it but also because at 86 he already decided that the results will not change the course of treatment – but for someone with a will to live, they may have resources or be willing to fight for them if needed. Patients should know when insurance or big business is dictating a different path than the one a trained physician recommends and should be given the opportunity to decide the course of action based on his personal resources.

We are now on our 4th doctor and awaiting MRI approval, which lends me content for the next story in the journey through healthcare hell. This GI Specialist is located closer to my house (my father lives a couple hours drive from me) and at our follow up visit he prescribes an MRI of the colon region. I have had reason to visit a local MRI facility recently, so I call them first. They ask me if the MRI is with or without contrast, but the script does not indicate that, so the scheduler tells me to contact the referring physician to clarify. I do as directed and call back 10 minutes later at which points she asks about my insurance. Turns out they take Medicare and they take that carrier, but they do not take that carrier’s Medicare, so we get turned away.

I then contact the insurance provider (another painful experience I won’t bore you with but suffice it to say it was a long wait and no sign of customer service on the line) and they give me the numbers of 2 more MRI centers in my area. The first is associated with John’s Hopkins so I think positive until I call, and they tell me the earliest time is in 3 weeks. Aside from the fact that my father cannot stay with me for 3 weeks, people who need MRI’s are likely suffering from something significant and 3 weeks can mean life or death. Our friends in Canada often talk about long waits for procedures and I am seeing that our healthcare has the same challenges, despite what I hear from my politicians.

The 2nd organization is also unable to provide me with any appointments in the same week, so I decide to help him find one closer to his home. When I contact that organization, I am asked if it is with or without contrast. When I say with contrast, she tells me that her organization’s policy is to not allow one with contrast unless you have already had one without contrast. I poke a bit more to really understand and I ask, “Can he have with and without in the same session?”, the reply is “Yes”. This proves it is not about conserving costs by not always jumping to the one with contrast (that one requires the patient to consume a liquid that acts as a dye in the system to create contrast between the fluid and the tissue, organs and bones). My brain spins like a top. So, my doctor, who went to med school and has been practicing for decades, requests 1 test that he needs but a company looking to cash in says he will have to have 2 tests. On top of that, I am delayed in being able to make the appointment because the script I have does not indicate with or without or both so the clerk on the call will not even schedule it. Mind you, she is not looking at the piece of paper in my hand, but I wasn’t quick enough to understand what I was up against to fake it until I could get the proper script in advance of the appointment. So, it is late in the day and the offices are closed. Another 24 hours lost in medical hell.

Stay tuned for my next chapter in the saga…