Now What Do I Do?

When the Healthcare System Lets You Down

Several years ago a promising baseball pitcher in his twenties was destined for stardom.  He had a fast ball hovering around 100 miles an hour and was essentially unhittable by even seasoned major league ballplayers. He then developed an obscure pain in the wrist of his pitching hand. He went through the usual acrobatics of physical therapy and sought multiple surgical and orthopedic opinions, but at no point was there a clear diagnosis.

His career was in jeopardy.

He was not comfortable to sit by and have his career unravel. He was not at peace with the advice of the team physicians.

So he launched an extensive “investigation” and identified an orthopedic surgical group with an interest in this type of injury. Routine scans were essentially normal, but one surgeon had the idea of gently tilting the wrist for an unusual X-ray view of the painful area. 

That was the Rosetta Stone, the key that unlocked the kingdom of diagnosis. Medical mystery solved.

A bone and ligament were frayed and this was only picked up on the special X-rays. Surgery was done, the patient became a YouTube celebrity, and his pitching career has continued. 

Bear with me. I’m getting to the point.

On a blistering Sunday morning following an eight-mile training run for an upcoming race, I was winding down my workout and heading for home when a car slowly came up on my left side. The car stopped and an elderly woman whom I did not know had a look of desperation as she shared the following story with me through her open car window. 

I realized her daughter, our neighbor whom I did know, was driving. Picture the scene. Car stopped in the middle of a residential street and a woman shared intimate health concerns for which there was no plan from her local care team. 

I suspect the daughter said, "Oh, look, Mom, there's Ed. He's a doctor. Let's ask him."

The mom was obviously uncomfortable, racked with uncertainty about a treatment plan, and could not see her way clear as to how to continue through a byzantine electronic medical environment. Phone calls to physicians and clinics were not returned. Obscure text messages referred the patient to the patient portal of her healthcare delivery system. She didn’t understand the medical messages on her message board.

She asked me, “Now what do I do?”

I advised the patient and her daughter to make an appointment with the primary provider and bring three written questions about the illness and the treatment plan. Not a laundry list. The big questions. I advised them to read up on the condition at major medical center portals such as MayoClinic.com and WebMD.com, not at unknown websites.

I advised the daughter to bring a recorder (on phone) and to take written notes. And a final suggestion: I advised they might get a second opinion from a separate medical practice if they were not comfortable with the first providers.

Let's ask Ed.

Here’s another example. While I was attending to our rambunctious golden retrievers on a recent walk through the neighborhood, a neighbor whom I did not know very well had the need to share the story of her sister.

Her beloved sister was a woman in her forties who was losing weight, was having night sweats, and something serious was going on. She was diagnosed with an unusual form of lymph node cancer. 

The initial treatments were fairly standardized from national treatment organizations, but when the treatments were not working, the family was befuddled about options. My neighbor had a credentialed medical background and took upon herself a “Mission of Mercy” to learn all that she could about her sister’s condition, how to access the appropriate experts, and what tests, scans, and evaluation should be expected.

My neighbor shared with me that her sister now seemed to be cancer-free with an excellent prognosis. But if our neighbor had not been proactive and took charge of the patient’s care, they would not have known how to navigate the system.

What is the take-home message? What is the bottom line from these chance encounters? 

We can whine, we can complain, we can pine for the good old days, but we need to understand how to work the room, how to pull the levers, how to manipulate the hydraulics to get the medical care that we need and deserve.

And if we do not know where to begin, how to start the journey, we need to access those individuals who have faced serious problems and find out how they worked through the system.

What are the perils and the pitfalls that we need to understand? 

If your car is making a funny noise under the hood, you keep searching for a mechanic who has seen this before and who can fix it. If the first repair shop is too busy, doesn’t pay attention, and asks you to wait “over there,” you might go down the road to another shop.

You might perform a Google search to find somewhere close by or watch a YouTube video, or call your uncle Lennie who knows about cars.

Do I have to connect the dots?

At the end of the day, you as the patient need to take charge, to be in power, and to find experts who can explain in terms you understand.

Image from Shutterstock.

Dr. Edward Creagan is the author of two books on being an empowered patient: How Not to Be My Patient and Farewell: Vital End-of-Life Questions with Candid Answers from a Leading Palliative and Hospice Physician, available on Amazon.