"7 Medical Mysteries That Could Save Your Life in Today’s Healthcare Maze"

On a blistering Sunday morning following an 8-mile training run, I was sweaty, winding down, 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 medical horror 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 as a woman shares intimate health concerns for which her local care team offered no plan.

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

And that's how I found myself in the middle of the street getting briefed on a complex medical crisis — one that her actual doctors hadn't returned a call about. This wasn't a one-off. It's becoming the norm.

In today's complex healthcare system, you can follow the rules, pay your premiums, show up for your appointments, be a compliant patient, fill your prescriptions, get vaccinated — and still be completely on your own. The phone rings, no one answers at the doctor's office. The portal pings, no one replies. A specialist treats the organ, not the person. And you fall through the cracks in a broken system.

Our broken healthcare system treats us as a case or a chart or a broken bone or a heart arrhythmia. But we're not our diagnosis or a number on an electronic medical record or the patient in room 302. We are neighbors, sisters, parents, and golfing buddies. I've heard their stories, just like this one on a quiet residential street through an open car window, and you need to hear them too — because if the healthcare system hasn't abandoned you yet, it probably will.

Let me tell you about typical medical mysteries — real stories from my experience — and how you can solve yours.

1. The case of the missing doctor

The mom in the passenger seat was obviously uncomfortable, racked with uncertainty about a treatment plan for her recurring urinary tract infections and uncomfortable abdominal pain, 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 likely conditions using a symptom tracker at major medical center portals such as MayoClinic and WebMD, not at unknown websites.

I advised the daughter to bring a recorder (on her smartphone) 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.

The lesson: You cannot be the passive partner in your healthcare. Hold the main provider accountable, ask questions, demand answers, and don't be afraid to get a second opinion.

2. The what-do-we-do-now mystery

Here's another example. While I was attending to our rambunctious golden retrievers on a recent walk through the nearby park, a fellow dog owner with a barky Yorkie, who found out I was a doctor, had the need to share the story of her sister, a woman in her forties who was losing weight and having night sweats. 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 guidelines, but when the treatments were not working, the family was befuddled about options. This storyteller is a nurse, so she has a 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.

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

The lesson: We can no longer rely on the system to be there for us. We need to be proactive, preemptive, and follow established preventive guidelines because, if we do become ill, we cannot expect the cavalry to ride over the hill and save us. Get smart about your illness.

We can whine, we can complain, we can pine for the good old days and hope Dr. Welby shows up to save the day, 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: a relative, a friend, a friend's medical savvy friend.

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. Who is your Uncle Lennie in healthcare? A niece who is a nurse?

3. Who's in charge here and other medical whodunits

From the what-we-do-not-know-can-kill-us files: A friend emailed me about her father, a middle-aged man in a distant city who required chest surgery to remove fluid. A chest tube was inserted and there were no complications. However, because of administrative oversight, poor communication among the internal medicine and surgical services, physical therapy was not brought to the bedside. For 12 days, the patient was essentially sedentary in bed.

During that time he lost tremendous muscle mass and strength, was barely able to get out of bed to go to the bathroom. Due to his immobility a blood clot formed in his lower legs, these went into the lungs. Blood thinners were recommended per protocol, and that caused bleeding to the bladder.

The healthcare complex dropped the ball here. How would patients know to ask about mobilization after surgery?

I advised the daughter to investigate and find the ringmaster physician for her father. Work with that doctor for every decision. Someone has to oversee the circus, and you, as patient or patient advocate, should hold that person's feet to the fire.

The lesson: Be proactive. Who is in charge of the patient's care? Don't wait for a phone call or message from an associate of the doctor or keep checking on the patient portal. Call, email, show up at the office. Insist on knowing the plan, who does what, and be at the bedside to make sure it all happens. That is healthcare today.

4. The hunt for the medical expert

I spoke to a senior citizens group on end-of-life issues recently. These were educated, motivated individuals, yet no one really had a clear understanding about Medicare services, how long they are available, or the criteria for continuing physical therapy. And what happens if a patient leaves the hospital and then is readmitted? What is Medicare's role here? No one understood their coverage, the gap policies, what if anything is covered, or when private pay would kick in.

The websites for Medicare and Medicaid can be unusually difficult to navigate and understand. Try to find a presentation in the community on these programs, staged by experts who are often insurance vendors who sell Medicare Supplement policies. Frankly, these people are quite knowledgeable. Or go to the business office in the hospital, nursing home, or assisted living facility and find the executive (the business or financial manager) who knows this world well. Ask your questions in light of your situation.

A hospital social worker is often a bright light during a dark situation, and these experts can be a wealth of information about facilities, coverage, and qualifications.

The lesson: Speak up. Ask questions of the right people. Seek them out. Here's medicine's dirty little secret: The doctors don't know.

5. Murder on the Medical Express: Who done it?

I was on the golf course with two players whom I did not know well. One shared this story of his 90-year-old mother with advanced colon cancer who was doing poorly despite aggressive radiation, surgery, and chemotherapy. The family was presented with information on palliative care and hospice by the social worker. They had no idea there were comfort measures available and that hospice was paid for by Medicare.

The other golfer told me about his business partner who was admitted to the hospital with a heart attack. All of a sudden, there were cardiologists managing the heart disease and side effects from the cardiac treatment such as numbness and tingling of the hands and feet. He said the partner didn't know where to turn. The cardiologists were treating the heart, but who deals with the side effects?

I advised him that a palliative specialist could help manage the side effects. He missed the tee-off on the next hole because he was calling his partner to advise him to have the cardiologists refer him to palliative care.

The lesson: Specialists do their thing. They don't treat the big picture. It's not wrong for a patient to demand a referral to someone to handle a different condition or complication.

6. The case even Sherlock Holmes couldn't untangle

Sometimes patients feel abandoned by their doctors. A woman came up to me at a presentation recently and described her husband's condition. He had dementia, and he fell and was hospitalized with a broken hip. The family had no idea what was going to happen when the hospital sent him home. They could not care for him at home. The primary care doctor was not seeing the husband in the hospital. He was being seen by a hospitalist, who is the doctor hired by the hospital to take care of patients there.

Before discharge, family should understand what facilities are available in the community for rehab, how long rehab would work and who determines when the rehab should be discontinued. Typically physical therapy is administered for 45 minutes to an hour several days a week. The demented patient may not remember the care. The family needs to know who shows up and when.

The lesson: Ask questions of the hospitalist (find out who that doctor is), the social worker in the hospital, and your primary care doctor. What is the best course of action here? A rehab facility, and which one, or not? Who pays (a question for the business office at the facility)? What can we expect from rehab? Should we consider a nursing home, or hospice care, and where?

Without the ability to get answers from an alphabet soup of healthcare providers, you may find yourself abandoned in a confusing maelstrom of medical jargon, white-coated providers who don't have answers, and a system that isn't designed with the patient's needs first (and I refer not so subtly to the insurance companies that often call the shots about treatment and coverage).

7. The killing of the impatient patient

The patient, a 75-year-old man with liver cancer was gowned, an IV started, and he was waiting for his slot in the operating room where another liver biopsy was to be taken. His wife, my friend, asked, "What type of port will you be putting in?"

"Port?" the prep nurse asked. "We don't have orders here to insert a port." The port was to administer chemo drugs for treatment later. As long as the patient was going to be under sedation, it made sense to do the second procedure at the same time.

The system ground to a halt, the OR team standing down, and the nurse tried calling the doctor's office to get the order to insert the port. More delays, the doctor was unreachable, his office unable to confirm the order after checking his notes.

Every patient needs an advocate at the bedside during any procedure to oversee that what the patient expected was carried out. A spouse, a daughter or son, best friend, bridge partner, someone to be there.

The lesson: It's no mystery that the medical system makes mistakes. In this case, the patient had to come back a week later for the port to be placed. More waste, more inconvenience, more trauma to the patient. More paperwork. More prep. More endless waiting. Bring your advocate with you and go over your expectations with the medical team at every encounter with the system.

The operant word in healthcare today is proactive. Speak up. Ask. Find the right expert. Ask the appropriate questions. Be an advocate for yourself and your loved ones. And when something goes wrong, sometimes you don't need a doctor at all, but an attorney.

Edward T. Creagan, MD, FAAHPM, stepped away from active clinical practice at the Mayo Clinic after forty winters in Rochester, Minnesota. Patients still contact him or find him on many of his daily runs or dog walks. He wins marathons in his age bracket, over eighty, because the competition is either dead or having hip replacements. He is the author of two books on healthcare and end of life.