Why We Need Care Coordination for People With Multiple Chronic Illnesses

The life of a person with multiple chronic illnesses is often that of a medical nomad. They wander from diagnosis to diagnosis and from doctor to doctor, hoping to alleviate the never-ending multitude of aches and pains. Insurance companies often don’t know what to do with these people. Everyone wants to put them into a bucket. Buckets are simple. We know what to do with people in Bucket A and we know what to do with people in Bucket B. But what do we do with people whose conditions sprawl across Buckets A, D, F, L, W, Z and buckets we have no name for? When we don’t have easy solutions, doctors and insurance companies often look away, hoping these patients move on and leave them alone. Some will write off their maladies as psychosomatic. There, we have a diagnosis. Next.

My friend Ellen (name changed to protect her identity) has mixed connective tissue disease. It is an autoimmune disease that manifests in a variety of ways. When it manifests as rheumatoid arthritis, Ellen goes to her rheumatologist. When it’s gastroparesis, it’s off to the gastroenterologist, and so on. Through it all, Ellen must constantly educate her physicians about what mixed connective tissue disease is. There’s no wise, caring primary care physician choreographing Ellen’s illness journey because such a person doesn’t seem to exist. Care coordination is MIA. Ellen is her own navigator, CEO, quarterback, whatever you want to call it and it requires massive amounts of smarts and persistence on her part. Having to spend already limited energy filling in as your own primary care physician isn’t a good thing. What, you didn’t go to medical school?

It seems obvious that people with poorly understood, multi-faceted diseases need a doctor, nurse practitioner, or physician assistant that can function as a medical quarterback, who can create a treatment playbook and manage the execution of it. Unfortunately, this is much more easily said than done, making it such a rare bird.

What about today’s primary care physicians? Well, for one, most don’t have the knowledge to take on this role. They may have one or two patients with each of these unusual conditions and they don’t have the time to get up to speed on each, so they make a semi-educated guess and pass them off to a specialist.

Zooming out to the larger picture, primary care is in crisis. Richard Joseph, M.D., and Sohan Japa, M.D., senior residents in primary care internal medicine at Boston’s famed Brigham and Women’s Hospital, cite this stunning statistic: “Approximately 80 percent of internal medicine residents, including nearly two-thirds of those who specifically chose primary care tracks, do not plan to pursue careers in primary care.”

Among the many reasons why primary care residents are steering clear of practicing primary care, a fundamental one given by Drs. Joseph and Japa is particularly poignant.

“The day-to-day practice of primary care feels daunting and unsatisfying. Primary care physicians need an estimated 18-hour workday to complete their various responsibilities. The much-maligned electronic health record inhibits PCPs from fully connecting with patients and creating the very patient-doctor relationships that once brought meaning to the work — the relationships that lured them into this type of medicine. Instead, our interactions with patients now feel transactional.”

No wonder concierge medicine’s appeal is growing among PCPs. On the surface, it would appear that concierge physicians – those doctors to whom you pay an annual fee to get white-glove treatment – would be the ideal care quarterbacks.

I’m not so sure. My wife went to a concierge physician several years ago and had a very disappointing experience. Despite promising otherwise, this particular doctor lacked knowledge about the multiple autoimmune diseases that affect my wife and had no inclination whatsoever to learn about them. My wife would have to tell Dr. Concierge, “I need this appointment with this specialist.” Wow, that’s some serious added value! So my wife ended up back where she’d started minus a decent chunk of change.

Maybe there are some amazing concierge docs out there who are worth the money. Speaking of money, the challenge of being able to afford concierge medicine is not a minor one. With yearly fees typically starting at $1,500 and climbing significantly from there, these services are simply not an option for a sizable number of people.

How can medical professionals coordinate care for patients with complex chronic illnesses? Let me know what you think.