Chronic patients struggle with their illnesses and healthcare that is “great at providing acute care and terrible at managing the complexities of long-term care.”
Being a patient: Part-time work
In the New York Times bestseller The Invisible Kingdom. Reimagining Chronic Illness, Meghan O’Rourke tells her own story of living with an undiagnosed disease.
Once she entered the kingdom of the sick, she also crossed a threshold of the kingdom of healthcare designed to quickly fix sick organs with modern medicines and surgeries—a fragmented system that is a chaotic set of silos within medical specialties.
A system where it’s the patient who has to connect doctors with each other.
“I spent a day and a half per month just moving paper and electronic records from doctor to doctor. I spent an additional three days traveling to doctor’s appointments, during which I often waited for an hour or more to be seen for ten minutes. Putting it together, I realized that each month I was losing close to five out of twenty workdays—nearly a quarter of my work time,” describes O’Rourke. “The bigger problem, though, is that all these hoops made it much more likely that I would just give up or fail to follow through. At times I did.”
According to Jack Cochran, a former executive director of the Permanente Federation, the patients who don’t have the energy or the means to persevere in connecting their disconnected doctors “fall through the cracks, and they suffer in their own world, alone.”
Modern healthcare works well when a health issue can be healed quickly. Ten minutes is enough to prescribe a drug or refer the patient to another specialist or surgery. Such a system follows one procedure that has to fit all: examination → diagnosis → treatment → billing.
“Doctors prefer acute care,” says David M. Cutler, a Harvard economist specializing in healthcare reform. “It’s easier to work with a patient in a mechanistic way, to anesthetize someone, say, in order to fix a broken bone.” However, chronic illness requires doctors to work with patients on behavioral modifications—it’s slow and frustrating work. Doctors don’t like to manage; they like to fix.
Next one, please.
“The health system works perfectly when the patient’s problem can be solved on the spot by prescribing a drug or performing an operation. In any other case, patients have to rely on themselves.”
—Meghan O’Rourke, author of the book “The Invisible Kingdom. Reimagining Chronic Illness”
Individuals with chronic or rare diseases do not have a problem that can be solved quickly. Instead, they require long-term health management—physical, psychological, and emotional support. Unfortunately, what they get is far from that.
The problem is not the doctors—they are part of the sick system, following its rules. The mess starts in the roots: medical education focused on studying diseases like 100 years ago, a work culture where decisions have to be made quickly, a reimbursement system which requires concrete diagnosis, not doubts and questions.
In such a system, medical specialties get locked in silos, and—not surprisingly—doctors don’t always want to work together. In between, there is the frustrated patient.
“Healthcare is divided into silos, with each specialist operating individually, keeping their own records […]. No one is in charge of coordinating care. Silos fail to support the whole patient,” according to Crochan.
Although healthcare has become more digitalized and patients can now access their medical records electronically, the system remains ill-equipped. “It’s technologically proficient but emotionally deficient,” according to O’Rourke.
The patient’s path? It’s a labyrinth
A chronic patient gets pushed out into healthcare’s margins.
Seeking alternatives to conventional, chaotic and incomprehensible medicine, patients find themselves in a trap of conflicting opinions, dubious advice on the Internet, and dietary supplements of unknown origin and efficacy.
O’Rourke describes her long way to diagnosis paved with dozens of appointments, pseudo-scientific treatments, and financial problems arising from private visits to doctors who didn’t help her but found time to listen. It was a lonely journey full of desperation and resignation, a quest to find out what was wrong, recover and enjoy life again.
Chronic patients collide with every single flaw in the health system. No one can even comprehend why they’ve just had to visit yet another specialist who’s registered the same diagnosis or why they’ve been referred for the same lab tests they did last week. They wander between enclaves of care, trying to connect single dots on the map of opinions and treatments to finally discover a hidden map with two points: you are here and future you, healthy.
Those who proactively try to tread their own path get slapped on the other cheek by the system. Empowered patients are too often labeled as “non-compliant” or “troublemakers.”
Simply connecting the silos will not make the data flow
If you believe that digitalization and AI can make healthcare human again—as Eric Topol hopes—or reboot an ailing system—as Tom Lawry claims—you might be wrong.
Over the decades, this system has grown in layers of legislative barriers and bureaucratic moats and it won’t fall so easily. Although the walls of paper-based healthcare are disappearing and doctors are gaining access to electronic medical records, these silos are doing just as well in 2023.
So far, neither the most innovative startups and disruptive technologies nor the top tech giants have dared to challenge the old culture. Those who did were eaten for breakfast, over and over.
There is no doubt that digitalization in healthcare will expand. But so far, not in order to reshape the sector or to shift from fee-for-service toward value-based healthcare; nor to remove the existing absurdities so patients do not have to spend 25 percent of their time on disease administration, unnecessary visits and part-time work as a connector between unconnected parts of the system.
Unlearning the way healthcare is delivered today will take years. Only then the potential for digitization will be released from the invisible bonds created as early as education and as late as the reimbursement system.
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