My first cousin died suddenly in his home last month. More like a brother to me, Steve was a 68-year-old avid saltwater fisherman who had been healthy all his life — you’d be far more likely to find him angling for bonefish on the flats of the Florida Keys than anywhere near a doctor’s office. Steve’s death was likely due to a complication from a heart attack he suffered a week earlier. His death illustrates the story of a health care system that is increasingly failing to meet its basic responsibilities.

After experiencing chest pain while playing hockey — his other lifelong passion — Steve went to a local emergency department. It turned out that he was having a heart attack. The cardiology team quickly intervened and placed a stent in his heart to reopen a blocked artery. Two days later, the doctors sent him home from the cardiac intensive care unit with nothing more than a list of medications he had never heard of and a recommendation that he follow up with an outpatient cardiologist.

No one gave him any help choosing said cardiologist. So I spent the last week of Steve’s life 1,200 miles away, trying to help him find one who would accept his Medicare Advantage plan. Many didn’t.

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For those of you who have navigated a health issue for your parents, yourself, or your children, this story probably sounds familiar. Our health care system has become more and more impersonal. Challenges, including reaching someone on the other end of the phone who can help us navigate through evermore complicated and larger systems, feel ubiquitous and daunting.

This is the direct result of sweeping changes the health care system has undergone over the last two decades. Large hospital and health care systems have responded to insurance reform and uncertainty about future revenue by growing quickly through acquisitions of smaller hospitals and community practices. In fact, most people nowadays find that their doctors’ offices are part of large hospital-based health systems or large multispecialty provider groups.

This consolidation can have an upside. Patients can benefit from access to top-notch specialists within their insurance networks and better data sharing between primary and specialty physicians using the same electronic health record. But it isn’t surprising that many individuals face significant challenges navigating these new, complex systems when it comes to things like scheduling appointments or figuring out what to do when someone they love is discharged from the hospital following a heart attack.

One of the most significant problems health systems face in the wake of this market shift is that frontline providers are starting to burn out from the volume of patients in their waiting rooms. Doctors and nurse practitioners want to do the right thing, but often lack the interdisciplinary teams of social workers, nurse coordinators, and navigators that can best help people manage their health at home. Even when those integrated teams exist, they often lack the simplest tools and technology that could help them best identify who needs help the most.

The visionary health care systems that end up vanquishing these enormous challenges will craft integrated care teams and leverage them with the best technology to proactively assist patients, both inside and outside of hospitals and doctors’ offices. These systems will also find ways to leverage the enormous amount of data that providers collect in electronic health records to quickly identify patients who need extra attention, and to ensure helpful communication across care teams of clinicians, social workers, and navigators. I also believe that the next generation of top health systems will be the ones to discover how to successfully reach patients beyond the hospital or doctor’s office — whether by telephone, video, or in-home visits.

Health systems that have tried to do some or all of these things have had mixed experiences. Yet successful models are emerging.

I was part of a 10-hospital collaborative project led by the Children’s Hospital Association that sought to change the way children’s hospitals engage families around the coordination of their children’s care, especially children with complex medical needs. Through Coordinating All Resources Effectively (CARE) — funded by a three-year award from the Center for Medicare and Medicaid Innovation — these hospitals, including Children’s Hospital of Philadelphia, where I work, collaborated with patient families, primary care physicians, managed care organizations, and state Medicaid programs to implement innovative models of coordinated care. The Children’s Hospital Association recently released results showing that CARE significantly reduced hospital days (by 32 percent) and emergency department discharges (by 26 percent) among 8,000 children who participated in the CARE project. That translated into a 2.6 percent reduction in Medicaid spending in the first full year of operation. In other words, CARE not only decreased the impact of chronic disease on families but saved money, too.

I believe that the lessons learned from CARE translate to adults, and that the adult health care system, which is far more broken than our system for children, could see even greater gains from these types of approaches.

There’s no question that the doctor-patient relationship is sick in some ways. But I directly witnessed how a disciplined approach to coordination through CARE could improve my own relationship with my patients. Our intervention included building integrated teams of social workers, care navigators, nurses, and physicians — and supporting them with technology — to help them quickly identify patients who needed help after a hospitalization, transportation to an upcoming appointment, or access to community services to address challenges at home.

These changes drove my team to see the value of engaging patients outside of the office so we could spend more quality time addressing their pressing needs and health issues when they came to see me.

The secret sauce wasn’t the medications or the procedures: It was the improved handoffs and communication across teams in the hospital, as well as with families at home. The downstream effects were not simply on the children, but also on the caregivers, who experienced reduced stress and were able to return to more normal routines of taking care of their patients, themselves, and their families, this time with some degree of support.

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The solutions to repairing the doctor-patient relationship are within our grasp. But it will take leadership from health systems and insurance companies to finance upfront the integrated care teams we know can work. For people like Steve and the families that grapple with helping loved ones access the care they desperately need, there is too much at stake not to.

I don’t know whether prompt follow-up and a check-in could have saved Steve, but my gut tells me it would have. The reality is that when he was feeling unusually tired on the morning he died, he had no health care provider to call short of an ambulance.

He will be sorely missed, and his journey with our health care system represents a missed opportunity that we can no longer choose to ignore.

Tight lines, Steve.

David Rubin, M.D., is the director of Population Health Innovation and PolicyLab at Children’s Hospital of Philadelphia.

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  • The industry is much too corrupt to do much more than these limited initiatives. these rarities have been misreported and led to a highly misinformed public. None of this is applicable in anyh more than a limited short term situation. The profitability is not there. This kind of misreporting leads the public to believe falsely that there are clever people working on these problems.
    They have been marketing this idea for over a decade, corporations like United Healthcare, cashed in on this market by hiring people with barely a high school diploma, and calling them “Care Coordinators.” It was a kind of subsidized welfare to work program. It did nothing to improve outcomes, but it did increase employment numbers in an undeserved locality. These are the gimmicks the Insurers are peddling as people die. In one case competing hospitals sent sick children out of state rather than coordinate pediatric cardiac care. In Post Fact American only corporate profits count, that is why this kind of thing is deliberately deceptive.

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