Improving Care for Those Who Need It Most

"It’s too far.” That’s what Faustino Gazan, a 47-year-old man living in a walk-up apartment in the Washington Heights neighborhood of New York City, says of his journey three times a week to a dialysis center 50 blocks away. For Gazan, who uses a wheelchair, struggling down the stairs and traveling to the Central Park Dialysis Center is a part of his life with diabetes, hypertension, kidney disease, and a genetic condition called Prader-Willi syndrome that causes weak muscle tone, overeating, and developmental delays, among other problems.

Gazan can be described as a “high-need, high-cost” patient, which includes people with complex, long-term needs like Gazan, as well as the frail elderly, those with behavioral health needs, and others. Many such patients have trouble performing basic activities, such as walking or dressing, requiring not just medical care but other types of services that promote independence. “High-need, high-cost patients live with multiple chronic conditions, functional limitations, or are at an advanced stage of illness,” explains Melinda Abrams, vice president for Health Care Delivery System Reform at The Commonwealth Fund.

Researchers looking to improve health care in the U.S. are focusing on high-need, high-cost patients—both because they need the most help and because they have the biggest impact on national health spending. Today, 5 percent of the U.S. population accounts for 50 percent of the nation’s health care costs, and 10 percent accounts for 65 percent of total spending.

Testing New Ways of Providing Care

Patients with such complex and pressing needs may require extra help to stick to their medication schedule or find stable housing—supports not traditionally covered by health insurance. For the past two years, Gazan has received regular at-home help from Maurice Hall of the Visiting Nurse Service of New York. Hall helps Gazan take his medications on time and care for his foot ulcer, among other things. When Gazan, whose care is covered by Medicaid, did not have such assistance, he became depressed and had to have half of his left foot amputated because he didn’t comply with his physician’s care recommendations.

Fortunately, more patients may start to receive the type of personalized care Hall offers, particularly as more hospitals and doctors participate in programs that hold them accountable for their patients’ health outcomes and total costs, and reward them if their patients’ health improves. For example, some health professionals now join together in accountable care organizations, or ACOs, agreeing to be held responsible for the outcomes and costs of designated patient groups. They typically receive a global, per-patient payment, which they can use to pay for nonmedical services to help keep patients healthy.

The spread of ACOs and other risk-based payment models means there are more care management programs available to help high-need, high-cost patients. The Visiting Nurse Service of New York (VNSNY) has a care management program, for example, for which patients are referred by hospitals, physicians, and community partners and then selected based on a home assessment. Patients are assigned a nurse care manager, as well as other clinical and nonclinical staff, who work together as a team to address the patient’s goals and provide the support necessary to decrease the need for emergency department use and hospitalizations.

As new approaches to improving care for high-need, high-cost patients are tested, researchers are learning more about what works and what doesn’t. A review of studies by Commonwealth Fund researcher Douglas McCarthy and colleagues identified common features of several successful care management programs.

Identifying patients most likely to benefit from specialized care management and who are willing to participate in their own care is a critical first step for health care organizations, McCarthy says, because “it’s very intensive to provide wraparound services, so intensive you can only provide them to the patients at greatest risk for poor outcomes. To the degree you can get that right, you’re more likely to have a return on your investment.”

Successful programs like the VNSNY’s also use interdisciplinary teams of health professionals, including care managers to coordinate care with patients and their families and clinicians. And they make care managers available to interact with patients directly, whether in the hospital or doctor’s office. Such programs also use coaching and education to help motivate patients to set personal goals for their care, often leveraging health IT to enable remote patient monitoring or to inform the care team if the patient makes an emergency visit to the hospital.

Changing Payment, Changing Culture

McCarthy points out that the impact of many of these new programs has been modest thus far, given that most are pilots designed to test an idea and involve relatively small groups of people. And by providing nonmedical services, these programs are “working against the headwinds of fee-for-service payment,” he says. In spite of the growth of value-based care, insurers still mostly pay health professionals per visit or procedure, meaning that team meetings among providers, the care manager’s salary, or email communications with a patient’s caregiver, are not covered (even though such care management can promote better care).

Beyond the financial barriers, there is a need to change the way that health care is delivered. “Doctors are doing their best, but they work in a production-oriented system that focuses on one patient at a time,” McCarthy says. Under new care management approaches, physicians are being asked to practice population-based care, which means looking at the entire spectrum of their patients’ needs and risks. Health care leaders need to be convinced of the value of investing in training and tools to help their staff segment the patient population and tailor treatment accordingly.

Researcher Chad Boult, who conducted a review of chronic care management programs for the Institute of Medicine, emphasizes that “adopting a new care model successfully requires significant changes in the local health care culture, practice, and workflow. Facilitating the spread of a new model requires not only scientific evidence of its effectiveness, but also the creation of incentives for changing professionals’ behaviors and training for professionals to acquire the requisite new clinical skills.” He adds that “the adoption process needs to be conducted within a quality improvement environment in which people understand that adjustments may be necessary throughout the first few years to get the new model to work well.”

While rewiring the U.S. health care delivery system to improve care for high-cost, high-need patients will take time and resources, McCarthy says we are headed in the right direction. “We’re getting more and more evidence about what works, and more supportive payment approaches. In time, the marketplace just won’t reward uncoordinated care.”

And ultimately, The Commonwealth Fund’s Melinda Abrams says, such changes will benefit everyone who uses the health system—not just the sickest patients.

In the meantime, Faustino Gazan and Maurice Hall will continue to navigate a complex care system and do the best they can to make Gazan’s quality of life all it can be. Hopefully more and more high-need, high-cost patients will soon see the benefits of coordinated medical, social, and behavioral care that meets their personal goals.