Listen to anyone caring for an elderly, frail, or chronically ill family member, and you'll hear a litany of worries. They'll tell you about medical specialists who don't coordinate with one another. Patients who are sent home from the hospital or rehab without adequate information about follow up care and complex medication regimes. Delays in getting patients the care they need when they need it. In short, a fragmented, disconnected system that seems unaware that it's supposed to be all about the patient.

"You're on your own," said Carol Levine, director of the families and health care project at the United Hospital Fund, who cared for her own husband for 17 years after a car accident made him a quadriplegic. "The system has gotten worse. It's more complex. There are more transitions."

What can health care reform do to address these problems? Done right, health care reform can achieve an awful lot, according to participants in a recent AARP Solutions Forum on Capitol Hill, one of a torrent of events in Washington recently about the daunting problems of family caregiving and coordinating or managing patients with multiple chronic conditions. (My colleague Paul Testa will post soon about an Alliance for Health Reform event on care coordination).

The AARP forum had two parts. First, practitioners and researchers talked about care coordination programs that work. Not programs that might work, or could work, or maybe if we're lucky would work. These are evidence-based programs that are already proven to be working, and we'll tell you more about them in a moment. In the second part, Democratic and Republican congressional health policy staff found lots of common ground on how to (and why we must ) create a system that is more efficient and more effective, one that will improve the quality of care and lower costs.

The scope of the problem is vast, and growing vaster in a nation with an aging population getting its medical care in a highly expensive inefficient manner. About 75 percent of total Medicare expenditures are for the beneficiaries with five or more chronic conditions. According to research done at Johns Hopkins and cited by the new AARP report "Chronic Care: A Call to Action for Health Reform", the average annual health spending for an adult age 50 or up with no chronic conditions was $1,425 in 2005. But for adults with five-or-more chronic conditions, it was nearly  $16,000. These families also bear high out-of-pocket costs. Plus, it's been shown that the stress, isolation and hard physical work of caregiving can end up harming the caregiver's health too.    

Mark Hayes, the top Senate Finance Committee Republican health staffer who is well-liked on both sides of the aisle, summed up why we need to act. His elderly parents live with two "direct care workers"—his sister and her husband who are both nurses. And Hayes himself was trained as a pharmacist.  And even his family, more savvy about health care than most, can't handle all the problems and crises that arise. "It's not enough," he said. "Even we get completely tied into knots every other week."

Some of the areas of agreement—at least in broad strokes, not necessarily in all details:

• Doing more to improve care as patients transition from one care setting to another (i.e hospital to rehab). This can reduce rehospitalizations and other costly interventions
• Health information technology can improve management of patients with multiple chronic conditions
• We need to do more to utilize nurses, sometimes with advanced training, to do some of the care coordination and planning.
• Supporting family caregivers is good for the health of the patients (and  can be cost effective)
• Some of the needed services and interventions are expensive, so we should target or "stratify" who needs them most.
• New payment reform models (medical homes, accountable care organizations, gainsharing, bundling etc) should be designed to encourage coordination of care services, rather than volume of procedures.
• There probably is not one right answer; we probably need a variety of approaches.

The forum also explored some of the programs that are working. Dr. Chad Boult from Johns Hopkins, a geriatrician, described "Guided Care," a primary care coordination system for older people with multiple chronic conditions. The program inserts specially trained nurses into primary care practices, each focusing on about 50 to 60 complex patients. Care includes in-home assessments, evidence-based care planning, and education for family members involved in care. "It's popular. The nurses and doctors love it," said Boult. Patients also report increased satisfaction. (Dr. Boult was also part of the New America project on Medicare sustainability, read his paper here).

Mary Naylor, PhD., a well-known nurse and researcher at Penn, described a transitional care program in which advanced practice nurses with expertise in gerontology do comprehensive hospital discharge planning for patients with multiple complex conditions. They then get followup care by telephone and home visits—and sometimes the nurse even goes with the patient to the first post-hospital visit to the doctor "to help that huge communication (gap) between the inpatient and outpatient physicians."

"The goal is to change the trajectory," Naylor said. "How to manage something nobody has ever taken the time to manage.... This is a comprehensive holistic approach." Naylor has been working primary with cognitively intact older adults (with special extra intensive help for heart failure patients) but she's now developing programs aimed that helping the cognitively-impaired as well.

As we said, chronic disease is definitely among the topics everyone is talking about in DC these days (and that's good). The American Cancer Society, the American Diabetes Association, and the American Heart Association, a few days ago issued their own joint call for health reform that includes changes that "improve the quality of care, increase and improve the delivery of preventive services, and ensure that individuals always receive care that is safe, efficient and without unnecessary interventions, tests, and treatment." In addition to being more efficient, overhauling our health care delivery and payment systems to do a better job on chronic disease "will improve the quality of life and health outcomes for millions of people."