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The Missing Link in Chronic Care Coordination

The Medicare Trust Fund is not going to be saved by care coordination, at least not in the way it is currently understood. That is the conclusion of a four-year government-funded study of 15 programs enrolling over 18,000 chronic care patients. The study, published last month in the Journal of the American Medical Association, was designed to see if programs paid a monthly fee to provide outreach, health education and support to chronically ill patients improved their quality of care and reduced Medicare expenditures. Only one program reduced hospitalizations significantly and none achieved net savings overall; and one actually increased hospitalization and costs.

We are not surprised. Put this study together with another that appeared earlier this year in the Archives of Internal Medicine, in which 75 percent of patients discharged from a Chicago hospital could not name any of the physicians involved in their care, and the countless personal stories of poorly coordinated hospital discharges, and you begin to understand the dimensions of the problem.

The most vulnerable and costly patients are those with serious chronic health conditions like congestive heart failure, stroke, and diabetes. They often have several medical problems, and take many medications daily. Hospitalization itself, which usually follows a crisis or trauma, takes a toll, especially on elderly patients. Patients with dementia are particularly vulnerable: all study groups included patients with dementia, ranging from less than 1 percent to 33 percent of the total. Hospitalization itself often exacerbates dementia.

To be successful, programs aimed at assuring a smooth transition from hospital to home must involve the patient’s family caregivers–relatives, friends, and neighbors–who provide or manage their increasingly complex care. These caregivers are the missing or typically overlooked links in chronic care, and yet they provide essential day-to-day monitoring and support.

In fact, none of the interventions in the care coordination study explicitly focused on family training and involvement, even those with high percentages of patients with dementia where family members were probably the respondents to the surveyor’s questions. Is it so surprising, then, that the study protocols did not improve patient adherence to medications, exercise, and diet? Were these patients simply told what to do? Education alone is a notably ineffective way of changing behavior.

Professional assessment of patient needs, standardized education, and phone follow-up can be important tools, but on their own they change little, as the study showed. Certainly the patient’s family physician is a critical factor in providing information and support, but these programs were not particularly successful in engaging them in care coordination.

There is a better way. Successful transitional care programs work with patients and their family caregivers to develop care plans that they can live with, and there is professional support and follow-up through the critical period following hospitalization. These programs achieve better outcomes, improve patient and family satisfaction, prevent unnecessary rehospitalization, and even save money. Interventions are not limited to phone calls but also include home visits. One home visit can provide more information than a dozen phone checklists.

Each of us approaches transitions in a different way. The University of Colorado’s Care Transitions Intervention uses a “transition coach” to impart care coordination-specific self-management skills and tools and follows the patient and family caregivers during handoffs across care settings. The University of Pennsylvania’s Transitional Care Model offers comprehensive discharge planning and home follow-up by a Master’s level nurse. The United Hospital Fund’s Next Step in Care provides family caregivers and health care providers with guides to hospital discharge, medication management, and other navigation tools. Other programs are evolving. The methods vary but the principles of meeting the patient and family where they are–literally and metaphorically–are the same.

These days you have to be very sick to be admitted to a hospital. If that happens, you as a patient or family caregiver should expect to be involved in the post-hospital plan and to have all the information, education, and support you need to make it work. That’s not too much to ask.

Eric Coleman, MD, is a professor of medicine in the Divisions of Health Care Policy and Research and Geriatric Medicine at the University of Colorado Denver. Carol Levine is director of the Families and Health Care Project at the United Hospital Fund in New York. Mary Naylor, PhD, RN, is Marion Ware Professor in Gerontology and director of the New Courtland Center for Transition in Health at the University of  Pennsylvania School of Nursing.

Published on: March 27, 2009
Published in: Caregiving

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