ABCD Exchange : October - November 1999 : President's Letter - Collaboration on Advanced Chronic Heart & Lung Failure

Upfront - Utah Partnership on End of Life
QuickScan - News in Brief
Breakthrough Series - Rapid Cycle Change
On the Hill - Hearing on EOL Care
Resources - Video Series for Caregivers

Learning From the Collaboration on Advanced Chronic Heart and Lung Failure
by Joanne Lynn, MD

We recently held the third learning session in our collaborative Breakthrough Series to Improve Care for Patients with Advanced Heart or Lung Disease [for more details, see Laurent Adler’s article]. I am impressed with the extraordinary way in which this work generates insights and information quickly and effectively. When the Learning Session last met, teams were caring for more than 1,000 patients, and more than 100 had died in their care. We now continue to measure the ongoing performance of up to a dozen teams. Already, much has been learned.

First, our patients have an astounding array of challenging problems. The “usual” patient is a 78-year-old male, living alone with little income; his diagnoses are a combination of CHF, COPD, diabetes, and coronary artery disease. Most take about eight daily medicines. Some one in six patients has active cancer, many have hearing and vision deficits, and only a few have had much education. This real population is quite different from the usual patients recruited to study CHF and COPD, who are younger and have no other very threatening illness. Undoubtedly, our population needs services beyond the usual routine. Many teams talked about ways to simplify drug regimens, make instructions intelligible, and how to make compromises that lead to workable treatment plans.

Teams noted that, near death, most patients did not suffer from severe dyspnea (severe shortness of breath). Many received opioids for chronic shortness of breath, but only a few needed more substantial doses just before dying.

A few teams added special features to their programs. The Hospice of Winston-Salem now promises patients to get a skilled nurse and medications to the home within one hour of a report of “trouble breathing” - and these nurses have actually made it within half-an-hour most of the time. Teams developed self-management education programs for patients and caregivers, another approach that is yielding promising results.

Obviously, a group of reform-minded care provider teams are remarkably effective in helping one another to make real change and also are astonishingly effective in learning new insights quickly. The Collaborative process can really be an engine for learning - while reforming.

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This content is provided by Americans for Better Care of the Dying. For more information, visit www.abcd-caring.org.