Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 16.3 Teach Patients to Monitor Symptoms and Participate in Treatment Planning

For some patients and families, learning how to manage the disease at home offers a sense of control and can improve confidence in being able to manage problems. Breakthrough Series teams use daily phone calls to keep up with patients or remind them to take medications. Patients telephone with reports of symptom changes and are told what to do.

Ongoing training programs for patients and families allow them to feel confident in their ability to remain at home; support sessions with other patients and families reduce the isolation families often feel when caring for a very sick loved one.

Participants in Kaiser Bellflower's program weigh themselves daily and track other symptoms. If their weight changes (a sign that fluids are being retained), or they notice other troubling symptoms, patients call the case manager who works to stabilize symptoms.

Patients learn to recognize symptoms of heart failure, especially whether it is a "forward failure" or a "backward failure." Symptoms of forward failure, caused by an inadequate amount of blood being pumped to supply muscle activity, include weakness, lightheadedness, and fatigue. Backward failure, in which extra fluid cannot be pumped away, include lung congestion, shortness of breath, and swelling of the legs.

When patients first enroll in the program at Kaiser Bellflower, they are expected to call in daily for two weeks. Patients also receive an information package that contains detailed instructions about his or her treatment planning and daily routines, as well as relevant reading material.

Patients learn to report weakness and fatigue, especially in terms of how they are breathing. Difficulty breathing when lying down or at rest, waking at night unable to breathe, or feeling short of breath are all signs that something is wrong.

The routine is very simple. Each day they weigh themselves and report by telephone, answering these questions:

The team has also tried out monthly group meetings of patients and a monthly newsletter. Group meetings give patients and family caregivers a chance to learn from and support one another. Presentations by health care professionals keep patients up-to-date on symptom management, emotional and psychosocial concerns, medications, and treatment concerns.

The team from the Palliative CareCenter of the North Shore used phone calls to help patients make the transition from daily nursing visits to daily phone calls. Along the way, patients kept a daily journal recording symptoms and medications. When the Palliative CareCenter first began its program, patients required several daily in-home nursing visits. During the first eight weeks of enrollment, one patient received 39 phone calls, many of these to remind her to take her medication. In that period, the patient, who had been requiring hospitalization every few days, had no exacerbation of symptoms.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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