ABCD Exchange : May 2000 : Upfront - Focusing on Heart Failure

Focusing on Heart Failure : Urgent Health Policy Issues for Medicare Reform and Clinical Practice
by Janet Heald Forlini, J.D

Better care for heart failure patients will require major changes in Medicare policy and service delivery patterns of healthcare providers.

At a meeting on quality of care for cardiovascular disease and stroke, Joanne Lynn, M.D., and Harlan Krumholz, M.D. led a discussion of policy issues surrounding heart failure. ABCD , the American Heart Association and the American College of Cardiology cosponsored the meeting.

Recent research and quality improvement efforts show that patients with congestive heart failure (CHF) do not consistently have access to services essential for preventing terrifying and unnecessary exacerbations. Because heart disease is a leading cause of death among Americans, knowing how to care for those suffering from it is critical to improving end-of-life care.

Participants considered these questions:

• is CHF defined and what symptoms/prognoses are common?

• What would quality care be for the average CHF patient?

• What barriers prevent us from providing these services for most CHF patients?

• What are elements of an ideal program?

• What is the most appropriate locus for change?

Pharmacological advances coupled with increased patient understanding of the illness and its treatment are essential to living well. Self-management techniques, such as daily recording of body weight to check for fluid retention, are important. In fact, one audience participant-a cardiologist from Miami Beach-commented that he tells patients to take their scales along when traveling. He advises patients that before eating in restaurants they should tell waiters: "I don't want to die while in your restaurant-please leave the salt out of my food."

Errors in diagnosis may be more common with CHF than with other chronic illnesses. Accurately diagnosing CHF is a challenge because it does not involve a specific exam or test. Data show that many patients diagnosed with CHF do not actually have the disease, while many others who should be treated for it are not.

Even when a person is correctly diagnosed with CHF, predicting the person's course of decline or improvement can be difficult. Data from SUPPORT (Study to Understand the Prognoses and Preferences for Outcomes and Risks of Treatment) showed that when physicians were queried about patient prognosis (on what later turned out to be the day before that patient's death), physicians gave the average CHF patient a 50 percent chance to live two more months. Yet, society has built a very different model of what it means to be a person facing the end of life with a chronic and eventually fatal illness. Many people think that all patients will have a "dying phase," in which the person clearly has just weeks or days to live. SUPPORT proved that this kind of prognostication might be possible for patients with lung cancer, in which the end of life is much more easily predicted. However, CHF patients often have several exacerbations of disease followed by marked improvement, before eventually succumbing to the disease.

Participants also discussed the elements necessary to providing good care for these patients. Suggestions included:

1. Giving patients access to a disease management program coordinated by nurse practitioners with direct care based on evidence-based guidelines.

2. Conducting adequate initial evaluations for all patients.

3. Educating patients to improve self-management.

4. Assisting with appropriate advance care planning.

5. Focusing on continuity of care and coordination with patient's primary care physician.

1. The American Heart Association offer provider education in chronic disease management.

2. Medicare should pay for prescription drugs as well as other non-pharmacological treatments to be used by patients in the home.

3. Congress realign the Medicare Hospice Benefit to establish eligibility for hospice by severity of disease (not prognosis).

4. The Health Care Financing Administration (HCFA) use contracting and risk adjustment payments to encourage quality improvement.

5. Congress and HCFA institute a universal patient identifier, creating a process for feedback and recordkeeping.

Participants agreed that some services have been proven effective in improving the function and quality of life for patients with CHF. Although such services are widely accepted as helpful and important, the health care system and providers have no incentive to use them-leaving patients and families hamstrung in the face of skewed system priorities. Many participants commented that they had at one time provided services similar to those described as ideal, but were forced to stop because of financial constraints. Participants concluded that better care for heart failure patients will require major changes in Medicare policy and service delivery patterns of healthcare providers.

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