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

Sourcebook : Improving Care for the End of Life : 16.0 Offering End-of-Life Services to Patients with Advanced Heart or Lung Failure

A good heart is better than all the heads in the world.
- E. B. Lytton

Death is unpredictable for most patients - and even more so for patients who have advanced heart and lung failure. For most, death may come from one acute event or another, tomorrow or six months from now, or longer. Indeed, because they seem to come so often to the brink of death, only to be spared, it can be hard to accept that heart or lung failure will prove fatal. And patients and families can put off making important treatment decisions or discussing hopes, fears, and wishes for their lives.

Most people suffering from chronic, severe, and life-threatening diseases could benefit from comprehensive services that give patients and caregivers the resources and the confidence to manage symptoms, avoid emergency room admissions and frequent hospitalization, and remain in familiar and comfortable settings. Some programs around the country have begun to demonstrate how services would work for congestive heart failure (CHF) patients, and it seems that similar approaches would work for patients with other organ system failures, such as chronic obstructive pulmonary disease (COPD).

Under Medicare guidelines, however, most of these patients do not meet the enrollment criteria for hospice. Unlike cancer patients, for whom there is often a clear period of decline leading to death, CHF/COPD patients ordinarily have no clear period in which they are seen as dying. Instead, they slowly decline; episodes of being relatively functional and stable are punctuated by periodic life-threatening illnesses. Episodes of illness may well be appropriately treated with hospitalization and aggressive care.

Hospices wanting to expand services to include more patients with diseases like heart failure need to be willing to provide what might seem like "aggressive" care, such as IV medication infusion and the occasional use of ER or ICU for symptom management. Doing this requires that hospices readjust their vision - and administration - to include patients who may live for many months or years with life-threatening illness.

In This Chapter

Innovative programs nationwide have begun to develop programs tailored to the specific needs of patients with advanced heart or lung failure. These programs model what others can do to improve quality of care for these patients. This chapter describes:

Innovators Need to Know

The health care community may find many barriers as it works to develop comprehensive care management programs for people with advanced heart disease. Currently, Medicare does not reimburse programs for many of the supportive services these patients require; instead, organizations rely on charity and foundation funding to develop programs for patients. While Medicare reform continues to be debated in Washington, teams around the country can apply rapid-cycle change to problems in care for patients with heart disease and begin to make real reform happen sooner, not later.

  • Comprehensive care management provides the medical and psychosocial services needed by patients with advanced heart or lung disease.
  • Heart disease patients who learn basic self-care techniques can learn to manage some of their problems at home, avoiding the symptoms that often lead to emergency room visits and repeated hospitalizations.
  • Blending the best of palliative medicine with the best of medical and disease management can help these patients enjoy a richer life during their final years.

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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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