Supportive Voice Vol. 11 No. 1 Winter 2006
Chairperson's Corner
by Dan O'Brien
Dan O'Brien is vice president, ethics, Ascension Health, St. Louis.
Earlier this summer, on July 14, Dame Cicely Saunders, the famous founder of the modern hospice movement, died at age 87. We owe a great debt of gratitude to this courageous, visionary woman. The movement that she started continues to change for the better the way we experience death and dying in America.
Saunders opened St. Christopher's hospice in Great Britain in 1967. The first American hospice, modeled after St. Christopher's, opened in Connecticut in 1974. From there, the movement spread steadily across the United States, fueled largely by a deep frustration among patients, families, and professionals about the "medicalization" of death and dying.
In 1982, the Medicare hospice benefit was initiated by Congress as part of TEFRA, the Tax Equity and Fiscal Responsibility Act. Utilization increased dramatically. By 1985, there were roughly 1,500 hospice programs in the United States caring for 160,000 people. In 2003, some 710,000 people died while receiving hospice care-roughly one-third of all anticipated deaths in the United States. Today, there are nearly 3,300 hospice programs caring for 950,000 people a year. But average length-of-stay (ALoS) has steadily declined. In 1983, the first year of the new Medicare benefit, the ALoS for hospice was 70 days. In 2002 the ALoS was 57 days with 35 percent of patients dying within one week of admission.
We have come a long way, but much change is still needed. In 2003, the Centers for Medicare and Medicaid Services (CMS) instituted new changes to encourage use of the Medicare hospice benefit; and the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 continues to enhance the value of the benefit. Yet, despite all the progress made in trying to correlate care with diagnosis and prognosis, the proportion of Medicare dollars spent on people in the last year of life has remained what it was 20 years ago—approximately 25 percent.
One obstacle to good end-of-life care is the practice of waiting until patients are thought to be near the end of their lives before shifting the primary goals of care to managing their physical, emotional, and spiritual pain and symptoms. This practice cannot be attributed to any single factor. The point is, we have a great opportunity to change the culture—both the medical culture and the larger culture-by moving palliative care interventions further "upstream" when people are first diagnosed with life-threatening illness. Some possible ways to help bring about this change might include but are not limited to:
We have an opportunity to redefine hospice and palliative care not as "last resorts" or as "giving up hope." In fact, there is always room for hope, even when there is no room for a cure. Hope is related to seeing a future, to having expectations fulfilled. Patients should be able to expect from us effective pain management, emotional and spiritual support, and to be comforted and cared for by compassionate and skillful people who are committed to honoring their inherent human dignity.
It is a mission imperative. It is a quality imperative. It is an ethical imperative. Thank you, Dame Saunders, for reminding us of this.