'On Our Own Terms' -- One Year Later

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Journal Article -- August 2001

Symposium on End-of-Life Care

Gerald H. Holman, MD
Guest editor

The hospice movement began in this country more than 25 years ago; however, only in the last decade has the interest in improving care at the end of life grown. This interest has been fueled in part by the public debate over physician-assisted suicide and by the dismal results of the SUPPORT study, which revealed that nearly 50% of the patients who died in the hospital experienced moderate-to-severe pain at least half the time (1).

Hospice and palliative care professionals, national organizations, foundations, Congress, and society at large are actively exploring ways to improve the manner in which Americans experience care at the end of life (2).

In September 2000, the Public Broadcasting Service (PBS) aired a four-part series entitled "On Our Own Terms." This remarkable television event, conceived and coordinated by Bill and Judith Moyers, explored ways in which our lives can be improved as we face death. The program highlighted palliative care units, in-patient and home hospice programs, and true life experiences, including the poignant story of Dr William Bartholome, a pediatric ethicist. Dr Bartholome shared his most intimate thoughts and feelings during the 4 years that his esophageal cancer progressed to his death. Tellingly, he said, "To die without hospice is like having surgery without anesthesia."

Hospice and palliative care is best defined as comprehensive, whole-person and family interdisciplinary care, focusing primarily on promoting the quality of life of patients living with terminal illnesses by assuring self-determined life closure, physical comfort, psychosocial and spiritual support, coordination of care, and bereavement services.

Many people in our state and in America still die without hospice care. Many are referred much too late to benefit fully from hospice care, even though it is virtually paid in full by the Hospice Medicare Benefit for those older than 65 years. Sadly, the median length of stay in hospice continues to fall and now is often less than 7 to 10 days. The Medicare, Medicaid, and SCHIP Benefits Improvement and Protection Act of 2000 requires the Medicare Payment Advisory Commission (MedPAC) "to conduct a study to examine the factors … that delay entry into a hospice program. …" Hopefully, this will lead to more timely referrals.

Academic medicine has lagged behind in providing educational programs in end-of-life care (3). Research in improving care for those facing progressive, incurable illness is just now emerging. Education for the practicing physician has only recently been stressed by the American Medical Association's Education for Physicians in End-of-Life Care (EPEC) program. A statewide program based on the EPEC model is now developing in Texas.

Despite these initiatives, many people still die in pain, alone, and without emotional support. End-of-life care for the disadvantaged, minorities, the frail elderly, children, persons with AIDS, and those living in rural areas or in nursing facilities often remains less than optimal.

Members of the general public have repeatedly expressed what they expect in their final weeks or months of life. A National Hospice Foundation study (4) revealed that people wish to: 

  • Die at home with their family members present,
  • Participate in decisions about what care they receive and how they wish to spend their final months,
  • Have their spiritual needs addressed,
  • Experience quality pain control, and
  • Not be a burden, financial or otherwise, on their families.

Immediately following the PBS program, national organizations such as the National Hospice and Palliative Care Organization and the American Hospice Foundation reported a surge of interest, with many questions about hospice care and other end-of-life issues on their respective Web sites. In January 2001, a follow-up meeting of community coalitions, formed in part as the vanguard of the Moyers series, reported that public awareness of end-of-life issues appeared to have increased as a result of the program. An increase in professional awareness, however, remains difficult to assess. Perhaps the January 2001 requirement by the Joint Commission on Accreditation of Healthcare Organizations that pain be assessed as a fifth vital sign will stimulate physicians to become more aware of the need to improve end-of-life care for their patients.

In the next few years, we will care for an increased number of "aging baby boomers," all of whom will, at some not-too-distant time, require end-of-life care. Will we be prepared to help them achieve the kind of dying they want?

This issue of Texas Medicine examines how best to deliver competent and compassionate end-of-life care ("dying well"[5]). To do so will require a new medical paradigm not yet fully achieved, including: 

  • Self-determined life closure,
  • A safe and comfortable dying,
  • Effective grieving,
  • Interdisciplinary team care, and
  • Universal access.

I hope these articles provide the opportunity for personal reflection and action toward achieving quality care for our patients, our parents, and indeed, ourselves.

References  

  1. A controlled trial to improve care for seriously ill hospitalized patients: the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA. 1995;274:1591-1598.
  2. Council on Scientific Affairs. Good care of the dying patient. JAMA. 1996;275:474-478.
  3. Billings JA, Block S. Palliative care in undergraduate medical education. JAMA. 1997;278:733-743.
  4. National Hospice Foundation 1999 Report on Research on Americans' Beliefs, Concerns, and Understanding About Care During Life's Final Stages. Alexandria, Virginia: National Hospice Foundation ; 1999. Available at: www.nhpco.org.
  5. Byock I. Dying Well: Peace and Possibilities at the End of Life. New York, NY: Riverhead Books; 1997.

Dr Holman is vice president, medical education, Crown of Texas Hospice, Amarillo and Conroe, Texas; and clinical professor of internal medicine and pediatrics, Texas Tech University Health Sciences Center School of Medicine at Amarillo.

August 2001 Texas Medicine Contents
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