Breaux said that the committee hopes "to make the general public more aware of how people spend their final days and months—how they are treated, what treatment is available, and what is not. We hope the committee can bring [this issue] to the attention of the general public."
Panelists Shelly Twiford, from Nebraska, and Peggy Gulotta, from Louisiana, described the stark contrast in how dying patients are treated. Twiford’s family was never told that her mother was dying—indeed, on her mother’s final day, a physical therapist came to her hospital room. By then, Twiford’s mother was in a coma. In contrast, Gulotta’s husband, who had Alzheimer’s, had an advance directive and was referred to hospice, albeit very late in the course of his disease.
Committee members responded to the testimony by describing their own experience with a dying family member or friend—a common response to end-of-life discussions. Committee members in attendance included Larry Craig (R-ID), Susan Collins (R-ME), Conrad Burns (R-MT) and Blanche Lincoln (D-AR).
A panel of experts on end-of-life care testified: Joanne Lynn, M.D., ABCD president and director of the Center to Improve Care of the Dying-RAND; James Tulsky, M.D., associate director, Duke Institute on Care at the End of Life; Linda Todd, R.N., director of the Hospice of Siouxland; Richard Rosenquist, M.D., member of the Department of Veterans Affairs National Pain Management Strategy Committee; and Linda Emanuel, M.D., Ph.D., principal of the American Medical Association EPEC project (Education for Physician on End-of-Life Care). Each panelist described the situation in his or her particular field of expertise, as well as various programs and research projects. All shared common themes on what must be done to improve care of the dying.
Lynn told the committee that Congress can "take leadership in creating a climate for reform." Among the steps Congress could take, Lynn said, would be "to encourage innovation in providing services, and insight as to what will work. Congress should evaluate policies, existing and proposed, by their effects on those with serious chronic illness and their caregivers."
She noted that government agencies have largely ignored care of the dying. "There are no measures [for end-of-life care] in HEDIS. It is not a priority for the CDC, NIH, HCFA, or HRSA. We have a pervasive problem of not caring for the dying. What we need to learn is how to get from here to there—we need something like the Ryan White Act for end-of-life care."
Duke University’s Dr. James Tulsky described his work assessing how physicians discuss end-of-life issues with patients, and ways to improve communication skills. "We found that conversations about advance directives averaged less than six minutes each and physicians spoke two-thirds of the time." Duke’s newly established Institute on Care at the End of Life focuses on interdisciplinary scholarship, teaching, and public outreach.
Linda Todd, representing the National Hospice and Palliative Care Organization, described the problems experienced by hospices nationwide—late patient referrals and short lengths of stay. "My program is struggling financially and my staff is drained from frequent crisis management of short-term patients,"she said. "As a local provider, I do not have the resources or the ability to implement change as effectively as a national effort can provide."
Dr. Richard Rosenquist, who directs the Pain Management Clinic at the VA Medical Center in Iowa City, described the successful, nationwide programs initiated by the Department of Veterans Affairs for patients with serious, chronic illness. He focused on the VA’s "Pain As a 5th Vital Sign," which requires pain to be assessed routinely for all VA in-patients. Rosenquist said, "Since the root of this problem exists largely as an issue of education, it is critical that patients be informed of their right to pain relief and their fears of living and dying with severe suffering due to pain be allayed."
The final panelist, Dr. Linda Emanuel, described the AMA’s large program to educate physicians on end-of-life care. EPEC has trained 600 physicians, each of whom is likely to train 100 other physicians. Emanuel said, "People should not have to choose between fighting to live and letting entirely go. Palliative care, and hospice care when done as it seeks to be done, involves providing relief of suffering as an integral part of care, whether cure is the primary or secondary goal." She added, "We must integrate the relief of suffering into all healthcare today."
Senators and panelists spoke of the urgent need to change public policy and the health care system: In a decade, the first wave of Baby Boomers will turn 65, and begin to experience the chronic diseases associated with aging and dying. The current system cannot begin to meet their needs. "We have about ten years," Lynn said. "We won’t fix the system with a new drug or by understanding the genetic code—and if we miss our chance, we will have to learn to live with awful things."; Senator Blanche Lincoln (D-AR) underscored that urgency by noting that it can take from six to eight years to develop and pass important legislation.
Senator Grassley closed the hearing by listing the six themes that people need at the end of life: doctors who are honest with them; relief of pain; continuous care; respect for personal preferences; full information about their care; and compassionate treatment. In September, the Committee will hear testimony from the Government Accounting Office on the Medicare hospice benefit.
For complete copies of testimony before the Senate Special Committee on Aging, visit its website at www.senate.gov/~aging/hr54.htm.
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