Last month, Oregon Senator Ron Wyden (D-OR) held a pain management forum featuring a panel of various players in end of life care. Panelists included Linda Hay Crawford, National Vice President Federal and State Government Relations of the American Cancer Society; Harold Sox, M.D., president of the American College of Physicians American Society of Internal Medicine; Bruce Levy, M.D., J.D., Texas State Board of Medical Examiners; Kenneth Kizer, M.D., Under Secretary for Health at the U.S. Department of Veterans Affairs (VA); and Cal Knowlton, Ph.D., past president of the American Pharmaceutical Association. Although each panelist had a different perspective on pain management, all shared a common desire to reduce suffering at the end of life.
Linda Hay Crawford described her late husband’s remarkable five-year struggle with cancer, which led to his death in March 1996. Crawford noted, "There was not one moment during the course of his disease that he was not experiencing or handicapped by pain. Even between his treatments, his pain persisted, and at times increased, especially with the progression of his bone cancer." Her husband, Victor, was a successful attorney and Maryland politician who managed to practice law despite the pain. In January 1996, he collapsed in court, and began a five-week hospitalization from which he never returned home.
The suffering that Mr. Crawford endured while hospitalized -- in which he was transferred from a cancer center to the ICU -- is a sad commentary on the state of pain management in many facilities around the country. His widow told the forum, "[My husband] screamed in pain most of the rest of his life. Very few of the physicians had any sensitivity to the pain or their responsibility in managing that pain. . . . The ICU doctors did not prescribe any pain medication because they said it was not needed."
Victor Crawford’s final words to his wife were, "If I knew this is the way I would die, I would have died years ago of my lung or liver cancer, and would have died an easier death."
This tragedy set the stage for panelists to describe the need for improved pain management, better end-of-life care, and increased attention to the needs of dying patients and their loved ones.
Panelists and Senator Wyden agreed:
The ACP-ASIM made several recommendations, including the need to develop quality indicators to measure how effectively patients’ pain is being treated and to increase research on pain management and create strategies to quickly move research into practice.
Panelists and the audience discussed what role the government might play in improving pain management. Many present recommended that the DEA not further regulate the prescription of opioids. Senator Wyden commented, "It doesn’t make sense to use the strategies you use against cocaine cartels to regulate the way doctors prescribe drugs. It is unacceptable to have DEA policies which keep pharmacists from feeling secure in providing anti-pain medication."
Audience members suggested that the federal government’s role in this arena include: increasing public expectations that pain not be a normal part of illness and dying; educating medical professionals, patients, and their families through Medicare; penalizing medical practitioners for undertreating or not treating pain; and broadening the availability of hospice, hospice consults, and palliative care.
ABCD thanks Senator Wyden for holding this forum and putting pain management at the forefront for the next Congress. We urge our members to contact their members of Congress and voice support for legislation that addresses the real issues in improving pain management for all patients.
Katherine McGoldrick is an intern in ABCD’s Office of Policy and Development.