WASHINGTON – Questions surrounding patient care at the end of life are among the most difficult families face. State laws on the subject vary widely, health care providers are sometimes uncertain about their responsibilities, and all too often, people simply don’t know the choices available to them.
To identify barriers to end-of-life decision-making, and raise awareness about the need for solutions, U.S. Senator Sheldon Whitehouse (D-RI) chaired a hearing today before the Senate Special Committee on Aging to hear from medical and legal experts about the ways in which patients are documenting their final wishes, and the role of health care providers in these decisions.
“This is a discussion that makes many people uncomfortable – understandably so – but anyone who has been there through the death of a loved one knows how important it can be,” said Whitehouse.
Witnesses at the hearing spoke about ways to encourage more Americans to document and communicate how they want to be treated at the end of life. Currently, only between 18 and 30 percent of Americans have completed some type of advance directive, according to a 2007 review by the RAND Corporation. Acutely ill individuals complete advance directives at only slightly higher rates: 35 percent of dialysis patients and 32 percent of COPD patients. Even among terminally ill patients, fewer than 50 percent have an advance directive included in their medical record.
Many people fail to complete advance directives because they believe they are difficult to execute or will be ignored, or think that completing a form is unnecessary because a loved one will know what to do. RAND’s study, however, found that patients’ family members who were acting as health care surrogates were not always correct in predicting a loved one’s wishes regarding treatment, even if the surrogate had discussed the patient’s advance directive with him or her, or had assisted in its preparation.
The hearing also addressed how to help ensure that health care providers know about, and honor, patients’ documented wishes about their care at the end of life. RAND found that roughly 70 percent of physicians whose patients have advance directives do not know about them, and that even after reviewing an advance directive, physicians sometimes made errors in treatment.
Witnesses at the hearing included Joan Curran, Chief of Government Relations and External Affairs, Gundersen Lutheran Medical Center, who shared her personal experiences with end-of-life decision-making as a medical proxy for her father and a young woman with terminal cancer. Joseph O’Connor, Chair of the American Bar Association’s Commission on Law and Aging, addressed the legal environment in which end-of-life care giving decisions are made, particularly with respect to the variation in state laws governing end-of-life care.
Dr. Diane Meier, Director of Center to Advance Palliative Care and of the Lilian and Benjamin Hertzberg Palliative Care Institute and a professor of Geriatrics, Internal Medicine, and Medical Ethics at Mount Sinai School of Medicine, discussed end-of-life decision-making and palliative care options in acute care environments, and explain her research regarding the role medical culture and medical education play in affecting the quality of end-of-life care.
Dr. Joan Teno, who serves as Associate Director of the Center for Gerontology and Health Care Research, a professor of Community Health and Medicine at Brown University, and Associate Medical Director of Home and Hospice Care of Rhode Island offered her perspective as a health services researcher, a hospice medical director, and an internist specializing in palliative care.
Oklahoma Attorney General W. Drew Edmondson described his efforts to raise awareness about end-of-life decision-making in Oklahoma and detailed the options available to states looking to improve end-of-life care. Dr. Patricia Bomba, Vice President and Medical Director of Geriatrics at Excellus BlueCross BlueShield, also testified; Dr. Bomba is New York State’s representative on the National Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Task Force, a multistate collaborative to designed to improve the quality of care people receive at the end of life.
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