Discussing end-of-life care 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. That’s why I chaired a hearing in the Senate’s Special Committee on Aging on Sept. 24 to look into how we can best honor Americans’ wishes at the end of life.
Currently, too few Americans have completed some type of advance directive. Even among terminally ill patients, fewer than half have an advance directive included in their medical record. And roughly 70 percent of physicians whose patients have advance directives do not even know about them – a fundamental barrier to honoring patients’ wishes. So our hearing gathered legal, medical and health policy experts to address two broad policy questions: how can we make sure that Americans carefully think about, communicate and document how they want to be treated at the end of life, and how do we help translate documented wishes into a plan of care with a provider?
The witnesses shared important insights from their experiences with end-of-life care. Dr. Joan Teno, associate director of the Center for Gerontology and Health Care Research at Brown University’s Medical School, stressed that planned cuts to Medicare payments could prevent many seniors from receiving high-quality hospice care. Instead, she said, “I would recommend expanding the role of hospice in nursing homes.” Dr. Teno urged the Committee to support the Medicare Hospice Protection Act, a bill I’ve co-sponsored that would reverse these harmful and misguided cuts.
The Committee also heard from Joe O’Connor of the American Bar Association, who explained the benefits of the Physicians Orders for Life-Sustaining Treatment (POLST) program. In this innovative approach, O’Connor said, a “patient’s wishes are incorporated into doctor’s orders that are recorded on a unique, visible form.” POLST forms help translate the legalese of an advance directive or the vague details of a family conversation into medical orders, which must be followed in any care setting. It is a promising innovation, currently in use in eight states, and one I hope can be expanded.
Of course, to be sure that an individual’s wishes will be followed at the end of life, physicians need to understand how to provide the care each person wants – and how best to discuss treatment plans with patients and their families. Dr. Diane Meier, director of the Center to Advance Palliative Care, explained how little attention is paid to end-of-life care in medical education. “During nine years of medical education after college, I did not receive a single lecture on pain management, treatment of other symptoms like shortness of breath or nausea, or how to communicate bad news and discuss goals of care with patients and their families,” she said. Better training and specialization in palliative care will improve care at the end of life.
My Senate colleagues and I plan to continue this important discussion in the halls of Congress, particularly as we address comprehensive health care reform next year. But I hope it is also a conversation that will continue at kitchen tables and in doctors’ offices throughout Rhode Island and the country. Though uncomfortable today, these conversations will ensure that our loved ones receive the care they truly want in their final days. Sometimes, that’s the greatest gift we can give them.
Sheldon Whitehouse represents Rhode Island in the United States Senate and is a member of the Senate Special Committee on Aging.
