Modern medicine has extended the life expectancies of many terminally ill Americans. In turn, prolonging lives can mean incurring more intensive care and the associated costs.
In 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives. Quality end-of-life care requires balancing the input of doctors, families and patients themselves. And making crucial end-of-life decisions can take physical and emotional tolls on patients and their loved ones.
How should we help people manage end-of-life care choices to maximize individual well-being and minimize social cost?
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Meet the Challenge Team
The Challenge Team Members are leaders in their fields and reflect multi-disciplinary, passionate and thoughtful perspectives for the Challenge they represent.
Challenge Team members participate in the discussion held by the Great Challenges community, and will be creating responses to questions submitted by the community on the discussion tab.
Jennie Chin Hansen is CEO of the American Geriatrics Society (AGS) and recent past President of AARP. The AGS is the nations leading membership organization of geriatrics healthcare professionals, whose shared mission is to improve the health, independence and quality of life of older people.
Hansen spent nearly 25 years with On Lok, Inc., a nonprofit family of organizations providing integrated, globally financed and comprehensive primary, acute, chronic and end-of-life community-based services in San Francisco. The On Lok prototype became the 1997 federal Program of All Inclusive Care to the Elderly (PACE) and now operates in nearly 30 states.
In May 2010, she completed her term as President and board member of AARP during the national debate over health care reform.
She has served as a federal commissioner of the Medicare Payment Advisory Commission (MedPAC) and Institute of Medicine (IOM) member on the Robert Wood Johnson Initiative on the Future of Nursing. She currently serves as a board member of the SCAN Foundation, National Academy of Social Insurance and the Institute for Healthcare Improvement (IHI). Additionally, she serves on the steering committee for the Coalition to Transform Advanced Care (C-TAC).
Her academic background includes a B.S. in Nursing as well as an honorary doctorate from Boston College, and a M.S. from the University of California, San Francisco.
Like many others, my experience with care at the end of life is both personal and professional. Over the course of three decades, I was closely involved in the illness and dying process of my first husband, parents, and brother.
I had the privilege of working as a healthcare professional with frail elders for nearly 25 years. I have advocated on behalf of consumers as an advisor on Medicare policy and as president of AARP during health care reform. I currently head the American Geriatrics Society. Our members are committed health professionals working to ensure dignity, quality and choice when dealing with the complexities of later life, including the end of life.
Barbara practiced as a nurse and physician assistant for 25 years before beginning a career in law and health policy. Since then she has devoted her professional life to individual choice and empowerment in health care. Barbara’s professional experience includes work as a private attorney, counsel to the Oregon State Senate, a managed care executive, and President of Compassion In Dying from 1996-2004. Barbara was Chief Petitioner for the Oregon Death with Dignity Act. She is a champion for enabling individuals with the freedom to consider a complete range of choices and be full participants in their health care decisions. As President of Compassion and Choices, Barbara oversees advocacy, development, legislative and client support.
My perspective and advocacy is rooted in what we learn from these terminally ill individuals. The end of life is a defining experience for both patient and loved ones. There is no one “right” way to die. But if death is imminent, most people dearly hope it honors their life and avoids needless suffering.
Paul Malley is President of Aging with Dignity, a national non-profit organization based in Tallahassee, Florida. AWD created and distributes the Five Wishes advance directive. Five Wishes, dubbed the “living will with a heart and soul,” is the most popular document used by Americans to make health care decisions before a serious illness. More than 18 million copies of Five Wishes have been distributed around the world, and the document is available in 26 languages.
Malley has also guided the efforts of several aging advocacy groups to improve policy on advance care planning and patient rights. He was a delegate to the 2005 White House Conference on Aging, an event held once every ten years to shape public policy on issues related to aging.
Malley and the work of Aging with Dignity have been featured in hundreds of stories in the national news media, including USA Today, Wall Street Journal, New York Times, Newsweek, Time and Consumer Reports, as well as on the CBS, NBC and ABC-TV evening news programs and on CNN and MSNBC cable TV shows. Malley and AWD are respected voices on the subjects of advance care planning, aging issues and improving end-of-life care.
During my 14 years at Aging with Dignity I’ve been inspired by the real life stories shared with me from people living with a serious illness, as well as those caring for them – their family, close friends, and dedicated healthcare providers. Partnering with more than 30,000 organizations (hospitals, hospices, places of worship, and employers), we’ve helped more than 18 million people around the world. No one wants to feel that they are a burden or just along for the ride on a healthcare “conveyor belt.” My personal experience at my grandfather’s bedside taught me the importance of actions as simple as holding someone’s hand, and that the desire to have our God-given human dignity respected is a common thread uniting us all.
Richard Payne, M.D. is the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University. He is a graduate of Yale College and Harvard Medical School, and did post graduate training in internal medicine (Peter Bent Brigham Hospital), neurology (New York Hospital), neuro-oncology, pain management and palliative care (Memorial Sloan-Kettering Cancer Center).
Dr. Payne is an internationally-known expert in the areas of pain relief, palliative care, oncology and neurology. Prior to his appointment at Duke, Dr. Payne was Chief of Pain and Symptom Management Sections, Dept. of Neurology at M.D. Anderson Cancer Center (1992-1998) in Houston, TX, and from 1998-2004 he led the Pain and Palliative Care Service at Memorial Sloan Kettering Cancer Center in New York City, where he held the Anne Burnett Tandy Chair in Neurology. He currently serves on the board of directors of the National Coalition of Cancer Survivors (NCCS) and the Hastings Center (Bioethics). He has served on numerous federal panels, including the NIH and the Institute of Medicine (IOM). He is a past president of the American Pain Society and has published extensively in the areas of pain management, palliative medicine and ethics.
As a physician caring for persons with neurological diseases and cancer, I learned early in my career that I could not cure all my patients. I also learned that I could still be an effective healer, if I was competent in providing symptom management, in communication with my patients and willing to be fully present in their illness journeys. I have also built comprehensive community-based palliative care programs for medically underserved populations, because all members of the human family deserve compassionate caring for advanced illness, especially when entering the end of life.
Bruce Jennings is Director of Bioethics at the Center for Humans and Nature. He is also Senior Advisor and Fellow at The Hastings Center, where he served from 1991 through 1999 as Executive Director.
Mr. Jennings has served on the Board of Directors of the National Hospice and Palliative Care Organization, and the Board of Trustees of the Hospice and Palliative Care Association of New York State. He is a member of several hospital ethics committees, including NewYork-Presbyterian Hospital/Weill Cornell Medical Center. He has taught and lectured widely on bioethics and end-of-life care.
He is coauthor of the Hastings Center Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (1987); and a successor book, Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Second Expanded Edition from The Hastings Center (forthcoming 2013). In 1990, he co-founded the “Decisions Near the End of Life” program, an educational and practice change program that over the next six years was conducted in over 200 hospitals in 20 states.
Trained in political science and philosophy (Yale University, B.A. 1971 and Princeton University, M.A. 1973), he has published 25 books and numerous articles on ethical issues in hospital treatment decision-making, palliative care, and hospice.
I participated in the end-of-life care of my father who had advanced Alzheimer’s disease and was in a nursing home, and in the care of my mother, who came to live in my home where she received hospice care while she was dying of cancer. Thus I saw two very different facets of dying in America. These personal experiences have informed and deepened my academic and professional work in bioethics. Both real life and ethical theory demonstrate for me the fundamental importance of respecting the rights of patients, responding to the concerns of families, and finding practical ways to improve decision making and communication in end-of-life care.
Joan M. Teno, M.D., MS, is Professor of Health Services Policy and Practice and Associate Director of the Center for Gerontology and Health Care Research. She is a health services researcher, hospice medical director, and internist certified in Geriatrics and Palliative Medicine. Dr. Teno has served on numerous advisory panels, including the Institute of Medicine (IOM), the World Health Organization (WHO), American Bar Association and NIH study section. As a scientist and clinician, Dr. Teno has devoted her career to measuring and improving quality of end-of-life care for vulnerable populations, especially those in Nursing Homes. Dr. Teno is the creator of the Family Evaluation of Hospice Care survey that is now used by 1700 hospices across the U.S. In conjunction with the National Hospice and Palliative Care Organization, she has created a data repository of nearly 500,000 surveys that provides benchmarks and research to improve hospice care. Dr. Tenos current NIH-funded research is examining the role of the acute care hospital in decisions to insert PEG feeding tubes into nursing home residents with advanced dementia. She is the project leader of a research effort on the P01, Shaping Long Term Care in America to examine the variation and consequences of health care transitions. In 2009, she was awarded the NHPCO Distinguished Research Award and was named by the Journal of Palliative Medicine as one of the Pioneers in Palliative Medicine.
As a health services researcher, physician, and daughter, I have advocated for medical care to be patient and family centered. My frustration is that our health care “system” is more about the institution than meeting the needs of the dying patient and family. Through the creation of the Family Evaluation of Hospice Care survey and my research regarding the use of feeding tubes in persons with advanced dementia, my goal is to promote patient and family-centered care at the close of life.
Challenge Team Perspectives
We selected 10 questions out of the many submitted by our Great Challenges Community, to be addressed by each of our Team members.
See their responses and perspectives, below.
Question 3Family members of dying patients sometimes tell doctors to “Do everything.” But this request can cause confusion because there’s no treatment called “everything.” How can professionals, patients, and families have more productive and realistic conversations about treatment benefits and burdens?
Select a Question to View The Challenge Team's Responses
The following questions were submitted by the TEDMED Community and selected for further discussion. The Team Members have weighed in on each, select below to see their responses: