The Transformation Project:
A New Initiative to Improve Advanced Illness Care
Center for Practical Bioethics and former AARP CEO launch effort to help patients, families and caregivers and to change the care system
Living with advanced illness in America is painful, isolating and costly. Most people spend their last days alone in hospitals and nursing homes, often in pain, despite the availability of effective pain management.
It doesn't have to be that way. Now is the time to get it right.
In the final phase of advanced illness most people want to be at home, with their friends and families, to have their physical and spiritual needs addressed and to know that those who have cared for them are not emotionally and financially devastated in the process.
The current system fails the public, health providers and society. That is why “The Transformation Project: A New Initiative to Improve Advanced Illness Care” is creating a national consortium of leading organizations and individuals to work collaboratively on this issue. The goal is to produce a system that provides quality care consistent with the patient’s goals and values.
Myra Christopher, president and CEO of the Center for Practical Bioethics, and Bill Novelli, Professor at the McDonough School of Business at Georgetown University and former CEO of AARP, are co-directors of the initiative. Judy Peres is the project’s deputy director.
“The purpose of the initiative is to develop a national, broad-based coalition to engage the American public and truly reform care for the seriously ill and dying ,” Christopher says.
“The current public debate on these issues contains highly charged rhetoric and has led to mistrust,” Novelli says. “Consequently, many people fear advanced illness, in part because of the barriers to receiving and financing palliative and advanced illness care.”
Christopher and Novelli say past attempts at remedying these problems have set the stage for this new effort.
Among other goals the program will:
- Support patient and family education so that people understand their options and what they can do to make appropriate choices.
- Mobilize coaching and consultation for patients and surrogates when confronted with difficult decisions regarding advanced illness.
- Support and promote physician and other health and social service provider education and training to change perceptions and practice.
- Use aggressive policy advocacy to change existing payment incentives, laws and regulations to improve care for advanced illness.
The Peter G. Peterson Foundation has provided a planning grant to initiate this program.
Christopher and Novelli say these issues are of vital public interest and one of the most important issues of our time as Baby Boomers age and struggle to deal with advanced illness for themselves and their parents. Also, the current implementation of health care reform presents an opportunity to advance the needs of seriously ill people.
Link: About the Transformation Project
