Advocacy group seeks consumers, organizations

Considerable interest in the end-of-life care community has been generated recently by the planned creation of a new consumer-based advocacy group, to be called Partnership for Caring. Under the leadership of Ira Byock, MD, founder of the Missoula, MT-based Demonstration Project and project director of the Princeton, NJ-based Robert Wood Johnson Foundation’s Promoting Excellence in End of Life Care, and Karen Kaplan, executive director of Washington, DC-based Choice in Dying, this embryonic group is seeking other collaborating organizations and individual members.

A public launching of Partnership for Caring is expected sometime this fall. "Our goals are to bring about a consumer revolution, to raise consumer expectations, and to wage major educational, political, petition, and advertising campaigns to bring pressure to bear on the system to raise the amount and quality of end-of-life care," Kaplan explains. A number of health-related national organizations already have expressed interest in collaborating, says Kaplan, adding that she hopes to attract several hundred thousand individual members.

An organization with a similar mission, Americans for Better Care of the Dying (ABCD), was created last December by Joanne Lynn, MD, founder of the Center to Improve Care of the Dying at George Washington University in Washington, DC. Although it publishes an in-depth newsletter and has been a focal point for key policy initiatives and advocacy, it hasn’t made much of a splash as a consumer-driven organization.

Lynn says ABCD has signed up more than 400 individual members, significantly less than the target she set in announcing ABCD. "I’m not worried about only 400 members," she says. "That’s 400 more than last year, and it’s always very hard to build a membership organization or recruit a large public membership base."

What will make the partnership different from ABCD? "This is going to be a very powerful organization. Our goal is to be utterly inclusive," Kaplan responds. "We’ll ask the members of our collaborating organizations to join up. It will be very high-visibility and inexpensive to join.

"People like to do things that make a difference, and I think there are a lot of people out there looking for an alternative to physician-assisted suicide."

Kaplan says she doesn’t believe the partnership will need to take a position on the controversial physician-assisted suicide debate, since its efforts will be targeted at improving end- of-life care, thereby reducing the demand for assisted suicide.

She urges providers to watch out for this new organization, to join when it is launched this fall, and to call her [(202) 338-9790], if they have additional questions.