July 15, 2003

Diane Coleman, President
Not Dead Yet
7521 Madison Street
Forest Park, IL 60130

Dear Ms. Coleman:

Thank you for your June 30th letter expressing concern about the presentation of serious disability, chronic health conditions and end-of-life issues on the Last Chapters website. I am responding on behalf of Partnership for Caring and The Robert Wood Johnson Foundation program, Last Acts. We welcome your participation in Last Acts and Partnership efforts as well as the contributions from the many constituencies represented by your letter. At the heart of the matter, you and we both seek to improve societal understanding of the importance of personal autonomy, respect for individual choices and the quality of care people should be able to expect across the spectrum of care concluding with the end of life.

Stephen Drake brought several good points to his discussion with Mr. Eakes and Mr. Lukas that have helped us clarify a number of points on the Last Chapters website. We want the site to accurately reflect Last Acts and Partnership for Caring's consistent and only goal - to improve care and caring for individuals who are approaching the end of life or living with potentially fatal or life limiting disease. Although we may not view all of these issues through the same lens, I suspect that we all are in agreement that everyone who is close to the end of life deserves the very best care available that comports with their individual needs, values and preferences. And, I am also sure we can all further our understanding of the issues and each other's perspectives from continuing dialogue.

Mr. Drake's perspective showed us that some sections of Last Chapters are subject to differing interpretation and the potential for misconstruction. Far from your conclusion that "it was obvious that no changes would be forthcoming," his discussion with Mr. Eakes and Mr. Lukas enabled us to better focus our message. We are making changes to the site to clarify our message and enhance the distinction between living with serious disability or chronic health conditions and living in the process of dying. The changes should appear throughout this week and I will send you a list so that you can refer to them directly.

We also heard clearly in your letter, and our discussions with Mr. Drake and others, that the perspectives of many people with disabilities have been shaped by insensitive views that, knowingly or not, diminish the value of life with disability. This is deep concern that we share. Our goal is to raise expectations, not to diminish the value of any life experience. We, too, celebrate the vitality in life that overcomes obstacles, often with courage and strength of spirit.

There is ultimately a time - and each of us may reach that point at different times - when we face the process of "acute" dying. We should be able to know that society empowers an end-of-life experience for everyone that respects personal preferences, maintains personal dignity and provides a quality of care that each of us would want for our loved ones and ourselves.

Given threats to individual decision-making and equal access to quality care, reaching this goal must be an ongoing effort. Please continue to contribute to the ongoing discussion, and if you would like, let's meet to talk in person. Stephen Drake is a frequent contributor to the Last Acts online discussion list. The Last Chapters website also has a forum that invites discussion. Meetings and conferences of mutual interest provide another avenue for dialogue around shared and different experiences. Last Acts Partner status is open to all, and we would welcome participation by all the constituencies who signed the June 30th letter. We are committed to open discussion of our shared or different experiences to further inform our thoughts, beliefs and efforts - both the efforts we make together and those more specific to our core constituencies.

We look forward to working with you on common goals, and where our paths might differ, to acting with mutual respect for our specific constituencies as well as our collective needs.

Yours truly,

Karen Orloff Kaplan, MPH, ScD
President and CEO, Partnership for Caring
National Program Director, Last Acts

cc: Risa Lavizzo Mourey, President and CEO, The Robert Wood Johnson Foundation
Vicki Weisfeld, The Robert Wood Johnson Foundation
Andy Imparato, President, American Association of People with Disabilities
Jim Ward, President, ADA Watch/National Coalition for Disability Rights
Bob Kafka, ADAPT
Bob Griss, Director, Center on Disability and Health
Tom Nerney, Director, Center for Self-Determination
Steve Taylor, Director, Center on Human Policy at Syracuse University
Marilyn Golden, Policy Analyst, Disability Rights Education & Defense Fund
Joe Hall, Responsibility Coordinator, National Disabled Students Union
Alan A. Reich, President, National Organization on Disability
Marcie Roth, Director, National Spinal Cord Injury Association
Judith Gran, Public Interest Law Center of Philadelphia Disability Rights Project
Nancy Weiss, Director, TASH
Janine Bertram Kemp, Cedar Media
Lucy Gwin, Freedom Clearinghouse /Freehand Press/Mouth Magazine
Tari Susan Hartman, President, EIN SOF Communications
Mary Johnson, Editor, Ragged Edge Magazine
Cynthia Jones & William Stothers, Exploding Myths, Inc.
Marca Bristo, former Chair, National Council on Disability
Stephen Drake, Research Analyst, Not Dead Yet