July 21, 2003

Karen Orloff Kaplan
President and CEO
Partnership for Caring
1620 Eye Street, N.W., Suite 202
Washington, D.C. 20006-4017

Victoria D. Weisfeld
Program Officer
Robert Wood Johnson Foundation
P.O.Box 2316
College Road East and Route 1
Princeton, NJ 08543

Dear Ms.Kaplan and Ms.Weisfeld:

First, I would like to thank you, Ms. Kaplan, for your response to our letter of concern dated June 30, and our previous telephone contacts to Last Chapters of June 3rd and 4th.

Second, as you may be aware, the letter of concern is posted on our website, and we are gratified to report that a number of additional organizations have contacted us, requesting an opportunity to sign on to that original letter. These new endorsers are listed at the end of this letter, following the "cc" list of original endorsers.

We would also like to thank you for the changes begun this week on the Last Chapters website, which help demonstrate the value of meaningful exchange on issues of mutual concern. We look forward to receiving the list of website changes that your letter mentioned will be forthcoming. We also expect that the press release which accompanied the official launching of the site on June 4th, after Stephen Drake's conversations with Mr. Eakes and Mr. Lukas, will be supplemented with a new release just as widely disseminated to call attention to the website improvements as they evolve.

We appreciate your acknowledgement of the fact that we can "further our understanding of the issues and each other's perspectives from continuing dialogue," and accept your offer of an in-person meeting. Because Not Dead Yet is taking the lead in galvanizing a growing coalition, this meeting should be open to other advocates who signed onto the letter and may be able to attend.

In addition, it will be important that the agenda for the meeting include fundamental issues beyond the Last Chapters website which are relevant to both of our respective core constituencies and stakeholders.

Media Project. For example, the Last Acts Writers Project, through which Last Acts presented information to Hollywood screenwriters about the California Supreme Court case In the Matter of the Guardianship of Robert Wendland, should be discussed. As you may be aware, many of the organizations that signed onto our letter of concern also joined in an amicus brief that Not Dead Yet filed in that case, and others have extensive media expertise on disability issues.

Public Policy, Public Relations, Affiliate Education. Moreover, the public policy and public relations activities of Rallying Points coalition partners, promoting changes in health care decision-making policies that place people with disabilities at risk, should also be a topic. To help address this concern, a more balanced education of Last Acts affiliates would be important to discuss. A study reported in December 2002 found that over-interpretation of do-not-resuscitate orders is prevalent, resulting in denial of basic care like antibiotics. (Beach & Morrison, The Effect of Do-Not-Resuscitate Orders on Physician Decision-Making, Journal of the American Geriatrics Society, 50:2057-61, 2002.) This is but one example of the kind of information, which is clearly relevant to people with both chronic and terminal conditions, that was not reported through the Last Acts listserv or newsletter for six months, until Stephen Drake posted it.

Constructive Response to Policy Threats. We also appreciate the potential for Last Acts "to improve care and caring for individuals who are approaching the end of life or living with potentially fatal or life limiting disease," and hope that Partnership for Caring and RWJF will consider responding constructively to threats to that "improve[d] care and caring." For example, the University of Pennsylvania Hospital announced a presumptive policy against intensive care for people diagnosed in "minimally conscious state," a new but increasingly accepted diagnosis encompassing people with severe brain injury, dementia and labels of severe and profound mental retardation. ("Penn hospital to limit its care in futile cases," Philadelphia Inquirer, November 4, 2002.) Changing default settings to favor non-treatment over treatment has serious implications that must be discussed openly, and with a careful view toward constitutional and civil rights ramifications.

Data Collection. We also note that data-gathering on death through refusal of treatment, and surrogate or physician-determined withholding and withdrawal of treatment, has not been a focus of Last Acts or RWJF efforts to date. In fact, demographic and medical data about this aspect of how people are dying in the U.S. is disturbingly scarce from any source. As a result, the damage already done to people with chronic conditions and disabilities is difficult to estimate, but we believe that it is also difficult to overstate. We hope that you will share our concern, and support a genuine assessment effort.

The meeting we request would need to take place in Chicago, or else funding for Mr. Drake's and my participation at another location would need to be provided. We would also like to request that an appropriate representative of the Robert Wood Johnson Foundation join us in this meeting. Please let me know of your preference as to location, as well as possible dates for such an initial face-to-face meeting, which we anticipate could take place sometime in August or September.

Thanking you in advance for your time and attention.

Sincerely,

Diane Coleman, J.D., President
Stephen Drake, Research Analyst
Not Dead Yet

cc: Risa Lavizzo Mourey, President and CEO, The Robert Wood Johnson Foundation
All endorsers are organizational unless otherwise specified.
(Original endorsers - national organizations indicated by asterisk)

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 Freedom Clearinghouse/Freehand Press/ Mouth Magazine.

Mary Johnson - Editor, Ragged Edge Magazine.

Cynthia Jones & William Stothers
Exploding Myths, Inc.

(New endorsers - as of July 21, 2003)

Marca Bristo, Executive Director,
Access Living, Chicago, IL.

John Shea, PhD, Partner,
Allen, Shea & Associates.

Laura Remson Mitchell and Marilyn Golden, Executive Committee,
California Disability Alliance, Los Angeles, CA.

*LisaRose Hall, Executive Director,
Christian Council on Persons With Disabilities, Indianapolis, IN.

*Earl E. Appleby, Jr., Director,
Citizens United Resisting Euthanasia (CURE), Ltd., Berkeley Springs, WV

Marna Ares,
Colorado Developmental Disabilities Council, Denver, CO.

Kim B. Hetrick, Vice-Chair,
Commission on Disability Concerns, Dearborn, MI

*Eleanor Smith, Founder,
Concrete Change, Atlanta, GA.

*Ed Burke, Director of Governmental Relations,
Consortium of Developmental Disabilities Councils, Warrenton, VA.

*Tom Olin, Director,
Disability Rights Center, Parsons, KS

Patrick Wm. Connally, President,
Disability Rights Enforcement, Education Services, San Rafael, CA.

Nadina LaSpina,
Disabled in Action of Metropolitan New York , New York, NY

*Suzanne Thornton, Co-Founder
Disabled Queers in Action, Atlanta, GA

Steve Gold, Esq.
(disability rights attorney), Philadelphia, PA

*Ron Panzer, President,
Hospice Patients Alliance, Rockford, MI.

Ann Ford, Executive Director,
Illinois Network of Centers for Independent Living, Springfield, IL.

*Rita Marker, J.D., Executive Director,
International Task Force on Euthanasia and Assisted Suicide, Steubenville, OH.

*Mike Ervin, Co-Founder,
Jerry's Orphans, Chicago, IL.

*Mary M. Kelley, Director of Governmental Affairs,
National Association of Developmental Disabilities Councils, Washington, DC.

*Anne-Marie Hughey, Executive Director,
National Council on Independent Living, Arlington, VA.

*Beth Burrows and Terry Wolfwood, Co-Coordinators
North American Women for Diversity, Edmonds, WA.

Kenneth R. Stevens, Jr., M.D., President,
Physicians for Compassionate Care, Portland, OR.

Bob Provan,
Provan & Associates, Austin, TX.

Susan Fitzmaurice, M.S., C.R.C.
Sexuality & Disability: Education, Advocacy, & Support, Novi, MI.

*Anne Finger, President,
Society for Disability Studies, Chicago, IL.

Patricia L. Puckett, Executive Director,
Statewide Independent Living Council of GA. Inc., Decatur, GA.

Mike Reynolds,
Uppity Disability dot net, Lewiston, ME.

Deborah Lisi-Baker, Executive Director,
The Vermont Center for Independent Living , Montpelier VT.

*Deborah Kaplan, Executive Director,
World Institute on Disability, Berkeley , CA.