End-of-Life Care Bridging Disability and Aging with Person Centered Care

Two cogent arguments about end-of-life care—and carefully reasoned responses from experts End-of-Life Care: Bridging Disability and Aging with Person Centered Care features two primary papers on the controversial issue of end-of-life care within the disabled and aging populations. Each paper explains—clearly and honestly—the multitude of issues involved in using person centered care. The first is from a father and nationally known advocate for the disabled—Rud Turnbull—speaking from a disability perspective about his disabled son. The second is from respected theologian M. J. Iozzio speaking from the aging perspective about her father's Alzheimer's disease. Responses from experts in the field follow, thoughtfully raising further points to consider about policies, ethics, quality of life, and consent. The two central papers from End-of-Life Care focus on person centered, interdependent care using the personal reflections of two close family members and their views about end-of-life care. The responses that follow each are direct, thoughtful, and concentrate on the issues in end-of-life planning using person centered care. This difficult and important issue is discussed in detail by lawyers, theologians, clinical practitioners, and professional service providers, and includes several revealing personal stories about end-of-life experiences. Helpful resources for both policy and practice are also presented to assist the reader to learn more.End-of-Life Care discusses: who, how, and on what grounds end-of-life decisions should be made for the developmentally/intellectually disabled best practices information from Volunteers of Americas Last Passages project the unique challenges faced by individuals with disabilities and their families when confronting issues of death and dying the protection of the rights of the disabled from discrimination person centered care for the aging with complicating health conditions like Alzheimers Disease helping all people to clearly communicate their end-of-life wishesEnd-of-Life Care explores explores policy, theological, and personal dimensions of end of life care, and the ways that person centered care can bridge the fields of aging and disabilty.

Preface: End of Life, Religion, Disability, and Health: Where All the Paths Converge What Should We Do for Jay? The Edges of Life and Cognitive Disability (H. Rutherford Turnbull, III) RESPONSES TO “WHAT SHOULD WE DO FOR JAY? What Should We Do for Everyone? Response to “What Should We Do for Jay?” (Angela King) The Challenges of Living and Dying Well: Responses to “What Should We Do for Jay ” (Genevieve Pugh) Euthanasia and Disability: Comments on “What We Should Do for Jay?” (Hans S. Reinders) The Writing on the Wall…. Alzheimer Disease. A Daughters Look at Moms Faithful Care of Dad (M. J. Iozzio) RESPONSES TO “THE WRITING ON THE WALL” Theological, Personal, Universal: Responses to “The Writing on the Wall” (H. Rutherford Turnbull III) The Writing on the Wall: Resources for Further Reflections (Stanley Hauerwas) Person Centered Planning and Communication of End-of-Life Wishes with People Who Have Developmental Disabilities (Leigh Ann Kingsbury) THE LAST PASSAGES PROJECT RESOURCES End-of-Life Care for People with Developmental Disabilities: Philosophy and Recommendations End-of-Life Care for People with Developmental Disabilities: Bibliography SPIRITUAL ENCOUNTERS Our Last Months with Amber: An Email Reflection (David Wetherow) Former Columnists Final Words Inspire (Susan Harrison Wolffis) Index Reference Notes Included