The first resource on end-of-life care for healthcare practitioners who work with the terminally ill and their families, Living with Dying begins with the narratives of five healthcare professionals, who, when faced with overwhelming personal losses altered their clinical practices and philosophies. The book provides ways to ensure a respectful death for individuals, families, groups, and communities and is organized around theoretical issues in loss, grief, and bereavement and around clinical practice with individuals, families, and groups.
Living with Dying addresses practice with people who have specific illnesses such as AIDS, bone marrow disease, and cancer and pays special attention to patients who have been stigmatized by culture, ability, sexual orientation, age, race, or homelessness. The book includes content on trauma and developmental issues for children, adults, and the aging who are dying, and it addresses legal, ethical, spiritual, cultural, and social class issues as core factors in the assessment of and work with the dying. It explores interdisciplinary teamwork, supervision, and the organizational and financing contexts in which dying occurs.
Current research in end-of-life care, ways to provide leadership in the field, and a call for compassion, insight, and respect for the dying makes this an indispensable resource for social workers, healthcare educators, administrators, consultants, advocates, and practitioners who work with the dying and their families.
"Berzoff's and Silverman's text is a compendium of educational material uniquely edited to facilitate social workers' understanding of how to think about, talk with and practice caring for people with life-limiting illness, their caregivers and themselves. It should be required reading for all healthcare professionals who provide end-of-life care. From its use of personal narratives to its emphasis on the theoretical underpinnings of social work practice and research, this resource models excellence in teaching. It is authoritative, comprehensive, practical and readable. Although each of the chapters could stand alone, together they carefully weave the complex elements of what healthcare professionals need to know to be both competent and compassionate in providing end-of-life care. This resource thoroughly addresses the educational challenges set forth in the three Institute of Medicine reports calling for the education of healthcare professionals to facilitate improved care to people with life-limiting illness. Kathleen M. Foley, MD Professor of Neurology, Neuroscience & Clinical Pharmacology Weill Medical School of Cornell University Attending Neurologist Memorial Sloan-Kettering Cancer Center Palliative Care Initiative Network Public Health Program Open Society Institute"
–Kathleen M. Foley, MD
"This book represents the first textbook for social work in palliative and end-of-life care, an area recently identified by the National Association of Social Workers (NASW) as one of the four key emergent areas in the social work profession. As such, it is an extraordinary achievement of the Social Work Leadership Development Awards Program of the Project on Death in America. Half the contributors as well as one editor were among the forty-two social workers who received these awards from 1999 through 2003. Encompassing touching personal narratives, innovative theory, a broad range of skills, and firmly grounded in a case-based approach, this book is a must read for all social workers and other professionals working in palliative and end-of-life care."
–Grace H. Christ, DSW, director, Social Work Leadership Development Awards Program, Project on Death in America; Associate Professor, Columbia University School of Social Work
"A comprehensive resource for end of life professionals covering a plethora of important topics. Especially valuable for psychosocial and spiritual caregivers working with patients and families at the end of life. A unique sourcebook that can be turned to again and again for guidance."
–Stephen R. Connor, Ph.D., vice president for Offices of Research, International Development, & Children/Adolescents National Hospice and Palliative Care Organization
Contributors: Terry Altilio, Beth Israel Medical Center, New York City o Lisa Aronson, University of Virginia School of Medicine o Elizabeth J. Clark, National Association of Social Workers, Washington, D.C. o Barbara Dane, New York University School of Social Work o Thomas R. Egnew, University of Washington School of Medicine o Iris Cohen, UCLA o Alice Rainess, The Johns Hopkins University o Daniel Liechty, Illinois State University School of Social Work
Part I. Narratives in End-of-Life Care
Fragments of Love: Explorations in the Ethnography of Suffering and Professional Caregiving David Browning
The Symptom Is Stillness: Living with and Dying from ALS Ellen Pulleyblank Coffey
The Loss of a Child to Cancer: From Case to Caseworker Roberta Hoffman
September 11: Reflections on Living with Dying in Disaster Relief Les Gallo-Silver and Penny Damaskos
Part II. Theoretical Aspects of Death and Dying
Introduction To Theory
What Is a Respectful Death? Stu Farber, Thomas Egnew, and Annalu Farber
Dying and Bereavement in Historical Perspective Phyllis R. Silverman
The History of Social Work in Hospice Mary Raymer and Dona Reese
The Interdisciplinary Team: An Oxymoron? Inge B. Corless and Patrice K. Nicholas
Ethical Issues in End-of-Life Care: Social Work Facilitation and Proactive Intervention Patricia O'Donnell
Spirituality and End-of-Life Care Practice for Social Workers Carolyn Jacobs
Gender and Death: Parallel and Intersecting Pathways Illene C. Noppe
Bereavement: A Time of Transition and Changing Relationships Phyllis R. Silverman
Psychodynamic Theories in Grief and Bereavement Joan Berzoff
Part III. Clinical Practice Issues in End-of-Life Care
Introduction: Clinical Practice
The Trajectory of Illness Allen Levine and Wendy Karger
Clinical Social Work Practice at the End of Life Felice Zilberfein and Elizabeth Hurwitz
The End of Life at the Beginning of Life: Working with Dying Children and Their Families Nancy Cincotta
Working with Dying and Bereaved Older People Sue Thompson and Neil Thompson
Assessing Mental Health Risk in End-of-Life Care Katherine Walsh-Burke
Pain and Symptom Management: An Essential Role for Social Work Terry Altilio
Palliative Care and Social Work Susan Blacker
Integrating Spirituality and Religion Barbara Dane
A Framework for Multicultural End-of-Life Care: Enhancing Social Work Practice Norma del Rio
Marginalization at the End of Life Shirley Otis-Green and Christian B. Rutland
Lesbians and Gay Men at the End of Their Lives: Psychosocial Concerns Bruce Thompson and Yvette ColŰn
Palliative Care for People with Disabilities Gary L. Stein and Lucille Esralew
Clinical Practice with Groups in End-of-Life Care Amanda L. Sutton and Daniel Liechty
Technology-Based Groups and End-of-Life Social Work Practice Yvette ColŰn
Working with Families Facing Life-Threatening Illness in the Medical Setting Susan Blacker and Alice Rainess Jordan
Helping the Bereaved Phyllis R. Silverman
End-of-Life Bioethics in Clinical Social Work Practice Susan Gerbino and Shelley Henderson
End-of-Life Care in the Prison System: Implications for Social Work Sheila R. Enders
End-of-Life Care in Nursing Homes Mercedes Bern-Klug and Kim Ellis
The Family Unity Program for HIV-Affected Families: Creating a Family-Centered and Community-Building Context for Interventions Christian Itin, Susan McFeaters, and Susan Taylor-Brown
Social Work Consultation to Mental Health Workers Serving Children and Families Affected by Disasters Lisa Aronson
Hematopoietic Cell Transplantation and the End of Life Iris Cohen Fineberg
Oncology John Linder
Part IV. Context and Leadership
Introduction: The Contexts of End-of-Life Care
Current Legal Issues in End-of-Life Care Stephen Arons
Advanced Directives and Assisted Suicide: Policy Implications for Social Work Practice Ellen Csikai
End-of-Life Care in Prisons John Dawes and Jenny Dawes
Social Work End-of-Life Research Betty J. Kramer and Mercedes Bern-Klug
Financing End-of-Life Care June Simmons
Taking Charge: Social Work Leadership in End-of-Life Care Esther Chachkes and Zelda Foster
The Future of Social Work in End-of-Life Care: A Call to Action Elizabeth J. Clark
Relentless Self-Care Irene Renzenbrink
About the Editors
Joan Berzoff is professor and codirector of the doctoral program at Smith College School for Social Work and director of the End of Life Certificate Program at Smith. She is the coauthor of Inside Out and Outside In: Psychodynamic Clinical Theory and Practice in Contemporary Multicultural Contexts and Disassociative Identity Orders: The Controversy in Diagnosis and Treatment. She is the recent recipient of the Social Work Leadership Development Award from the Project on Death in America.
Phyllis R. Silverman, Ph.D., is scholar-in-residence at the Brandeis Women´s Studies Research Center and professor emerita at the MGH Institute of Health Professions. She is recognized internationally for her research with the widowed and grieving children. Her writing includes Widower: When Men Are Left Alone, Continuing Bonds: A New Understanding of Grief, Never Too Young to Know: Death in Children´s Lives, and a new edition of Widow-to-Widow.
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