Mercedes Bern-Klug - Transforming Palliative Care in Nursing Homes

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Transforming Palliative Care in Nursing Homes

END-OF-LIFE CARE: A SERIES

End-of-Life Care: A Series
Virginia E. Richardson, Series Editor

We all confront end-of-life issues. As people live longer and suffer from more chronic illnesses, all of us face difficult decisions about death, dying, and terminal care. This series aspires to articulate the issues surrounding end-of-life care in the twenty-first century. It will be a resource for practitioners and scholars who seek information about advance directives, hospice, palliative care, bereavement, and other death-related topics. The interdisciplinary approach makes the series invaluable for social workers, physicians, nurses, attorneys, and pastoral counselors.

The press seeks manuscripts that reflect the interdisiciplinary, biopsychosocial essence of end-of-life care. We welcome manuscripts that address specific topics on ethical dilemmas in end-of-life care, death, and dying among marginalized groups, palliative care, spirituality, and end-of-life care in special medical areas, such as oncology, AIDS, diabetes, and transplantation. While writers should integrate theory and practice, the series is open to diverse methodologies and perspectives.

Joan Berzoff and Phyllis R. Silverman, eds., Living with Dying: A Handbook for End-of-Life Healthcare Practitioners

Virginia E. Richardson and Amanda S. Barusch, Gerontological Practice for the Twenty-first Century: A Social Work Perspective

Ruth E. Ray, Endnotes: An Intimate Look at the End of Life

Terry Wolfer and Vicki Runnion, Dying, Death, and Bereavement in Social Work Practice: Decision Cases for Advanced Practice

Transforming Palliative Care in Nursing Homes

The Social Work Role

Edited by

MERCEDES BERN-KLUG

Columbia University Press New York

Columbia University Press
Publishers Since 1893
New York Chichester, West Sussex
cup.columbia.edu
Copyright 2010 Columbia University Press
All rights reserved
E-ISBN 978-0-231-50707-3

Library of Congress Cataloging-in-Publication Data
Transforming palliative care in nursing homes : the social work role /
edited by Mercedes Bern-Klug.
p. cm.(End-of-life care)
Includes bibliographical references and index.
ISBN 978-0-231-13224-4 (cloth : alk. paper)ISBN 978-0-231-13225-1 (pbk. : alk. paper)
ISBN 978-0-231-50707-3 (e-book)
1. Medical social workUnited States. 2. Social work with older peopleUnited States.
3. Palliative treatmentUnited States. 4. Nursing homesUnited States.
I. Bern-Klug, Mercedes.
HV687.5.U5T73 2010
362.17'5dc22

2009023928

A Columbia University Press E-book.
CUP would be pleased to hear about your reading experience with this e-book at .

References to Internet Web sites (URLs) were accurate at the time of writing. Neither the author nor Columbia University Press is responsible for URLs that may have expired or changed since the manuscript was prepared.

This book is dedicated to my mother,
Estela Corona Bern,
who has demonstrated that each stage of life has its own purpose and beauty.

A word of thanks:
Thank you to the people and organizations who provided emotional, financial, or inspirational support toward the development of this book: Ginny Richardson, Rosalie Kane, Megel Klug, Rosemary Chapin, Lauren Dockett, John Michel, Kathleen Kelly, Barbara Frank, Jim Lubben and Barbara Berkman and the John A. Hartford Geriatric Social Work Programs. Grace Christ, the Soros Foundations Project on Death in AmericaSocial Work Leadership Award Program, the University of Iowa (UI) School of Social Work (in particular Lorraine Dorfman, Salome Raheim, Ed Saunders, and Kate Kemp), the UI Office of the Vice President for Research, the UI Obermann Center for Advanced StudiesScholar Program, and the UI Center on Aging.

I would also like to thank the nursing home staff members who welcome researchers, and the residents and family members who are our most important teachers.

We did the best we could with what we knew.
Now we know better; now we must do better.

Maya Angelou

Contents

Foreword:
Looking Back on the Nursing Home Experience of My Mother
Msgr. Charles Fahey

Foreword
Virginia Richardson

Introduction
Mercedes Bern-Klug

1. The Need to Extend the Reach of Palliative Psychosocial Care to Nursing Home Residents with Advanced Chronic Illness
Mercedes Bern-Klug

2. The Structure and Process of Advanced Chronic Illness and Palliative Care in Nursing Homes
Sarah Thompson and Lisa Church

3. Paying for Advanced Chronic Illness and Hospice Care in Americas Nursing Homes
Michael J. Klug

4. Trends in the Characteristics of Nursing Homes and Residents
Mercedes Bern-Klug

5. Anticipating and Managing Common Medical Challenges Encountered at the End of Life
Ann Allegre

6. Identifying and Addressing the Psychosocial, Social, Spiritual, and Existential Issues Affecting Nursing Home Residents at the End of Life
Jean C. Munn

7. Identifying and Addressing Family Members Psychosocial, Spiritual, and Existential Issues Related to Having a Loved One Living and Dying in a Nursing Home
Patricia J. Kolb

8. Identifying and Addressing Ethical Issues in Advanced Chronic Illness and at the End of Life
Charles E. Gessert and Don F. Reynolds

9. Final Discharge Planning: Rituals Related to the Death of a Nursing Home Resident
Peggy Sharr and Mercedes Bern-Klug

10. Grief, Self-Care, and Staff-Care: Repeated Loss in the Nursing Home Environment
Sara Sanders and Patti Anewalt

11. The Future of Palliative Psychosocial Care for Nursing Home Residents with Advanced Chronic Illness
Mercedes Bern-Klug

My mother, age ninety-eight, drifted off from this life not one day too soon or one day too late. She had lived a full life as daughter, wife, mother, sister, aunt, teacher, volunteer, believer, and friend. Until the final days, when she slipped into a coma, she was an important part of the nursing home where she spent the final three years of her life enduring a series of debilitating medical events and concomitant disabilities as her progressive intermittent frailty reached its end point, death.

Elizabeth Fahey was a lovely person who was friend to whomever she met. During the latter part of her life, first in an assisted-living facility and then in a nursing home, she continued to be kind to and thoughtful of all with whom she came into contact. I was continually amazed and edified to experience the mutual greetings shared by staff and other residents, as I wheeled her to meals or to Mass. She had been unable to walk for several years despite excellent medical attention and efforts at physical therapy.

To my alleged expertise in the field of aging, caring for my mother and dad in their latter years added a substantial dose of reality and understanding that can only be hinted at in journal articles and textbooks. Among these is the reality that death is a social event almost anywhere and anytime it occurs. It is especially true in an institution where the community is intimate and constant. It involves both residents and staff members.

Two events illustrate the point.

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