Caregiving and Loss: Family Needs, Professional Responses Kenneth J. Doka and Joyce D. Davidson, eds. Hospice Foundation of America 2000 South Street, MW #300 Washington, DC 20009 Tele: 800-854-3402 Web: http://www.hospicefoundation.org ISBN: 1-893349-02-0-$24.95
Caregiving and Loss: Family Needs, Professional Responses, published by the Hospice Association of America, is an apt depiction of hospice "voices": insights and issues learned by those in hospice who care for dying patients and their families. This comprehensive text greatly expands and deepens the understanding quality end-of-life care that hospice provides. This book is designed for the professionals who support family caregivers as advocates or policy makers, as well as those on the "front lines" who directly provide professional care or supervise those who do. The extreme costs and benefits of caring for dying loved ones and their families is compassionately and thoroughly presented. This book can serve as both a resource and a source of comfort for anyone who ventures down the road of hospice care. Rosalyn Carter begins this book with a succinct yet heartfelt foreword as both a caregiver herself and founder of the Rosalyn Carter Institute (RCI) at Georgian Southwestern State University. The research from this institute has demonstrated the need for improved and strengthened relationship between the caregiver and the supportive professional. This book is considered a large step in this direction.
Caring and Loss is divided into four major parts with an excellent set of resources and references at its end. The first part, "Caregiving as an Issue: Policy and Programs," explores the nature of caregiving: the broad picture, national surveys, statistics, demographics, economics, health ramifications for caregivers, and our current healthcare system. Each of these topics is thoroughly yet succinctly addressed. National, state, and private policy proposals are also well covered. This introduction lays an excellent foundation for the remaining three chapters in this section, "Hospice as a Model for Caregiving," "Family Caregiving and Loss," and "Creating and Energizing Caring Communities."
"Hospice as a Model for Caregiving" briefly discusses the historical roots of the hospice movement and then quickly delineates the goals of hospice, the values of hospice care, the paramount importance of quality of life issues in this population and bereavement care. Six sections of this text are entitled "Voices." In these sections, individuals step forward and tell of their own personal experiences with giving care to grievously ill family members. This can be a mother caring for a terminally ill infant to a gay man who has lost more than 200 friends to AIDS. These vignettes are priceless and emotionally moving. There is no substitute for hearing the experiences of those who have been there. One mother asked the social worker how she knew when her job was done and the social worker replied, "Well that would be when your son, um, dies." That was not what the mother was asking. What she had wanted to know was "How she could tell when she'd helped someone." This very simple exchange was misinterpreted, yet I wonder how often this happens again and again and again? These "voices" help caregivers learn to listen more carefully and empathize more deeply with the family members and clients they are caring for. I found these to be invaluable.
This book also includes two interviews. The first interview is with the Vice President of Human Resources for Fannie Mae. This administrator described in detail Fannie Mae's program, which supports family caregivers dealing with end-of-life situations. The second interview, later in the text, is with the director of AT&T's Work and Family Program. This program covers major life events including family caregiving and end-of-life issues. Both of these interviews are a fascinating glimpse into the way cutting edge corporations can assist their employees during these most trying times. They can serve as exemplars for other large corporations in their effort to provide humane and responsible care for their valued employees.
The second part of this book addresses the professional implications of the caregiving experience. These topics include: long-term care, loss and bereavement, cultural differences, the role of nursing, and self-care. Every one of these eight chapters can stand alone; however, together they weave an impressive tapestry for all professionals in end-of-life care. Five sections within the entire text are referred to as "Programs that Work." Two such sections appear in the second part of this book. These are: "Grotta Synagogue Hope" and "Volunteer Hospices: Talbot Hospice Foundation." These brief descriptions of efficacious programs are enlightening and inspiring. Many seem like common sense, yet on the forefront of end-of-life care. Some could be emulated in any community, while others require a large, urban setting. Regardless of their efficacy, their examples are compelling.
The third section of this book revolves around grief, loss, and the end of life. Four chapters cover the topics of spiritual support, ethical decisions, and suffering within the realm of grief, loss, and end-of-life care. Two "voices" and one "program that works" balance this penultimate section. Information to caregivers and information from caregivers truly reinforces the essential content of this section.
The final main section is the conclusion, which is brief but contains the "Primary Caregiver's Bill of Rights." Immediately after this last section is a comprehensive resource list, followed by a reference list. These two are both invaluable assets to the professional caregiver. The resource list includes 800 numbers, e-mail addresses, Web sites, and mail addresses for all organizations. Also included is a brief description/review of the organization and what services and information it offers. This resource list is divided into general support organizations, hospice and end-of-life care, disease-related support, elderly referral resources, ethnic and minority caregiving resources, financial support programs, grief and bereavement homecare assisted living and nursing facilities, internet resources, and respite services. The reference section is organized by chapters. I found these references to be both comprehensive and current.
Caregiving and Loss: Family Needs, Professional Responses is a rich, informative text that would be an asset to any professional involved in any level of hospice care. Policy makers, supervisors of those providing care or, indeed, caregivers themselves would greatly benefit from reading this book. It can also serve as an ongoing resource for professional hospice caregivers.