Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Doka KA, Davidson JD, eds. Caregiving and Loss: Family Needs, Professional Responses. Washington D.C.: Hospice Foundation of America, 2001.

An assumption underlying the movement to improve end-of-life care in the United States is that somehow in the process of providing help to families through better delivery of medical care, the redesign of systems, and extending access to hospice and social services, we will be able to alleviate the physical and emotional burdens that go hand in hand with caring for the dying. Caregiving and Loss provides us with many voices and perspectives with which to consider how far that assumption takes us, and how we fall short. In her piece, "Voices: Hoping this Could be Somebody Else's Life" Elizabeth Halling shows us that with a dying child, nothing may ever seem to be enough. "Finally, I thought, we're going to be surrounded by people who know what to do and how to help. Finally we won't have to be the experts anymore. We'll have someone to share the burden, someone to show us the way. The big step we've taken of putting ourselves in their hands meant that somebody else could take some big steps now, and big soft wings would enfold us, and we wouldn't have any more pain. Turns out the hospice people are just people, not angels" (p. 35).

The burden of caregiving grows ever larger as an increasing proportion of our population enters the Third Age. In her introduction, Carol Levine notes that 23.5 million adult caregivers in the US contribute an estimated $196 billion per year in free labor (in 1997), with an average of 20.3 unpaid hours per week (p. 9). The implications of this burden are staggering. Caregivers repeatedly report the loss of promotions at work, loss of financial resources, and loss of the emotional support of friends and family who cannot relieve the heavy burden of the caregiver and thus turn away. At the same time, the caregiver is experiencing the ongoing deterioration and impending loss of a loved one – lifelong partner, parent, child. Who is responsible for providing this care, and what can we, as a society, do to understand, appreciate, and ease this heavy duty of service?

These are the questions that are raised in this multifaceted book, which provides a collection of resources, personal stories, examples of programs that work to support caregivers, and the current thinking on grief, bereavement, and the physical and psychosocial complications of caregiving. Connection between people remains at the heart of caregiving. There are many players in this complex and fragmented health system: the professionals who repeatedly step into the homes and lives of those for whom they care; the health care professionals who diagnose disease, manage symptoms and are relied upon to support patients, caregivers and their families; the professionals who counsel families in turmoil; the members of family and community who give of themselves to assist their loved ones and neighbors. There are intricate family dynamics, awkward and stressed systems that are not easily navigated, complex and often illogical financial constraints, and the often overwhelming burden of grief. Kenneth J. Doka and Joyce D. Davidson have created a compilation that gives voice to the experiences of the professional and family caregivers who are caught up in the streams of assistance that slowly trickle in to them, as well as those professionals who are working to open the rivers that caregivers of the dying need so desperately to flow to their doors.

Part I of Caregiving and Loss, "Caregiving as an Issue: Policies and Programs" addresses the size and scope of the role of caregiving, while highlighting several programs within the community and the workplace that try to assist family caregivers. For example, AT&T provides a service to its employees called "Life Tracks," which is housed on their intranet and provides referral resources to employees for life transitions, including caregiving and end- of-life care. AT&T also offers flexible scheduling options, such as compressed work weeks, telecommuting, and part-time work for up to 24 months, as well as family care leave benefits for a period of up to 12 months. They have found that many people who would otherwise have had to leave their jobs were able to remain employed as a result of this program. In New Jersey, the Grotta Foundation bound together local synagogues, funders, and the local aging service groups into a network of support called The Grotta Synagogue HOPE (Help, Opportunities, and Programs for Elders). They created opportunities for Jewish congregants to aid the elderly community and provide care and assistance at the end of life.

Doka and Davidson define "caregivers" as the persons who are caring for a dying patient. This could mean members of the immediate family; members of the community who are non-kin, but considered to be a part of the family network; and the professional caregiver who provides care in a nursing home or long-term care facility, or who enters the home of a family in need and provides care. All caregivers—professional, family, and non-kin—are essential in providing quality care to those who need it.

Part II of Caregiving and Loss, "The Caregiving Experience: Implications for Professionals" focuses on the ongoing challenges faced by professional caregivers and the many medical and support professionals who interact with the patient, family, and caregivers. Effective caregiving happens when professionals can fully engage with their patients and families. The ongoing cycle of grief and the low-wage work of caring for the dying places many of the most essential personnel in this field at risk. Caregivers working through home care agencies and some nursing homes are often unable to grieve for the loss of their patients, largely due to the fact that they cannot afford even one day off from work to attend the funeral or visit the family. Eileen Chichin, Orah Burack, and John Carter describe how some nursing homes and long-term care facilities, such as Jewish Home and Hospital in New York City, are trying to acknowledge these caregivers' attachments to their patients. The administration honors their grief in the form of leaving a rose on the bed after a patient has died and allows the certified nursing assistant the opportunity of a short break to write the family a note on company time.

The very real need for professionals to have sensitivity in dealing with many ethnic and cultural groups is discussed in "Cultural Differences: Sensitivities Required for Effective Caregiving" by Bernice Catherine Harper, Michon Lartigue & Kenneth J. Doka. Their recommendations begin with knowing oneself and then move on to suggest that caregivers and professionals ask direct questions, so as to determine what is meaningful to each patient and family. William Lamers discusses the need for doctors to be willing and able to provide caregivers with reassurance and clear expectations about the symptoms and disease trajectory of a dying patient, what constitutes an emergency, and whom to call if and when assistance is needed. Susan Reinhard writes about the role of nursing in supporting family caregivers. She advocates for social policy changes which address financial reform for services on a sliding scale basis, collaboration among health care leaders, consumer-driven home care programs which have public support, insurance benefits for family caregivers, and better intervention research.

Also included in this part of the book are the personal voices of psychological and spiritual counselors who work with caregivers toward the goal of helping to ease their burdens. Barry Jacobs tenderly details working with a caregiver who would only agree to help herself if he could convince her that by participating in therapy as part of an education program for medical students, she would be helping him. "I invited Carla because selfless caregivers are among the most difficult patients for any health care professional to know how to help.…In my clinical career, I'd seen several caregivers eventually crash and burn because they steadfastly neglected to take care of themselves" (p. 161). In "Self-Care: The Path to Wholeness," Beth Witrogen McLeod poetically addresses the spiritual context of the family caregiver in a youth-obsessed society. Where does the family caregiver fit in society at this critical turning point and how can he or she protect the fragile sense of self that exists separately from the caregiving role in a day and age where we are expected to be everything to everyone at all times? "The fear of admitting that we are not supermen and superwomen carries such power over us that we neglect ourselves in order to measure up to an outside, disempowering ideal… In molding ourselves to what is socially acceptable, we have become untrue to our whole selves, and thus invite dis-ease" (p. 197).

Inevitably, all caregivers face the final moment when their loved one dies. In supporting caregivers up to the time of death, we are only doing part of the job. Part III of Caregiving and Loss addresses the more existential questions of grief, loss, and moving forward. Often overlooked are the torment and questions caregivers face about the sequence of events leading up to the death. "Did I do the right thing? Did I make the right decision?" These are questions that continue long after a loved one has died. Reverend George Blackwell and Rabbi Harold Stern write of the spiritual practice of connecting and being present, often helping people through the experience of a crisis of faith in "Providing Spiritual Support to Family Caregivers." Deborah Sherman speaks to the importance of addressing the memories and experiences of grieving families. How they feel about what they remember, rather than actual fact checking is the focus of grieving, and she notes "the importance of hearing 'I am sorry' from their family member's physician and caregivers following the death of a patient" (p. 262). The value judgements contained in ethical decision making during prolonged illness, and the need for patients and families to be supported while making such decisions, especially under the weight of grief families experience at this time, is the topic of David M. Price's piece, "Hard Decisions in Hard Times: Helping Families Make Ethical Choices During Prolonged Illness." Families often feel limited by either/or choices about care. Price advocates for families to have a clear understanding of their choices, and acknowledges the need for professionals to recognize the influence of grief and guilt during this critical time. He provides a guide to many common turning points faced by families at the end of life, for example should we have a DNR order? Should we put in a feeding tube? Should we discontinue aggressive curative approaches?

These are questions that under the best of circumstances have no easy answers. Caregiving and Loss: Family Needs, Professional Responses provides a wealth of information for all persons involved in answering these questions. The breadth of topics covered and the honesty of the individual stories and professional compassion contained in these pages are a tribute to how deeply the importance of caregiving is felt. As Joyce D. Davidson concludes, "Somehow, no matter what we humans are going through, nothing gives us more comfort than the presence of someone with whom to share our journey" (p. 299). The heart of this book lies in the hope that caregivers will not have to travel this road alone; that professionals and members of the community alike will hold torches aloft to light the way and tread gently, steadfastly alongside.