Parting Company: Understanding the Loss of a Loved One: The Caregiver's Journey

The authors of this interesting and original book describe themselves as "lay caregivers of dying loved ones who have insights of interest to others like ourselves and to policy makers who would help us in our task." The seven-year study on which the book is based is original in three respects: the focus is on the care giver rather than the dying patient, the setting is primarily the home rather than a hospital or other institution, and the care giver is primarily a family member who may be assisted by a hospice nurse or other professional but who bears the day-to-day responsibility. The authors avow a feminist point of view, but this does not greatly intrude on the 14 case studies or interviews that make up most of the book. Indeed, 4 of the interviewees are men, and nearly half the 14 are professionals who are working with the family member.

Pearson and Stubbs recognize that there is no magic solution for the frequent despair felt by an inexperienced family care giver. Their chief recommendations include providing the lay care giver with more information on and better preparation for the often ugly realities of death and dying, improving communication between the care giver and the professionals involved, and increasing understanding of the term "palliative care," with more emphasis placed on pain management.

All of this is good advice, but what is missing is a greater recognition of the underlying role of demographic and economic factors. A century ago, a dying patient rarely lived more than a few days or weeks. Today, patients with stroke and other chronic illnesses may require extensive care for months or even years. Also, many, if not most, wives and daughters are now working outside the home -- a factor that causes them to assume a double burden if they are handling much of the care of the patient.

The authors' well-documented and justifiable cri de coeur regarding the burden that is too often placed on the care giver has been reinforced by the findings of a recent study sponsored by the Metropolitan Life Insurance Company of the financial toll exacted from care givers as well as threats to their health (Sara Rimer, "Study Details Sacrifices in Caring for Elderly Kin," New York Times, Nov. 27, 1999). Too recent to be noted in the book, but coming almost as an answer to their plea, is the plan of the Journal of the American Medical Association to devote an issue in November to care at the end of life.

What we also need are some realistic proposals for the financing of long-term care. Meanwhile, we should build on whatever practical approaches exist. In my opinion, the authors condemn home care much too broadly, although the value of home care is often oversold for sentimental as well as financial reasons. Hospice care is undervalued. Continuing-care retirement communities, which combine long-term professional care of dying patients who are older than 65 years with extensive support for spouses and families, are not mentioned, nor are the pioneering initiatives supported by the Robert Wood Johnson Foundation's Last Acts campaign, which seeks to increase awareness of the need to improve care at the end of life.

Despite these omissions, Parting Company is a substantial contribution to the growing literature on death and dying. It would be a useful addition to required-reading lists in medical and other schools of the health professions.

Reviewed by Anne R. Somers, D.Sc.
Copyright © 2000 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

Filling a gap in the death and dying literature, coauthors Pearson (The Practical Psychic) and Stubbs, a developmental psychologist and educator, assembled this collection of personal accounts of caregivers of the dying. Many books provide help to the dying or grieving, but countless people embark on the care of a dying loved one with little knowledge of what to expect and few resources to draw upon. These engaging and unflinching narratives told by a demographically diverse group of caregivers provide a variety of viewpoints, from family members and friends to healthcare professionals and counselors. The caregivers tell their stories in their own words with minimal editing. Acknowledging that each reader may learn something different from these accounts, the authors limit interpretation and social analysis to the introduction and end commentary sections. This highly readable collection is recommended for all libraries.AAnnette Haines, Central Michigan Univ. Libs., Mount Pleasant
Copyright 1999 Reed Business Information, Inc.