This powerful book reveals the hidden struggles of the more than 25 million
family caregivers in the United States. While family members have always provided
care for one another, recent changes in health care have placed tremendous new
responsibilities on them--responsibilities that, only a decade ago, were a routine
part of hospital care.
Always on Call presents an intimate look at this new world of family
caregivers. Compelling narratives by caregivers capture the intensity of the
caregiving experience. Chapters by experienced health care professionals analyze
the impact of caregiving and question the limits of family responsibility.
While unsparing in their critiques of the health care system, the authors offer
suggestions for building partnerships and fostering improvement.
Designed for family caregivers, health care professionals, administrators, pastoral
care providers, policymakers, patient and caregiver advocates, and human resource
professionals, Always on Call includes chapters on:
Always on Call is an essential book for understanding family caregiving in today's
health care system. Equally important, it builds a convincing case for change.
- The emotional and financial impact of caregiving
- Caregiving as a workplace dilemma
- The added burdens of end-of-life caregiving
- Professional responsibilities toward caregivers
- Clinician-family conflicts
- Resources for families and professionals
From the Publisher
Twenty-five million men and women in the United States provide essential care to family
members who are sick. The economic value of their work (the amount they would earn if treated
as employees) is $196 billion. But since they are loved ones, these caregivers, who are often
required to provide high-tech assistance or perform the same tasks as professional nurses or
physical therapists, not only receive no pay for their work, but little respect, training,
Why the demands on family caregivers are growing and how the health care system could better
meet their needs are the focus of the United Hospital Fund's new book, Always on Call.
Edited by Carol Levine, Always on Call illuminates the broad spectrum of family caregiving
and challenges the health care and social service community to support family caregivers in
Carol Levine has a unique perspective for evaluating and critiquing the health care system.
Not only is she currently the director of the United Hospital Fund's Families and Health Care
Project, but she has been a family caregiver for her husband for the past ten years, ever since
he was seriously injured in a car accident. When her husband was discharged from the hospital,
she was left to not only pay for essential home care services for her husband, but also provide
vital services herself.
Always on Call combines personal stories that reveal the way caregiving is experienced,
with professional insight, in order to show how these problems can and should be addressed. The
final section, a resource guide, provides caregivers with a wealth of information unavailable
Families and health care have both changed dramatically in the past century. Prior to the 20th
century and the prevalent use of antibiotics, most people who suffered serious illness either
recovered fully or died. As a result of medical advances, better nutrition, and safer jobs,
there are now three times as many Americans aged 65 or older as there were in 1900 and 33 times
as many people 85 years or older. Families, too, have changed: there are more women in the
workplace, and families are more diverse and less likely to include multiple generations (and
the support they can bring).
The prevalence of chronic rather than acute illness and trends toward shorter hospital stays,
increased outpatient care, and limited insurance benefits for in-home care all leave family
caregiving as the only option for many Americans.
Whether they are enthusiastic volunteers or pressured by guilt or crisis, family caregivers
suffer enormous burdens, both personal and financial. Many are virtually tethered to patients
who require hourly medication and need help using the bathroom and other constant care. Caregivers
must sacrifice personal interests, social activities, and paid work. In addition to the financial
strain caused by lost income, they incur out-of-pocket expenses not covered by insurance.
Long-term care is covered neither by most insurance plans nor by Medicare. Medicaid does offer
some long-term care alternatives, but only to those below the poverty line. Always on Call
demands a policy change-a revision in our health care policies to provide long-term care services
to middle- and working-class patients. Levine and her co-authors also demand that, for those who
choose to or have no alternative but to provide care themselves, the health care community offer
training, advocacy, and emotional support to family caregivers-including improved discharge planning,
negotiating with insurance companies, and ongoing education and technical assistance. For family
caregivers, health care professionals, administrators, policy makers, and advocates,
Always on Call offers support, resources, and concrete suggestions for building partnerships
and fostering improvement in our health care system.
About the Author
Carol Levine is the director of the United Hospital Fund's Families and Health Care Project.
She also directs The Orphan Project: Families and Children in the HIV Epidemic, which she founded
in 1991. She was director of the Citizens Commission on AIDS in New York City from 1987 to 1991.
As a senior staff associate of The Hastings Center, she edited the Hastings Center Report. In 1993
she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. She lives
in New York City and serves as caregiver to her husband.
Publisher's Weekly, July 17, 2000
In bold and compassionate essays, caregivers and activists [offer]
resources for caregivers and practical ideas for momentous change.