Abstract
Edited by Peter Hudson and Sheila Payne. New York & UK: Oxford University Press, 2009, 309 pages, $55.95.
Palliative care is widely known to be family centered, treating both the patient and family (defined loosely as those important in the patient's life) as the unit of care. However, operationalizing this philosophy poses practical and ethical challenges for palliative care teams, leading to disparity between the ideal of family-centered care and the quality of care that is actually delivered. In an attempt to bridge this gap, Peter Hudson and Sheila Payne offer Family Carers in Palliative Care: A Guide for Health and Social Care Professionals, an edited text with contributions from lead clinicians and researchers in the field that addresses the emotional, spiritual, practical, and policy issues of the caregiver role in palliative care.
This text highlights the vital role of family caregivers in the lives of those receiving palliative care, urging professionals to have a greater sense of caregiver's experience in his/her role. The book opens with an overview of effective communication strategies to use with family caregivers, emphasizing the family as an interdependent system with many inherent challenges and opportunities. While negative outcomes associated with caregiving such as psychological and physical fatigue are introduced in chapter one and repeated throughout the text, there is also an emphasis on the positive effects of caregiving, such as meaning-making, closer family bonds, and increased self-efficacy. Chapter 2 urges readers to embrace a social and public health model of palliative care and palliative caregiving, focusing on the need for culturally sensitive approaches to assessment and intervention. Recognizing the importance of spiritual exploration for many patients and families facing life-limiting illness, the author of Chapter 3 implores spiritual care providers to offer evidence-based, partnership-oriented, self-reflective spiritual care. Chapter 4 focuses on a more macro-level topic, presenting numerous public policy initiatives that compensate family caregivers, some of which have specific applications for those providing end-of-life care. The unique challenges of family-centered palliative care service provision in resource-poor countries struggling with the devastation of HIV/AIDS is presented in Chapter 5, highlighting the importance of innovative training models to ensure needs are adequately addressed. Ethical and legal issues are thoughtfully addressed in Chapter 6, including some of the dilemmas that are inherent in the process of difficult decision-making and how culture affects a family's ability to openly discuss subjects of illness and death. Chapter 7 examines family caregiver satisfaction literature, concluding that satisfaction is largely dependent on caregivers' perceptions of how their needs are addressed; the author also argues that qualitative research in this area will lead to richer data.
The editors dedicate the next several chapters to family caregiver needs in various care settings, including the acute care hospital and inpatient palliative care units, home, and long-term care units. While each setting presents its own challenges and opportunities, the overarching interventions—communication, education, supportive presence, and practical resources—remain the same.
The remaining chapters focus on caregiving in specific populations, including caring for children with life-limiting illness, patients with cancer diagnoses, patients with nonmalignant neuromuscular diseases such as multiple sclerosis and amyotrophic lateral sclerosis (ALS), and patients with a decline in organ systems such as congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD). There is little evidence available to guide interventions for children with life-limiting illness and the authors of this chapter emphasize the need for further research. While the chapter discussing care for those with advanced cancer highlights the need to educate caregivers about the progressive and often rapid nature of decline with malignancies, the chapter about neuromuscular diseases and organ system decline stresses the chronic and often unpredictable nature of disease trajectory.
This text would be remiss without a discussion of the postdeath needs of family caregivers. Chapter 14 addresses the necessity of support for bereaved family caregivers, presenting three theoretical frameworks to explain, assess, and intervene following a loss. The final chapter looks to the future of family caregiving from clinical, social policy, and research perspectives stating the importance of considering family caregivers as care recipients in need of advocacy for their often hidden work.
Throughout, the book reads like a text, focusing on the literature about a wide range of challenges related to the caregiver role as well as offering practical interventions for addressing these issues. Although repetitive, each chapter gives important emphasis to the role of communication with family caregivers through the hallmark palliative care intervention—the family meeting. The authors highlight the need for further research aimed at broadening the scope of interventions available to aid caregivers in general, and particularly in palliative care.
Although the field notes from the chapter about caregiving in resource-poor countries and the case examples from the chapter about caregiving in the inpatient setting are worthwhile inclusions, what is palpably absent in this text is the voice of the caregiver; inclusion of caregiver narrative would have helped illustrate the evidence-based findings presented throughout. A more in-depth exploration of the complexities of caregiver-patient relationships, including such themes as family conflict, abusive family relationships, and dilemmas of dependency, as well as interventions for addressing these issues, would have enhanced the text's practical and educational focus.
This book offers a significant contribution to an aspect of palliative care that is emphasized in theory but often overlooked in practice. Enhancing truly family-centered care will require partnerships among clinicians, researchers, and public policymakers to ensure high quality of care delivery.