Book Review: Issues in Palliative Care Research

Editors: Russell K. Portenay and Eduardo Bruera
Publisher: Oxford University Press
Reviewed by: Madhuri Reddy, MD, MSc, FRCPC, Associate Editor.

This text is an evidence-based review of palliative care research and its challenges. Over the last several years, there has been an increasing need for improvements in the scientific basis of palliative care. There is a wide range of types of research in palliative care, including clinical epidemiology, treatment trials, psychosocial research, quality of life studies and systems research. This book examines not only the range of conventional medical interventions, but also a variety of concerns that have mostly been at the periphery, such as ethics, communication and the nature of suffering. The book offers an overview of the most important research issues and includes updated proceedings of a 1998 meeting that focused on research that took place in Washington D.C., at the National Institutes of Health, as well as additional chapters on selected topics.

The book is well organized and is divided into nine sections. The first section focuses on research in the area of pain, and primarily covers methodological issues in the design of pain control clinical trials. It is pointed out that there are many challenges in analgesic trials, including the large placebo effects and difficulty of symptom measurement.

The second section focuses on research on anorexia and gastrointestinal disorders. It reviews information regarding developing, conducting and analysing trials investigating agents for treating cancer-related anorexia/cachexia. Methodological challenges regarding anorexia/ cachexia trials are examined and 10 such trials are reviewed. The final chapter in this section makes the point that little work has been done in the area of anti-emetics, and the author reviews the etiology of emesis and the research that has been published to date.

The third section examines respiratory symptoms research, with a focus on the multidimensional assessment of dyspnea. Because dyspnea is not a single sensation, it is challenging to measure quantitatively. The author reviews some qualitative measures of dyspnea (e.g., visual analogue scale, Likert scales) as well as quality of life instruments. Another chapter in this section reviews research into nonpharmacological interventions for dyspnea. The fourth section looks at research in fatigue/asthenia. It discusses fatigue measurement and causes (e.g., anemia, anxiety, depression) and reviews various interventions and treatments. There is significant discussion surrounding the evaluation of the causal relationships between fatigue and psychiatric symptoms in cancer patients and the respective treatment implications. The fifth section examines neuropsychiatric and psychosocial research. It discusses the undertreatment of depression in the terminally ill, as well as the challenges of quantitative and qualitative measurement of depression.

The sixth and seventh sections inspect quality of life research, including an assessment of decision making capacity and end of life care. The author reviews the medical literature on patient utility, cost utility and effectiveness of using Medline. He reviews the studies defining patient and family member quality of life as well as instruments used to measure quality of life. The chapters on decision making capacity and advance care planning are probably the most useful for physicians involved in geriatrics and care of the elderly research. Even though there is a focus on cancer research, the frequency of cognitive impairment, particularly delirium, in the final days and months of life is also discussed.

The next section examines research in practice change and reviews the barriers to and opportunities for changing end of life care within the medical school environment, as well as in hospitals and cancer centres. The ninth and final section examines research issues in special populations, particularly pediatric palliative care and HIV/AIDS.

Throughout “Issues in Palliative Care Research”, there is little reference to palliative care of older patients, as the book focuses mostly on cancer palliative care. Even the “special population” sections do not include the older population. However, this is doubtless a testament to the paucity of research in this area rather than an omission by the authors. This book is a must for any researcher in the palliative care field. For the rest of us, it is an excellent reference and review of current palliative care research, and the possible future directions of such research.