Index:

TRANSITIONS IN DYING AND BEREAVEMENT. A Psychosocial Guide for Hospice and Palliative Care Moira Cairns, Mahoney Thompson, Wendy Wainwright (Eds) Health Professions Press 2003. 394pp. ISBN 1-878812-92-0. RRP $US44, £24.50

This book is about counseling in palliative and bereavement care. It is structured to mirror the steps or transitions that occur as patients and families follow the journey from diagnosis to death and through bereavement. Each transition or phase is discussed in a separate chapter. Each includes a pertinent case study, identification of the significant psychosocial issues associated with the transition, followed by a list of questions that could be used for assessment and a description of possible interventions. Between each of the main ten chapters are shorter chapters called “Perspective”, which describe topics that have broad application across all or most of the transitions. These include psychosocial assessment, support for the team, alternative therapies, working with emotions and cultural competency. (For a full list, see the Table of Contents in the review in the Bookshop at www.hospicecare.com.)

I think this is an excellent book. It is clinically very practical and the considerable experience of the contributors shines through. It is well setout and organized. It is clearly written, with a minimum of psychosocial “mumbo-jumbo”. I thought there might have been more emphasis on giving more psychosocial care before death as a means of reducing problems in bereavement, and the use of formal Advance Care Planning as a means of achieving this. But as it stands, the book will be a valuable resource for all who work in hospice and palliative care, enabling and empowering them to further explore the psychosocial dimensions of the care we provide.

The book is further enhanced by twenty one-page insights written by people who work at the Victoria Hospice, and by numerous quotations, one of which I lifted to share with you.

“Hope is the thing with feathers
That perches in the soul -
And sings the tune without words
And never stops -at all.”

(Emily Dickenson)

This is a clear and concise account of the current state of our knowledge (and lack of it) about pruritus. The opening chapters describe the pathophysiology (pruritoceptic, neuropathic, neurogenic, psychogenic, idiopathic), neurophysiology and clinical assessment. The following chapters describe the clinical features, pathogenesis and treatment options for the pruritus associated with various conditions including cholestasis, uremia, opioid therapy, neuropathy and malignant disease. The final chapters summarize the topical and systemic therapy of the various types of pruritus.

Severe pruritus is relatively uncommon in clinical practice, but can be a most distressing complaint for the patient. This little book is full of information that will improve the way we think about this complex symptom and will be a valuable resource when confronted by a patient with difficult pruritus.

Robert Twycross laments that pruritus is likely to remain a Cinderella symptom, relatively neglected. Well, this book certainly puts the girl in the spotlight.

This is a fascinating collection of essays outlining the history of the use of opioids for pain relief. The authors are a mix of clinicians, laboratory scientists, historians and sociologists, providing a broad range of perspectives.

Although opioids have been used for thousands of years, it is only recently that we have learned a little about how they should be used to treat pain. Several of the essays describe the prolonged (and sometimes heated) debates that occurred within the profession only forty years ago, until the facts we now take for granted emerged, principally due to the work of Cicely Saunders: that morphine is effective given orally; that morphine works by relieving the pain, not just by causing indifference to it; and that morphine given to patients with advanced cancer and pain is not associated with psychological dependence or significant tolerance. I found reading about the recent evolution of our knowledge about the use of opioids to relieve pain both educational and enjoyable.

The shadow cast by the problems of drug diversion and addiction are apparent in a number of the essays. But, examined in a historical perspective, they are not new. Caroline Acker, the leading historian of addiction science, argues convincingly that an examination of history would have revealed “ample precedents” that OxyContin would be misused.

Informative and enjoyable.

HOSPICE CARE FOR CHILDREN Second Edition Ann Armstrong-Dailey and Sarah Sawbuck (Eds) Oxford University Press, 2001. 416 pp. ISBN 0-19-513330-7. RRP $US32.50, £17.99

This is a comprehensive treatise on all aspects of pediatric palliative care. The first section deals with clinical management issues, including children¹s age-related understanding of death, pain and symptom management, psychological issues, and the management of children with HIV/AIDS

The second part is about the psychological and spiritual problems experienced by families during a child¹s terminal illness and in bereavement. There is also a chapter on support for professional caregivers.

The third part explores different models of pediatric palliative care, including inpatient care and how programs designed primarily for adults can be adapted to meet the needs of dying children and their families.

Essential reading for anyone involved in pediatric palliative care.

WHEN CHILDREN DIE. Improving Palliative and End-of-Life Care for Children and their Families Institute of Medicine of the National Academies. Marilyn J. Field and Richard E. Behrman (Eds) National Academies Press, 2003. 690 pp. ISBN 0-309-08437-7. RRP $US 44.95, £32.95.

This is a most impressive report from the Institute of Medicine’s (IOM) committee on palliative and end-of-life care for children and their families.

It provides a comprehensive review of palliative, end-of-life, and bereavement care for children with fatal or potentially fatal conditions and their families. In some regards, the palliative care needs of pediatric patients are very similar to those of adult patients; in others, they are quite different - patients and their families may have to travel long distances to receive expert care, the physiological resilience of children makes prognostication and decisions about appropriate therapy more difficult, and goal-setting and advanced care planning is done with the parents rather than the patient.

The report provides a list of recommendations for the provision of comprehensive care that is child- and family-centered. The need for collaboration within and between institutions and agencies involved in patient care, the need for educational programs and resources for professionals not accustomed to dealing with children with fatal conditions, and the need for all care to be culturally appropriate all receive appropriate emphasis. The need to educate all professionals who care for children so that they have basic competence in palliative, end-of-life and bereavement care is stressed. There is a chapter discussing the need to restructure hospice benefits for children that addresses the situation in the USA, but all of the other material is applicable to any developed country.

Two hundred pages of background material covering prognostication scores, pediatric quality of life, cultural issues, bereavement experiences, education in pediatric palliative care, and the New York Demonstration Project are not included in the book but are available at www.nap.edu/catalog/10390.html.

This is essential reading for anyone involved in pediatric palliative care. Even if you don¹t deal with children, this book contains a wealth of information applicable to all palliative care that will make you want to provide better and more appropriate care for your patients, whatever their ages.

A HOUSE CALLED HELEN. The Development of Hospice Care for Children 2nd Edition Jacqueline Worswick Oxford University Press, 2000. ISBN 0-19-263235-3. 268pp. RRP £13.95, $US14.95

This book tells the story of the first hospice for children, which opened in Oxford in 1982. It starts with the tragic illness of Helen Worswick, which serves to illustrate why paediatric hospices are so necessary if we are to meet the needs of both the patients and their families. The description of the operation of the hospice over its first ten years further underlines the role of paediatric hospices in meeting these needs. This second edition has an additional chapter, “Into the New Millennium”, which describes the continuing development of paediatric palliative care.

Will be of interest to anyone involved in paediatric palliative care.

Roger Woodruff
Director of Palliative Care, Austin Health, Melbourne, Australia