A Framework for Providing Quality Pediatric Palliative Care

Abstract

This Oxford Specialist Handbook is designed for inpatient or community pediatric teams, as well as other non-palliative care professionals, to “equip them to provide good palliative medicine to children in their care, despite lack of training.” It is authored by a pediatric palliative care specialist and a general practitioner. The first three chapters include the basics of pediatric palliative care—identifying which children need palliative care, balancing the burdens and benefits of every intervention, the range of life-limiting conditions seen in pediatric palliative care, disease trajectories, basic ethical principles, and withholding and withdrawal of treatment. There is a description of the different palliative care settings for children in the United Kingdom, from the children’s hospice to the inpatient adult palliative medicine service. All topics are presented concisely and in outline form. Five chapters are devoted to the topic of pain, which is the strength of the handbook. Diagnosis, assessment, and evaluation of pain are addressed. A helpful table of common errors in opioid prescribing for children is provided. A chapter on pain evaluation includes a list of self-report pain scales, objective and behavioral measures of pain, and their strengths and weaknesses. Three remaining chapters address opioids, adjuvants, and an analysis of each step in the World Health Organization analgesic ladder. The next seven chapters address common symptoms such as gastrointestinal, neurological and psychological symptoms, feeding and hydration, dyspnea, and skin symptoms. Pathophysiology, etiology, and management are discussed in practical terms, with helpful tables and management algorithms. The chapters on nausea/vomiting and dyspnea are remarkably practical; the former includes a flow chart outlining “a rational approach to antiemesis”. After the chapter on pediatric palliative emergencies, the next several chapters cover specific diseases commonly seen in pediatric palliative care. There is a general overview of malignant diseases, and more in-depth coverage of the most common pediatric malignancies, along with a general discussion on management of cancer-related symptoms. Specific nonmalignant diseases are outlined in more detail, including clinical features and management strategies. The concluding chapters provide a worthwhile practical overview of the clinical issues surrounding death, the major religious issues related to death, funeral practices, bereavement, coping and communication skills, education, and training. As with many pediatric books, a pediatric formulary is included, with recommended dose ranges based on the child’s weight, and notes pertinent to each drug. Each chapter is primarily presented in outline form, with several current references provided at the end. This makes the handbook easy to read and understand. On the other hand, the descriptions of palliative care services for children refer exclusively to services in the United Kingdom and could be less relevant to readers from other countries. In addition, the formulary includes several medications that are unavailable in the United States. As the authors point out in the preface of this book, most children with life-limiting conditions will be cared for not by pediatric palliative medicine specialists but by general pediatric or subspecialist teams. Hospice teams, medical students, pediatric residents, pediatricians, and oncology fellows will appreciate this practical introduction to pediatric palliative medicine. The handbook also will benefit adult palliative care fellows who are rotating through their pediatric palliative training. The authors have succeeded in producing a handbook that provides basic concepts and information for the professional without specialty training in pediatric palliative medicine. The handbook can serve as a framework for those professionals endeavoring to provide good palliative care for children. Katherine Leonard, MD, is an Attending Physician in the Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY, USA.