Title: Speaking Honestly With Sick and Dying Children and Adolescents: Unlocking the Silence
Author: Dietrich Niethammer, MD
Publisher: The John Hopkins University Press, 2012
Reviewer: Kim Shrieves,child health nursing
What was it like?
This book examines how children think, feel and deal with death and dying and highlights they are both capable and want to talk about it, particularly when it concerns them. Niethammer familiarises readers with the open approach to communication during his investigation of why truth telling and the psychological guidance of a dying child was so long neglected and is still not fully accepted today.
The beginning chapters address how a child or adolescent deals with illness and what being seriously ill means to them. A chapter follows on the medical professions traditionally paternalistic attitude and the importance of taking patient autonomy, including the autonomy of children, seriously and to respect their opinions using open communication as a foundation from the first day of care and continually throughout despite our own personal discomfort. The final chapters consist of a historical review of various concepts of death in both healthy and sick children. The book includes a discussion of truth telling and children actively participating in the fundamental decisions regarding their life at the end as reflected in the literature.
What were the highlights?
Other highlights within this book relate to the author’s strong and heartfelt message and how he conveys it to readers.This book is well written and despite the emotional intensity of the topic, once you face your personal discomfort with the subject it covers, Niethammer’s passion is contagious. The book challenges care givers and professionals involved in the care of sick and dying children to become more aware of the thoughts and behaviours of chronically ill children and their families, so they can talk openly and honestly with them from the start, allowing them the opportunity to express their fear and anxiety and cope with their disease on their own terms.
Strengths and Weaknesses?
The strengths of this book include a thorough analysis of available literature (English, German and French publications) beginning with Freud. It provides full references of works covered and hehe examines and evaluates the literature of psychoanalysis and developmental psychology. He also looks at paediatrics,concluding that an understanding of death and dying appears much earlier in human development than previously attested. He argues that now we know a lot more about the thinking of children we can support them much better than was possible for our predecessors. Additionally, Niethammer presents his argument by outlining information gathered from this literature as well as utilising individual case studies from his professional life that report on his own successes and misjudgements. Literature and life examples assist to illustrate his case for an open approach well, however, the majority of available literature and case studies featured focus on children with cancer (although they could have application to children with other illnesses chronic and terminal). Furthermore, any guidance or specific practical guidelines are from the perspective of doctors and it is not easy for nurses to make recommendations that are aimed at doctors. Niethammer does however acknowledge that nurses interact most often with children and their parents, and in contrast to other staff, cannot withdraw during working hours.
Who should read it?
Despite the content being most pertinent and obviously related to professional practitioners within the field of oncology and more specifically doctors, I would still recommend this publication to all care givers for sick and dying children: including nurses and other medical professionals, psychologists and social workers as well as lay persons.