Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease (review)

I am not a sickle cell disease (SCD) patient, but Carolyn Moxley Rouse in Uncertain Suffering made me feel as if I were walking in the shoes of SCD patients and their families. Rouse tackles the tough issues, including health care access, the many dimensions of pain and suffering, the need for system reform, and transitioning from pediatric to adult care, then identifies implications for health care workers, lawmakers, and community members.

Rouse provides a comprehensive overview of SCD and the disease process, and the role of race. For patients encountering complications and symptoms related to SCD, the presenting symptom is usually pain. Severe pain causes an emergency situation and warrants immediate treatment. Since pain is subjective, this usually is a difficult symptom to assess. Nurses, doctors, and other health care workers involved in assessment with small children must rely wholly on parents and physical signs to document pain; the words of older patients provide documentation of the intensity, duration, location, and severity of pain.

Those affected by this hereditary disorder usually begin to experience complications during early childhood and problems that will persist throughout life. This makes it easy to understand how this population is judged as they require frequent access to the health care system. Often referred to as “frequent flyers,” the names of SCD patients become familiar to health care staff as repeat crises cause frequent hospitalizations. Often, their accounts of pain are questioned, especially as they grow older and are able almost to write a set of orders for their own treatment. Many males especially are labeled as “drug seekers” as they request pain medication for relief. Some have a high tolerance level as they have received so many drugs over time, warranting aggressive treatments for hydration and pain control.

Rouse takes the reader through the SCD patient’s experience from the clinic to the hospital and beyond, as she provides the reader with a first-hand encounter: A seventeen year old African American, male, Max, who suffers from SCD is about to make the transition from pediatric care to adult care. Rouse goes into all background information related to his care, the current circumstances surrounding his care, and the very interesting interactions and opinions of health care professionals involved in Max’s care. Max and his mother have a lot of heartfelt memories to share. The true-life experiences of Max and others keeps the reader eagerly turning the pages of Rouse’s book to find out what happens next.

I enjoyed this book because Rouse’s message rings clear and true. Not only does the author make one see the things from the patient’s perspective, she makes one feel the things that are experienced along the way. There’s a lot more going on than just a carrying the diagnosis of SCD, and Rouse tells you all about it. This book will prove interesting for nurses, doctors, clinicians, and sickle cell patients, as well as the general public interested in SCD.

The larger theme of the book is racial disparity, but Rouse never presents racial disparities as a lesson; rather, disparities are treated simply as a fact about contemporary health care that Rouse points to as presenting an important opportunity for improvement.