Medical Care of the Soul: A Practical Guide to End-of-Life Issues for Families, Patients, and Healthcare Providers
Bruce G. Bartlow
First Edition, 2000
Johnson Printing
1880 South 57th Court
Boulder, CO 80301
http://www.johnsonbooks.com/catalog/book.php?id=77
ISBN: 1-55566-254-4
Soft cover, 289 pages, U.S. $18

The author, a nephrologist and a critical care physician with decades of clinical experience, examines end-of-life issues in American healthcare. His premise is that we have become so engrossed in caring for the body and fending off death that we have neglected “medical care of the soul.” He defines the soul as “that essential spark that most deeply defines each of us.” He proposes that we in healthcare have forgotten how to listen and learn from death because we have come to view death as only loss and failure rather than a natural event.

This is an unusual book filled with practical and metaphysical ideas. It is not based in any religious, philosophical, or therapy platform but on a broad framework of discussion, ideas, and practical suggestions. Throughout the book the reader is guided through the lesson that healing is not limited to the physical body and restoration of health. Healing includes the essence of helping a person achieve a desirable type of death. In the last section of the book, the author describes a vision of his own death and how releasing that experience was for him.

The book is divided into five parts. The initial sections examine practical issues, including reasons why we avoid discussing end-of-life issues with our families, our healthcare team, or even ourselves and the barriers that this creates. Although we propose that we want to die at home, surrounded by family, and not in pain, the statistics support another picture. Most people die in hospitals, 90% of people have had no end-of-life discussion, and the discussions that occur tend to be around technical and procedural questions with little emphasis on quality of life.

Included in this section is a review of a variety of advanced directive documents. What makes this review different is the inclusion, in both narrative and chart form, of each document’s strengths and weaknesses, and attention to “soul” questions such as quality of life, burdens and benefits of therapy, and the person’s goals, hopes, and fears. An entire copy of each type of document is included.

From here the author looks at who besides the patient becomes involved with end-of-life decisions and how these same “soul” questions affect and influence those people. This includes family, friends, and healthcare providers. Beginning an end-of-life discussion can seem awkward or inappropriate so it is often avoided. The author provides scenarios and guidelines on how to start, things to say, how to listen, and what conflicts — a natural part of life — will and should arise. He discusses how we deal or fail to deal with conflicts and delineates steps we can take to improve our success and lessen the frustration and ill will that may be generated.

The next section focuses on our struggles with technology, illusions of cure, society’s voice in the struggle, and our battles over how much to do. The author concludes “that the true tragedy of illness is not our impotence against death but our ignorance of how to cherish the value of life.” The emergence of technology about 50 years ago abruptly changed our relationship to illness and end of life. In the exuberance of being able to cure or delay death, the soul was put aside. Now our dissatisfaction with the way we die is fueling an insistence that something better has to be available to join technology and our unique humanness. He has an interesting segment on some of our societal views such as blaming the patient and withholding resources from segments of the populations. He closes this segment with works by several authors who wrote about aspects of grieving and its importance in achieving acceptance of death.
The next section includes a variety of discussions and patient scenarios in which the author examines the relationship of illness and the soul. This encompasses a wide aspect of belief systems and therapies. It explores possible connections between types of illnesses and what the body is trying to convey. One patient story involves a middle-aged man with diabetes who needed dialysis and was refusing treatment. Rather than write the do-not-resuscitate order, the author sat down and asked if there was anything the patient wanted to complete before he died? This seemingly simple gesture cascaded into a life-changing event that included dialysis, family reconciliation, and a new-found joy of life.

This is a fascinating and thought-provoking book. Rather than race through it as I do in my usual reading mode, I found myself stopping and doing a lot of self-examination before I could go on to the next section. Since reading it, my approach to patient care has subtly changed. By quieting my thoughts, being present, and being prepared to listen, I find myself energized rather than drained at the end of a long clinic day.

I applaud the author for writing a book that addresses this elusive and somewhat-frustrating topic. For me, an important message is that we do not need to have all the answers nor do we need to agree with each other’s ideas to assist our patients and ultimately ourselves along life’s entire path. I would recommend this book to all my nephrology colleagues.

Deborah Brooks, MSN, RN, CNN, ANP
Nurse Practitioner/Research Coordinator
Division of Nephrology
Medical University of South Carolina
Charleston, SC
Member, ANNA’s Palmetto Chapter