Given that death is a certain outcome in life, we seek the best way out as possible. What is a good death? According to Jeff Spiess, MD, author of the book Dying With Ease: A Compassionate Guide to Making Wiser End-of-Life Decisions, a good death is one in which pain and suffering are minimized and which matches the preferences of the dying person and his or her family. He notes it is obvious that the ones who know the most about what is important at the end of life, what makes for a good death, are those who are dying. However, he points out, it has only been during the past few decades that anyone has bothered to ask them about it.
Title: Dying With Ease: A Compassionate Guide to Making Wiser End-of-Life Decisions
Author: Jeff Spiess, MD
Publisher: Rowman & Littlefield
Publication Date: October 2020
Price: $30.00, hardcover, 204 pages
According to Dr. Spiess, a large study published in JAMA in 2000 asked people facing death from chronic diseases (a majority with cancer) what their major concern was. The number one answer came as a surprise to much of the medical community. It’s not pain control, spiritual comfort, presence of family, or saying goodbye; it is, in fact, to be kept clean. Dying With Ease bolsters our knowledge of dying of chronic disease and gives readers an excellent guide to how we can make compassionate and wise decisions for those at the end of life.
Early Hospice Enrollment Needed
There has been a plethora of books published on end-of-life care; however, the community still needs more information and guidance. For instance, studies indicate that more than 70% of patients with cancer may have moderate to severe pain during their illness, and many fear pain more than death itself. Despite our ability to palliate pain, only a small proportion of patients with cancer pain receive adequate analgesia. One reason for a lack of adequate end-of-life care is also well documented: underutilization of hospice services. Dr. Spiess, who was the long-time Medical Director of Hospice of the Western Reserve in Cleveland, brings his wealth of knowledge to this important issue.
Dying With Ease is a concise book, organized into nine chapters. It is written in a style that both professionals and lay readers will find accessible and informative. The author, not surprisingly, dispels some of the myths that still hamper early hospice utilization; he also explicates the value of hospice in our health-care system, especially given our rapidly aging population. Early on, he notes a serious disconnect within our society, which undermines the delivery of quality end-of-life care. At least a quarter of all cancer deaths occur in the hospital setting, where many imagine a “good death” will occur. However, the author writes: “Most patients I cared for who were transferred from the hospital to our hospice inpatient unit reported that while they were hospitalized their personal needs and questions were seldom satisfied…. So many of my patients who were previously in the hospital setting said that while there they felt like they were being abandoned.”
Call for Palliative Care Experts
Perhaps the best and most valuable chapter in this excellent book is chapter 4: “Suffering.” Fittingly, this brutally honest and informative section begins with a quote from Sigmund Freud as he neared the end of his battle with oral cancer: “How long must I continue to suffer such intolerable pain? When will I be permitted to accept ‘sweet peace’ or to even ask for it?”
Dr. Spiess speaks about suffering with authority from the perspective of an oncologist turned hospice director. He notes that his patients nearing the ends of their lives commonly told him that it was not dying they dreaded but suffering. Although unremitting pain was the number one concern, Dr. Spiess stressed there is a distinction between pain and suffering. For instance, a woman having a difficult childbirth could be in significant pain but may not suffer, as the pain is part of a greater joyful experience, unlike the woman with late-stage breast cancer.
“Making plans for your death is not conceding because death becomes less frightening, and you can better focus on living.”— Jeff Spiess, MD
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If any one message should be gleaned from this book it is about the absolute need to train more cancer pain specialists. In many settings, cancer pain is extremely difficult to properly diagnose and relieve, especially some locations of neuropathic pain. However, many patients with cancer treated in the community setting may not have access to experienced specialists in pain management.
Looking for Relief at Any Cost
Again, within chapter 4, the author does a deep dive into the problems associated with intractable pain, which is arguably the most difficult issue to deal with in palliative care. “Some terminally ill patients with weeks or months to live, despite our efforts to control their pain, still find their suffering intolerable and desire another choice…. Suffering patients often consider actively ending their own lives,” writes the author as he wades into very difficult terrain. For instance, there are numerous studies that indicate once a patient’s psychiatric needs are addressed, suicidal ideation may no longer occur.
Dr. Spiess also addresses the thorny issue of medical aid in dying, and kudos to him, for it’s a subject many shy away from. He references the case of Brittany Maynard, a 29-year-old schoolteacher diagnosed with glioblastoma, who eventually relocated to Oregon to take advantage of its physician-assisted suicide program. It is a compelling story that needs to be retold to generate a national conversation about how we view suffering, death, and human autonomy.
As the author notes at the end of his valuable book: “Making plans for your death is not conceding because death becomes less frightening, and you can better focus on living.”
Dying With Ease is not without its flaws; at times, it makes the complex too simple. However, that’s a small gripe for such a solid book on a subject that resonates with the oncology community. It is a recommended addition for the readership of The ASCO Post.