This book is almost on track to be a potential game changer.
The title is engaging. However, on my first reading, I found the book a little difficult to follow. Dr. Gawande has essentially written about two distinct components of “the modern experience of mortality” – The first five chapters discuss aging and the optimization of the life experience of aging patients . The second portion of the book deals with care in advanced disease – mostly in the context of wide spread Cancer.
As has been his habit in his other books Atul tells stories of his own experiences and interviews he has done with some innovators in the delivery of care. Keeping in mind that the pleural of anecdote is not data, he uses stories to make his use of data more personal and meaningful to a lay reader (there are 12 pages of citations – pp. 265-277). As usual, Dr. Gawande is thoughtful. In this book he may be even more provocative than he has been before.
He has investigated the nursing home concept as it applies to care of elders who have lost the capability of being fully independent because “things fall apart”. He makes a clear argument that aging is not a medical condition, but the result of “the accumulated crumbling of one’s body systems”, including unsteadiness, loss of position sensation, loss of flexibility, and muscle weakness. He also notes that there is a time related deterioration of many conditions with the passage of time that is called the “natural history” of the disease. Illnesses such as Heart Failure, Emphysema, and Atherosclerosis are examples of these. Some forms of arthritis are also often considered a natural component of aging. Dr. Gawande includes stories of many facilities that have improved the experience of living in older age, by assisting with living, not assisting with dying. He makes the distinction between helping people live in old age or managing the dying experience. In the dying experience, where the goal is “patient safety”, often elders end up with a ”life designed to be safe, but devoid of anything that they care about.” He quotes Bill Thomas, MD who describes what he calls the three plagues of Nursing homes for the aging person: “Boredom, Loneliness, and Helplessness”. There are stories of facilities for elders that help some seniors live better, including Park Place in Oregon, Chase in upstate NY, NewBridge on the Charles in Boston, and Peter Sanborn Place in Reading MA among others.
The second portion of the book addresses a concept that physicians often refer to as “futile care”, almost always related to diagnoses of cancer. He is not addressing things such as treating cancer when it is first diagnosed in early stages, but more the continuing use of newer therapies that may prolong life by a short period of time (often measured in days or weeks only) at the expense of quality of life resulting from the side effects of treatments. He uses his own father’s clinical condition relating to a tumor in his cervical spine, that he lived with for a prolonged period because he still had life experiences that he wanted to accomplish. Dr. Gawande introduces us to Dr. Susan Block who had helped develop the concept of asking what is important to people who may have to make hard choices . Keeping the discussion in line with the individual patient’s values and goals, as a means of directing treatment decisions, should increase patients’ quality of life in the times of difficult conversations. He also discusses the benefits of hospice care and making advanced directives – using the experience of LaCrosse, WI where there was a concentrated effort to improve end of life discussions so that physicians knew what should be considered if and when a patient came for care. He also discusses several data sets that suggest that hospice care is associated with increased, not decreased, longevity in patients with advanced disease that is not responding to “modern medical therapy”. Gawande then points out that he is not suggesting giving up early, but that the physician directing care should be like an army general … “in a war that you can’t eventually win, you don’t want Custer. You want Robert E. Lee, someone who knows how to fight … and how to surrender when you can’t” win.
In several parts of the book, I teared up, but then I am a softy.
If I had my choice, I would have liked some help in keeping track of the characters in his stories and some of the concepts that he is discussing. I counted at least 12 different patient stories, which were sometimes scattered throughout the book. There were over 8 physicians and several other key people. An index might have made keeping up with them all a little easier. Also, I would have found it easier to understand the book if Dr. Gawande made explicit the two different segments of his arguments.