If You Knew Suzy: A Mother, A Daughter, A Reporter's Notebook, by Katherine Rosman, Harper, 2010. ISBN#978-0-06-173523-3. Amazon link. Less of a book review and really more of an encouragement to read this book....
If You Knew Suzy is a beautiful book, that is also important. These two attributes don't often describe the same book for me. By beautiful, I mean that it is well written and tells a story that drew me in, and touched me deeply. If you can read this one and not cry, there is something wrong with you. It is important, because it provides an honest glimpse into the health care system of the United States, or more accurately, into the system of how care is provided to persons who are said to be 'dying.' Expectations, hopes, fears and realities are all described as they occur, often in disturbing detail, and with an honesty that I can only describe as ruthless, and appreciated. The book is at the same time funny and irreverent.
This book is worth reading for its beauty alone, but you would then be avoiding the many profound questions raised in this book about the how, where and why of our health care system; especially care provided to persons with advanced life limiting illness. If you bring to the book pre-conceived notions of how people should react when facing their own mortality, or a situation that seems 'hopeless' the book provides an important reminder that people are distinct, and don't fit into neat boxes or roles. At the same time, the individual decisions each of us make affects all of us when it comes to health care decisions, both on the macro level as well as what our choices imply for our family and friends.
I met Katie Rosman in May, 2010, when she came to Duke University's Institute on Care at the End of Life to give a presentation about her book to a group of providers and advocates for end of life care. This is a round table, blue ribbon type of group that is seeking to advance the research basis of end of life care and to promote better policy. From different perspectives, the participants are mostly interested in improving the quality of life of persons who are suffering.
Into this group, with much experience in the reality of dying and how care is provided just before death, Katie managed to bring a fresh voice, the story of her mother's death from lung cancer. While her story and this book provides glimpses into the medicalized world of an ICU and interactions with physicians and nurses--some good and some bad--the story of Suzy's death (Katie's mother) is told as a part of her life.
The occasion of her mother's illness and death motivated Katie Rosman to investigate chapters of her mother's life about which she had not know a great deal. And it seems that in her mother's death she seems to come to know her mother much better. Intertwined into the story of the decline of her mother's health and and the families attempts at navigating the health care system are glimpses of Katie's childhood, her relationship with her sister, father, stepfather, and mother all told to honor the memory of her mother and to preserve it for grand children that will never meet Suzy.
As a person who spends quite a lot of time thinking about policy related to the provision of hospice and palliative care, and who believes that our culture is profoundly bad at having honest and thoughtful discussions about the limits of what medicine can do, there are all sorts of lessons that could be drawn from this book. Bashing off a list of policy changes that I was for before I read the book and claiming the book proves I am right seems inappropriate. I will just leave it where I started: If You Knew Suzy is a beautiful, and important book.