Sunday, August 24, 2008

Notes From the Waiting Room: Managing a Loved One's End-of-Life Hospitalization by Bart Windrum

Book Review by Zinta Aistars

Paperback: 336 pages
Publisher: Axiom Action (February 1, 2008)
Price: $25.00
ISBN-10: 0980109000
ISBN-13: 978-0980109009

Perhaps no one statement that author Bart Windrum makes in his examination of how the United States health care system approaches end-of-life hospitalization is more important to understand than, simply, "death is a part of life." Yes, and he continues, in his Notes From the Waiting Room: Managing a Loved One's End-of-Life Hospitalization, that all doctors should be trained for it.

Overly simplistic? Think about it. Think about the Hippocratic oath our physicians take upon themselves as they enter their medical careers, "do no harm." If our definition in American society is of death as a state that is to be avoided at all costs, and life as a state that is to be prolonged at all costs, then doing no harm becomes a tricky proposition. Harm by whose definition?

Windrum explores how our health care system treats death and the dying, and those who care about the dying, first and foremost as an adult child of two parents whose death he has experienced in every excruciating step. These were not peaceful steps. In his Notes, Windrum shares with us how often and how, to his view, unnecessarily these final steps were made painful, confusing, alienating, and undignified. All because our typical approach to death is one of avoidance. Within a culture that is obsessed with staying young forever (i.e., never dying), to over-the-top violence in our various forms of entertainment that gives us a very false and unrealistic concept of death, to an overall cultural avoidance of facing death at all - we treat death as unnatural. We either avoid it completely or we see it as something other than what it is. Windrum consistently makes the valid point throughout his book: death is natural. It is how we treat death, how we approach it, that too often becomes unnatural.

So that others may not have to experience the indignities and sometimes black comedy of errors that the author experienced with his own family members and their hospitalization, Windrum has written this well researched and thought out book. It begins with establishing his own experience with the death of loved ones. From that, the author goes on to recommendations on how to become an effective personal representative, what essential legal documents must be in place (and often championed and reviewed) when death becomes an unavoidable reality, how to effectively manage hospitalization, the role of family involvement, the importance of "forecasting" (presenting all possible outcomes to those involved in the dying of a loved one so as to make timely and reasonable, informed decisions) and ethical support, the too often avoided descriptions of what death is really like (forget the movies), and, finally, his proposals for change. This includes PEACE, or the Patient Ethical Alternative Care Elective. Windrum also makes proposals and suggestions for the health care industry (by which time, the word "industry" in this usage seems wincingly apt) and for you and me - every day people who at one time or another will have to face death, whether that of a loved one or one's own.

In this journey of an adult son's witnessing the deaths of his mother, soon followed by that of his father, Windrum brings valuable insight. At a time when this country's health care system (to whom it is provided and how it is provided) is in such great need for reassessment and improvement, one can only hope that enough of us will make our voices heard both in the political arena as well as in our own doctors' offices, that we might accomplish and insist upon change. Change, as Windrum reminds us, occurs when continuing to do the same thing becomes more painful than change itself is perceived to be. And it is increasingly painful to see, or to be victim of, health care that is evolving in terms of medical technology, while too often ignoring the simple dignity of the human condition and the validity of one's own choices over how to live and how to die.

Our medical technology and expertise is keeping us alive longer and longer, yet is that always the best option? Even when legal documentation is in place for "do not resuscitate," Windrum shows how this may not always be enough to prevent unnecessary procedures and painful outcomes. He reminds us of the importance of every patient having his or her champion at their bedside, without which an endless stream of indignities if not medical errors might take place, in spite of legal documentation.

A better approach, beginning with the acceptance of death being a natural part of life, may be to take a closer look at how we understand hospice and palliative care. And, how we protect an individual's choice in how to die. Once a diagnosis of terminal illness has been made, Windrum argues, to make the choice to die with dignity, at a point in time when one is ready, should not be considered suicide but a choice in the manner of how one wishes to conclude a life.

If there were moments in reading this book that I felt the author may be too harsh and cynical about modern health care, that is, the health care professionals that care for us (my own career path often crosses with those in this industry, most all of whom strike me as persons who have chosen their careers driven by their caring hearts and deeply held motives to ease human suffering), then I couldn't help but think he brings to surface many very important suggestions for improvement. And improve we must. Our population is fast aging. Our medical technology is fast advancing, keeping many of us alive longer and longer by various artificial means.

We must have a new and better understanding about how we approach death and dying. If Windrum accomplishes nothing more than to encourage us to get our own legal documentation in place(and there are five such documents that we should have completed) to ensure our personal choices are taken into consideration when that inevitable moment arrives, this book is worth its price.

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