Notes from the Waiting Room: Managing a Loved One's End-of-Life-Hospitalization

by Bart Windrum

Act effectively during a loved one's end of life...more control; less heartache; right closure. Notes from the Waiting Room offers unique contributions to American families. Written from a lay person's experience, research, and perspective, Bart Windrum speaks to lay people about crucial end-of-life issues in a clear and direct way...in a way that institutions and professionals either overlook or are unwilling to bring to life. Protect vanishing precious moments. This one-of-a-kind conversation dissects and clarifies hospitalization experiences, and discusses end-of-life choices. For every patient-family entering the end-of-life crucible. It is possible that a loved one's terminal hospitalization and demise will go smoothly, with well-considered communication, excellent treatment, and compassionate care for the patient and family alike altogether, a humane container for a loved one's passing. It is possible that your patient-family will experience exactly the opposite absent or dysfunctional communication, problematic treatment, and a dispassionate absence of care that feels like abandonment. These conditions result in needless shock and harm, and a lingering, additional sense of loss. Notes from Bart Every hospitalization is serious. Any hospitalization can become very serious. End-of-life hospitalizations are particularly challenging especially those that turn suddenly terminal. During end-of-life hospitalization, only two things really protecting and using every available opportunity to commune with your loved one, and obtaining treatment direction from your loved one. These opportunities can be infringed upon. They can and do vanish. If we don't utilize them, our loss deepens, lingering in our hearts and souls with additional weight. How can your patient-family avoid this outcome? By learning how to eliminate needless and detrimental systemic shocks. Notes from the Waiting Room focuses primarily on understanding how hospitals really function and how patient-families can effectively function within them. Notes' major topics
-- how to be an effective personal representative
-- the essential legal documents
-- the distinction between treatment versus care and how that affects us
-- forecasting future events and minimizing needless, harmful shocks
-- obtaining decision-making assistance and family support from hospital personnel
-- a potpourri of hospital how-to's
-- a complete, in-depth, one-of-a-kind discussion about quandaries related to the intersection of patient directives, treatment goals, and provider prerogative around the application of resuscitation technologies
-- the nature and realities of hospitalized dying. Additionally, Notes offers a comprehensive discussion about how to consider, and perhaps arrive at, a decision to choose end-of-life care without hospitalization. Have we struck an unexamined Faustian bargain? Does using medical technology to extend our lives imply a requirement to die in the hospital or nursing home? The Option to Die in PEACE (Patient Ethical Alternative Care Elective) offers a framework for choosing a non-institutionalized end-of-life pathway. Notes concludes with fourteen concrete medical reform proposals, an annotated bibliography, thoughts for healthcare providers, and a 38-page index. A 70-page companion eBook, How to Efficiently Settle the Family Estate , is available at the AxiomAction website, as is more information about both books. Acting on any one of this book's revelations will save your patient-family from angst and heartache that can linger for years afterward.

336 pages, Paperback

First published February 1, 2008

Reviews

[Zinta]

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 thoughtout 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.

[Julie]

Published about 10 years ago, so it is hard to say if the situation is better or worse now...I'd say it is a "must read" for American baby boomers...sobering