Customer Reviews

Notes from the Waiting Room: Managing a Loved One's End-of-Life-Hospitalization (includes Choosing End-of-Life Care Without Hospitalization)

5 star:		(9)
4 star:		(2)
3 star:		(1)
2 star:		(0)
1 star:		(0)

 

 

Some hospitals have a way of humbling people in an intimidating manner, making them feel small and overwhelmed. Unfortunately, loved ones navigating end-of-life journeys with hospitalized patients feel that way too often. Author Bart Windrum experienced this with his terminally ill parents. His book results partly from surviving preventable hospital stress and wanting to help others in similar situations.

Notes from the Waiting Room is peppered with personal stories from the author's experiences representing his parents. Chapter summaries, explanations of terms, and detailed background information prepare readers for deeper insights about hospitals and the medical system. Without condemning all hospitals, Windrum describes numerous problems that permeate long-term hospital stays of frustrated patients and their caregivers. Lack of real communication by healthcare providers, fragmented treatment, and hygiene breaches are a few mentioned. Assertive strategies for improving the odds of success and honoring patients' rights are also explored.

This book is especially helpful in clarifying roles of caregivers as they stumble through a medical maze of patient care, forms, and death-related issues that confront them. Their preconceived expectations about hospitals could be replaced with shocking realizations causing them to function cloaked in unaccustomed feelings of helplessness and ignorance.

Windrum concludes that those who do not want to die in hospitals should have the Option to Die in PEACE: Patient Ethical Alternative Care Elective, depending on their declining terminal health and age. He explains his support for patient-directed dying that includes hospice and palliative care. He also examines medical system reform. Notes from the Waiting Room provides extensive information for anyone interested in knowing more about end-of-life options without hospitalization.

Frances Shani Parker, Author of "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes"
[...]

Published studies have demonstrated marked shortcomings in end-of-life care in the hospital including untreated pain, insufficient communication and support around difficult medical decisions, and high financial burden for families. Notes from the Waiting Room is a powerful and important book. It eloquently personalizes one family's repeated journey through the all-too-common chaos and distress associated with end-of-life hospitalizations. Notes provides both practical suggestions for patients and families. Equally important, it challenges the medical profession to find better ways of ensuring "care" when "cure" is no longer possible, and highlights the importance of the emerging field of palliative care.
Daniel Johnson, MD
Palliative Medicine Physician
Director, Life Quality Institute

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.

Notes from the Waiting Room is an excellent resource for those with aging relatives and is an inspiring motivation for all of us to realize that it's never too early to think about our own health care delivery choices. The author's personal experiences and clearly-stated stories and examples remind us that the most opportune time to address these issues is well in advance. This book can be utilized as a gentle way to broach end-of-life decisions with loved ones and ensures that the reader won't overlook any important subjects. The fact that the author has lived through these experiences with both of his parents gives him credibility and authority and the time and effort he has devoted to researching his subject matter is evident. Notes is easy to read and is written in a way that the average person will easily comprehend. Bart Windrum has done us all a great service by sharing his experiences and his expertise with the goal of making our inevitable journey down this path much easier.

The book is in great condition, but the context was not what I had hoped it to be, even when ordering it and looking at what was inside I thought it to be a book that would flow and that I would see a different perspective. The book was choopy at best, no personalization. Pretty much a, "how to" book. I was disapointed with this and the other book I ordered at the same time.

It's an experience no one wants to face, but will likely have to at some point. "Notes from the Waiting Room: Managing a Loved One's End-Of-Life Hospitalization" is a guide for those who are faced with a most sensitive time of their lives, when they are forced with managing the business end of a loved one's final days. Knowledge is power in this situation, and letting one's emotion run wild will inevitably lead to trouble. With key tips on understanding this whirlwind of decisions and what major situations may be placed in one's lap, "Notes from the Waiting Room" is a fine read to prepare oneself for the inevitable, but unthinkable.

Notes From the Waiting Room contains much helpful info for people like me who think they are ready for end-of-life issues. Thanks to the book, come to find out, it's likely we are not prepared either emotionally or legally. I also LOL'd at some of the things Windrum, the wordsmith, has slipped in there. My copy is now quite "used" with circled and underlined phrases, highlighted paragraphs and folded corners. It would benefit every family to read "Notes From the Waiting Room" so that each member may know what dog-eared page the other is on. I recommend this book as a gift for the ones you love. -Jo Myers

Notes from the Waiting Room provides an unflinching view of death in a hospital. Having experienced "almost death" at and by many hospitals, it is a wake-up call for baby boomers about what they face in years to come. I hope they are more willing to look at the issues with hospitalized dying than my personal experience has lead me to believe.

The most compelling sections for me dealt with the act of dying and the poor treatment of both family and patient by hospital institutions and providers. The "hair-splitting" by the treatment team was horrifying. Bart has also provided us with some new language to use when describing the hospital team, the services they do and don't provide as well as a goal - dying on our own terms.

I learned from Notes from the Waiting Room and, as a result, will hopefully be better prepared when I face the inevitable with my family.

An advocate of natural, compassionate health care, I read "Notes from the Waiting Room" for two reasons: my parents are aging, and I am aging too. I found Bart Windrum's experience and research to be valuable and meaningful for planning a dignified, peaceful end-of-life transition. "Notes from the Waiting Room" provides clear instruction for choosing a hospital, working with hospital personnel, and managing legal aspects at this sensitive time-if hospitalization is your choice. I commend Windrum for going further, showing us how to avoid institutionalization and hospitalization, a pathway he's named "The Option to Die in PEACE." This book should be read by every hospital staff person, every hospice worker, and every caretaker of the sick and elderly. "Notes From the Waiting Room" is a useful tool in a time of crisis-or better yet, for advance preparation for a unique and irreplaceable time of life. (I would give this book 4-1/2 stars, but Amazon doesn't have half-stars.)

Great changes happen from the grass roots. Bart Windrum's Notes from the Waiting Room probes into end of life decisions and the care (or lack of it) that is delivered in the process. If you ask anyone who is in good health how they want their final few months to be, they will most likely tell you that "dying peaceful, and with dignity, is at the top of their list." Unfortunately, that's not the way it happens. Windrum writes from first hand experience--both his parents died within a year of each other. His thought-provoking, timely and elegant book exposes the high level of confusion and arrogance directed toward the patient and family. His recommendations to bring common sense to the end of life scene is long overdue. It should be read by every health care professional who is involved with direct patient care, administrators in a hospital, hospice or long term care facility, and of course, family members who have aging parents.

Judith Briles, author of
Zapping Conflict in the Health Care Workplace
The Confidence Factor