“…a rare treasure. This book shines with compassion, wisdom, humor, and truth. I believe it should be must reading for everyone. Really!”
Christiane Northrup, M.D.
ob/gyn physician and author of the New York Times bestsellers:
Women’s Bodies, Women’s Wisdom and The Wisdom of Menopause
Don't Die without Me!
Damiano de Sano Iocovozzi, MSN, FNP, CNS
Originally published as Sooner or Later
Published by Transformation Media Books at Smashwords
Copyright © 2011 Damiano de Sano Iocovozzi
Discover other titles by Transformation Media Books at http://www.smashwords.com/profile/view/TransformationMediaBooks
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Dedication
To Thomas Walls and Drew Johnson
who teach me constantly how to live.
Table of Contents
Chapter One: Today is the First Day of the Rest of Your Life
Chapter Two: Say What You Mean and Mean What You Say
Chapter Three: Medical Goals, Ethics and You
Chapter Four: Your Preferences, Your Quality of Life and Socioeconomic Factors
Chapter Five: The Questions to Determine If You Are Near the End of Your Life
Chapter Six: Your Advance Health Care Directive, the Code Blue, the ICU and a Description of Life on a Breathing Machine
Chapter Seven: Hospice is a State of Mind
Chapter Eight: Conclusion and Going Forward
Don’t Die Without Me! has been on my mind for the last 23 years working full-time in the health care setting. I have worked as a registered nurse, clinical nurse specialist, family nurse practitioner and college lecturer over my career.
Here I would like to thank those many patients, family members and students whom I got close to during some very bad times and very good times. During those years, I believe my knowledge and skill helped my many patients find their appropriate levels of care, be it for a restoration of health or entrance into a hospice program for their final months.
To those many families and friends, thank you for letting me share those most precious moments with you.
To my parents, Vincent and Rose, and my siblings, Mary Magdalene, Cosmas, Gerry and Vincent, thank you for being my first teachers and friends. Thank you for the support, love and, humor you have given over the years.
To my maternal grandmother, Mary Terzo DiSano, thank you for showing me what was truly important from an early age. You approached life and death with grace, elegance and dignity.
To my Italian family, Maria LoRe, Ignazio LoRe and Francesca Ancona, a special thank you for all the family holidays through Italy and France. Thanks for teaching me also at an early age to live within my means and to find joy in the intangible.
A special thank you to Jeff Jones, my neighbor and his friend, Maribeth Pyne, who found me my most wonderful publisher, Ginny Weissman. If it weren’t for Jeff and Maribeth, Don’t Die Without Me! never would have been born.
To all my neighbors and friends, thanks for the encouragement as I read Don’t Die Without Me! over and over to you.
By Major Kathleen White, RN MS FNP
Over the past 100 years, demographic and historical changes have significantly altered life expectancy, the size of the population over 65 and the experience of death and dying. Advances in health promotion and medical interventions have resulted in more individuals living longer with chronic conditions and degenerative diseases. This can present individuals and families with complex and difficult decisions about medical treatment to extend life, as well as the timing and setting of the dying process.
Don’t Die Without Me! is a definitive, focused resource for individuals, their friends and families to successfully navigate medical decision making in end-of-life care. The compassionate examples and targeted lists of questions for the health care team serve to empower the seriously ill patient, and their caregivers, in their decision making toward improving the quality of life on this chapter of their journey.
The author’s vast 23 years of clinical experience in advanced practice nursing, critical care and as a primary care provider brings a new and welcome approach to addressing the problems, challenges, stigma and uncertainties facing individuals and their care givers. It assists them in making informed choices about the most appropriate level of care that accommodates their needs and wishes. Through contemplation of one’s mortality, an individual can begin to identify and articulate preferences that support a “good” death as described by the Congressional Research Service on End-of-Life Care, typically described as free from pain and suffering, in the company of loved ones, reflective of peace and meaning for the individual.
I am grateful for the opportunity to use this valuable resource in my clinical practice and eagerly anticipate that primary care and specialty practices, palliative and hospice care programs will consistently offer this unique tool to their clients.
I’d like to share a moment from my own childhood, which was spent growing up in upstate New York. As a little boy, I followed my father around a lot, especially when he worked as a sexton in a local cemetery digging graves by hand around 1957. I was about six or seven when this tipping point arrived which changed everything about my life and how I view the urgency of living every day with joy and satisfaction. I asked my father everything, especially to the point of being an annoying seven year old. We often walked past our own family plot where my father’s parents are buried which is the entrance to the old cemetery.
"Dad,” I asked, “What is that mark between the years of Grandma Mary’s stone? What does that mean?”
“That’s the space of Grandma’s life. 1899 was the year she was born and 1951 was the year she passed away, less than one year before you were born. The little mark is called a hyphen but it means everything.”
“What do you mean, everything? That little dash!” I exclaimed.
“Yes, everything. Those were the years Grandma had the privilege of being alive, her time spent on earth. Those years mark her life span.”
“Oh, I see. Since I was born in 1952 and could live for 70 years, that hyphen will just go to 2022? Right?” I asked.
“Right, but it means much more. What kind of person will you grow up to be? Will you make others happy when you arrive, like Grandma did, or will you make others happy when you leave? Will you be remembered like her with affection and grateful to have known?” answered my father. That small exchange was my tipping point.
I’ll be many things to you while reading this book: a trustworthy old friend, a doting godfather, or a battle-scarred registered nurse. I will hold your hand. Now just call me Dom.
“A single event can awaken within us a stranger totally unknown to us. To live is to be slowly reborn.” ~ Antoine de Saint-Exupery
If you suffer from a life-threatening illness and are told by your health care provider (physician, physician assistant, or nurse practitioner) that you may have little chance of a medical cure or going into remission, Don’t Die Without Me! is my gift to you. It is written for a newly-diagnosed, terminally ill person like you or a family member, to help guide you to a place of rational decision-making. This way, you can live your life as fully as possible, and without fear.
This book also serves the loved ones of those that are terminally ill and, believe it or not, anyone who enjoys good health, and wants to live life more deeply, more in the present moment and more courageously. I want to help you and your family cope with and understand what you’re facing.
For those who might be confused about the meaning of a diagnosis, this book will help you frame the important questions you need to ask your health care providers to completely understand the estimated length and quality of your lifespan. Take this e-book with you on your phone or other e-book device along with a notebook to write the answers for the questions provided in later chapters.
One of my motivations for writing Don’t Die Without Me! is to protect you from desperate choices based on erroneous information, and the pipe dreams of an unachievable cure. I offer you my 23 years of knowledge and experience at the bedside of my patients and friends. It is my hope you will know and see where you truly stand, and understand what you can expect in the near future. I also want to help you recognize the false promise of a cure and be empowered to walk away from the temptation of pursuing one – which I call a fool’s errand. My goal for you is to take control today – right now! – and remain there, sane and rational.
Try to differentiate yourself between being a patient – one who has the potential for a cure or a remission – to a pilgrim – one who can no longer achieve a cure or remission. It may help to see yourself as a pilgrim, embarking on a new journey, instead of expecting to be cured and being able to resume your old life. For a pilgrim, the way is different. No one can describe exactly what lies ahead. Every person’s experience is different. However, Don’t Die Without Me! will empower you to remain in command, without false illusions or fear.
It is my sincere hope that this book can tell you when it’s necessary to go to a Plan B or Plan C. It is written to guide you to a place of acceptance as you realize that sometime in the future, you will cease to be physically alive. Until then, use the diagnosis to create your pilgrimage of a lifetime, a road each of us must take and take alone.