I would like to thank Mary Wieneke, PhD, and Philip Cushman, PhD, for giving me the wind I needed to fill my sails when they sagged so I could do what I believed needed to be done, even though at times on this journey land was far from sight. I thank the hospice patients and families and the grieving young people with whom I have been honored to work for their courage and honesty. They continue to inspire me. I would like to dedicate this book to my mother, Elizabeth Louise Hudson McCune, who gave me the gift of understanding the necessity of preparing for dying and showed me how to live and die courageously. My work on this book is dedicated to her. I would like to express my deepest gratitude to Dr. Leah Rogne for trusting me enough to embark on this project together and for mentoring me as a budding editor and author. Thank you, Steve, for traveling with me on this journey. Thank you, Dad, for believing in me.
—Susana Lauraine McCune In addition, we thank our editor, Sheri W. Sussman, and all the staff at Springer Publishing Company for their encouragement and support in making this project a reality. Most importantly we thank the authors who contributed to this volume for their dedication to research and practice on EOL care. Working with them has been a great pleasure, and we have learned so much from them in the process.
Finally, in memory of those who have gone before, and for those who will come after, we encourage you to communicate with loved ones and professional caregivers about advance care planning. We encourage you to communicate about matters of life and death.
Introduction: A Matter of Life and Death
Susana Lauraine McCune
The principle of respect for autonomy, captured in ideas of negative liberty and noninterference, has a particular appeal in the United States, which is founded on the belief that all people have the right to live as they choose. Autonomy is a formative notion on which U.S. culture and our system of health care is largely based. Such a preoccupation with autonomy obscures the fact that we ultimately lack control over aging, illness, disability, suffering, and death. To admit this lack of autonomy is to admit that the human condition is beyond our control; to relinquish autonomy is to acknowledge our deep vulnerability . . . .
Martha B. Holstein, Jennifer B. Parks, and Mark H. Waymack, 2011, pp. 11–12
At the end of the day, an advance directive is just a piece of paper. But an effective program for advance care planning is an opportunity to help people grow, create meaning, and make their lives (and deaths) better.
Benjamin H. Levi and Michael J. Green, 2010, pp. 8–9
To advocate human conversation as the means to restore hope to the future is as simple as I can get. But I have seen there is no more powerful way to initiate significant change than to convene conversation....
It is always like this. Real change begins with the simple act of people talking about what they care about.
Margaret Wheatley, 2009, p. 22
PLANNING FOR ENDINGS
One of the most difficult, terrifying, and confusing moments of life is when a life-threatening accident or illness strikes you or a loved one. Among the most challenging aspects of these events is that people are faced with decisions about accepting or foregoing, initiating or withdrawing aggressive medical care. These options require complex decisions.
In the midst of such confusion, patients and their loved ones are not only confronted with a life-threatening illness and complex decisions about care; they are also forced to deal with a medical system that they often experience as unfamiliar and impersonal. At these times, a myriad of perspectives and needs converge. Yet, if plans are not made in advance, patients, their loved ones, advocates, and clinicians are forced to make decisions about medical care quickly, under less-than-desirable circumstances.
The growing availability of sophisticated life-support technology only increases the likelihood of such tough decision making. These evermore regularly occurring situations call for Americans to face end-of-life (EOL) decisions before an emergency—to acknowledge their mortality and begin thinking about and planning for medical care through life and death in advance. The optimal time to make these decisions is not during a crisis, as these critical care choices can result in irrevocable consequences.
Our current conceptions in the United States about how health care is given, along with the consequences of our lack of communicating about considering medical care in advance, have implications not just for individuals, but also for society as a whole. Due to these conditions, both individuals and communities bear the costs—both emotional and physical, as well as financial—of not planning in advance for the medical care one would desire to receive at EOL.