This book is intended to help facilitate meaningful communication and effective decision making about medical care at end of life (EOL). With an aging population and rapidly expanding life-saving technologies that transform how we deal with life-threatening illness at any age or stage of life, concerns about how we want to live at the end of our days become more and more crucial for a growing number of people in our communities. However, research on EOL decision making shows that people have difficulty both asking and answering important questions about EOL care for themselves and for their loved ones. Many people are overwhelmed by the complexity of the health care system and do not know that they have the right to decide what kind of care they would like to have when they are critically ill or how to indicate their desires to their health care providers.
Advance directives (ADs) (living wills and health care proxies) have received great attention in recent decades as tools for providing for selfdetermination and quality of life near the EOL. Yet, despite years of enthusiastic advocacy by major health care organizations, they have not been as widely used as hoped. Due to complexities involved in making and documenting EOL care choices, lack of understanding of how they should document their choices, and discomfort about talking about dying, a majority of Americans face life-threatening illness without having a plan in place. Also, due to communication problems among patients, families, and health care providers and lack of awareness of how advance care planning (ACP) can best be done, people who have planned ahead and have ADs in place often do not get the care they had hoped for during the dying process. Furthermore, it has become more and more apparent that the focus on autonomy and self-determination at the expense of any other ethical principles or human motivations may not take into consideration the variety of ways that people approach, with their loved ones, the profound and complicated challenges presented as we face our mortality.
Featuring the voices of scholars and practitioners from a variety of disciplines, this volume provides a history of ADs and describes barriers to effective ACP. Contributors share effective communication strategies that address some of the shortcomings of a forms-completion approach to EOL planning and show how a focus on facilitating meaningful conversations between patients and their families and among patients, families, and their health care providers can provide for better outcomes at the EOL. Authors describe innovative regional or statewide initiatives for promoting effective ACP and present some “big ideas” for how we as communities and as a society could be charting a new course for how we deal with life-threatening illness, dying, loss, and death. Those who are seeking guidance for their own ACP or who want to be a part of initiatives to help communities address these important issues will find a wide range of contacts and resources.
At the heart, this project is intended to provide individuals with the awareness of the need to plan ahead for their EOL and the tools to be effective in doing so, and to provide professionals with key strategies to be successful in facilitating communication with patients and families. Too often, after experiencing the death of a loved one, people will say “if I had only known . . . ” or “if we had only talked . . . .” Meaningful conversations with one another about what we value and what is important to us in life are the basis for an effective ACP process. We hope that readers—professionals, educators, and members of the general public—will find the perspectives, strategies, and tools (as well as the vision) the authors present in this volume to be helpful in providing a path to a dying process without regret.
Leah Rogne Susana Lauraine McCune
I would like to thank the many elders I served as a nursing home social worker for the wisdom they offered on how to live well until we die. I am forever grateful to my mentor Michelle Matchie for introducing me to the heart and soul of dying and for her many lessons about the meaning of life and death. I would like to dedicate my work on this book to my parents, Katherine and Leslie Rogne, who gave their children the gift of planning well for their end of life.