Communicating Care at the End of Life
The language used to talk about death holds consequences and opportunities for understanding and making decisions about care practices. This book uses personal stories and perspectives from patients, family members, and medical workers to paint a picture of some of the issues and tensions individuals and caregivers face. With an aging population – one that represents a major public health challenge in the twenty-first century – Carey Candrian argues that examining the care we provide for individuals, especially aging individuals, is fundamental to creating a developed, ethical, and engaged society.
Table Of Contents
- About the author
- About the book
- This eBook can be cited
- Series Editor’s Preface
- Chapter 1. Dying in the 21st Century
- The Changing Landscape Concerning End of Life
- Attitudes Toward Death and Dying
- Chapter 2. The Cost of Understanding
- Chapter 3. The Many Ways We Use Language
- The History of Emergency Medicine
- The History of Hospice Care
- Chapter 4. Some Theories for Making Sense of Communication and Dying
- An Interpersonal Approach
- A Social Construction Approach
- A Critical Cultural Approach
- A Multi-Method Approach
- Discursive Opening and Closing
- Chapter 5. The Complexity of Death at Hospice
- Transforming Work Practices
- A Different Ethics of Care
- Taming Death
- Chapter 6. The Messiness of Death in the Emergency Department
- Transforming Work Practices
- A Different Quality of Care
- Taming Death
- Chapter 7. The Concealing and Revealing Nature of Language
- Consequences of Talk at Hospice
- Discursive Closure at the End of Life
- Chapter 8. Conclusions, Implications, and Reflections
- Adding to Our Health Care Understanding
- More Useful Ways of Thinking and Talking
- Practical Contributions
SERIES EDITOR’S PREFACE
Gary L. Kreps, Ph.D.
Communicating Care at the End of Life is a very personal and most revealing exploration of the communication dynamics that influence the dying process, based on the author’s extensive personal experiences in both hospital emergency departments and in hospices. The author, Carey Candrian, explores what it takes to die well, to have a good death, examining the communication factors that lead to a comfortable, dignified, and satisfying death for all participants. She also analyzes the communication processes used to make sense of death. There are many lessons to be learned from this book that can help guide effective communication at the end of life.
The book raises a number of important and complex questions about how we can use strategic and sensitive communication to help demystify and soften the challenges experienced when working through the dying process. For example, what are the unique communication needs of individuals who are confronting the end of their lives? How can we help these individuals create a sense of meaning and control over this unfamiliar process of transitioning from living to dying. What can be done to support family members and friends as they prepare for the deaths of their loved ones? What can health care providers do to promote a good death, while meeting their own personal uncertainties and concerns about death and dying? How can we design health care ← ix | x → systems, policies, practices, and communication technologies to support the key stakeholders during the dying process? Carey Candrian addresses these complex issues in this book by vividly recounting and analyzing rich and revealing stories about her own personal experiences observing and participating in the dying process, the experiences of many of her health care professional colleagues delivering care and support during clients’ deaths, and the experiences of patients and their loved ones when confronting death. Many of these stories illustrate good communication strategies (best practices) for supporting the content and relational needs of those who are confronting death. While other stories provide more cautionary tales about how communication may not have been handled particularly well to promote a comfortable passing for all participants in the dying process. However, all of the stories invite the reader to vicariously experience the complex interpersonal dynamics of communicating to facilitate the best possible outcomes from death and dying.
I learned a great deal from this book that will help me prepare for my own death, the deaths of my loved ones, and will help me support the personal needs and concerns of others who are confronting death. Too often, particularly in the Western world, we avoid examining the dynamics of death and dying. It is too uncomfortable for many of us to examine and discuss these issues. However, this failure to examine the complexities of death and dying can leave us poorly prepared to respond when death comes to our door (and sooner or later it will come to your door). Death is an inevitable part of life, and we all need to develop the communication skills needed for making sense of mortality and supporting the information needs of our loved ones. If you are a health care provider (either a formal professional provider or an informal family caregiver), it is most likely that you will need to develop strategic communication skills for responding to the complexities of death and dying. This powerful and important book can help you address the complexities of the dying process and enable you to promote comfortable and satisfying transitions for all of the participants in the dying process. ← x | xi →
This project would not be without the help, guidance, and support of many. First, thank you to Stan Deetz. I could not have done any of this without you, your ideas and your support. Next, thank you to Mary Savigar, Sophie Appel, and Gary Kreps for your insightful and thoughtful review, and for being so delightful to work with. Thank you to Susan and Gerry for your incredible wisdom and help over the years, and for inviting me into the emergency department and hospice. And thank you to Jean Kutner for sharing your belief in palliative care and the relationship between communication and care with me a long time ago.
Thanks especially to the patients, families and health care workers I have shared moments, hours and days with who are not listed on this page but infuse every single one of the following pages. I have been humbled in many ways having met you all. And many of you have shown me—and some have made me feel—the difference between life and living, a lesson far more important than I could have learned on my own. Finally, thank you to my incredible family—Bev, Scott, Jeff, Jody and Ibby—for understanding, supporting and caring for me beyond words. And thank you to Leo, the love of my life, for being the way you are. ← xi | xii →
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“Do not ask me to remember, don’t try to make me understand. Let me rest and know you’re with me, kiss my cheek and hold my hand. I’m confused beyond your concept, I’m sad and sick and lost. All I know is that I need you, to be with me at all cost. Do not lose your patience with me, do not scold or curse or cry. I can’t help the way I’m acting, I can’t be different though I try. Just remember that I need you, that the best of me is gone. Please don’t fail to stand beside me, love me ‘til my life is gone.’”—Owen Darnell
The aging of the population is one of the major public health challenges of the 21st century (Centers for Disease Control and Prevention, 2012). Additionally, the cost of providing care for an older person is three to five times greater than the cost of someone under 65. As a result, the demands for healthcare services for an aging population are exploding. Furthermore, the demand for these services across the world is increasing alongside an astonishing rate of medical error; devastating rates of loneliness among the elderly—a risk factor for early death comparable to smoking 15 cigarettes a day; the inability to follow patient preferences around the end of life; competing visions of how to best organize systems of care delivery for the elderly; and international reports ← 1 | 2 → of widespread stress, burnout, and compassion fatigue among those who care for the terminally ill. Consequently, health care needs are growing ever more complex, especially around the elderly, characterized by more to know, more to do, more to manage, more to organize, more to watch, more to feel, and more people involved than ever before.
I spent two years deeply engaged in two diverse settings: an emergency department (ED) and a hospice. I have worked ethnographically, capturing in detail the words and actions used in caring for seriously ill people. I understand ethnography to be a written means of representing and presenting a culture by describing and understanding localized practices, particularly communicative practices. Further, understanding these practices helps me to uncover how talk produces and reproduces certain meanings, norms, and strategies around the end of life. Even more, I believe that to do ethnography is to subject myself, my body, my personality, my social condition to the set of circumstances that play upon a group of individuals so that I am close to them as they are responding to what life does to them. Capturing the voices, the utterances, the pauses, and the hesitations in their unique formations is central to ethnography. Therefore, the quotes throughout this book have not been altered for the simple reason that something significant would be lost if the language were to be cleaned up. Entering health care settings, like hospice and the ED, is difficult because they are often filled with indelicate odors, sights, sounds, and because they are places where sick and not-so-sick bodies are overworked, overstressed, and underappreciated. They are also settings that cut to the core of who we are; what it means to be a patient; what it means to be a provider, and the role we must play and the skills we need to perfect that role. In essence, they pull and pound on our hearts and souls in the name of healing. And through their organization, these settings orient us to reflect on the meaning of life and the meaning of death in a particular way. What follows is a brief orientation to these settings, taken from my interactions with the sites.
- ISBN (PDF)
- ISBN (ePUB)
- ISBN (MOBI)
- ISBN (Hardcover)
- Publication date
- 2014 (May)
- treatment guidance reflection
- New York, Bern, Berlin, Bruxelles, Frankfurt am Main, Oxford, Wien, 2015. 144 pp.