I have accompanied dying people for more than twenty-five years—as a counsellor, volunteer chaplain, and companion. I feel passionate about changing the perception of dying and death, the way we care for people during their most vulnerable moments, and how we support families through this painful time. Since my twenties I have been immersed in Buddhist practise which inspires and informs my life and work. Together with other clinicians and mindfulness practitioners, we created one of the first contemplative-based training in end-of-life care for caregivers called “Authentic Presence”. Daring to be present might be the hardest thing you may have done in your life, and, you may come to discover, one of the most intimate, beautiful, and rewarding.
If you are looking for a ‘quick fix' or 'how to’ read, this book may at first glance not be the most obvious choice. Awake at the Bedside is not your traditional guidebook. It is a moving and insightful collection of essays written by clinicians, chaplains, caregivers, pioneers in end-of-life care, contemplative teachers, and poets. Each essay sheds light on the different facets of what it means to show up at the bedside and the opportunity to wake up to each moment. I contributed a chapter on spiritual care, but that’s not why I recommend this volume. I recommend it because it is written by caregivers for caregivers—honest, reflective, compassionate, inspirational, and practical. A human and compassionate vision for end-of-life care.
This book isn’t about dying. It’s about life and what life has to teach us. It’s about caring and what giving care really means.
In Awake at the Bedside, pioneers of palliative and end-of-life care as well as doctors, chaplains, caregivers and even poets offer wisdom that will challenge, uplift, comfort—and change the way we think about death.
Equal parts instruction manual and spiritual testimony, it includes specific instructions and personal accounts to inspire, counsel, and teach. An indispensable resource for anyone involved in hospice work or caregiving of any kind.
Contributors include Anyen Rinpoche, Coleman Barks, Craig D. Blinderman,…
As a physician, I have been in innumerable situations where people and their loved ones were facing off a serious illness but felt like they were completely lost. The reality of the end of life is nothing like how we have experienced it throughout our history. I have written about end-of-life care for the New York Times, Washington Post, and The Atlantic amongst others, but felt that this was such an important and vast issue that it deserved a deeper dive. My research also focuses on end-of-life care and I was able to weave a story presented through stories, historical texts, and research papers in a way that readers will feel like they have a map of just how life and death have evolved with scientific advances and a changing society. It doesn’t hurt that I trained at Harvard Medical School and Duke University, providing me the best environments to shape my views and perspective.
Barbara Coombs Lee is a nurse, lawyer, and leader of the movement to promote assisted death in the United States and around the world for people with terminal illnesses. Lee is a patient advocate at heart, a position she embodied given her work as a nurse. In this book, she provides a humane, eye witness view of what she saw as a nurse that inspired her to spark a movement that strives to give patients control over their bodies and medical decisions.
From the President Emerita/Senior of Compassion & Choices, THE guide to achieving the positive end-of-life experience you want and deserve.It’s hard to talk about death in America. But even though the topic has been taboo, life’s end is an eventual reality. So why not shape it to our values? FINISH STRONG is for those of us who want an end-of-life experience to match the life we’ve enjoyed. We know we should prepare, but are unsure how to think and talk about it, how to live true to our values and priorities, and how to make our wishes stick.The usual advice…
I first started tending patients at age 15, as a candy striper at St. Joseph Hospital. That was a long time ago, and since then I’ve learned much at patients’ bedsides, in Congress, statehouses and courtrooms. Through sequential careers in nursing, medicine, law, and advocacy, I learned that end-of-life experiences have the most to teach us about being truly present to our lives, about learning to love well and growing in wisdom. Personal autonomy, individual empowerment, and guided planning are all key to moving past our fear of death. In the end, as Seneca observed, “The art of living well and dying well are one.”
Diane is the curious and savvy public radio journalist who educated even as she entertained so many Americans, presenting conversations on every aspect of life in arts, science, and politics. I came to know Diane when I appeared on her show and was transfixed by watching her expertly navigate advanced broadcast technology even as she sized up her guests, crafted questions from her own astute observations, and coaxed her guests to reveal things they perhaps did not intend. In this book, she shares her most personal side as she considers options at the end of a life well-lived. Her wisdom is gleaned from personal history plus thousands of interviews, and she generously shares it with us.
The renowned radio host and one of the most trusted voices in the nation candidly and compassionately addresses the hotly contested right-to-die movement, of which she is one of our most inspiring champions. The basis for the acclaimed PBS series.
Through interviews with terminally ill patients and their relatives, as well as physicians, ethicists, religious leaders, and representatives of both those who support and vigorously oppose this urgent movement, Rehm gives voice to a broad range of people personally linked to the realities of medical aid in dying. With characteristic evenhandedness, she provides the full context for this highly divisive…
I guess we all have a "calling." Mine has always been to explore the deeper, darker, less palatable aspects of being human. I’m a bit like a space explorer of the human psyche. I’m lucky in the sense that my day job permits me to research, teach, and better understand things like love, death, and loneliness. I’ve been researching and writing about them for many years now. I always treasure books that help me to shed light on these themes. They are like shiny pebbles or jewels that I pick up and keep in my pocket. I hope you enjoy and learn from some of the treasures in my personal collection!
This book invited me to think about how we age and meet death in contemporary Western societies.
I have seen people close to me die. I watched as my grandma, then my grandpa, and then my father passed away. They each, in different ways, faced the brutal realities of growing old and they encountered a healthcare system that ultimately medicalized their death and the aging process–striving to ‘eek out’ more time, as though that was the only honorable thing to do.
Atul Gawande’s book really taught me to reflect critically on that.
'GAWANDE'S MOST POWERFUL, AND MOVING, BOOK' MALCOLM GLADWELL
'BEING MORTAL IS NOT ONLY WISE AND DEEPLY MOVING; IT IS AN ESSENTIAL AND INSIGHTFUL BOOK FOR OUR TIMES' OLIVER SACKS
For most of human history, death was a common, ever-present possibility. It didn't matter whether you were five or fifty - every day was a roll of the dice. But now, as medical advances push the boundaries of survival further each year, we have become increasingly detached from the reality of being mortal. So here is a book about the modern experience of mortality - about what it's…
I am an advocate for end-of-life planning. When my dad entered his eighties, and while still raising my own children, I found myself unprepared for my father’s steady health decline. Suddenly, I was thrust into the role of overseeing his care and making hard decisions. Our difficulties were exacerbated by a western medical system that fell short to prepare us for the end of his life. After my dad’s death, I began researching end-of-life issues to educate myself and plan for my own senior years. I have a goal to support others who face losing a parent and to facilitate healing for those who have already lost one. I also strive to inform and inspire the next generation to learn and plan early to guide themselves and their families to minimize avoidable problems and enhance quality elder years.
The author, Dr. Zitter, is described as an expert on the medical experience of death and dying. Her specialties of pulmonary/critical care and palliative care brought to life the spectrum between a comfortable, natural death versus a "keep alive at all costs" mentality. This book was thoughtful and presented many sides of difficult dying experiences. I found it incredibly valuable to understand typical trajectories that might occur at the end of life from illness, organ failure, frailty, or dementia. It helped me gain clarity on my own wishes, and I encourage others to read the book and then discuss it with loved ones. Rather than it being a depressing subject matter, it has the potential to be a gift if the reader can move into a place of communicating and documenting wishes for end-of-life.
For readers of Being Mortal and Modern Death, an ICU and Palliative Care specialist offers a framework for a better way to exit life that will change our medical culture at the deepest level
In medical school, no one teaches you how to let a patient die.
Jessica Zitter became a doctor because she wanted to be a hero. She elected to specialize in critical care—to become an ICU physician—and imagined herself swooping in to rescue patients from the brink of death. But then during her first code she found herself cracking the ribs of a patient so old and…
To care for the dying is not only strenuous physically, emotionally, and spiritually, but it is a challenge in self-care and a constant call to remain non-judgmental. As someone who struggled financially as a single mother for many years, I discovered that compassion and empathy were needed not only for my children but also myself—indeed self-love was at the core of all. Working with the elderly in residential care, in hospice, and with individuals and families I now teach community deathcare with an edge of social activism to help the vulnerable feel safe while living and while dying.
This book rattled and awakened me in a place that seemed taboo to tickle. Studying death and dying can be driven by ego (what are you going to wear at your funeral? Do you have your music picked out?) Not to say there is not some good in the ego-driven work-- contemplating that can be done no matter what angle you study. However, Being With Dying cuts to the chase. If you feel ready to dismantle your illusion of living forever (or, if think that you’ll only die on your own terms, but only when you’re ready) this book is for you.
A Buddhist teacher draws from her years of experience in caring for the dying to provide inspiring lessons on how to face death with courage and compassion
The Buddhist approach to death can be of great benefit to people of all backgrounds—as has been demonstrated by Joan Halifax’s decades of work with the dying and their caregivers. A Zen priest and a world-renowned pioneer in care of the dying, Halifax has helped countless people face death with courage and trained caregivers in compassioante end-of-life care.
In this book, Halifax offers lessons from dying people and caregivers, as well as guided…
I have worked in senior living for over 25 years. I was the administrative director of both an assisted living facility as well as a memory care facility and then I worked for over 18 years in one of the top national Life Care Communities in the country. During this time, I helped thousands of families navigate the complex and confusing world of senior living. I wrote my book to help families make educated and informed decisions and know what they could do before a crisis! It is not if your parents will need help, it is when! I am passionate about passing on the knowledge of my years in this field.
I found this book to be totally unique as it is informed by the many many years Dr. Harrington spent in a hospital ER, taking care of patients.
He goes into a great deal of information on the major diagnoses for seniors and at what point should you consider no longer treating a major illness. So many people do not want to spend their last days in a hospital or medical environment but sadly, many do.
If you want to opt out of pointless care, read this book to make an informed, educated decision!
The authoritative, informative, and practical follow up to BEING MORTAL, on end-of-life care for patients over the age of 65.
Most people say they would like to die quietly at home. But overly aggressive medical advice, coupled with an unrealistic sense of invincibility, results in the majority of elderly patients misguidedly dying in institutions while undergoing painful procedures, instead of having the better and more peaceful death they desired. At Peace outlines specific active and passive steps that older patients and their health care proxies can take to insure loved ones pass their last days comfortably at home and/or in…
I’m not a clinician, but friends often ask for my advice when they get sick or need help caring for a loved one. I’ve spent nearly 25 years mapping the terrain created by innovative patients, survivors, and caregivers, the rebels of medical care. I’m also a caregiver to elders. Along the way, I’ve collected books to loan when someone facing a health challenge asks me, “What do I do now?” Each of these five books was written for when you find yourself in the healthcare maze and need to borrow courage, sharpen your senses, and navigate as best you can.
My mom and I are competing to see who can give away more copies of this book; we love it that much. Both of us have been bedside caregivers for dying relatives and have seen firsthand how beautiful that process can be if people are prepared.
I love how the book is designed with nice, large print, lovely illustrations, and little snacks of insight sprinkled throughout in boxes and “fast facts.” This book is the essential What to Expect When You’re Expecting–but for death.
“A gentle, knowledgeable guide to a fate we all share” (The Washington Post): the first and only all-encompassing action plan for the end of life.
“There is nothing wrong with you for dying,” hospice physician B.J. Miller and journalist and caregiver Shoshana Berger write in A Beginner’s Guide to the End. “Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.”
Theirs is a clear-eyed and big-hearted action plan for approaching the end of life, written to help readers feel more in control of an…
As mom to a special needs child and an Asian American author, I’m passionate about diversity and inclusion. My mission is to inspire hope and empathy for people and planet. I believe that love can conquer all, whether it be familial, romantic, or love for humankind. Star-crossed love puts that power to the test. That’s why I’m drawn to these emotional, beautiful books. I’m proud that author Karin Tanabe recommended my work in Glamour Magazine as “a modern, important take on the power of love,” that my books have won Royal Dragonfly Awards for Disability Awareness and Cultural Diversity, and that Springboard Consulting named me Disability Hero of the Year.
The Next Thing You Know resonated with me on several levels. First, main character Mason grapples with a disabling injury that hampers his career as a musician. Second, the death doula that works with him to heal emotionally is faced with the difficult decision whether she should cross professional client lines to share her true feelings.
There are beautiful scenarios that reminded me of my series. In moving scenes, Nova shows Mason that there are other ways to create music other than performing. And he realizes that he has a lot to live for.
This is an emotional story told with heart and insight!
When Nova Husson, an end-of-life doula, meets Mayson Shaylor, everything she knows is cast into doubt. Committed to a world and profession that allows the elderly to bow out gracefully, taking on a younger man's case is unique, and tragic. Not to mention the fact that the once beloved singer-songwriter now must hang up his guitar for good, after a debilitating degenerative disease takes away the use of his hands. He's determined that there is no future for him, while she's determined to make him see there's life, even as death approaches. But Nova also holds powerful secrets of her…
I earned a Ph.D. in Modern Thought from Stanford and have been an award-winning professor of Women’s, Gender, and Sexuality Studies for over three decades. I've also lived with Crohn’s Disease for more than 50 years. At the intersection of these two experiences, I developed a therapeutic practice oriented towards those with chronic and life-threatening illnesses called Healing Counsel. As both a teacher and a counsellor, I ask people to reconsider the ways they make sense of their experiences. I try to assist people to open up new possibilities for healing, not only as individuals, but also as societies, maybe even as a species, or perhaps even as planetary beings.
Many people imagine that healing and dying are antithetical. However, this is not necessarily so. Sometimes, in the right circumstances, death can be healing not just for the person whose life is ending but for those who love them.
Unfortunately, American hospital care does not usually facilitate such graceful transitions. Kaufman, a medical anthropologist, compiles case histories of end-of-life care in medical facilities in order to help us understand the complexities that face us in these contexts. Since most Americans now die in some kind of medical institution, this book should be required reading for everyone—before it happens to us.
Over the past thirty years, the way Americans experience death has been dramatically altered. The advent of medical technology capable of sustaining life without restoring health has changed where, when, and how we die. In this revelatory study, medical anthropologist Sharon R. Kaufman examines the powerful center of those changes: the hospital, where most Americans die today. She deftly links the experiences of patients and families, the work of hospital staff, and the ramifications of institutional bureaucracy to show the invisible power of the hospital system in shaping death and our individual experience of it. In doing so, Kaufman also…
