Stay, Breathe with Me: The Gift of Compassionate Medicine

by Helen Allison, Irene Allison

Overview

A Palliative Care Book of the Month: IAHPC (International Association for Hospice and Palliative Care)
From a medical insider comes a plea to renew medicine’s mandate to relieve suffering. The philosophy and practice of palliative care shows how this is possible by easing pain, by embracing the human side of illness, by inviting patients to be full participants in their care, and by incorporating the wisdom of these injured storytellers to guide healing hands. Informed by the voices of the seriously ill, their families, and the lifelong experience of a palliative care nurse and medical social worker, Stay, Breathe with Me, illuminates the power of the art of care and the need to bring heart and compassion back into health care. Written for both medical professionals and general readers alike.

Product Details

ISBN-13:	9781631520624
Publisher:	She Writes Press
Publication date:	06/07/2016
Product dimensions:	5.50(w) x 8.40(h) x 0.90(d)

About the Author

Scottish highlander by birth, Canadian by home, Helen Allison was born with healing hands and a caregiving heart. During her long career as a palliative nurse and medical social worker, she pursued a person-centered approach to champion the ill and their families. She is senior author of Social Work Services as a Component of Palliative Care with Terminal Cancer Patients (Haworth Press). She now shares her life’s learning that to ease suffering, the art of care must embody patient wisdom.

Former technical author and teacher, Irene Allison is a graduate of Humber College’s Creative Writing Program and Simon Fraser University’s Writing and Publishing Program. She is honored to join a growing movement that invites heart into health care and compassion into people’s lives.

Table of Contents

Foreword xvii

The Gift of Compassionate Medicine 1

"All I ask is to be heard and understood" 9

The Person Left Behind 9

"Who will walk my way?" 11

Humanitarian Principles of Palliative Care 13

The Management of Advanced Cancer Pain 13

Art and Science 15

Children in Need of Palliative Care 19

Anatomical Puppets in the Art of Care 21

The Anguish of Childhood Awareness 23

Extended Family Members at Dunira 24

A Child in Crisis 25

Wisdom Shared: Dave's Story 29

Silence without Meaning 29

Institutional Care 32

Communication Breakdown and Paternalism 33

The Negation of Suffering 36

Paul's Journey 43

Who Will Understand? 46

Paul's Discovery 48

Dunira Hospice: Rite of Passage 51

Palliative Care Services Reviewed 55

Mrs. Lambie, Person Unknown 58

The Hospice Team Searches for Answers 59

"An Ancient Longhouse" 65

Caring Comradeship and Harmony 66

A Wedding at Dunira 70

"Why does the night nurse wake me for my medicine?" 73

Angle's Pain Assessment 74

Emotional Pain 76

Patient Rights 77

Protecting Angie 81

Jock, Brian, and the Sea Captain 85

The Joy of Camaraderie 86

Seafaring Stories 87

"Pain as big as the universe" 91

A Vietnamese Family at Dunira 91

Minh, a Boy Made Old Before His Time 92

A Committed Hospice Team 94

Wayne's Fears: "Are you the worker that deals with death?" 97

Illness, Isolation, and Fear 99

In Need of Humanitarian Care 100

When Good Intentions Fail 103

John Steele's Story 105

Blocked Communication 108

A Family in Pain 108

Loss of Independence and Choices Removed 109

Resignation and Capitulation 111

The Exacerbation of Suffering 112

The Story of Seumas 113

Dr. Ethic's Honorable Intentions 115

A Family Affair 119

Alfredo's Story 120

Sofia's Dilemma 123

Acute Patient Care is Not Palliation 125

"Pain Is What the Patient Says It Is" 126

The Need For Awareness and Learning 131

Hide and Seek 132

Medical Myths 133

Symptom Control 134

Whose Needs Are Met? 137

Palliative Home Care 138

Respite Hospice Care 138

Altruism at Dunira 141

Patient Vigils 141

Olga's Appeal for Help 142

Mount Pleasant 147

Death Denial 148

Conspiracy of Silence 149

Grief and Loss 149

Breaking through Silence 151

Rituals Enable Us to Frame Our Lives 153

Through the Camera Lens: Emma 155

A Pristine Wintry Scene 159

Miracles Sometimes Happen 160

Lives in Progress 163

Vladie's Gift of Sharing 163

Jessies Independence 164

Mother Is Unsinkable 165

Poinsettias in Profusion 171

A Forum for Palliative Care 173

Interdependent Relationships: Heather 179

Suffering Identified 182

Surgical Injury of the Brain 183

Unmet Expectations 185

"Mind Is the Master Power": Dora 189

A Hundred Thousand Ills 190

Building a Bridge to Reach Dora 191

"Detached Compassion": Geraldine 195

Geraldine's Intractable Pain 196

A Grieving Hospice Team 198

The Stone Thrower 199

An Unusual Experience 200

"Have we lost our sense of humor?" 202

A Time of Good Cheer 204

The Coming of Spring 209

Violet's Anguish 209

Harry and Mabel's Acceptance 214

A Catalog of Labels 219

Meg's Story 219

Roberta's Story 222

"Roberta, Are You Hiding?" 223

Trust Bestowed 225

"Miracles" of Technology 229

Social Dilemmas 231

Euthanasia and Physician-Assisted Dying 232

Advance Health Care Directive: The Living Will 237

Neil's Palliative Passport to Freedom 238

Hope Beyond Despair: Victims of Injury 241

"Stay, Breathe with Me" 245

For Patients 253

References 257

With Gratitude 261

Editorial Reviews

An IAHPC Palliative Care Book of the Month: “A remarkable book. On just about every page are little pearls of sound clinical wisdom and truths about the ways we might do better. Anybody who works in palliative care will enjoy and benefit from reading this book. ”
—Dr. Roger Woodruff, International Association for Hospice and Palliative Care

"A wonderful book [for] palliative care workers, doctors, patients, families, anyone interested in learning how to treat a human being nearing the end of life. While some language describing trigger points of pain or the care required, may not be understood by everyone, stick with it as the book will fill you with admiration for [these] hard-working caregivers and a better understanding of palliative care. It may also give you hope that when our time comes, we will be taken care of just as well as the people who have shared their stories here."
—San Francisco Book Review

“Recounts scenarios that exemplify both best and worst practices, making a strong case for palliative care through clear and descriptive language. Medical professionals can use Allison’s experience to enhance their understanding of palliative care, while caregivers will be encouraged to provide a noble service.”
—Library Journal

“Unlike much of medical literature, even in the area of death and dying, this volume by Helen Allison and Irene Allison is written from the heart and speaks to the heart. Therein lies its transformative power. As a former palliative care physician and future dying human, I am profoundly grateful.”
—Gabor Maté M.D., best-selling author of When The Body Says No: The Cost of Hidden Stress

“I hope this deeply compassionate, wise and enchanting book will be widely read by those who work in ‘mainstream’ medicine, and not just palliative care. We forget that suffering is often the cause and not just the result of illness. Palliative care, with its focus on the alleviation of suffering and the healing power of compassion, has so much to teach modern medicine.”
—Robin Youngson, MD, co-founder of Hearts in Healthcare, author of Time to Care: How to Love your Patients and your Job

“It is a privilege to recommend this book to doctors, nurses, social workers, and others. A wonderful read.”
—Lawrence P. Levitt, MD, Professor of Clinical Medicine, Penn State College of Medicine, and coauthor of Uncommon Wisdom: True Tales of What Our Lives as Doctors Have Taught Us About Love, Faith, and Healing

“Beautifully and tenderly written, the gentle weaving of these stories reminds us to mix equal parts of technology, love, and compassion throughout our lives to the end.“
—Carol McVeigh, RN, Palliative Care Nurse, Canada (1943–2015)

“A passionate, heartfelt plea for medicine to return to the practice of compassion and empathy, and an antidote to the over-medicalization of medicine, particularly in end-of life care. An important contribution to the growing discussion on how we die today.” —Phil Dwyer, author, Conversations On Dying

“Compelling reading for families of persons with life-threatening illnesses and their healthcare professionals that permits us to envision living with dying in a humane, compassionate manner.”
—Mary Valentich, PhD, Professor Emerita, Faculty of Social Work, Universityof Calgary, Canada

“Helen Allison, a compassionate, caring nurse with a special insight into the feelings of patients in pain and a nurse who must have been loved and respected by patients and peers. This book is a must read for all health care professionals.”
—Rhoda Anderson, President, Lakes District Unit, Canadian Cancer Society, Hospice Volunteer, Canada
“Takes us to the places where we feel uncomfortable and fear to go, but where we need to go in order to provide true, holistic palliative care.”
—Millie Cumming-Chalmers, MD, Palliative Care Physician, Canada

“Stories filled with compassion, empathy, and wisdom—heartwarming and instructive.”
—Sandra Martin, The Long Goodbye columnist, The Globe and Mail, author of A Good Death: Making the Most of our Final Choices

From the Publisher

06/15/2016
One might consider the practice of modern medicine to be both art and science. Synonymous with the term hospice care, palliative care emphasizes the artistic side of medical treatment. In this title, Helen Allison (head writer, Social Work Services as a Component of Palliative Care with Terminal Cancer Patients) looks back on her years nursing terminally ill people in order to develop an awareness of the importance of palliative care. She and her coauthor daughter Irene demonstrate the need for patients to be active participants in their care, to retain their dignity and self-worth, and to remain connected with family and loved ones. Besides physical pain, a person under palliative care experiences emotional discomfort as well. Therefore, Allison makes it clear that hope and compassion should always be present. Unfortunately, many medical practitioners are not trained in palliation. Others become more focused on the science rather than the art of the field. Allison recounts scenarios that exemplify both best and worst practices, making a strong case for palliative care through clear and descriptive language. VERDICT Medical professionals can use Allison's experience to enhance their understanding of palliative care, while caregivers will be encouraged to provide a noble service.—Chad Clark, San Jacinto Coll. Dist., Pasadena, TX

Library Journal