Because I Knew You
How Some Remarkable Sick Kids
Healed a Doctor's Soul
How Some Remarkable Sick Kids Healed a Doctor's Soul
The abuse Bob Macauley suffered as a child created barriers to true human connection, while also motivating him to prevent any other child from hurting as he had, leading him to pursue a career in pediatric palliative care.
This book tells the story of his incredibly courageous patients, including the baby born with a condition considered “incompatible with life” who, a decade later, is still showing doctors how wrong they can be. And the teenager with cystic fibrosis who toured Europe drumming for a punk rock band, sweat dripping onto the oxygen tank hidden near his feet. And the high school drama geek with cancer who flew on a private plane to meet the Cake Boss and see her first Broadway show on the final weekend of her life.
Over time, these patients and their remarkable parents pierced the protections around his soul, forcing him to revisit the trauma of his own childhood. As a child he’d learned to silently accept his fate, but his patients showed him that being a kid means fighting for what’s important and true. After growing up in a world where people did things no one ever should, he found a home among people who loved more deeply than he thought anyone ever could.
All proceeds from the sale of this book go to support the pediatric palliative care program at Oregon Health & Science University, with a portion contributed to Darkness to Light, an organization dedicated to preventing child sexual abuse.
Advance Praise
“… a luminous meditation on the beauty of life, even in its most wrenching moments.
A mix of plangent emotion and deep insights into end-of-life medicine, delivered in limpid, moving prose.”
“Because I Knew You is courageous, intimate, and revealing, at turns excruciating and exhilarating. Dr. Macauley honestly explores his own emotional wounds, enabling us to witness how his personal healing becomes a well of compassion and a source of therapeutic prowess.”
—Ira Byock, MD, best-selling author of The Four Things That Matter Most, Dying Well, and The Best Care Possible
“Robert Macauley’s Because I Knew You is an extraordinary book—a tender, raw, personal, and deeply sophisticated inquiry into life and loss. The exquisite beauty of these essays expresses an intense striving to understand humanity at its most vulnerable, and it succeeds brilliantly. Stunning in its scope, searing in its vision, this book assumes a humility before all the questions of the eternal. He writes with feeling about mortality, immortality, pain, love, despair, and hope. I do not have enough superlatives to describe this profound narrative. Dr. Macauley’s incisive interrogations into life and death echo those of Dr. Atul Guwande. Even if life spares you the need to face the deepest challenges presented in Because I Knew You, to read it is to heal from any pain. It is a work for the ages.”
—Robin Oliveira, author of My Name Is Mary Sutter, I Always Loved You, Winter Sisters, and A Wild and Heavenly Place
“Part memoir, part manual, Bob’s beautiful book will take you all sorts of places that are otherwise very hard to get to. Go! Learn, as the author himself did, how brave, honest, wise, and generous humans can be.”
—BJ Miller, author of A Beginner’s Guide to the End and the Ted-talk “What Really Matters at the End of Life”
“A profound and totally engrossing exploration of the painful yet beautiful world of children facing serious illness. To their remarkable courage Bob Macauley adds his own fascinating journey, not only as the doctor who cares for them but someone in need of healing, too. Pick up this book to be inspired, but rest assured that the human stories and life lessons will remain with you long after you put it down.”
—Elisha Waldman, MD,
author of This Narrow Space: A pediatric oncologist, his Jewish, Muslim, and Christian parents, and a hospital in Jerusalem
“With tenderness, grace, and hard-won insight, Dr. Macauley shares with us his painful yet life-celebrating journey with terminally ill children. Amid tragedy, he insists on each patient’s humanity, uncovering what they love, what they dream to be, discovering with them ways in which to fit their dreams into their brief yet abundant lives. The core of this mesmerizing and unexpectedly uplifting book is what these children teach him. Their courage, their insistence on life lived with joy, changes the good doctor who possesses a painful past, indeed heals the good doctor. Because I Knew You is an instant classic and a book especially suited to our times.”
—Connie May Fowler, author of Before Women had Wings and A Million Fragile Bones
“We must remember that behind all the data and electronic record that is driving medical care today, there is a patient, their family, and their provider, each with their own story. In this memoir of his evolution as doctor and human being, Dr. Macauley exquisitely relates the stories of captivating children who are living with serious illness and their courageous parents, and shows what the care experience can look like and become when a doctor accompanies them open-heartedly in their joy and suffering. Certainly, this is a must-read for anyone considering becoming a clinician; but really it is for anyone who seeks inspiration for what it means to be a loving witness to the struggles of others and how we can be transformed by such presence.”
—Blyth Lord, Executive Director, Courageous Parents Network
“By reminding us what really matters, and inspiring us to make a difference when we are most needed, Because I Knew You turns grief into courage and hardship into hope.”
—Stephen P. Kiernan, author of Last Rights: Rescuing the end of life from the medical system and The Baker’s Secret
Ethics in Palliative Care
No specialty faces more diverse and challenging ethical dilemmas than palliative medicine. What is the best way to plan ahead for the end of life? How should physicians respond when patients refuse treatments likely to be beneficial, or demand treatments not likely to be? Who makes medical decisions for patients who are too ill to decide for themselves? Do patients have the “right to die” (and, if so, what exactly does that mean)?
In this volume noted palliative care physician and bioethicist Robert C. Macauley addresses a broad range of issues from historical, legal, clinical, and ethical perspectives. Clinically nuanced and philosophically rigorous, Ethics in Palliative Care analyzes hot-button subjects like physician assisted dying and euthanasia, as well as often overlooked topics such as pediatric palliative care, organ donation, palliative care research, and moral distress. Drawing on real cases yet written in non-technical language, this complete guide will appeal to both medical professionals and lay readers.
Book Chapters
“End of life considerations”
“Practical bioethics in the care of patients with advanced illness”
“‘Children are not small adults’—The distinctiveness of ethics in children”
“Resolving conflicts in pediatric palliative care”
“Perioperative complications: Shared decision-making and informed consent”
“Analysis and resolution of ethical problems,”
“Spirituality and meaning for children, families, and clinicians”
“God at the bedside”
“Quality of life – and of ethics consultation – in the NICU”