Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor's Soul

by Robert C. Macauley

As one of the few pediatric palliative care doctors in the United States, Bob Macauley was used to people saying, "I'm so glad I don't have your job." To which he would explain that palliative care is more about living than dying, then offer to share some of the inspiring stories he witnessed on a daily basis. He might mention that also being an Episcopal priest helped him console people in the hardest situations. But he never revealed the true reason for his career choice: he didn't want anyone else to hurt the way he had when he was a kid.

Genres: Nonfiction

370 pages, Paperback

Published June 3, 2025

Reviews

[Libbie · Rating 4 out of 5]

4.5✨

"Why palliative care? Because I didn't want anyone else to hurt the way I did when I was a kid"

This is the book that has made me need to take a break from reading medical non-fictions for a while. To call me an emotive reader would be an understatement. I work in healthcare myself but there is a reason I do not specialise in paediatrics, nevermind paediatric palliative care.

Doctor, father, priest: Macauley tells all in this memoir about working as a paediatric palliative care doctor. Equal parts harrowing and compelling, the author takes the reader through his career, through the pitfalls and hardship whilst shining light on the hope and positive aspects of palliative medicine.

The author weaves together aspects of his own childhood and childhood trauma, being raw and vulnerable with the reader, whilst not taking away from the true message of this book. The subject matter is intense and sometimes disturbing - as is the nature of the field of medicine - but the author treats it with the care and reverence it deserves.

Thank you to NetGalley and Mindbuck Media for providing me with an ARC copy in exchange for an honest review. All opinions are my own.

[Sarah Jensen · Rating 5 out of 5]

Book Review: Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul by Robert Macauley

Robert Macauley’s Because I Knew You is a profoundly moving and introspective memoir that chronicles his journey as a pediatric palliative care physician, revealing how the resilience and wisdom of terminally ill children transformed his understanding of medicine, mortality, and the human spirit. Blending clinical expertise with deep personal reflection, Macauley crafts a narrative that is as intellectually rigorous as it is emotionally resonant, offering readers a rare glimpse into the sacred space between life and death.

The book’s greatest strength lies in Macauley’s ability to balance the heartbreaking realities of pediatric illness with moments of unexpected grace and joy. Through a series of poignant case studies, he introduces readers to children whose courage and wisdom far surpass their years, demonstrating how these young patients became his most profound teachers. His prose is both tender and precise, capturing the delicate balance between medical detachment and compassionate engagement that defines his specialty.

Macauley’s reflections on the limitations of modern medicine are particularly compelling. He does not shy away from the ethical dilemmas and emotional toll inherent in his work, yet he consistently returns to the idea that healing is not synonymous with curing. His insights into the importance of presence, listening, and honoring each child’s unique journey challenge conventional notions of medical success, offering a transformative perspective on what it means to truly care for patients.

While the memoir is deeply personal, it also serves as a call to action for the medical community to reevaluate its approach to end-of-life care. Macauley’s critiques of systemic shortcomings—such as the overemphasis on aggressive treatment at the expense of quality of life—are tempered by his unwavering respect for colleagues and his acknowledgment of the complexities involved. These passages are particularly impactful, as they bridge the gap between individual experience and broader institutional change.

If there is a weakness in the book, it is that some readers may find certain sections emotionally overwhelming, given the subject matter. Additionally, while Macauley’s clinical anecdotes are powerful, a deeper exploration of his own emotional processing—beyond the immediate moments with patients—could have added another layer of introspection. Nevertheless, these minor critiques do not detract from the overall power of the narrative.

Rating: 4.8/5

Section Scoring Breakdown:
-Emotional Depth & Authenticity: 5/5 – Macauley’s vulnerability and honesty create an immediate and lasting connection with the reader.
-Narrative Structure & Prose: 4.5/5 – The writing is elegant and evocative, though some transitions between cases could be smoother.
-Thematic Exploration: 5/5 – A masterful examination of mortality, resilience, and the essence of healing.
-Impact & Relatability: 4.5/5 – While centered on pediatric care, the themes resonate universally, offering lessons for all readers.
-Originality & Insight: 5/5 – Challenges conventional medical paradigms with grace and authority.

Thank you to NetGalley and the author, Robert Macauley, for providing an advance copy of this book in exchange for an honest review.

[Paula Vanderford · Rating 5 out of 5]

I am so grateful for this book and the wisdom it shares. Dr. Macauley, in describing what led him to his exceptional work in pediatric palliative care, reminds us that even after unimaginable personal trauma, healing is possible. The source of that healing in his story comes from a surprising source; children and families experiencing serious illness.
This is a fascinating book of a priest, pediatrician, ethicist, spouse, and father, exploring another facet of his life, providing pediatric palliative care. Dr. Macauley’s writing is engaging, taking us on interesting and emotional journeys as we learn about the kids who transform his life as he seeks to relieve their pain and enrich their lives. Dr. Macauley is honest and open, allowing us a window into his thoughts as he dives headfirst into the lives and uncertainty of each child’s story, and as he begins to recognize that they are healing his soul.
This story is filled with life, love and hope in the midst of fear and uncertainty. The book will inspire you, and these remarkable children will capture your heart.

[Alexandra Caggiano · Rating 5 out of 5]

WOW WOW WOW WOW. OHMYGODWOW.

Phew. This book was everything I needed to read at this current stage in my life and more. It was heartbreakingly brilliant, full of love, full of wonder, full of sorrow but full of hope. I saw so much of my own journey through the NICU through the eyes of Dr. Macaulay & reading this book was so incredibly healing to me in ways I never imagined. So many unremembered parts because I was too young to recall that my body immediately recognized. You will leave this book better than when you started.

A gigantic thank you to NetGalley & Dr. Macaulay for this E ARC 🤍

[Jess Serinne · Rating 5 out of 5]

Thanks to Netgalley for the Audio.

Sad yet inspirational.
I couldn't imagine dealing with death daily, but someone has to and I'm glad that these patients had someone like Dr Robert Maculey.

Listening to the audio narrated Dr Robert Maculey really made it special.


ps Once more with feeling is indeed the best episode!

[Jennifer · Rating 5 out of 5]

I received this book (audiobook version) from NetGalley. I did not know much about pediatric palliative care programs so I learned a lot from this book. This book was also very touching to me. I appreciated hearing about the lives of individual patients and families. Thanks for including suggestions to help at the end of the book.

[Kayleigh · Rating 5 out of 5]

Published June 2025.

Robert Macauley is a pediatric palliative care doctor telling his story throughout his career. With his background of also being a priest, of being a medical ethicist, and in navigating parenthood, he brings a raw honesty to the emotional complexity of his work and perhaps how his own childhood trauma has impacted how he shows up for the people he helps.

Because I knew You weaves together stories of some of the patients he's cared for over the years and how they've impacted his role moving forward. The stories are heartfelt, heart wrenching and hard. Macauley documents some of the misunderstandings of his field, such as the distinction between palliative care and hospice, and how pediatric palliative specifically comes with it's own hurdles vs adult palliative care. He speaks truthfully about burnout and the impact his job has on his family and friends.

Overall, while this book was emotional and heavy, it was beautiful.

Thanks to the author and publisher for providing a review copy through NetGalley.

[Candice · Rating 5 out of 5]

This book touched me in many ways. I love how Dr. Macauley teaches us you can turn pain into positive. He shares some deeply personal details which brings him to the decision to become a pediatric palliative care doctor. It is commendable to me, the job he performs. To see that his patients touch him just as much if not more than he touches them.

Their stories are heartbreaking and wrecked me. There were several times I have to use my Kleenex.

I listened to the audiobook which is narrated by the author. I love books in which the author narrates. He did a wonderful job.

Thank you NetGalley and Talkbox Productions for the advanced listening copy of this book. All opinions are my own.

[Brittany Devereaux · Rating 4 out of 5]

I received an advanced readers copy of this book from NetGalley.

This book describes many patient scenarios that Dr. McCauley has encountered as a pediatric palliative care provider. Due to the subject matter, it is certainly a heavy book to get through. I enjoyed it greatly, but took my time reading it over the span of 2 weeks. I may have felt extra sensitive to the feelings the book brought up as I have a toddler who has seen palliative care providers.

Something I do wish was included though.. Palliative Care is NOT hospice and is not just for those who are going to pass away. Palliative care focuses on what the patient’s goals and wishes are, which I think IS well covered in this book. However, I wish there would have been mention of a patient who recorded palliative care treatment for pain, symptom management, etc.

Thank you to the author for sharing his experiences and the publisher and NetGalley for the opportunity to read and review.

[Kathie · Rating 4 out of 5]

A touching memoir in the vein of When Breath Becomes Air, the author deftly weaves his own religious training with stories from his patients and musings on grief and ethics.

I loved this book and read it over the course of two days. It would have been a five star read however I agree with the other reviewer who said it could have used an editor. Parts were simply too long, and the plotline about his disagreements with his coworkers ran on a little too long and in too much detail.

Still, I have a great deal of admiration for his life and work and the courage to share it with the world.

With thanks to the publisher and NetGalley for the ARC.

[Robin · Rating 4 out of 5]

Because I Knew You is a memoir by pediatric palliative physician Robert Macauley. Because of the nature of the book, it is very emotional. I ended up sobbing every time I read a section, so it wasn't the best for light summer reading. Still, I enjoyed learning about the work and getting to know some of Dr. Macauley's patients and their families. It could have used more editing because he went off on a lot of tangents.

Thanks to Mindbuck Media, Chehalem Press, and NetGalley for a review copy of Because I Knew You.

[Paul Galchutt · Rating 5 out of 5]

This volume bears witness to the vulnerable wrestling of who someone is, how he got there, and where he might be going. It brings the hurt, healing, and a residue of hope shown in the roles of son, father, husband, friend, physician, ethicist, and priest. The duty and beauty of love pours from these pages and into your being.

[El · Rating 5 out of 5]

perfection, unbiased review, no notes

[Lolly K Dandeneau · Rating 5 out of 5]

via my blog:https://bookstalkerblog.wordpress.com/
𝐏𝐞𝐨𝐩𝐥𝐞 𝐰𝐢𝐥𝐥 𝐟𝐨𝐫𝐠𝐞𝐭 𝐰𝐡𝐚𝐭 𝐲𝐨𝐮 𝐬𝐚𝐢𝐝, 𝐩𝐞𝐨𝐩𝐥𝐞 𝐰𝐢𝐥𝐥 𝐟𝐨𝐫𝐠𝐞𝐭 𝐰𝐡𝐚𝐭 𝐲𝐨𝐮 𝐝𝐢𝐝, 𝐛𝐮𝐭 𝐩𝐞𝐨𝐩𝐥𝐞 𝐰𝐢𝐥𝐥 𝐧𝐞𝐯𝐞𝐫 𝐟𝐨𝐫𝐠𝐞𝐭 𝐡𝐨𝐰 𝐲𝐨𝐮 𝐦𝐚𝐝𝐞 𝐭𝐡𝐞𝐦 𝐟𝐞𝐞𝐥.

Robert “Bob” Macauley, a pediatric palliative care doctor and Episcopal priest answers the question why he chose his job, or why it chose him, in this beautiful, heartbreaking and surprisingly inspiring memoir. In a perfect world, there would be no need for such an occupation but leaning into reality, it is shocking how little support there is for children and their families approaching the end of their lives or facing the years of devastating illness. How do ethics come into play when a parent’s choice may not be in a child’s favor? What about a physician’s ego when parents or the patient themselves know better than science what they need? Doctors are the ‘fix it’ people, they patch us up, cure us, they prevent death, as Bob writes, they are not there to prepare patients to die. The children under Bob’s care face diseases, illnesses, and failing bodies that keep them from living what most people envision as a normal life. No child should have to suffer and if they are in the clutches of pain, or facing death they should have grace, comfort, and dignity to die surrounded by love. The family deserve support, “Saying goodbye to your child is such a profoundly unnatural thing for a parent to do.” This is where Bob’s vocation as a minister is a gentle hand that guides his medical knowledge.

The facts are often disturbing, that ‘historically, kids’ pain has been terribly undertreated, frequently justified by the erroneous belief that “they won’t remember it anyway.” Bob knows all about trying to survive pain as a child, flooded by memories of a difficult childhood of his own. Children remember much more than adults realize, psychological and physical pain. Struggles of right and wrong, fighting the status quo, learning how to move forward with the practical aspects of palliative care when there is not a model to learn from in creating a PACT team, not to mention poor funding, these are just a few things Bob confronts. As to the children themselves, they are the bravest, most inspiring people I have ever read about. There are adults who do not have half the nerve the children on these pages carry within them. There is an incident of a mother who sees pain as ‘redeeming’, disturbing, and horrifying for her child who she sees as being spiritually tested, made a martyr so to speak. How does a doctor navigate such situations, to make sure the child does not suffer? Each patient he meets and helps is a learning experience, and a new friendship. There will be tears.

Doctors get a bad rap these days, until you need one. Not to say there are not rotten ones out there but how lucky when you have a doctor like Bob, who truly sees his patients as more than just a case. Humbled by his patients, Bob never stops learning and knows his best teachers are the children and their parents. It truly is his calling. Yes, read it!

Published July 3, 2025

Mindbuck Media

Chehalem Press

[Margaret · Rating 3 out of 5]

This was a book that I very much wanted to love. The subject matter is near and dear to my heart, as I am a hospice volunteer and my husband is an Episcopal priest. Unfortunately, this was hard to get through for many reasons although the subject matter and his story is still a great value.

I saw another review that said that this book would have benefited from a better editor and I have to agree. There really are two books here. One is a book about the stories of his patients, the lessons that they have to teach us about death and dying, and how that has implications on our view of the afterlife, God, Hope, and resilience. I thought that that was what this book really was and was excited about feeling a deep sense of appreciation for the lives his patients lived, and the lessons they could teach us.

Unfortunately, I do not think that I got any hope out of this book. It seemed like he told the stories of the patients, but did not take the time to extrapolate the lesson That we could all learn or to spiritualize it. I think when you deal with the topic of the untimely death of children you have to infuse something into the story that gives some meaning to their lives that we can all learn from. Otherwise it’s just depressing. It was very hard for me to get through some of these stories.

I also felt very weird about the way that he went to great lengths to tell the stories of his colleagues of which he felt wronged and/or had disagreements. In my career, I have never had that many issues with people with whom I worked and it made me think that maybe he was the common denominator. He described his side in ways that were very nuanced and understandable, and yet described many colleagues in ways that made them seem almost monstrous and callous to the needs of the children. The author called out four specific physicians by name and it felt like it was a writing exercise make himself feel better. It just seemed messy and very unprofessional.

Understandably, the authors trauma from childhood has colored his life in very real ways. Like another reviewer said, I feel like this trauma is still very present in his life like a healing wound and seems to cast a shadow over many of his professional and personal interactions. I understand that being abused as a child is not something you ever get over, but I do think that the way he kept bringing it up throughout the entire book seemed to compete with the stories of the sick children.

I think this part of the book was written for his own healing, but it really wasn’t developed enough to also benefit others. It felt like when someone you just met overshares at a party and you are left feeling really confused and weird, and powerless because you don’t know them enough to support them but feel sort of unknowingly used as a means to their own emotional end.

That all being said, he seems like a wonderful man doing wonderful work and I wish him lasting peace, healing, and fulfillment.

[Liralen · Rating 4 out of 5]

When Macauley found pediatric palliative care, it felt like a calling. Not his only calling, as it happens; he's also ordained in the Episcopal church, is a medical ethicist (which has a lot of practical overlap with palliative care, but it sounds like also a lot of tensions between the two fields), and has an MFA and a whole host of certifications. You might call him an overachiever. (I wonder whether he and Tori Murden McClure would get on?)

This is some of that story, told largely through the contexts of a handful of the pediatric patients Macauley worked with. Pediatric palliative care is a hard, hard thing; in adult palliative care, too, you know you will be working with people who have serious illnesses—and the expectation is that many or most of them will die sooner rather than later—but, as Macauley says again and again, kids aren't supposed to die. And yet for so many of his patients, there just wasn't another viable option, and the best-case scenario was for the patients and/or their families to find some beauty among the wreckage.

This is one of those bright spots. Because I Knew You distills years of clinical practice—and personal experiences—into a thoughtful, sometimes painful look at what goes into helping children (and their families) through things nobody should have to imagine. I can imagine it making a particularly difficult read for people with children, but it's worth the read anyway; palliative care (and medical ethics) is something we should all be at least conversant in, for the simple reason that chances are high that at some point you will find yourself making decisions about yourself or a loved one, and those decisions will hopefully include palliative care.

A quick note: Macauley touches on but does not, I think, explicitly define the difference between palliative care and hospice care. They so often go hand in hand that people tend to conflate the two, and it's worth mentioning that palliative care is not only for the terminally ill; the point is quality of life (and often pain control) in any severe illness, whether or not death is expected in the near future. Just noting this because my non-medical self has had to explain this difference to too many very smart people! If you or a loved one is going through major medical things, it can be incredibly valuable to inquire about palliative care options.

Anyway—overall an excellent look at something that doesn't get quite enough attention. Would absolutely read more along these lines.

Thanks to the author and publisher for providing a review copy through NetGalley.

[Karen · Rating 4 out of 5]

Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor's Soul
by Robert Macauley
4 out of 5 stars

Thank you to #NetGalley and Talkbox Productions for a free copy of this audiobook in exchange for my honest review.

One-sentence summary: This is a memoir of a palliative care doctor, recalling some of the cases that helped shape him as a person and a doctor.

I am so glad there are people like Dr. Macauley who are willing to face death and dying every day to bring comfort to families. I don't think I could handle seeing what Dr. Macauley sees every day. Some of his stories had me in tears. I could feel the care he put into his patients. I also appreciate reading about the doctor's honest crisis of faith. He seemed very "real" when we sometimes expect doctors to be perfect.

For some reason, the abuse Dr. Macauley suffered when he was a child didn't seem fitting for this book. I recognize that the subtitle was about his own need to heal, but it just seemed awkward in the book. I may have left that part out, though I do appreciate that at the end resources were given.

I would recommend this book to anyone who enjoys reading memoirs about medicine and people who genuinely do good in the world.

[CanadianReader · Rating 3 out of 5]

Rating: 2.5

Dr. Macauley’s book provides the reader with a real sense of what it’s like to be a paediatric palliative care physician. He presents detailed but accessible studies of several children with a range diseases—from genetic and neuromuscular conditions to cancer. Alongside the stories of his patients and their parents, he tells his own story, which is an unusual one: he’s trained as both an Episcopalian priest and a physician and has served as a clinical ethicist in a hospital setting. He feels he was drawn to paediatrics because of the abuse he endured in childhood.

This is a heartfelt, brave, and vulnerable work. However, it’s my view that less would have been a great deal more. I believe significant revision, editing, and a general tightening up of the prose could have made this book a much finer one. Mine was an advanced reader copy, and it seemed very much a rough draft. This is particularly true of the sections that concern the author’s own story and the conclusion, where the language is often fuzzy and rambling. The skills of a first-rate editor could have made a huge difference.

[Genexer · Rating 5 out of 5]

A world of bravery, courage, and hope is revealed in the lives of ordinary people facing life’s most difficult and painful circumstances. While it is a challenging subject matter, the heart of the story for me was the way love and beauty can envelop tragedy and grief. The reader is witness to the circumstances of everyday people as they respond to life’s most painful heartbreak (including the author’s). However, the sting of sadness lingers briefly, as we see the bittersweet transformation of people turning grief and hardship into the best of what makes us human.

“Because I Knew You” gives me hope in mankind. It also gives me hope that like the ordinary folks in this story, I might have the courage to endure life’s most difficult and painful challenges. The weight of grief will be lighter because of physicians like Dr. Macauley and the generosity of others who have already traveled the same hard road and reach out to help make the journey bearable for others. As the author says, “were it not for this work, I wouldn’t know how brave and honest and wise and generous human beings can be.” This is a story every human needs to hear.

[Margaret W. · Rating 5 out of 5]

In this inspiring memoir by Dr. Robert Macauley, the author describes his work in pediatric palliative care and the patients who changed his life. His compassionate accounts of his patients, their families and the choices they make will memorialize them in our hearts forever. Macauley describes surprising moments of joy as well as deep sorrow as he helps each family navigate their way through life’s most difficult journey.

Dr. Macauley explores some of life’s hardest and most intimate questions in this book: suffering, childhood trauma and faith. He also describes how healing can be found in expected and unexpected places- even in the work of palliative care. Reading about these experiences is difficult and challenging, but rather than evoking despair, the reader is left searching for answers and asking the important question of how we too can make this world a better place.

This is a beautiful book, and I am so thankful Dr. Macauley shared his story.
Margaret W. Brigham

[Emi Yoshida · Rating 4 out of 5]

Dr Bob the author is very sensitive, and self-critical. The former I'm sure makes him excellent at his work in pediatric palliative care; but the latter I hope he overcomes. A great storyteller, he is generous and open with his own backstory and conflicts at work. It was beautiful to come to know the many patients and their families written about here with such sincere kindness and compassion, and also to witness Dr Macauley's healing journey, despite all the grief and loss his fieldwork entails.

Everyone suffers loss, and even if yours didn't involve a pediatric ward or palliative care, this book is a salve. By showing the universalness of it, from several points of view, and by demonstrating how best to get through it, and get others through it. I learned a lot, and felt a lot reading this.

[Meggie · Rating 4 out of 5]

A beautiful book about kids being braver than they should ever have to be, parents figuring out how to love and protect their children well amidst devastating circumstances, and the healthcare providers who at the very least can bear witness gracefully to the lives they cannot fix with medicine.

The only part of this book that didn’t sit quite right with me was the mantra for why palliative care: “so that other kids don’t have to hurt the way I did”. On a very basic level, the “hurt” of childhood sexual assault is very different than the “hurt” of complex medical disease. In one, a child has been betrayed by someone they trust, by someone meant to protect them. In another, a child has been an unfortunate victim of disease incidence statistics. To me, the first child needs therapy and justice more than palliative care. I do recall the author describing his patients as being robbed of their childhood, which is perhaps where he is drawing the comparison. But this theme seems to shortchange the breadth of pediatric palliative care that he describes in the rest of the pages — the complex symptom management, continuous reframing of goals in light of diminishing quality of life, and care for each child within the sphere of their larger family unit.

[Lisa · Rating 5 out of 5]

Dr. Macauley has written a beautiful book about a very difficult subject--pediatric palliative care. His gift for storytelling and introspection gives a window into a world most of us are lucky never to have seen up close, addresses an incredibly important subject that is rarely talked about, and shows why good pediatric palliative care matters so much to the kids and families who unfortunately need it. Dr. Macauley uses his warmth, empathy, humor, and love for what he does to tell what are sometimes sad and difficult stories about grief and infuse them with the strength, love, inspiration, and beauty that so often coexist with the sadness.

[Ena_a · Rating 5 out of 5]

At first I was a little skeptical when I started reading, but after just a few chapters I was convinced. Such a beautifully written book. Emotional and touching. One of my favorite books this year; I would recommend it to everyone.

[Megan · Rating 5 out of 5]

This book was recommended to me by a doctor friend who heard Robert speak somewhere. So I picked it up and I am glad I did. The world can be so hard to wrap my head around sometimes, but these kids have to figure it out very quick. They are remarkable. Thank you for writing this book.

[Sally Bliss · Rating 5 out of 5]

Wonderful stories, beautiful and bravely written. This is the best of who we are in medicine, loving and grateful for each precious moment with our patients and each other.

[Relena_reads · Rating 5 out of 5]

This is a hard book because pediatric palliative care is a hard topic, but Macauley is an excellent traveling companion. His thoughtfulness and thoroughness would make him an excellent shepherd in any medical or clerical setting, but he truly seems to have found his calling and I would trust my woes to him. The hard stories he tells from his own and others lives are beautifully conveyed and I wish him much peace.

Audio ARC provided by NetGalley.

[Lottie C · Rating 4 out of 5]

[a copy of this book was provided to me by the publisher from netgalley. thank you!]

4⭐️

a very sad yet somewhat hopeful book about paediatric palliative care. i found the information included to be insightful. i did find the writing style a bit clunky at points, but i was drawn to the case studies the author shared.