Reconsidering Patient Centred Care: Between Autonomy and Abandonment
By Alison Pilnick
Emerald Publishing, 2022
I almost didn't pick up this book. The title felt like academic jargon, and honestly, I was expecting another dry critique of healthcare that would leave me feeling guilty about not being "patient-centered" enough. But something about the subtitle—"Between Autonomy and Abandonment"—made me pause. That tension felt familiar. I've lived it in countless consultations where I've watched patients struggle with choices they never wanted to make.
Turns out, I wasn't wrong to feel that tension. And neither was Alison Pilnick.
The Moral Shelter Problem
Pilnick's most brilliant insight is her observation that patient-centered care has become what she calls "moral shelter"—a concept so seemingly righteous that questioning it feels like heresy. Who could be against putting patients at the center of their care? It's like being against puppies or sunsets.
But here's the thing: when something becomes unquestionable, it often becomes unhelpful. Pilnick shows, through 25 years of studying actual conversations between doctors and patients, that our patient-centered policies often create the very problems they're meant to solve. We've created a circular system where the main thing patient-centered care accomplishes is making healthcare look more patient-centered on paper.
The evidence? Multiple systematic reviews show that while patient-centered interventions reliably improve scores on patient-centered measures, they consistently fail to improve actual health outcomes. We're basically getting better at performing patient-centeredness while patients aren't necessarily getting better.
The Choice Trap
The heart of Pilnick's critique centers on choice—the golden calf of modern healthcare. Through detailed analysis of real conversations, she shows how our obsession with patient choice often creates impossible situations for everyone involved.
Take the young man with intellectual disabilities in her data who wants to become a police officer. His care team spends an entire meeting delicately preserving his "choice" and "autonomy," carefully avoiding telling him this career path isn't realistic. The result? He's excluded from the actual decision-making when they finally have to choose something realistic for him. His autonomy in the moment led directly to his abandonment when it mattered most.
Or the pregnant woman told to base her decision about genetic testing solely on whether she feels "worried." No context, no guidance, no meaning-making—just the burden of choice dressed up as empowerment.
I've seen this play out countless times. The patient with chest pain who asks if they should worry, and I carefully explain all the possible causes and let them "choose" their level of concern. The family member who asks what I would do if it were my parent, and I deflect with "well, every situation is different." We've become so afraid of being paternalistic that we've swung toward something that might be worse: abandonment disguised as autonomy.
The Expertise Problem
One of the book's most important contributions is its distinction between two types of authority: epistemic (the right to know) and deontic (the right to decide). Pilnick argues that in our rush to reject medical paternalism—the inappropriate exercise of deontic authority—we've also undermined epistemic authority. We've become afraid to share our expertise.
This hits close to home. How many times have I watched a patient struggle with a decision, clearly wanting guidance, while I carefully maintained my "non-directive" stance? How many times have I seen the relief in someone's eyes when I finally said, "Here's what I think is happening, and here's what I'd recommend"?
Patients don't come to us because they want to make medical decisions. They come because they want our help making sense of what's happening to them. There's a difference between sharing expertise and imposing decisions, but we've gotten so confused about the distinction that we've thrown out both.
When Politeness Becomes Cruelty
Reading Pilnick's analysis reminded me of a conversation that happened years ago but still makes me wince. An elderly patient came to see me about some concerning symptoms. After explaining the various possibilities and treatment options, I asked the standard question: "What would you like to do?"
She looked at me for a long moment, then said quietly, "Doctor, if I knew what to do, I wouldn't have come to see you."
The silence that followed was deafening. Here I was, so focused on being "patient-centered" and non-directive that I'd forgotten the most basic thing: she came to me because she trusted my expertise. She wanted guidance, not a menu of choices. In trying so hard not to be paternalistic, I'd left her feeling more lost than when she'd arrived.
That interaction taught me something important about the difference between respect and abandonment. Sometimes the most respectful thing we can do is share our professional judgment—not impose it, but offer it as the resource it's meant to be.
Beyond the Critique
What I appreciate about Pilnick's approach is that she doesn't just tear down patient-centered care and walk away. She's clear that the paternalistic "doctor knows best" model was genuinely problematic. But she also shows that the solution isn't to swing to the opposite extreme.
Her suggestion? We might need to abandon the language of patient-centered care altogether in favor of something like "patient-oriented" or "patient-focused" care—terminology that acknowledges patient perspectives without demanding that these perspectives dominate every aspect of healthcare encounters.
More importantly, she calls for rehabilitating medical expertise while maintaining appropriate limits on medical authority. This means distinguishing between sharing knowledge and making decisions—a distinction that our current obsession with patient-centeredness has systematically obscured.
Why This Matters Now
Reading this book in 2025, I can't help thinking about how these dynamics have played out in recent years. The erosion of trust in expertise we've seen across domains—from vaccines to climate change—may be partly connected to our well-intentioned efforts to democratize expert knowledge. When experts are told to step back from their expertise rather than exercise it more transparently and civilly, we may be creating more problems than we solve.
In healthcare, this plays out in daily interactions where patients are asking for guidance and we're offering choice. Where they're seeking meaning and we're providing options. Where they want to know what we think and we're asking what they want.
A Personal Reflection
The book made me think about my own practice in uncomfortable ways. How many times have I hidden behind patient autonomy when what the patient really needed was my professional judgment? How many times have I asked "What do you want to do?" when the more honest and helpful question would have been "Here's what I think we should do, and here's why"?
There's a difference between paternalism and expertise. There's a difference between imposing decisions and offering guidance. And there's definitely a difference between empowerment and abandonment—even when the abandonment comes wrapped in the language of choice and autonomy.
The Bottom Line
Reconsidering Patient Centred Care is the kind of book that makes you question things you thought you knew. It's meticulously researched, uncomfortably insightful, and ultimately necessary. Pilnick has written something rare: a critique that's both devastating and constructive, challenging orthodoxy while offering a path forward.
This isn't just an academic exercise. It's about real people trying to navigate some of the most vulnerable moments of their lives. The patient who just wants someone who knows what they're doing to help them figure it out. The family member who's asking what you would do because they trust your judgment.
Maybe it's time we trusted our judgment too—and learned how to share it in ways that honor both our expertise and our patients' humanity.
Rating: ★★★★★
A necessary and brilliant challenge to healthcare's most sacred assumption. This book should be required reading for anyone involved in healthcare policy, practice, or education.
Dr. Victoria Ekstrom is a consultant gastroenterologist at Singapore General Hospital and co-lead for Narratives in Medicine at SingHealth Duke Medical Humanities Institute. Through her writing, she explores how stories and human connection can transform healthcare.
Such a wonderful breakdown of the book and its message, along with your impression of the material. It has been added to the reading list over here!
I need to read this book next!!!