“Nearly 66% of adults in Appalachia read at or below an 8th-grade level.”

— Appalachian Learning Initiative

As a healthcare chaplain, I’ve been trained to walk into intense, emotionally charged situations while keeping my own emotions in check. It’s drilled into you early on: This isn’t about you. It’s about the patient, their family, their grief. I’m good at this.

I often joke with my counselor that I can flip my emotions on and off like a switch—as the job demands. But in reality, it’s not a joke. It’s a skill. And it’s one I take seriously. Because when I’m sitting across from a family in the wake of sudden loss, my job isn’t to feel my feelings; it’s to create a space where they can feel theirs.

This ability has become invaluable in my donation conversations. The capacity to put a family’s emotional well-being above my own—to press pause on my own reactions and focus solely on theirs—is how I’m able to do this work, and do it well.

I had just started a new traveler contract with an OPO I hadn’t worked with before, and they’d assigned me to a case that was on the neuro critical care unit of a hospital I had only been to one time before to help train one of their new hires. The hospital was unfamiliar, the staff mostly strangers, and I was still getting my bearings when the call came in.

My orientee and I arrived just after the day shift had handed off to the night crew. We huddled with the nurse caring for the potential donor—a woman whose husband had just changed her code status to Do Not Resuscitate (DNR). He planned to move her to comfort measures only (CMO) the following day. The gravity of the situation was clear. The prognosis had been accepted. He was ready to say goodbye.

Following protocol, we met with the attending physician to align with the hospital care team and lay the groundwork for our donation conversation. In these moments, it’s like standing at the edge of a precipice, knowing that what happens next will forever alter the course of more lives than the ones in that room.

It’s in this moment that I remind myself that getting a “yes” from a family means the potential to save eight lives through organ donation. And getting a “no”? It means those same eight people will have to keep waiting.

Sidebar: The Eight Lifesaving Organs

Every organ donor has the potential to save eight lives. It’s a number we use often in this work, but what does it really mean?

• Heart – Pumps blood and life through the body.
• Liver – Filters toxins and produces vital proteins.
• Lungs (2) – Two lungs, two recipients.
• Pancreas – Regulates blood sugar and insulin production.
• Kidneys (2) – Each kidney can go to a different recipient.
• Intestines – Essential for nutrient absorption and digestion.

So while there are only six types of organs, there are eight potential gifts because the lungs and kidneys can be divided, doubling their life-saving impact.

After we completed our huddle, we asked the nurse to introduce us to the patient’s husband. Together, we walked with him to a small family conference room just outside the unit. In those moments, the air is heavy—the weight of what’s been said and what’s about to be asked hangs between us.

As is custom, I reintroduced myself and the orientee with me. Over the years, I’ve learned that families in crisis often struggle to retain what they hear in those first few minutes. The shock, the confusion, the sheer emotional overload—it blurs everything. That’s why I’ve made it a practice to repeat myself, to go slow, to keep my words simple and clear.

I know that when I take my time, when I say things twice if needed, it gives families a moment to catch their breath, to grasp what’s happening, and to feel seen amidst the chaos. It’s not just about who I am or what I do—it’s about giving them the space to take it all in.

“Hi, Jon. Again, my name is Brent. I’m part of the end-of-life care team that works closely with the hospital,” I said, keeping my tone steady and calm. “Would you mind telling me a little bit about the conversation you had with Dr. Smith?”

Jon sat there for a moment; his eyes fixed on the table. When he finally spoke, his voice was flat, distant.

“My wife is brain dead,” he said.

The words hung in the air. I felt the weight of them—the certainty in his voice, the finality of the phrase. But Jon’s wife wasn’t brain dead. Not yet. She was missing several of her brainstem reflexes, a serious sign of neurological injury, but it wasn’t definitive there had been no formal testing at this point in her admission. The effects of the medicine that she was on to keep her comfortable could also be masking her true neurological status.

In these moments, the line between clarity and confusion is razor-thin. Families hear phrases like “grave prognosis” or “severe brain injury,” and sometimes it all collapses into one phrase: brain dead. But brain death is a specific, clinical diagnosis with legal and ethical implications—a line that had not yet been crossed.

I stepped out to find the attending, who returned with me to the room. She sat down across from Jon, her expression soft but resolute. With the calm, measured cadence of someone who has delivered such news countless times, she explained that while his wife had suffered a severe anoxic injury, she was not brain dead.

An anoxic brain injury occurs when the brain is completely deprived of oxygen, causing cells to begin dying within minutes. The attending outlined that while there was still some neurological activity, the extent of the damage was severe and could potentially worsen.

“There is still some activity,” she said, her voice gentle but firm. “It’s possible that she may progress to brain death, or she may remain in a state where the machines are the only things keeping her alive.” She reached out, clasping Jon’s hand for a brief moment. “I am truly sorry, Jon,” she said, before standing and leaving the room.

The words seemed to hang in the air like heavy mist, each syllable weighing Jon down a little further. He nodded mechanically, his eyes fixed on a point somewhere beyond the consult room walls. Then, as if the reality of it all had finally settled over him like a shroud, he looked up.

“Can we… can we just take a break for a moment?” he asked, his voice thin and strained.

My orientee and I rose from our chairs and exited the consult room, Jon trailing behind us. We moved to a small table near the vending machines in the lobby, the fluorescent lights casting a harsh glow over everything. Jon was frantically pressing buttons on his phone, his face tight with frustration. We waited in silence, the hum of the vending machines the only sound.

A few minutes passed, though it felt much longer. Jon’s frustration seemed to mount as he repeatedly attempted to call someone. Finally, I stood and walked over to him. “Is everything okay, Jon?”

He looked up, his eyes weary. “I’m trying to get ahold of Stephanie,” he said, running a hand through his hair. “She’s been up here on and off today and has been with me through all these conversations. It’s nice to have someone else here to hear what’s being said because… it’s all just a bit much.”

“I understand, Jon,” I said, my tone gentle. “This is a lot to take in, and we’re here to help you in any way we can.” I took a breath, choosing my words carefully. “First and foremost, I just want to make sure that you understood what the doctor said and to confirm your decision about turning off the machines and allowing your wife to pass naturally.”

That’s what she would want,” Jon said as he gestured toward his wife’s room.

“I just… I don’t know what to do. I know she wouldn’t want to be hooked up to all those machines. That’s not her in there anymore—she’s gone. But I never thought she’d be the one to go first. This isn’t how it was supposed to be.”

This is something I hear often from the spouse left behind. They always expect to be the one who goes first.

I think it’s our mind’s way of shielding us from the full weight of our mortality—an unconscious hope that we won’t have to face life without the person we’ve built our world around.

But when that moment comes, and they’re suddenly gone, there are no words.

Just the quiet, aching realization: you must now walk the rest of your journey without the person you loved most.

“Jon, I know you said this isn’t something she would want. Did the two of you ever talk about what she would want—if she ever ended up in a situation like this?”

“Not really,” he said quietly.

“That’s okay. Most families don’t have those conversations—and that’s what I’m here for. To help guide you through this, to talk through some of the next steps, and to walk with you through the decisions that need to be made.”

I paused, softening my voice.

“Would you mind if we stepped into the consult room? That way, we’ll have a little more privacy as we talk through these sensitive next steps.”

“Yeah, we can go back in there,” Jon said, as the three of us walked into the consult room and sat across from one another.

“Jon,” I began gently, “there are some important next steps we need to talk through.”

I paused, ensuring my voice remained calm and steady.

“As I mentioned earlier, I’m part of the end-of-life care team that works closely with the hospital. My role is to meet with families in these difficult moments to talk through decisions that either their loved one has already made—or that they may now be asked to make.”

I took a slow breath, keeping my tone even and respectful.

“I represent the Organ Procurement Organization for this state. Normally, this is where I would share the name of the OPO I work for, but to maintain HIPAA compliance, I’ll refer to it simply as ‘the OPO’ moving forward.”

“We’re the organization that works with families like yours,” I continued, “and we provide education around organ, tissue, and eye donation.”

I leaned in slightly, softening my tone.

“I’m here today because your wife has the rare and unique opportunity to save up to eight lives through the gift of organ donation—and to enhance countless others through tissue donation.”

“I’m not sure it’s on her license,” Jon said, cutting me off.

“It’s not, Jon,” I replied gently. “That’s one of the things I checked before I came in to speak with you. That means you have the ability to build a lasting legacy for your wife through the gift of donation.”

Jon’s eyes darted down as he pulled out his phone, his fingers fumbling with the passcode.

“I just don’t know,” he said, voice tight. “I need to call Stephanie. Can I call Stephanie?”

“Absolutely, Jon,” I said without hesitation. “If you’d like to have Stephanie on the phone, we can absolutely continue this conversation with her as well.”

Jon was fumbling with his phone, trying to call. There was no answer.

“I just don’t know,” he said again, his eyes locked on the screen, avoiding mine.

“Jon,” I said gently, “I know this is a lot to take in. We’re here to help you through it, and to answer any questions you may have.”

He repeated it—quieter this time. “I just don’t know.

I gave him a moment. Then, softly:

“Would it be okay if I explained a little bit about the process?”

He looked up, not quite nodding, but not objecting either.

“A lot of families come in with misconceptions about donation,” I continued. “They’ve seen it portrayed on medical dramas, and think it plays out that way in real life. But it doesn’t. And I’ve found that when I walk through what the process actually looks like, it helps. It clears up the unknowns and makes space for real understanding.”

He nodded yes.

I leaned in slightly, speaking with calm and steady rhythm.

“We’ll start with some paperwork. That part takes about 45 minutes to an hour. We’ll go through a set of medical history questions—that just helps us better understand your wife’s health background.”

He was still, listening, holding on.

“Once that’s complete, my clinical team will begin their process. They’ll draw some blood and send it to a specialized facility in Pittsburgh. Jon, that’s usually the longest part of everything we do.”

I paused to let him catch his breath, then continued.

“That bloodwork helps us in two big ways. First, it checks for any diseases or infections your wife may have had—some things you might not have even known about, but that could affect the safety of donation. And second, we’ll get her blood type.”

I looked him in the eye.

“Once we have that information back, we can begin finding the people—the actual individuals—that your wife can save through her gift of donation.”

“I just don’t know what to do,” Jon said, his voice barely above a whisper.

I nodded, giving him space—and then asked, softly,

“Jon… can I ask something?”

“Yes,” he replied, not looking up.

“What is it you’re concerned about?”

He shifted slightly, still silent.

“From what you’ve shared with me about your wife,” I continued, “it sounds like you both are the kind of people who give—who show up for others without hesitation. The kind of people who’d give the shirt off their back if someone needed it.”

I paused, letting the weight of that truth hang in the air.

“So, I just want to ask—what are you struggling with about donation?”

I didn’t want to push too hard. But I could feel it—there was something more underneath his uncertainty.

“I just don’t know,” he said again, eyes still fixed downward.

Jon, this is a safe space. You can share your concerns with us—no judgment.

Jon began to tear up.

“I don’t know how to read,” he said quietly. “I really want to do this… but I’m scared. I don’t know about the paperwork you talked about. I’m afraid I’m going to sign something I shouldn’t be signing.”

It hit me like a ton of bricks.

I’ve sat through countless workshops on health literacy rates in the United States. I’ve seen the slides, heard the statistics. But I had never seen it so starkly, so personally, as a barrier to donation. Here was a man losing everything, and on top of his grief, he had to worry about us—about me—being dishonest. That we might take advantage of his inability to read.

I was flooded with emotion. I don’t know if it was because I’d been on the road for a month—away from my wife, away from my kids—or because, in that moment, I truly understood the sacred weight of what it means to meet someone where they are. But for the first time in my professional career, I felt myself beginning to unravel.

In chaplaincy, we’re taught a trick when we need to make a quick emotional exit from a patient’s room: fake an eye injury. Rub your eye, cough, find some plausible excuse to slip away before the emotion overtakes you.

So I did.

“Jon,” I said, trying to hold my composure, “I have an idea. I’ll be right back.”

I turned quickly and left the room—leaving my orientee behind, no doubt confused—and made a beeline for the men’s room. I needed a moment. Not to hide, but to feel. To breathe. To pray.

I pushed through the door of the men’s room and let it close behind me. My legs were shaking. I didn’t make it far.

I leaned against the cold tile wall, and before I knew it, I was sliding down, shoulders trembling, tears finally breaking loose. There wasn’t time to think, to rationalize, to perform. The weight of it all—Jon’s fear, his honesty, his vulnerability—collapsed on top of me like a flood.

I sobbed. Quietly, but uncontrollably. I don’t think I had ever wept like that in a hospital. Not as a professional. Not in uniform. But in that moment, I wasn’t the professional. I was just me—a husband missing his family, a father thinking about what it would be like to lose a child, a man of faith suddenly overwhelmed by the sacredness of trust.

All Jon wanted was to do the right thing. To say yes to donation. To honor his loved one. But he was scared. Not because he didn’t care—but because he couldn’t read. Because he was afraid someone like me would take advantage of that. And that broke me.

This wasn’t just about literacy. This was about dignity. About how the systems we work in—no matter how well-intentioned—can still create fear in the hearts of the grieving.

And for the first time, I saw it clearly: meeting people where they are isn’t a technique—it’s an act of reverence.

There on that bathroom floor, still in my scrubs, I prayed without words. I asked for the strength to return to Jon not as someone with answers, but as someone worthy of the trust he had just extended.

Eventually, I stood up, wiped my eyes, and looked in the mirror. I didn’t need to hide what had happened. I just needed to carry it with me.

Because chaplaincy doesn’t call us to be unshakable. It calls us to be present.

And I was going back into that room to do just that.

I walked back into the room, still carrying the weight of what had just happened—but steadied now by purpose.

Jon looked up, eyes searching mine. He didn’t need words to ask if I had figured something out.

And I had.

“Jon,” I said gently, “I know how we can move forward in a way that feels safe for you. I’d like to bring in the hospital chaplain. Not someone from my team, but a neutral third party—someone who isn’t connected to the donation process. They can sit with us, listen to everything I explain, and help make sure that what you’re agreeing to is exactly what’s written down. No tricks. No fine print. Just truth.”

He nodded, slowly at first, then with more conviction. I could see the fear begin to lift. He didn’t want someone to do it for him—he just wanted to know he wasn’t alone. That someone was standing beside him, not above him. That someone would bear witness.

Calling the chaplain wasn’t a formality. It was an act of restoration. It returned agency to a man who’d had everything else stripped away—his wife, his plans, his certainty. And now, it gave him the confidence to say yes to something brave and selfless, without the fear of being betrayed by the fine print.

This wasn’t just about verifying a document. It was about honoring a man’s courage with transparency and trust.

And I knew in my bones: this is what it means to advocate—not to speak for someone, but to stand with them, exactly where they are.

I was so grateful when the chaplain arrived.

They were an older Episcopal priest—seasoned, calm, and quietly present in the way only a long-time chaplain can be. They worked part-time at the hospital but carried themselves with the steady gravity of someone who had spent a lifetime holding sacred space. And, most importantly, they spoke my language—not just the theological vocabulary, but the unspoken rhythms of chaplaincy. The reading of rooms. The holding of breath. The weight of silence.

They could see it in me right away.

Not just the emotion I was trying to keep tucked beneath the surface, but the burden I carried—the deep concern I had for Jon, the care I was taking to protect his dignity, the sacred tension between my professional responsibility and my very human ache.

We didn’t need to say much. That’s the beauty of this work when it’s done well. Sometimes presence is the most fluent language we have.

The chaplain nodded, gently took a seat beside Jon, and simply said, “I’m here to support you in whatever way you need. Let’s walk through this together.”

And in that moment, the room changed. The fear softened. The air settled. And I knew—we had found the way forward.

Jon looked at the chaplain, then at me. You could see it in his eyes—he was still grieving, still unsure of so much. But now, he wasn’t alone in that space. He was surrounded by people who weren’t pressuring him, but honoring him.

We went through the paperwork slowly, carefully. I read each section aloud, pausing after every paragraph to check for understanding. The chaplain listened, offered clarifications when needed, and affirmed that everything we discussed was reflected on the page.

Jon asked a few questions—simple, direct, brave questions. And when we reached the final section, he looked up and said, “I want to do this. For her.”

With his signature, everything shifted.

It wasn’t just ink on a page. It was a sacred act of trust. Of courage. Of love. And I knew what a miracle it was that we had reached this moment—not because of my skills, or a textbook protocol, but because we met Jon with honesty, humility, and human presence.

He said yes—not because we convinced him, but because he was seen, respected, and supported.

That’s the anatomy of a yes. It’s not a transaction. It’s a relationship. A moment of transformation built on the fragile trust between grief and grace.

And as I watched him press pen to paper, I knew: I had never been more humbled to bear witness.

Jon pressed the pen to the paper slowly, with steady hands but trembling breath. There was no fanfare, no applause—just the quiet gravity of a man doing right by his wife, even when the path forward felt uncertain.

When he finished signing, he looked at me. There were no words exchanged—just a nod. But it was one I will never forget. It carried the weight of trust, of relief, of something holy.

The chaplain offered a simple blessing—nothing scripted, just a few heartfelt words of comfort—and placed a gentle hand on Jon’s shoulder. I thanked them quietly, knowing their presence had made the impossible possible.

We collected the paperwork, answered Jon’s last questions, and left him in peace.

Outside the room, I stood in the hallway for a moment. I didn’t move. I didn’t speak. I just let it all settle—the emotion, the sacredness, the responsibility. I had been trained to guide families through this process. I had been certified, evaluated, and mentored. But nothing in my training had prepared me for the spiritual weight of that “yes.”

We talk often about informed consent in healthcare. We define it in legal terms, in procedural steps, in best practices. But we rarely talk about what it feels like—what it means—to give someone the dignity of understanding. Of safety. Of being known.

Jon’s fear wasn’t rooted in skepticism of donation. It was rooted in a deeper, more human fear: that he would be taken advantage of in his most vulnerable hour. That his inability to read might be used against him. That the system would fail to meet him where he was.

That moment changed me.

It taught me that the real work of an advocate—especially in the world of organ donation—is not about persuasion. It’s about presence. It’s about giving people the time, space, and trust they need to make a sacred decision with clarity and peace.

Yes, we need paperwork. Yes, we need signatures. But more than that, we need to bring integrity into the room.

Jon didn’t say yes because I convinced him. He said yes because, in that moment, he felt safe. He felt seen. And he believed—deeply—that his wife’s life could mean something beyond her death.

That’s the kind of “yes” that stays with you. Not in the checkboxes or the consent forms, but in your spirit. And it’s the kind of “yes” I carry with me every time I walk into another hospital room, unsure of what I’ll face—but certain of the sacred ground I stand on.

Health Literacy & Organ Donation: The Hidden Barrier

• Only 12% of U.S. adults have proficient health literacy.[1]
• Nearly 9 out of 10 adults struggle to understand and use everyday health information that is routinely available in health care facilities, media, and communities.[2]
• Individuals with limited health literacy are less likely to:
• Understand complex medical terms (e.g., “neurological death” vs. “brain death”)
• Comprehend consent forms or risk-benefit explanations
• Ask clarifying questions out of fear of judgment
• Limited literacy is correlated with lower rates of organ donor registration, particularly in underserved and rural communities, where institutional distrust may already be high.[3]
• In donation conversations, reading level mismatches are common. A 2019 study found that most donor authorization forms are written at a 12th-grade reading level, while the average U.S. adult reads at a 7th–8th grade level.
• Language and literacy barriers are identified as a top non-medical deterrent to organ donation in hospitals and community-based donation initiatives.

Next Chapter: Chapter Two: The Anatomy of Silence