When Silence Causes Suffering for the Dying

About 10 years ago, my grandfather on my mother’s side died of pancreatic cancer.

But the story I want to begin with happened two years earlier, before any of us knew he was sick.

It was a sunny day, and the whole family had gathered at my grandparents’ house. After his nap, my grandfather asked whether I would take a walk with him to the botanical garden just down the street.

We had always been close and spoke almost every day about little things: How are you? Did you eat? When are you coming to visit?

About half an hour into our walk, he grew tired, so we sat on a bench. We talked about the birds, the people walking past, and the flowers around us.

Then, as conversations sometimes do, it went quiet.

I felt the silence stretching, and it made me uncomfortable. So I blurted out, “Should we head home?”

He shook his head.

“Not yet,” he said. “I’m enjoying this.”

Five minutes passed, then 10, then 15. I checked again and again. Finally, reluctantly, he stood up and we walked home.

What I did not know then was that it would be the last walk we ever took together.

Six months later, he was formally diagnosed. He eventually became bedbound and passed away.

When I think back on that day, I still carry guilt.

I feel guilty that I rushed us home because I could not sit still in the silence, that I chose comfort over presence.

Cancer was not even part of the picture at the time. It was an ordinary day and an ordinary silence.

Even then, it was hard.

If silence was that difficult in a moment untouched by illness, how much harder does it become when life and death are on the line?

That moment with my grandfather taught me something about silence, discomfort, and the conversations we avoid.

What we avoid says as much about us as what we say.

Conversations about dying are among the hardest we will ever face. They ask us to hold love and fear at the same time and say aloud what most of us would rather leave unspoken.

So we wait.

We wait for the next appointment, the right moment, or the crisis that finally forces us into honesty.

But waiting has a cost: fractured communication, missed opportunities to honor someone’s values, preventable suffering, and guilt over what was never said, or too often, what we assume is not being heard.

I learned that lesson early in my career while working as an interim medical social worker at Shanghai Children’s Medical Center.

One morning, I joined rounds in a pediatric oncology intensive care unit. We stopped at the bedside of Bing Bing, a nine-year-old with end-stage cancer.

After the team finished speaking with Bing Bing and his family, we stepped outside the room with his parents to discuss his prognosis.

Less than four weeks.

The conversation took place just outside his room. Bing Bing could not hear us, but he could see us through the window.

Before returning, the team sent me inside to sit with him.

The moment I walked in, Bing Bing looked directly at me and said, “I am dying, aren’t I?”

He was nine years old.

I froze. I did not answer him.

Instead, I asked, “Would you like a minute to talk?”

He did.

That conversation gave him the courage to speak with his parents about his dreams and wishes. One of them came true before he died.

A week later, he became the receptionist at the Ronald McDonald House playroom on the ICU floor, proudly welcoming and checking in his friends from the hospital.

That small moment, stepping into the silence with him, taught me that courage in serious illness care is not about fixing what cannot be fixed.

It is about choosing connection over avoidance.

It means showing up honestly and fully, even when the answers are few and the discomfort is great.

Moments like that stayed with me and shaped how I understood the role of social work in serious illness care.

That lesson about choosing connection over silence has also shaped how I see my profession.

Here is the surprising truth: Social workers are trained in deep listening, cultural humility, and emotional presence, yet we are too often placed at the periphery of care.

We are told to support, rather than lead.

I believe that has to change.

Imagine a clinic where the first person you meet is not the oncologist, nurse, or pharmacist, but a social worker who sits with you.

A social worker who asks what matters most to you and your family, then begins weaving your story into the care that follows.

In a model envisioned by Dr. Barbara Jones and other leaders, then implemented at Dell Medical School, social workers became the first point of contact.

They did more than listen. They became the central hub for holistic care.

What they heard, including patients’ needs, fears, and values, was carried forward to the entire team.

That alignment changed everything.

It was more than a new workflow. It was a cultural shift.

Care was no longer organized around a rigid hierarchy. It was centered on relationships, communication, and coordination.

The impact was significant.

Patients and families described the model as revolutionary, humane, and profoundly caring.

That is what happens when social workers lead.

They do not replace other members of the team. They draw the team together through the threads of humanity and conversation.

Of course, leading from the heart is not always easy.

These conversations rarely happen during calm, predictable moments. They unfold against a backdrop of enormous complexity, where ethics, culture, and emotion collide.

Social workers are uniquely trained to walk alongside patients and families through it all.

I remember one family from my work with adolescents and young adults with cancer.

Their daughter was 21, bright, funny, and deeply loved. Her cancer had returned, with little chance of a cure.

When the oncologist presented the option of another round of aggressive treatment, the family clung to the possibility.

Saying yes felt like holding on to hope. Saying no felt like giving up on her.

Meanwhile, the young woman whispered to me that what she really wanted was time at home.

Time to sit with her younger brother.

Time to finish writing the song she had been working on.

Time without being connected to IV poles.

That is the strain many families confront near the end of life.

Hope collides with denial. Love collides with loss. Impossible choices must be made under unbearable pressure.

That struggle is especially urgent at the margins, in communities carrying the weight of poverty, racism, cultural silence, or the sheer unfairness of a life interrupted too soon.

I think of a young man whose parents had immigrated to the United States only a few years earlier.

He was 19 and had been diagnosed with advanced-stage cancer.

His family’s world was shaped by deeply held cultural beliefs and a mistrust of the healthcare system.

In their community, talking about death was considered dangerous, almost as though naming it would make it happen faster.

When the medical team recommended hospice, the family refused even to let the word be spoken. They begged the team to keep fighting, even as their son’s body was failing.

In private, the young man whispered to me that what he truly wanted was to die at home, surrounded by family, rather than in a hospital bed beneath fluorescent lights.

That created an ethical tension between respecting the family’s cultural beliefs and protecting the young man’s right to express his own wishes.

For me, the essence of social work is walking directly into that tension.

I sat with the family, gently holding their fears, and asked whether they would allow their son to share what was in his heart.

We did not begin with cancer or treatment.

We began with love, family, and home.

Slowly and painfully, they listened.

In the end, he was able to go home, where he died peacefully two weeks later.

That is what social workers do.

We do more than listen. We step into charged spaces and advocate so that people who are too often unheard can have their voices and wishes respected at the end of life.

Here is my hot take:

Silence causes more suffering at the end of life than death itself.

The real act of courage is talking about death honestly, imperfectly, and humanly.

Social workers are positioned to lead that work, but the invitation belongs to all of us.

Each of us has the power to begin these conversations with our loved ones, our communities, and ourselves.

We do not need perfect words.

We need the willingness to show up, listen, and speak from the heart.

In the end, what matters most is not the difficulty of the conversation, but the depth of connection it makes possible.

That is where radical bravery begins: in choosing life-giving connection, right here and right now.

Thank you.