Dying Better in Chicago

The voice at the other end of the phone stung. It burned more than the sun beating down on my balcony just west of Chicago’s Loop, where I sat concocting what I thought was a halfway decent plan.

Her words shouldn’t have bothered me so much.

After all, this colleague told me a truth of which I am intimately aware.

“Randi, what you don’t seem to realize is the fact that you’re white.”

Breaking news.

“You’re not going to like this message, but Black folks die differently. That’s just the way it is.”

Racial Lines

Race wasn’t something I had taken for granted. I knew I looked out from a more privileged perspective on a city divided along stark racial lines.

I grew up in Memphis, Tennessee. But it wasn’t until I moved to Chicago that I felt I truly understood segregation.

For more than a decade, I worked in Chicago as a broadcast journalist, what we call a street reporter, covering streets that are, at ground level, straight lines of color:

Black. Brown. White.

I’ve knocked on countless doors and asked mothers to describe unspeakable pain.

“Tell me about your son.”

“What will you miss most?”

Traditionally, reporters don’t hug the people they interview. But more than a few grieving women have collapsed into my arms.

While neighbors may not mix across the racial lines you won’t see on a city map, they typically mixed with me. That was due entirely to my role.

They were eager to speak up and share with the rest of the city what mattered most: the details of one young life that might otherwise have gone unnoticed.

I thought that instinctively human desire could drive my halfway decent idea toward some level of success.

A Lightbulb Moment

What was the idea?

To develop a pilot program giving residents of one neighborhood access to comprehensive, structured and trustworthy planning services, so they could consider, communicate and document their end-of-life preferences.

To build a culturally competent system grounded in trust and community respect, with programs held in multiple public places so these conversations could flourish and become normal.

To help residents receive end-of-life care aligned with their values, goals and beliefs because those wishes had been shared, understood and, most importantly, honored by loved ones and healthcare providers.

Maybe this neighborhood could emerge as a community model for meaningful end-of-life dialogue.

That was why I called her in the first place.

She was the wife of an African American minister and deeply familiar with the challenges of care within her congregation.

But she reinforced stereotypes that some of my friends in medicine had sometimes lamented.

“My people,” she said, “will always do everything.”

I was afraid of responding the wrong way, even though plenty of facts did not support her claim.

The Facts

African Americans report greater symptom-related suffering near the end of life, poorer communication with doctors, inadequate pain assessment and lower overall satisfaction with the quality of their end-of-life care.

Most people near the end of life want what I thought all of us want throughout life:

To be heard.

To live according to our values.

To matter.

I was too off balance to say any of that to her. And the phrase “my people” got me off the phone.

I knew they weren’t her people any more than the people living on Chicago’s Near West Side were mine. The Puerto Rican residents eight blocks farther west weren’t mine either.

They were my late husband Carlos’s people.

Carlos

Chicago was our city. Chicago is still my city.

Carlos’s death from colon cancer drove my decision to enter end-of-life education.

He was the sweetest soul, with the kindest eyes. He was an enthusiastic husband and devoted to his role as a local political reporter.

He was mourned by what seemed like an entire city, and officially from the floor of the United States Congress and the West Wing of the White House.

Carlos was a great man.

His death was not.

He died in the ICU, a setting I am certain he would not have chosen.

But his death is the reason I started Life Matters Media with his oncologist, Dr. Mary Mulcahy.

The nonprofit’s roots trace back to a conversation we had shortly after my husband’s death.

My instincts as a reporter sent me on a quest to understand what had happened and why.

I asked her, “Why didn’t you ever tell me that Carlos was dying?”

She had said something similar, but with a subtle difference.

She told us his cancer was incurable, but treatable.

So we focused on that latter reality and went full steam ahead, doing whatever we could to extend whatever time we had left.

No matter what Mary had said, it never would have been enough. Nothing could have prepared us for the ugliness ahead.

That Day

Things were already worse, but we didn’t acknowledge it.

I was getting ready for work when Carlos suffered the pulmonary embolism that would ultimately kill him.

He was sitting with me as I put on my makeup. I was convinced I needed to go to work so I could save my days off in case things got worse down the road.

Things were already worse.

Perhaps we didn’t even know.

That day, I was preoccupied with how I would get him to his chemotherapy appointment the next morning. We never paused to consider whether four hours in an infusion room were the best use of our time.

I spent the day of that chemo appointment sitting at a funeral home conference table, numb from the events of the previous 24 hours.

Two Years Later

About two years later, our new organization began offering community education through a program called Starting the Conversation.

With support from the Retirement Research Foundation, we launched our first neighborhood initiative in Chatham.

Chatham is home to one of Chicago’s most solidly middle-class Black communities and one of its oldest populations.

In a survey we conducted, Chatham residents got our attention.

More than 80 percent said they had thought about the care they wanted near the end of life. But more than half had not discussed those wishes with anyone.

Here was an older population thinking about future care but not talking about it.

Education for the End of Life

What did we do?

We partnered with 10 sites and provided about 33 programs during the year. Nearly 500 neighbors participated, mostly through our standard four-program series.

We talk about living well near the end of life by considering what gives our lives meaning now.

We also discuss why residents think only 3 percent of them have had a physician broach the subject first.

We explain how a well-executed advance directive reflects a meaningful conversation. But we also talk through wishes with residents who do not want a document, often for very good reasons.

We introduce palliative care and discuss how someone might recognize that it is time for hospice.

We also talk about accessing that much-needed support while keeping the presence of strangers in the home to a minimum.

We discuss organ donation and share stories of local donors. We talk about the many valid reasons neighbors may choose not to donate and separate those concerns from past abuses and current myths.

We explore the most economical disposition options and spark conversations about participants’ experiences trying to bury loved ones.

They learn more from one another than from any program facilitator.

Many Chatham neighbors have told us that this process is the most valuable gift their family has ever received.

By sharing what matters most later, they can focus on what is meaningful now.

The movement is growing organically because it has to.

Unfortunately, we have neither the staff nor the resources to meet the demand from a population many people would dismiss as unwilling to have these conversations.

Betty Ann

Betty Ann thinks it is absurd that anyone would assume she doesn’t want to talk about this.

She is in the same situation as too many mothers on Chicago’s South Side, caring for a son who was left quadriplegic by trauma that should never have happened.

Every day for the past 26 years, she has traveled 44 miles each way to visit her son in a nursing home.

He is on a ventilator. He is waiting for the miracle he faithfully prays for and wants every possible treatment to extend his life.

But Betty Ann says that, at her age, that would be too much for her. She hopes to receive hospice care if she becomes ill.

She is relying on her niece to make that happen because her son is her only child.

Cleo

Cleo attended four community programs this year with a combined total of 17 relatives.

Quality end-of-life care is a priority for her, though you might think she has more pressing concerns.

Ten years ago, neighbors operating a thriving drug business broke into her home.

Since then, in an effort to frighten Cleo away from reporting them, they have vandalized her property, killed her dog and left the bloody animal on her porch, and regularly fired shots outside her window.

She was wearing dark glasses when I last saw her because she had a black eye underneath.

She got it after falling from her bed while trying to take cover.

Gwendolyn

When we met Gwendolyn Lee, she wanted to clarify her wishes because she was worried about her future care.

She had never married and lived alone.

A month later, she came back to check in with her nieces, and she had news for me.

She had a new flame who was really an old flame from high school. They had reconnected through Facebook 50 years later.

“There’s still hope for me,” she said.

She told me that if he were willing to listen to her care wishes, she would know that this time it was for keeps.

Four months later, I ran into her holding hands with him at a jazz festival.

She gave me a wink and said, “I had the conversation. It went really well.”

I hesitated to look at him because I thought surely only Gwendolyn and I could consider that conversation remotely romantic.

But he said, “No, no, no. This was great. I’m planning to be there for Gwendolyn then, so I really need to know.”

What I’ve Learned

The taboos and stereotypes so often associated with dying are frequently our own hang-ups, not those of others.

Do not place them on other people.

And when fears do exist, they are usually not what you would expect.

You won’t know until you ask.

This isn’t cutting-edge work.

But it is a program design that is working within a population many people would have considered unlikely to design a better end-of-life experience for themselves.

Turning 36

This isn’t the life I would have designed or expected for myself either.

Carlos certainly wouldn’t have expected it for me.

But I think he would be happy that my life is connected in some way to strengthening an often vulnerable period for a vulnerable population of seniors.

He was the kind of man who would dance with every older woman at a party, especially if she were there alone.

I will always remember Carlos at 36.

That is an age I will somberly turn next week.

What has sustained me through the pain of losing him is a deep faith that he has seen the face of God and that I was left here for a purpose.