Taking It To The Streets

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.

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

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 in Chicago, I worked as a broadcast journalist, what we call a street reporter, covering streets that are, at the 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 mix with me. That is due entirely to my role.

They are eager to speak up and share with the rest of the city what matters most: the details of a 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.

What was the idea?

To develop a pilot program that would give 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.

The goal was for residents to 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 become a model for meaningful end-of-life dialogue.

That was why I had 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 own 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 there were plenty of facts that did not support her claim.

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, and 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.

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 am here today, and 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.

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 into work so I could save my days off in case things got worse down the road.

Things were already worse. We just didn’t acknowledge it.

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.

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

We partnered with the city’s Department on Aging and held programs at every City of Chicago senior center.

We also asked participants to complete surveys about whether they had considered end-of-life care, discussed it with family members, or documented their wishes.

We found no difference in planning based on race, as is commonly believed.

We did find a significant difference based on income.

People living in higher-income neighborhoods were more likely to have thought about their care preferences, discussed those wishes, and documented them.

We also realized it might be more beneficial to provide frequent programs in one area than to spread education thinly across the entire city.

That way, residents in one neighborhood could get to know us, our colleagues, and the issue. And we could get to know them, their families, and their values.

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

Chatham is home to one of Chicago’s most solidly middle-class Black communities and one of the oldest populations among the neighborhoods we surveyed.

The first time around, 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.

Combine that with the presence of what we call bright spots, business associations, busy libraries, and health committees embedded within vibrant churches, and maybe Chatham was ready to start the conversation.

Focus groups at the beginning of the year overwhelmingly confirmed that and helped us shape our objectives.

We wanted to provide culturally relevant information, increase community knowledge, normalize planning as a routine health behavior, and foster local expertise through tailored messaging and appropriate channels.

Chatham residents were more likely to hear about the initiative by reading the Chicago Citizen than the Chicago Tribune.

They were more likely to learn where to show up and which senior center to visit through AM gospel radio than through my recurring segments on NPR.

What did we do?

We partnered with 10 sites and have provided about 33 programs so far this year.

Nearly 500 neighbors have participated, mostly through our standard four-program series.

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

We also talk about why they think only 3 percent of residents have had a physician first broach the subject with them.

We discuss 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 also 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.

Some have emerged as what we call conversation champions. They expand the initiative by taking it into their clubs and churches.

Living well and dying well became the subject of several Sunday sermons this November.

Pastors in Chatham are conducting more funerals than baptisms or weddings, and they can be some of our most influential allies.

These champions invited their friends to a screening of the film Defining Hope during Hospice Month.

A theater full of neighbors stayed for the documentary and for a discussion afterward with African American hospice specialists.

We were able to survey about 200 people who participated this year.

They were a population of generally healthy seniors. The average participant was a 70-year-old woman in good health with a household income of $50,000 or less. Half lived alone.

We know that 80 percent know who would speak for them during a medical crisis.

About half have discussed their wishes with that person, and roughly 30 percent have an advance directive.

This data tells us a great deal about what we need to do next.

We will remain in the neighborhood next year and provide facilitation services to residents and their chosen decision-makers, helping them complete informed advance directives.

We will train neighborhood champions who have signed up to become Respecting Choices advance care planning facilitators.

They have received this gift and look forward to offering it to others in their churches and senior clubs.

The movement is growing organically because it has to.

Unfortunately, we do not have the staff or resources to meet the demand from a population many people would dismiss as unwilling to have these conversations.

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.

Her son 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.

Then there is 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 is wearing dark glasses in this photograph because she has a black eye underneath.

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

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, this was great. I’m planning to be there for Gwendolyn then, so I really need to know.”

By sharing what matters most later, they can focus on what is meaningful now, like the Hawaiian cruise they are taking this spring.

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

They have taught us just as much.

One lesson is that 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.

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.

Thank you for allowing me to share that purpose with you.