Dying Better in Chicago
“You’re not going to like this message, but black folks die differently. That’s just the way it is.”
The voice at the other end of the phone stung. It burned me more than the sun that was beating on my balcony just west of Chicago’s loop where I sat concocting what I thought was a half-way 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 that I had taken for granted. I knew I looked out from a more privileged perspective on a city cut in chunks along stark, racial lines.
I grew up in Memphis, Tennessee.
But it wasn’t until I moved to Chicago that I felt I had a really good understanding of what segregation is.
In more than a decade in Chicago as a broadcast journalist, I worked as what we call a street reporter, covering streets that, at a street level, are straight lines of color.
Black, brown, white.
I’ve knocked on countless doors and asked moms to describe unspeakable pains.
“Tell me about your son.”
“What will you miss the most?”
Traditionally, reporters don’t hug those they interview, but I’ve had more than a few grieving women collapse in my arms.
While neighbors don’t mix with each other across racial lines that you won’t see on a city map, they typically mixed with me. That’s a fact that’s due entirely to my role.
They’re eager to speak up and share with the rest of the city what matters most: the details of one young life that would’ve gone unnoticed.
I thought that instinctively human desire could drive that half-way decent idea I had to some level of success.
Light bulb moment
What was the idea?
To develop a pilot program that opens access to residents of one neighborhood to comprehensive, structured, and trustworthy planning services so residents can consider, communicate, and document their end of life preferences.
To build a culturally competent system, built on trust and community respect in multiple public places so these end of life discussions could flourish and be normalized.
To allow residents to experience end of life care that aligns with their values, goals, and beliefs because they have been shared, understood, and most importantly, honored by loved ones and providers.
The stereotype
Maybe this neighborhood could emerge as a community model for meaningful, end of life dialogue.
That’s the reason I called her in the first place.
An African-American minister’s wife who was keenly familiar with the care challenges in her own congregation.
But she reinforced stereotypes that a few of my friends in medicine sometimes lamented.
“My people,” she said, “will always do everything.”
I feared responding the wrong way because there were plenty of facts that don’t support her claim.
The facts
African-American’s report worse symptom-related suffering at the end of life; poor communication with doctor’s; less-than-adequate pain assessment and overall lower satisfaction with the quality of their end of life care.
Most at the end of life want, I thought, what we all want throughout it. To be heard. To live in accordance with our values. To matter.
I was too off-kilter to say any of that to her and the notion of “her people” got me right off the phone.
I knew that they’re not her people anymore than those on the near West side in Chicago are mine.
Neither are the Puerto Rican’s eight blocks west of me, those of my late husband Carlos.
Carlos
Chicago was our city. Chicago still is my city.
His 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 who was devoted to his role as a local, political reporter.
He was mourned by seemingly 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 was in the ICU, a setting I am certain he would not have chosen, but his death is the reason I guess I started Life Matters Media with his oncologist, Mary Mulcahy, MD.
The non-profit’s roots trace to a conversation we had shortly after my husband’s death.
My instincts as a report led me on this quest to figure out what happened and why; I asked her:
“Why didn’t you ever tell me that Carlos was dying?”
She said something similar but with a subtle difference. She said that his cancer was incurable but it was treatable.
So we focused on that later reality and went full steam ahead doing whatever we could to elongate whatever time we had left.
No matter what Mary had said, it would have never had been enough. Nothing could have prepared us for the ugliness that was ahead.
That day
Things were already worse, but we didn’t acknowledge it.
I was getting ready for work the day Carlos suffered his ultimately fatal pulmonary embolism (PE).
He was sitting with me while I was putting on my make up. I was convinced I needed to go in to work to save my days off should things get worse down the road.
Things were already worse, but we didn’t acknowledge it.
Perhaps we didn’t really even know.
That day, I was preoccupied with how I was going to get him to his chemo appointment the next day. We never paused to consider whether those four hours in an infusion room were the best use of our time.
I spent the day of that chemo appointment I was concerned about at a funeral home conference table, numbed by the events of the prior 24 hours.
Two years later
About two years later, our new organization began community education with a program called Starting the Conversation.
With the help of the Retirement Research Foundation, we launched our first neighborhood initiative in Chatham.
Chatham is home to one of the most solidly middle class black communities in the city of Chicago, with one of the oldest populations.
In a survey we conducted, Chatham residents got our attention.
More than 80 percent of them said that they had thought about the care that they wanted at the end of life. But more than half of them had not discussed those wishes with anyone.
An older population thinking about their future care, but not talking about it.
Education for the end of life
What did we do?
We partnered with 10 sites to provide about 33 programs so far this year. Close to 500 neighbors have participated, mostly by taking part in our standard 4-program series.
We talk about living well at the end of life by thinking about what gives our life meaning now.
We also talk about why they think only three percent of residents have had a physician first broach this topic with them.
We talk about how a well-executed advanced directive reflects a really good conversation, but we also talked through wishes with residents who do not want a document, and often for really good reasons.
We introduce topics of palliative care, and discuss how somebody would know it might be time for hospice. But we also talk about how to access that much needed support with keeping the presence of strangers in our home to a minimum.
We talk about organ donation and stories of local donors, and talk about the many good reasons neighbors don’t donate, and separate those reasons from abuses, and past history and current myth.
We also explore the most economical of disposition options and spark conversation about what attendees have experienced when attempting to bury loved ones.
They learn more from each other than they do any program facilitator. Many Chatham neighbors have told us this process is the most valuable gift their family has ever received. By sharing what matters most later, they can focus on what’s meaningful now.
It’s a movement that’s growing organically. Because it must.
Unfortunately, we have neither the staffing nor the resources to meet a demand in a population many people would write off as unwilling. You can help here.
Betty Ann
Betty Ann thinks it’s crazy that people would think she doesn’t want to have the conversation.
She’s in the same circumstance of too many moms on the city’s south side of Chicago, caring for a son who is left a quadriplegic due to trauma that should never have happened.
Every day for the past 26 years, she has travelled 44 miles each way to visit her son in a nursing home.
He’s on a ventilator. Her son is awaiting the miracle he is praying so faithfully for and would like all treatment to extend his life.
But Betty Ann says at her age, that is too much and hopes for hospice care if she becomes ill. She’s relying on her niece to make that happen because her son is her only child.
Cleo
Cleo has come to four community programs this year with a combined total of 17 relatives. Quality end of life care is a priority for her and you would think, I would think, she has others that are more pressing.
Ten years ago, her neighbors, who run a thriving drug operation, broke into her home.
Since then, to scare Cleo from turning them in, they have vandalized her property, killed her dog and left the bloody pet on her porch, and regularly fire shots outside her window.
She was wearing glasses when I last saw her because she got a black eye falling from her bed, trying to take cover.
Gwedolyn
When we met Gwendolyn Lee, she wanted to clarify her wishes because she worried about her future care.
She’d never been married, and she lives alone.
A month later, she came back to check 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 that if he would be willing to listen to her care wishes, she would know that, this time, it’s for keeps.
Well, 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 said surely only Gwendolyn and I could think 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
One is that all those taboos and stereotypes so often associated with dying are our own hang ups, not those of others. Don’t put them on other people.
And if there are fears, they’re usually not what you would expect. And you won’t know until you ask.
This isn’t cutting edge stuff, but this is the design of a program that is working in a population that many would have considered unlikely to design a better end of life experience for themselves.
Turning 36
This isn’t a life that I would have designed or expected for myself either, and Carlos certainly wouldn’t have expected it for me.
But I think that he would be really happy that my life is in some way connected to trying to fortify an often vulnerable time for a vulnerable population of seniors.
He was the kind of guy who would dance with every older woman at a party, especially if she were there alone.
But for me, I’ll always remember Carlos at 36. That’s an age that I will somberly turn next week. What 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 some purpose.
This article is part original, part transcript of the 2017 End Well Symposium talk given by Randi Belisomo. You can view the full talk here.
