By Laura Onyeneho
The Houston Defender
When people hear “hospice,” they often think it’s the end of hope, of options, of life itself.
But for the caregivers and advocates, it’s really the beginning of something else. That is peace, dignity and the chance to say goodbye on your terms.
Yet, despite its critical role in the healthcare continuum, hospice care remains underused and misunderstood, especially in Black communities.
Monica James has seen firsthand the confusion and emotional strain families face when end-of-life care isn’t discussed early enough. She works for the non-profit organization Houston Hospice as the community engagement coordinator, serving 13 counties across Southeast Texas. James’s role involves educating both the public and healthcare professionals about hospice and what it isn’t.
“Many people aren’t prepared for the end of life. They haven’t discussed it with their loved ones until there’s a crisis,” James said. “Sometimes the person is nonresponsive and can’t express what their wishes are. That can cause a lot of conflict within the family.”
(Photo Credit: Unsplash / Adhy Savala)
Breaking the stigma around hospice care
James said one of her top priorities is addressing the cultural and generational misconceptions that continue to plague communities of color.
“A lot of times, people think hospice is about giving up. It’s not. It’s about pain management and symptom relief, not just for the patient, but for the family too,” she said.
Hospice care provides specialized, compassionate support for patients in the final stages of life, focusing on comfort rather than cure. According to data collected by the National Hospice and Palliative Care Organization, Black Americans on Medicare seek hospice and palliative treatment 13 percent less than their White counterparts.
For African-American, Afro-Caribbean and African immigrant families, generational trauma and a lack of trust in the healthcare system often lead to delayed decisions about hospice care.
“There’s been a historical gap in access and trust,” said James. “Our goal is to show up consistently, to listen and to let these communities know they have options and that they’re not alone.”
Her outreach strategy involves speaking at churches, health fairs and community centers—anywhere people feel comfortable having vulnerable conversations.
“In many families, caregivers don’t seek outside help because they feel it’s their duty,” James said. “We let them know we’re here to walk alongside them and help relieve caregiver stress.”
Connie Marron knows the fear and uncertainty around hospice care. As a longtime caregiver for her grandmother and father, she admits she initially had no clue what hospice really was.
“I was 25 when I started caregiving and back then, I thought hospice was just where people went to die,” she recalled.
But Marron’s perspective shifted dramatically after volunteering with the Harris County Long-Term Care Ombudsman Program and receiving training through Houston Hospice. Her experience came full circle in 2013 when her father, whom she had cared for over a span of 17 years, entered hospice care during the final days of his life.
“When the ambulance wheeled him into Houston Hospice, he looked around and asked, ‘Am I in the hospital?’” Marron said. “My sister told him, ‘No, Dad. You’ll never have to go to the hospital again.’ He smiled and said, ‘Good.’”
Marron described how the facility staff didn’t just support her father, they cared for her as a caregiver, too.
“The room was peaceful, spacious and comforting. And I knew he wouldn’t be alone,” she said. “I sent everyone else home and stayed with him. I wanted to be there when he took his last breath because I had walked that entire journey with him.”
Misconceptions of hospice care
A 2020 poll revealed that 55 percent of Black Americans distrust the American healthcare system due to historical racism, discrimination and horrific treatment such as the Tuskegee Syphilis Study.
Despite the Affordable Care Act reducing the uninsured rate by nearly 10 percentage points, Black Americans are less likely than White Americans to get health insurance. People without insurance may be less inclined to seek medical attention, even once they are 65 and have access to Medicare.
Since they are unlikely to have a primary care physician without insurance, they are unable to see specialists and must wait until their sickness has gotten out of control before seeking treatment. Black Americans have the greatest poverty rate (19.5 percent) as of 2021, which can make it difficult for them to get the necessary medical treatment both individually and as a system. Both insured and uninsured people might not have the funds to pay for out-of-pocket expenses, which are frequently hidden until the visit.
Houston Hospice resources
Houston Hospice has served the Harris County region for more than 40 years and is working to close that equity gap. Through community outreach initiatives, culturally tailored education efforts and partnerships with local churches and clinics, the organization intentionally reaches out to underserved communities.
At its core, hospice prioritizes the quality of life for individuals with terminal illnesses. It manages pain and symptoms so people can be comfortable. But it’s also about emotional and spiritual support for both patients and families.
James is part of a larger, interdisciplinary care team that includes doctors, nurses, home health aides, social workers, chaplains and trained volunteers. Together, they work to ensure that patients receive holistic support in their final days and throughout their transition.
Beyond direct patient care, Houston Hospice also provides grief and bereavement support for up to 13 months after a loved one’s passing, caregiver education and community workshops on advance directives and hospice myths.
“For communities of color, we have to meet people where they are,” James said. “That means understanding family dynamics, faith and what dignity means to different people.”
This post was originally published on Defender Network and reprinted via Word In Black.