When people hear the word “hospice,” it’s often associated with finality—an end to hope, to options, to life itself. But for many caregivers and advocates, hospice care represents something different: peace, dignity, and the opportunity to say goodbye on one’s own terms.

Despite its essential role in the continuum of care, hospice remains underused and misunderstood—especially in Black communities.

Monica James, Community Engagement Coordinator for Houston Hospice, has seen firsthand the emotional strain families endure when end-of-life care hasn’t been discussed early enough. Serving 13 counties across Southeast Texas, James focuses on educating the public and healthcare professionals about what hospice is—and what it isn’t.

“Many people aren’t prepared for the end of life,” James said. “They haven’t discussed it with their loved ones until there’s a crisis. Sometimes the person is nonresponsive and can’t express what their wishes are. That can cause a lot of conflict within the family.”

James works to dispel cultural and generational misconceptions surrounding hospice care in communities of color.

“A lot of times, people think hospice is about giving up. It’s not,” she explained. “It’s about pain management and symptom relief—not just for the patient, but for the family, too.”

Hospice offers specialized, compassionate support for patients in the final stages of life, focusing on comfort rather than cure. However, according to the National Hospice and Palliative Care Organization, Black Americans on Medicare seek hospice care 13% less often than their white counterparts.

Generational trauma and a lack of trust in the healthcare system play a significant role in these disparities, especially among African American, Afro-Caribbean, and African immigrant families.

“There’s been a historical gap in access and trust,” James said. “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 includes speaking engagements at churches, health fairs, and community centers—places where people feel safe having vulnerable conversations.

“In many families, caregivers don’t seek outside help because they feel it’s their duty,” she said. “We let them know we’re here to walk alongside them and help relieve caregiver stress.”

Connie Marron is all too familiar with the uncertainty surrounding hospice care. As a longtime caregiver for her grandmother and father, she once believed hospice was just a place where people went to die.

“I was 25 when I started caregiving, and back then, I thought hospice was just where people went to die,” Marron said.

That perception changed after she began volunteering with the Harris County Long-Term Care Ombudsman Program and received hospice training. Her understanding came full circle in 2013, when her father entered hospice 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 recalled. “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 hospice team supported not only her father but also herself as a caregiver.

“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.”

Distrust in the healthcare system runs deep in Black communities. A 2020 poll found that 55% of Black Americans distrust the American healthcare system due to historical injustices, including the Tuskegee Syphilis Study.

Though the Affordable Care Act has helped reduce the uninsured rate, Black Americans are still less likely than white Americans to have health insurance. Without insurance, individuals are less likely to seek preventive care, often waiting until illnesses have progressed before seeking help. The economic burden only compounds the issue: Black Americans had the highest poverty rate at 19.5% as of 2021, limiting access to necessary care even when it is technically available.

These barriers often prevent families from pursuing hospice care until it’s too late—or never at all.

For over four decades, Houston Hospice has worked to bridge this equity gap in end-of-life care across the Harris County region. Through community outreach, culturally tailored education, and partnerships with local churches and clinics, the organization aims to reach underserved populations.

Hospice prioritizes quality of life for those with terminal illnesses. While the focus is on managing physical symptoms, it also encompasses emotional and spiritual support—for both patients and their families.

James works within an interdisciplinary team that includes doctors, nurses, social workers, chaplains, home health aides, and trained volunteers. Together, they ensure each patient receives holistic, person-centered care in their final days.

Beyond patient care, Houston Hospice offers grief and bereavement support for up to 13 months after a loved one’s passing. It also provides caregiver education and workshops on topics such as 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 article was originally written by Laura Onyeneho and published by Defender Network on April 22, 2025.