Judith Grant was desperate for a wheelchair and special bed to bring home her ailing 32-year-old daughter from a nursing facility.
In her dark living room, where the windows were draped with sheets and blankets to keep out the Florida heat, Grant tried to manage four grandchildren under 12. A 13-month-old who was born prematurely, a surviving twin, lay quietly in his car seat, oxygen tank and other medical supplies close by.
On this day, Grant, 52, was at her wits' end. She couldn't get help for her daughter, a cancer survivor who suffers from seizures and strokes, she said. As a last resort, she called Suncoast Hospice. The group was already helping with baby Javon and counseling his siblings as they cope with the death of his twin brother and the chronic illness of their mother.
Grant is African-American. National studies say blacks use hospice at a lower rate than whites. The same is true for Hispanics, Asians and other minorities. Experts cite cultural mores, myths about hospice and overall mistrust of the medical system as some of the reasons.
Hospices want to change that.
"Hospices across the country have been very deliberate at looking at their communities to find out what they need to change and what they need to do to reach everybody in their community that needs their care,'' said Andy Duncan of the National Hospice and Palliative Care Organization.
In Pinellas County, Suncoast Hospice has hired cancer survivor and St. Petersburg native Ann Sherman-White to increase awareness of hospice to people in diverse communities.
"Many people in the community were not aware that we were there for counseling for suicides and homicides and sudden death,'' said Sherman-White, who recently attended a prayer vigil for 8-year-old Paris Whitehead-Hamilton, who was killed in a gang-related, drive-by shooting.
"So we had the opportunity to go out to let the family know that hospice grieved with them, that we offer counseling to the family and the community.''
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Health care and social workers — many of them minorities themselves — say complex issues discourage certain groups from taking advantage of hospice programs. For many, turning to hospice may seem like giving up on family, hope or God. There are other misconceptions, said Sharon R. Latson, senior director of Access Initiatives for Vitas Healthcare Corp., a for-profit organization that operates 46 hospice programs in 15 states and the District of Columbia.
"The biggest thing is that hospice is a place to go and die. The other one is that hospice will deny you food. You'll starve to death, and that's really big, because in the African-American community, food is a way of showing love,'' Latson said.
Bettye Bradshaw, who works for Memorial Cancer Institute in Hollywood, said some believe hospices "let the patient die, that they don't give them their medication, that they won't give them oxygen, that they give them too much medication."
Pattye Sawyer, vice president of community health programs for Suncoast Hospice, said minority groups believe in taking care of their own. "And we are not open to having someone from the outside coming into our homes,'' she said.
For Latinos, the word hospice causes panic, said Maribel Quiala, a licensed clinical social worker and national spokeswoman for the Leeza Gibbons Memory Foundation. "Latinos feel that hospice is a place, a place where it all ends,'' she said.
Many don't understand that hospice is a service "that in many cases can turn the patient around,'' she said. "Not everyone ends up dying. That's what a lot of Latinos don't know.''
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Cornerstone Hospice in Central Florida formed a 15-member diversity council to "first look at ourselves to determine who we are as a diverse organization, determine our own individual biases, and then look at the diversity in the communities we serve and how we might serve them better,'' said Barbara Lengemann, the group's executive manager of services.
"Traditionally, hospice has underserved some minority populations. We're really about looking at how we can rebuild trust and bridge that gap,'' she said.
There have been changes over the years, said Don Hires, manager for bereavement and pastoral care. "When I started in hospice 25 years ago, it was one size fits all. Now the population we serve just here transcends all cultures, all beliefs. We have Muslims, we have Hindus … It behooves us to learn about them as they learn about us.''
The number of minorities using hospice is increasing, said Latson of Vitas Healthcare, but many wait too late to take advantage of the program. "Compared to the Caucasian population, which is using it from six to eight weeks, for African-American people, it is two weeks,'' she said. "With some African-Americans, it's not more than three or four days. A lot of that also has to do with the medical community not referring patients early on.''
A doctor referred Ernest James, a St. Petersburg minister, to hospice in 2003. He had been diagnosed with throat cancer.
"Everybody thought he was about to expire,'' said his wife, Clarissa James, 49. "In African-American culture, this was the end.''
She said a parade of friends and relatives stopped by apparently to pay their last respects.
"Because you have hospice, it doesn't mean you're going to die,'' her husband said. "It could mean you're going to live.''
Last weekend, the couple celebrated the fifth anniversary of Breaking Free by Faith Outreach Ministries, which helps substance abusers and the homeless. Without Suncoast Hospice, the St. Petersburg couple said, there would have been no ministry.
Ernest James, 51, said he understands African-Americans' strong connection to their faith but has advice about what hospice could offer. "I would tell them that even though we are believers and we trust God for everything, the Lord has people put in certain places to do certain things and hospice was one of the things that God has put in place for us,'' he said.
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Hospice often does precede death, but organizations nationwide say their programs can make the transition easier for patients and families.
"This is a time to celebrate and reflect and emphasize the quality of life that still exists,'' said Sherman-White of Suncoast Hospice.
At Judith Grant's home, life remains hectic, but she is happy that her family is united. She says Suncoast Hospice will provide in-home medical care for her daughter and has provided a wheelchair, special bed and bedside commode.
"I called and talked to them on Thursday, and Tuesday they had my baby back home," she said.
Waveney Ann Moore can be reached at firstname.lastname@example.org or (727) 892-2283.