Program targeting Latinos addresses mix-ups

Key is to build trust, cultural understanding

When Capital Hospice of Falls Church, VA, started an outreach program for the region's Latino community, one area that received a great deal of attention was in choosing the program's name of Caminando Juntos.

"Caminando Juntos means 'walking together,'" says Emily J. Pezzulich, creative advisor for Capital Hospice.

The outreach program's name is intended to emphasize how hospice care is not intended to take the place of the family, but it is intended to serve with the family in caring for a person at the end of life. "In the Latino/Hispanic culture, families take care of their own," she notes. "Multiple generations of families often live in the same home, and births, deaths, and everything in between typically occur at home."

This multigenerational experience underscores the important and deeply entrenched belief that no one can take better care of a family member than the family, Pezzulich says. Because of this, hospitals often are viewed with distaste and suspicion, particularly if they are overcrowded and understaffed, and this distaste is transferred to the word "hospice," Pezzulich explains. "To the extent Latinos have heard about hospice care, it is perceived as a facility with all of the attendant negative associations," she says. "In our experience, very few Latinos understand that hospice is care that can be provided at the patient's home or wherever he or she lives."

Program provides valuable support

Capital Hospice's goal with Caminando Juntos is to teach the Latino community that hospice provides valuable support to families who are caring for a loved one who is seriously ill and that it does not take place of the family, Pezzulich says.

"It helps the family provide even better care for their loved one," she says.

Since the program began in September 2007, hospice referrals have increased significantly, Pezzulich says. For example, there was one terminally ill Cuban man who wanted to go home from the hospital to be with his wife, although he was afraid to be home alone when she was working, Pezzulich says. "Additionally, the wife belonged to a church, members of whom were constantly telling her that hospice would 'kill' her husband," Pezzulich adds. "The hospital had indicated that the only way he could go home was with hospice care."

A Caminando Juntos social worker spoke with the man and his wife to explain what hospice was and how it could help them. The man then decided to enter the hospice program, and he received continuous care for several days until he and his wife were comfortable with the situation, she adds. "He then had our standard home care program with Spanish-speaking CNAs and nurses visiting regularly," Pezzulich says. "He died in our care after 21 days."

Through Caminando Juntos, the hospice trains volunteers to speak to various leaders in the Latino community and to Latino groups.

Volunteers and staff outreach workers need to be trained to understand Latino traditions and cultural nuances, including the traditions, foods, and customs of different Latin American countries, Pezzulich says. Also, Spanish-speaking people need to be on staff to take phone calls and admit and care for patients, she adds. "We spread the word via informational booths and tables at Latino health fairs and festivals, faith communities, city and county agencies, and Latino-owned businesses, Pezzulich says.

Outreach workers distribute Spanish language literature about the program, and they have begun to hang posters in store windows and on community bulletin boards. "A Spanish-language web site and educational radio programs to be aired on local Latino radio stations are currently in development," she says.

The Caminando Juntos program is building trust and a referral base among Latinos, often one family at a time. For example, one woman who recently was a hospice patient had been very cautious about entering the program because her family and friends had told her that hospice people would kill her if she went into the inpatient center for care, Pezzulich recalls. "Fortunately, the family chose to speak to our Caminando Juntos liaison, who explained the real purpose of the inpatient center — to provide short-term care to get difficult pain and symptoms under control," Pezzulich says. "The woman was admitted to the inpatient center and received excellent care, with her family members at her side."

The woman died while in the inpatient center, but her family was so pleased with her care that they've made it a family mission to educate others about hospice care, Pezzulich adds.

Hospice is a win-win situation for the Latino community, and it's up to hospices to get that message out, Pezzulich says. "Latino families will get much-needed medical, emotional, spiritual, and practical support in their homes, from compassionate and trained caregivers," she says. "And we have the privilege of teaching about and providing a highly beneficial service to a grossly underserved and rapidly growing community right in our own neighborhood."