RWJF Scholar examines neighborhood-based death rates from opiate-based painkiller overdoses, compared with heroin overdose deaths.
Staff at the not-for-profit Hospice By The Sea in Boca Raton, Fla., undertook an initiative in early 2002 to increase the number of Hispanic families they serve.
The project was part of the Robert Wood Johnson Foundation (RWJF) Local Funding Partnerships national program (for more information see Grant Results). It provides matching grants to support innovative community-based projects aimed at improving the health and health care of underserved and vulnerable populations.
Hospice By The Sea received an additional $674,500 in matching grants from local funders (see Appendix for list of other funders).
For a testament to the impact of hospice work (as well as more on project results), see Results. For stories of two patients see A Respite for the Family and Christmas for a Young Mother. For a look at the project's difficulties and approaches taken see Challenges and Solutions and Lessons Learned.
RWJF provided $493,954 in support for this project from August 2002 to July 2005.
In 2001 the not-for-profit Hospice By The Sea served almost 4,000 patients and their families in Palm Beach and Broward Counties, Fla. However, only 1.5 percent of those patients were Hispanic—while the Hispanic population in the area was 15 percent and growing.
In 2002, the Southeast Florida Center on Aging predicted that the Hispanic population in South Florida would grow dramatically and represent 21 percent of the population by 2010 and 45 percent of the population by 2025.
According to the proposal for this project, several studies had suggested that obstacles and cultural barriers limit minorities' use of hospice services. Among those barriers are language difficulties, lack of awareness about hospice services, lack of culturally sensitive services and lack of trust in providers.
At the time of this project, Hospice By The Sea employed four specialized teams (team members included physicians, nurses, nurse assistants, social workers, clergy and volunteers) to deliver hospice care according to a patient's location. Two additional teams delivered care exclusively in nursing homes, hospitals and assisted-living facilities.
Approximately 90 percent of services provided by the hospice teams were performed where the patients resided (whether this was a house, apartment, hospital or nursing home), with the balance of care provided at Hospice By The Sea's three in-patient facilities. Teams served all patients regardless of their ethnicity.
Staff at Hospice By The Sea planned to tailor their services to better meet the needs of Hispanic patients. The project had three interventions:
To accomplish these interventions hospice staff established a program called "Abriendo Puertas" (Opening Doors). At the core of this program, hospice staff created a new Hispanic team to serve the entire hospice client area—Palm Beach County and Broward County. When a Hispanic patient or family member made a call to Hospice By The Sea, a referral nurse assigned that case to the Hispanic team (rather than to an interdisciplinary team based on the patient's location).
Hospice staff also hired two outreach coordinators, one through the Hispanic Human Resources Council in Palm Beach and one through Hispanic Unity in Broward. Both are nonprofit, community-based organizations that administer a number of programs.
Hospice staff hired an in-house coordinator to oversee the outreach as well as do her own work to raise awareness about hospice within the Hispanic community.
The project received $674,500 in additional funding from local funders to match the RWJF funding (see Appendix for list of other funders).
According to project staff, the initiative achieved the following results:
|My name is Mari Chumaceiro. I was born and raised in Maracaibo, Venezuela, and as director of the "Abriendo Puertas" program at Hospice By The Sea I have been honored to meet the most incredible Hispanic families. When you are involved with the care of a family dealing with the last days of a loved one's life, you find that emotions are very raw. These families have shared with us their struggles, their sacrifices and their successes. They thank us for all the spiritual, emotional and medical support we have offered them in their time of need, but we are the ones that are thankful because it is through their journey that we grow in our personal understanding of life, of its true meaning, of its potential.|
Project Director Cindy Hassett: "The educational piece of this project was a critical component. We created this team where everyone was rooted in the Hispanic culture and spoke Spanish. Once the message got out [about our Hispanic team] people felt very comfortable with it."
In a report to RWJF, project staff noted the following challenges implementing Abriendo Puertas.
The hospice staff subcontracted with SRA Research Group, a market research firm in Jupiter, Fla., to explore attitudes toward hospice, and particularly toward Abriendo Puertas by conducting three focus groups in Boca Raton, Fla., during September 2004.
The focus groups—of eight to 10 participants each—comprised:
SRA Research Group also conducted telephone interviews with 10 local physicians who treated a large number of Hispanic patients.
In October 2004 SRA Research Group staff reported these findings to project staff:
As of March 2006, the Abriendo Puertas hospice program was continuing, its Hispanic team sustained through reimbursement revenues from Medicare, Medicaid and private insurance.
In 2004, Hospice By The Sea staff started an outreach program aimed at African Americans with funding from two local philanthropies, the Allegany Franciscan Foundation and the Freimann Healthcare Initiative.
Hospice By The Sea has continued its cultural competency learning program for new employees as part of its ongoing orientation and training program for them.
Intervention and Education Program for Hispanic Hospice Patients and Their Primary Caregivers
Hospice By The Sea (Boca Raton, FL)
Cindy Hassett, M.P.A.
Juan Fidencio Sanchez, a native of Cuba, spent much of his adulthood in the United States where he worked as a business administrator until his retirement in 1985 at age 67. Less than two years later, he was diagnosed with Parkinson's Disease. In August 2002, at age 84, he was admitted to the Hospice By The Sea's new Abriendo Puertas program.
While Juan was fluent in English, as he became more ill he spoke only in Spanish and thought more of his days in Cuba. With the Spanish-speaking hospice team, he could communicate in the language most comfortable to him about a culture that they understood. They were delighted to hear his jokes and Cuban songs.
The team members also understood the impact of "la familia" in the Hispanic community where there is a strong dependence on the nuclear as well as the extended family.
Hispanics are proud and honored to take care of their loved ones at home. In Juan's case, his wife Amanda helped care for him, and his daughter Silmar moved in with her parents to help as well. When his care began more difficult, his cousin's wife Triny came to help.
But the Abriendo Puertas team, which had developed a close relationship with Juan and his family, noticed that the family was increasingly stressed and exhausted. Juan's wife became so ill that she had to be hospitalized twice. To add to the pressure, Triny had to return to her home for a family emergency.
Team members told the family about the benefits of respite care, in which Juan would stay at one of the hospice care centers and the family would receive a break from the all-consuming demands of care. The family agreed and the respite stay provided the relief that Juan's family needed. When he returned home, family members, along with the hospice team, were able to care for him until his death in October 2004.
Maria Franco de Leon was a wife and mother of two young boys in 2002 when she and her husband Eduardo arrived in the United States as refugees from Cuba. Maria, age 35, had been diagnosed with breast cancer in Cuba but been assured by her doctors there that it was under control.
She and her husband were thrilled to arrive in the United States with the promise of a new life. But just one month after their arrival, Maria had to seek hospital care for complications of her cancer. She learned that, far from having it under control, her cancer had progressed to the point where she only had a few months to live.
One of the outreach coordinators for Abriendo Puertas made a presentation at the school attended by Maria's children. A teacher took her aside and asked that she talk to Maria about the hospice program.
Soon, the team was providing care to Maria and her family. The family did not yet speak English and Eduardo had to stop working construction to take care of his wife. Having the hospice team there helped the family navigate the health care system and provided Eduardo with a chance to work again.
One of Maria's wishes was to celebrate Christmas—something she had never really been able to do in Cuba. The hospice team arranged a festive celebration, complete with a Christmas tree, decorations, presents for the boys and the traditional roasted pig.
The celebration delighted Maria, who held on so that she could be part of her family's first Christmas in the United States. Not long after, she became even sicker. She asked to be admitted to the hospice care center so that her boys would not see her suffer. She died in January 2004.
After her death, the hospice provided bereavement support and brought the boys, age 6 and 8, to its "Camp Good Grief," which is a camp for children who have lost a loved one. Eduardo said that he was grateful to the hospice team for their support, service and compassion during such a difficult time.
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Hospice By The Sea. Libro de Informacion Para el Paciente y la Familia. Boca Raton, FL, 2003. Unpublished.
Hospice By The Sea. Contestando a sus pregunatas sobre que ofrece un hospicio. (Your Questions Answers About Hospice). Boca Raton, FL, 2003.
Abriendo Puertas: Opening Doors Fact Sheet. Hospice By The Sea, August 2002.
Hospice By The Sea—Focus Group Research Executive Summary. Jupiter, FL: SRA Research Group, October 2004.
Hospice By The Sea—Current User Focus Group Report. Jupiter, FL: SRA Research Group, October 2004.
Hospice By The Sea—Physician Report. Jupiter, FL: SRA Research Group, October 2004.
Hospice By The Sea—Prospect Focus Group Report. Jupiter, FL: SRA Research Group, October 2004.
Hospice By The Sea—Prospect Focus Group Report (post messaging). Jupiter, FL: SRA Research Group, October 2004. (Focus group report issued after a test-marketing effort.)
Educational Outreach Video, an eight-minute videotape in Spanish and English introducing the benefits of hospice services for patients with life-limiting illnesses and their families (includes testimonials by families about the benefits of hospice as well as professionally moderated segments highlighting the process one goes through in using hospice services). Miami: Higher Authority Productions, 2002.
Patient and Family Video, a 10-minute videotape in Spanish and English introducing hospice services to patients and their families that have entered a hospice program (includes hospice care overview and addresses basic caregiver concerns). Miami: Higher Authority Productions, 2002.
A Lifeline for Home Caregivers, a 38-minute teaching videotape, in Spanish and English, detailed the essentials of caring for a terminally ill patient at home. Miami: Higher Authority Productions, 2002.
"Abriendo Puertas Educational Outreach Survey," Hospice By The Sea, fielded September 2002 through July 2004.
www.hbts.org. English language Web site created to facilitate access within the Hispanic community to information about hospice care and the services of a culturally and linguistically specialized hospice patient care team. Boca Raton, Fla. Hospice By The Sea, 2002.
Report prepared by: Susan G. Parker
Reviewed by: James Wood
Reviewed by: Molly McKaughan
Program Officer: Jane Isaacs Lowe
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