SummaryTo attract and better serve the many Hispanics in its local community, Hospice by the Sea, Inc., created the Abriendo Puertas (Opening Doors) program, which featured cultural competency training for all staff; a dedicated, bilingual care team providing culturally and linguistically appropriate care to Hispanic patients and families; and outreach to educate local Hispanics and the physicians who serve them about the availability and purpose of hospice services. The program enhanced awareness of, attitudes about, and willingness to accept hospice services among Hispanics, and improved the cultural competency of staff. As the program grew, program leaders realized the Abriendo Puertas care team had reached capacity and they could not staff adequately to offer multiple dedicated care teams. In 2008, program leaders disbanded the existing team, integrating its members into other, geographically based teams so that they could better serve Hispanic patients. Other elements of the program, including outreach to the community and staff training, remain in place.Moderate: The evidence consists of pre- and post-implementation comparisons of the following: awareness of and attitudes about hospice care among Hispanics in the community; the number of Hispanic patients served by the hospice; and the proportion of overall patients that Hispanics represent. It also includes post-test data on a cultural competency knowledge test administered to staff following the completion of an educational program.
Developing OrganizationsHospice by the Sea, Inc.
Date First Implemented2002
Race and Ethnicity > Hispanic/Latino-Latina; Vulnerable Populations > Immigrants; Non-English speaking/Limited English proficiency; Racial minorities; Terminally ill
Problem AddressedHispanics can benefit from hospice and palliative care services, which have been shown to improve quality of life for terminally ill patients and their families.1 Yet they remain reluctant to use these services, due to multiple cultural and linguistic barriers and a general lack of awareness and understanding of them.
- Disproportionately low utilization: Despite evidence showing that hospice and palliative care services improve quality of life for terminally ill patients and their families,1 Hispanics are less likely than other ethnic groups to use these services. Hispanics represent only 6 percent of hospice patients nationally,1 yet make up almost 17 percent of the U.S. population.2 Before implementation of this program at Hospice by the Sea, Inc. (HBTS), a Florida hospice provider, only 1.5 percent of its patients were of Hispanic origin, though Hispanics made up 18 percent of the local population and represented the fastest-growing ethnic group in the area.
- Despite potentially greater need: These low utilization rates exist though Hispanic patients could potentially benefit more from hospice services than other ethnic groups. Compared with white patients, Hispanic patients tend to be under-treated for cancer-related pain3 and Hispanic caregivers exhibit more severe levels of depression after the patient dies.4
- Multiple barriers: Before implementation of this program, Hispanics faced multiple barriers to accessing services at HBTS (as they do in many other areas as well). Major barriers included the following:
- Cultural beliefs: As in many Hispanic communities, the local Hispanic culture tended to espouse a fatalistic attitude toward terminal illness and pain, and many Hispanics in the area remained reluctant to discuss death and terminal illness and preferred to die in the hospital rather than at home so as not to burden their families.
- Language difficulties: Before implementation of this program, HBTS did not have an adequate number of staff fluent in Spanish, particularly at crucial interaction points, such as patient intake. Services were also not organized to ensure that Spanish-speaking patients always had a Spanish-speaking point of contact.
- Lack of understanding and awareness: The local Hispanic community was not well informed about the existence and purpose of hospice services. Focus group research conducted in 2004 by HBTS showed that the Spanish word for hospice, hospicio, had extremely negative connotations of abandonment and was associated with institutionalization. The same research showed that Hispanic patients often weren't aware of what types of patients are eligible for hospice care, or that insurance coverage is available for it.
Description of the Innovative ActivityTo attract and better serve the many Hispanics in its local community, HBTS provided cultural competency training to all staff; created a dedicated, Spanish-speaking intake and care team that provided culturally and linguistically appropriate care; and conducted outreach to educate local Hispanics and the physicians who serve them about the availability and purpose of hospice services. Known as the Abriendo Puertas (Opening Doors), this program features the following key elements:
- Cultural competency training for all staff: All existing staff completed the Cultural Competency Learning Program, which evolved to become part of the required orientation and training program for new hires. This program reviews the concept of culture and its various domains, and offers ethnic-specific modules for the Hispanic, Jewish, and African-American communities. Modules review the following: areas in which the cultures may differ, particularly with respect to how those differences might affect attitudes about and the provision of hospice care; an analysis of the cultural differences in stages of dying and of accepting the death of a loved one; and specific aspects of Hispanic culture that affect patients' and families' approaches to death and dying, and their interactions with health care providers during this time. For example, Hispanic patients and families may be more reluctant than other groups to ask questions or express disagreement with providers, or to express their feelings to those outside the family.
- Dedicated, interdisciplinary, culturally sensitive intake and care team: The hospice redesigned its existing staffing and workflow to offer multidisciplinary, culturally sensitive care to Hispanic patients and their families, as outlined below:
- Bilingual intake team: HBTS hired a bilingual secretary to handle patient and family telephone inquiries and a full-time Spanish-speaking volunteer coordinator to find Hispanic volunteers in the community. It also established a toll-free, Spanish-language telephone number available 24 hours a day to handle calls during nonbusiness hours.
- Dedicated culturally competent care team: Under the standard model used at HBTS, hospice care teams were divided by function and served specific geographic areas and care settings (e.g., homes, hospitals, nursing homes, assisted living facilities). Consequently, those who speak Spanish or happened to understand Hispanic culture may or may not have been assigned to Hispanic patients. Under Abriendo Puertas, the hospice hired and trained bilingual staff to form a dedicated care team assigned exclusively to Spanish patients and their families, with all team members speaking English and Spanish. This team handled care for all Hispanic patients, regardless of geographic location or care setting. The team provided all aspects of care in a culturally sensitive manner, including referral and assessment, patient care, family counseling, and bereavement services. For example, team members understood the role of the family and close friends in the patient's care, and were aware of potentially different expectations for personal space and eye contact that Hispanics may have (as compared to patients and family members in other ethnic groups). They also understood and honored the importance that many Hispanics place on spiritual issues and concerns, and their tendency to believe in natural remedies and certain food combinations to promote good health. The dedicated team was disbanded in 2008, with team members joining other teams; see the Planning and Development Process section for more details.
- Educational outreach to Hispanic community: The hospice embarked on a significant outreach effort to educate individuals and physicians in the Hispanic community about the availability and purpose of hospice care. These efforts included the following:
- Outreach contractors: In addition to one dedicated Hispanic Outreach staff member, the hospice contracted with two Hispanic community organizations, Hispanic Human Resources Council and Hispanic Unity of Florida, to assist with the outreach effort.
- Presentations to organizations and at events: Hospice representatives visited 46 community-based organizations serving Hispanics (e.g., churches, other Hispanic organizations) and participated in health fairs and other community events catering to Hispanics. Through these efforts, the hospice directly reached 14,743 members of the Hispanic community, a little less than one-half the original goal. The inability to reach the target stemmed in large part from some of the barriers alluded to earlier, including a general lack of understanding in the community about hospice services and a sense of taboo surrounding the subject of death and dying.
- Media coverage: The hospice embarked on an organized media campaign that included written publications and radio and television advertising and broadcasts. Through these efforts, the campaign reached 152,870 individuals (almost 3 times the original goal), including 6,600 community members through a Spanish-language section of the organization's Web site.
- Physician outreach: After focus group research identified physicians as the most important influence on a Hispanic patient's decision to choose hospice care, the hospice launched an initiative designed to reach 215 physicians who collectively care for one-fourth or more of Hispanic patients in the community. Through one-on-one sessions, physicians received a specially designed educational presentation about hospice care and the Abriendo Puertas program. All the targeted physicians were contacted at least once during the 3-year grant period, and some were contacted multiple times.
References/Related ArticlesHospice by the Sea, Inc. Web site. Available at: http://www.hbts.org/.
Kreling B. Latino families and hospice. American Hospice Foundation. 2010. Available at: http://www.americanhospice.org/articles-mainmenu-8/about-hospice-mainmenu-7/519-latino-families-and-hospice.
Robert Wood Johnson Foundation Local Funding Partnerships. Florida hospice uses grant to improve outreach, service to Hispanics. Final grant summary. 2006 Aug. Available at: http://pweb1.rwjf.org/reports/grr/046134.htm.
Contact the InnovatorCynthia Hassett, MPA
Corporate Project Manager and Director of Grants
Hospice by the Sea, Inc.
1531 West Palmetto Park Road
Boca Raton, FL 33486
Innovator DisclosuresMs. Hassett reported having no financial interests or business/professional affiliations relevant to the work described in the profile, other than the funders listed in the Funding Sources section.
ResultsThe program enhanced awareness of, attitudes about, and willingness to accept hospice services among Hispanics, and improved the cultural competency of staff.
Moderate: The evidence consists of pre- and post-implementation comparisons of the following: awareness of and attitudes about hospice care among Hispanics in the community; the number of Hispanic patients served by the hospice; and the proportion of overall patients that Hispanics represent. It also includes post-test data on a cultural competency knowledge test administered to staff following the completion of an educational program.
- Greater awareness of (and improved attitudes about) hospice services: Among 3,000 individuals completing a questionnaire before and after attending a presentation in the local community, knowledge of hospice services increased by 128.6 percent, while attitudes about hospice care improved by 111.7 percent.
- Greater willingness to access hospice services: Interest in hospice services has increased markedly for Hispanics since the program began. By the end of the 3-year grant period, HBTS cared for an average of 22 Hispanic patients a day, up from between 7 and 8 at the start of the program. During the program's third year, the hospice cared for 140 Hispanic patients, nearly double the 72 Hispanic patients served in the year before implementation. During the last 3 months of the program, Hispanics represented 5.8 percent of the patient base, up from 1.5 percent before the program began.
- High cultural competence among staff: During the 3-year program, staff completing the training program scored an average of 86 percent on a cultural competency test.
Context of the InnovationFounded in 1978 by a small group of citizen volunteers, and licensed in 1981, HBTS serves Palm Beach and Broward Counties in Florida, providing hospice services in facilities (e.g., hospitals, nursing homes, assisted living facilities) and at home. At the time the Abriendo Puertas project began in 2002, the organization cared for an average of 400 to 430 patients per day, using 4 teams to serve patients at home and 2 teams to serve those in facilities.
The impetus for this program came from a study conducted by the hospice of the cultural needs of patients and the community, which concluded that the hospice did not adequately serve the growing Hispanic community in the area. As noted, Hispanics were dramatically under-represented among patients (making up only 1.5 percent of all patients, well below the 18 percent of the area's population represented by Hispanics).5 To address this problem, the organization decided to develop a dedicated, culturally sensitive care team to better meet the special needs of the Hispanic population, and to reach out to that community to enhance awareness and understanding of hospice services.
Planning and Development ProcessKey steps included the following:
- Forming steering committee: An in-house project steering committee formed, made up of managers in key departments, Hispanic staff advisers, and the project director. Meeting on a monthly basis during the development phase, this committee facilitated and coordinated the entire planning process.
- Recruiting Hispanic advisory committee: The steering committee recruited leaders of Hispanic community organizations and other prominent members of the Hispanic community to serve on an advisory committee. Meeting on a monthly basis, this 15-member committee provided valuable input, particularly with respect to strategies for raising awareness, since many committee members were not initially familiar with hospice services. It also opened up lines of communication to potential targets for the outreach campaign.
- Recruiting partner organizations: Several partner organizations were brought in to help develop, promote, and analyze the program, including the Area Agency on Aging, the Palm Beach Literacy Coalition, and Nova Southeastern University. Hispanic Human Resources Council in Palm Beach County and Hispanic Unity of Florida in Broward County each supplied a staff member under contract to assist with outreach during the first year of the program.
- Securing funding: The Quantum Foundation agreed to provide seed money, which also qualified the program to receive additional funding over 3 years from the Robert Wood Johnson Foundation’s Local Initiative Funding Partners Program. The eventual goal was to have program-related costs covered by patients’ insurance. (See the Funding Sources section for more details.)
- Hiring bilingual staff: Finding bilingual nurses proved to be difficult, as relatively few registered nurses were available locally, and those available often did not have equal fluency in both languages. After advertising in newspapers and professional journals and participating in job fairs, the hospice ended up recruiting bilingual nurses from Puerto Rico.
- Developing cultural competency learning program: The development process was headed by a member of the hospice's education staff who was also an anthropologist. A multicultural group of hospice employees was recruited to help develop the program and its various modules.
- Revamping program: By 2008, HBTS found its daily Hispanic patient base had expanded beyond the 20 patients that the 1 team could handle effectively. Although the program was financially self-sustaining from patient revenues as projected, a second dedicated team would have been needed to continue it in the same form. Because staffing was already challenging, program leaders decided to disband the original team and incorporate its members into the existing geographically based teams to care for Hispanic patients in those areas. Outreach efforts to the Hispanic community continue, however, as does the practice of providing cultural competency training to all new staff. Because all employees receive such training, the need for a separate care team is less urgent than at the beginning of the project.
Resources Used and Skills Needed
- Staffing: Abriendo Puertas employed the following dedicated personnel: a program director, team leader, 2.5 registered nurses, 3 certified nurse assistants, a spiritual counselor, 2 social workers, a secretary, and a part-time physician. In addition, an outreach coordinator for Broward County worked on the program for the first 2 years; a professional relations liaison worked on it in year 3; and a volunteer coordinator worked on it in years 2 and 3. The dedicated Abriendo Puertas care team could handle roughly 20 patients at a time (compared with 30 for the other care teams); see the Adoption Considerations section for further discussion of this difference in expected case loads.
- Costs: Hospice care costs for the Hispanic patients were comparable to those for other HBTS patients, though the Abriendo Puertas team had higher mileage costs because of the larger geographic area they had to cover. Costs for the outreach effort to the Hispanic community, not including personnel salary and benefits, were approximately $173,000 over the 3 years of the Robert Wood Johnson grant period, and included printed materials, video production expenses, advertising, translation fees, Web site enhancement, networking/event expenses, books and other publications, focus group research, and branding.
Funding SourcesAllegany Franciscan Ministries; Quantum Foundation; Schmidt Family Foundation; Wasserman-Rubin Foundation; The Walter and Adi Blum Foundation; Mr. and Mrs. Meyer Eisner; The Frank Stanley Beveridge Foundation; Mr. Harry Maus; The Perper Foundation; The Russek Foundation; Sun-Sentinel Diversity Venture Fund; The Robert Wood Johnson Foundation; Palm Healthcare Foundation; Community Foundation of Broward
The program was funded by a combination of grants and third-party payments for hospice services from public and private insurers. Grant funding totaled $1,168,000 over the 3-year period. Quantum Foundation provided seed money of $300,000. The Robert Wood Johnson Foundation provided $494,000. Patient care revenues totaled $2.9 million over the 3-year period. HBTS provided an in-kind contribution of $290,391 during the grant period, which reflects overhead expenses, administrative costs, and office equipment and supplies for the Abriendo Puertas team.
Getting Started with This Innovation
- Assess local workforce: The local community may not have enough qualified bilingual individuals to staff the program, creating the need to recruit from other geographic areas or other specialties, such as primary care.
- Provide Spanish-language services at all contact points: As noted, Abriendo Puertas hired bilingual staff and created a toll-free telephone line to ensure that anyone contacting the organization who spoke Spanish could be served in their native language.
- Anticipate staff acclimation period: Providers new to the hospice environment can take up to 1 year to learn to cope with the emotional realities of the care setting and to develop the necessary case management skills, and up to 2 years to be completely comfortable with both. The acclimation challenge may be even greater for staff recruited from outside the local area. As noted, Abriendo Puertas hired nurses from Puerto Rico. These nurses had to adapt not only to the hospice care environment (since they came from acute-care settings), but to a new personal environment. The challenge of those multiple adaptations proved too stressful for most; of 6 nurses hired, only 1 remained with the program over the long term.
- Concentrate outreach on physicians: As noted, members of the Hispanic community may not be receptive to the hospice message due to a cultural reluctance to discuss end-of-life issues in advance of need. However, they do listen to their physicians, and hence doctors with large Hispanic patient populations may be a more efficient and effective channel for getting the message about hospice into the community.
- Expect some resistance to Hispanic team: Initially several families refused to be served by the Abriendo Puertas team, either because they questioned the relative quality of care or because they believed they did not need a Spanish-speaking team. (Hispanic patients were automatically assigned to the team unless they specifically requested not to be.) Over time, the team found that many initially reluctant patients and families began speaking Spanish to their caregivers, and as they became better acquainted with them, this personal relationship allayed their concerns about quality of care.
- Adjust expectations for patient load: The bilingual team may have to spend more time than average with patients and families to meet their expectations. In fact, program designers underestimated the time required to build relationships with families (known as personalismo), and accommodate those expectations. In addition, a dedicated team may have to cover a larger geographic area than normal, depending on how Hispanic patients are distributed within the community. For example, while HBTS's regular care teams served specific areas and had relatively short travel times between patients, the Abriendo Puertas team had to cover the entire two-county area. Any organization attempting to implement this program should pay significant attention to the impact of these two factors on service delivery processes, case loads, and associated staffing needs. Between the extra travel time needed to cover a larger geographic area and the extra time needed per visit, the Abriendo Puertas care team could only comfortably care for up to 20 patients at a time, compared with 30 for the other care teams.
Sustaining This Innovation
- Work with facility staff on cultural awareness: Some Hispanic patients and families prefer to receive hospice services in the hospital or other facility settings as long as the family can be present. Consequently, the care team should be prepared to deliver services in these settings and to work with their staff to promote cultural sensitivity.
- Establish and maintain links with Hispanic churches: HBTS initially tried to connect with Hispanic churches as a venue for outreach, but had limited success in doing so. Given the importance of faith and spirituality in the Hispanic community, however, pursuing relationships with these churches still makes sense, as they can greatly strengthen acceptance of hospice services among their congregants.
- Maintain pool of bilingual volunteers: Bilingual volunteers can often provide the extra personal contact expected by Hispanic patients and their families.
Use By Other OrganizationsHBTS has provided materials and information on the program to a number of other hospices that have expressed an interest in modeling their own services after Abriendo Puertas; these organizations include Hospice of the Comforter (Orlando, FL); Merrimac Valley Hospice (Lawrence, MA); Hospice of Boulder and Broomfield Counties (Lafayette, CO); Willamette Valley Hospice (Salem, OR); and The Community Hospice (Rensselaer, NY). The Cultural Competency Learning Program was presented to 109 outside organizations during the grant period.
National Hospice and Palliative Care Organization. Facts and figures on hospice care in America. 2012. Available at: http://www.nhpco.org/
Cleeland CS, Gonin R, Baez L, et al. Pain and treatment of pain in minority patients with cancer. The Eastern Cooperative Oncology Group Minority Outpatient Pain Study. Ann Intern Med. 1997;127(9):813-16. [PubMed]
Juarez G, Ferrell B, Borneman T. Influence of culture on cancer pain management in Hispanic patients. Cancer Pract. 1998;6(5):262-69. [Pubmed]
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Service Delivery Innovation Profile
Original publication: August 14, 2013.
Original publication indicates the date the profile was first posted to the Innovations Exchange.
Last updated: October 09, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.