Root beliefs hinder outreach to Hispanics
Cultural, philosophical differences abound
Hispanic population growth is a trend hospice must embrace, but it won’t be easy, experts say. A number of factors contribute to Hispanic underuse of the hospice system, including:
- The term "Hispanic" encompasses a variety of Spanish-speaking cultures, including Mexican, Puerto Rican, Cuban, and Spanish. These larger Spanish-speaking groups are augmented by smaller groups from a variety of Central and South American countries. In some cases, there is resentment among each group for being lumped into the same category with the rest because each has its own unique culture wholly different from the others.
- Language differences prevent hospices from communicating effectively with potential hospice patients.
- Family values are different among Hispanics compared to the majority of Americans. Family extends beyond the nuclear family to include members of the extended family, including aunts, uncles, cousins, and neighbors. There is an inherent responsibility within the family group to care for one another. In situations where a family member is sick, the rest of the family assumes caregiver responsibilities.
- The family will likely not want the patient to know he or she is terminal. They want to relieve all burdens from the sick patient.
- Cultural differences often lead to misunderstandings. For example, staff may perceive that the family’s increased emotional response means the family is in denial or using "bad" coping techniques. However, Hispanics tend to cope with death and dying in very overtly passionate and emotional ways.
- Religion — predominantly Catholicism — plays a large role in the dying process. Prayer, novenas, and other rituals are sometimes chosen over drugs, for example.
A University of Michigan researcher studied why a subset of the Hispanic population — Mexican-Americans, particularly elderly women — in Michigan shied away from hospice care.
According to author of the 1997 study, Lisa M. Topoleski, then a master’s degree candidate, religious views and cultural factors led Mexican-American women to believe that hospice was an unnecessary service.
Fatalism, the belief that there is little an individual can do to alter fate, paralleled with a strong faith in God, contributes to the sense that hospice care is unnecessary, she says. Interviewees told Topoleski that God controls fate, which includes suffering at times. Relief from suffering falls outside their religious beliefs.
Hospice philosophy doesn’t fit all cultures
According to Topoleski, hospices need to understand the cultural relativism that is in play. Specifically, Mexican-American women she interviewed indicated that they did not share the constructed "need" for hospice — the need for a specific discipline that is designed to help them understand and accept death.
If the hospice philosophy is examined in relation to the framework of Mexican-American women in this study, she says, it can be determined that a common definition of proper death is not shared. To the Mexican-Americans, the hospice philosophy is insignificant and does not fit in their cultural framework of death and dying.
According to the researcher, mainstream U.S. society that accepts hospice is part of a Western culture that finds itself without a creedal or mythic framework in which to understand life and interpret death.
Topoleski observed that Mexican-American women did not see the need for a medically enhanced method of dying, nor did they agree that a medical organization can help them through the dying process. Rather, the women said, it was their relationship with God that would help them through the dying process.
Also, the cultural expectations of elderly Mexican-American women play a role in their non-acceptance of hospice. Elderly women in this culture carried the traditional role of caregiver, grandmother, and spiritual leader, leading them to show outward characteristics of being strong, both religiously and physically.
Screening process crucial in prepping teen volunteers
Key factors to watch for
As valuable as teenage volunteers can be, hospice administrators must be aware that not every teen is cut out to perform patient visits. Maturity, past experiences with death (including whether the teenager is grieving over a recent death), and an unfamiliarity with hospice must all be weighed and a subjective decision made as to whether the prospective volunteers should undergo intensive training, receive less intensive training that would allow them to work in the office or thrift store, or be told that their services aren’t needed at the moment.
Hospice officials at the Hospice of the Florida Suncoast in Largo ask the following questions of the prospective teen-age volunteers:
- How did you hear about hospice?
- Why do you think you’d like to get involved?
- What are your goals for this?
- What experiences are you looking for?
- Have you lost a close family member or friend within the last year?
- Do your parents support your decision to do this?
- Do you have transportation available to get to the training and to your placement?
Hospice counsels bereaved volunteers
A potential volunteer — teen-ager or adult — who has lost an immediate family member or loved one within the past year is asked to visit with a hospice counselor to discuss the loss and where he or she is in the grief process. The hospice staff understood that there is no guideline to determine readiness to volunteer following the death of a loved one, so the hospice altered its previous policy of allowing a full year of mourning before allowing people to volunteer. The hospice also offers bereavement services to newly bereaved volunteers.
In addition, Hospice of the Florida Suncoast uses the following guidelines in recruiting teen-age volunteers:
- must be in grades 9-12, between the ages of 14 and 18 years old;
- must fill out an application and undergo a screening process, which includes an intake interview, application, references, code of ethics, confidentiality statement, and publicity release;
- must provide parental consent;
- must undergo a TB test, which must be consented to by a parent (a hepatitis B test is offered, but not required);
- must complete 3-hour Hospice Volunteer Orientation Class required for office or thrift store, or 18-hour Patient and Family Support Training required for any volunteer who will have direct contact with patients or families;
- must have their own transportation to get to and from training and/or volunteer assignments.
Volunteers are given a minimum three hours of training, which prepares them for support activities, such as working in the hospice thrift store. Students who elect to provide direct patient and family contact must take the 18-hour Patient and Family Support Training, which is the same training adult volunteers receive prior to patient assignment. Topics covered in the Patient and Family Support Training include communication skills, the interdisciplinary team, personal loss awareness, ethics and patient advocacy, information about standard precautions, special populations, pain and symptom management and the volunteer’s role in spiritual care, psychosocial grief, and bereavement. Hospice nurses, social workers, volunteer coordinators, and other team members participate in training.
Like adult volunteers, teenage volunteers must complete a one-page written evaluation at the end of every training session with two open-ended questions about the key messages and how to improve the training.
In addition, once volunteers (both teens and adults) complete the training, a volunteer coordinator conducts a one-on-one interview with that new volunteer. The goal of the interview is twofold:
- to assess the quality and effect of the training, i.e., what did this person gain from the training? Is this person ready to have direct contact with patients and families?
- to assess the new volunteer’s interests and skills so as to assist the coordinator in making a good patient match.
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