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What is Hospice in the Minority Communities?
Hospice historically has served relatively few people of color, although some progress has been made. In order to understand what is hospice for minorities look at the statistics: In 2000, 82 percent of all hospice patients in the United States were white; 8 percent were African American, 2 percent were Hispanic, 2 percent were “other,” and 6 percent were not classified by race or ethnicity. This data, together with reports that African Americans and Hispanics receive less pain medication than whites and a growing body of cultural research on death and dying, indicate that race and ethnicity are associated with barriers to what is hospice care.
Identifying and overcoming these barriers is important in improving access to end of life care now and will become even more critical in coming years. Between 1999 and 2030, the proportion of people of color age 65 and older in the United States is projected to rise from 16 percent to 25 percent.
The hospice model of care and the question such as what is hospice seeks to integrate medical excellence within a community approach to end-of-life experience and care. In addition to clinical professionals, the interdisciplinary team typically includes one or more clergy serving as chaplains. Additionally, a variety of trained and supervised community volunteers from many walks of life serve patients first and foremost by being present, spending time together and demonstrating that the person who is ill matters to them. Some may help with household chores, or assist with life review, or offer other services, such as a massage or manicure simply to brighten the ill person’s day. Volunteers also serve the clinical team, most visibly by contributing observations and insights to the care planning process. More importantly, however, by their time, effort, and presence,volunteers remind busy hospice clinicians of the basic social and community values that professions were created to advance. Our ability to respond to one another in community is not confined to obligation and recognized problems. We also have “response-abilities” to enhance a person’s quality of life and the life of the community: We can bear witness; we can promote opportunity.
What is Hospice in the African American Population?
The Minority Patient and their views on what is hospice or end of life care has varying views but many people of color do not share the value of individualism that is central in mainstream American culture. The individual therefore may not be considered autonomous and separate from the family, and the family may be regarded as more important than the individual. Cultural definitions of family also may differ from the traditional American concept of the nuclear family; they may encompass a large extended network. This is why the answer to what is hospice care continues to be a complex issue in the minority communities.
African American culture places a strong value on the collective, values“community” as a good in itself, and believes in honoring members of their
immediate community, especially the family. The family bonds that dominate the African American culture often are used as a protective measure
against outside forces. Caring for the sick and dying at home is a long- standing tradition among African Americans. Relatives come from other locales to help. Friends, neighbors, and the religious community also participate in providing care and support to dying patients and families. Terms such as what is hospice home care, what is hospice, respite care, and volunteerism are never used to describe these services. African American families feel a strong sense of obligation to gather at the time of death.
What is Hospice in the Hispanic Population?
Among Hispanics, the concept of personalismo connotes “a deep sense of being part of a network that comprises one’s family as well as a sense of
family as an extension of the person.” The valuing of family considerations over individual or community needs is nearly universal. Relatives of Hispanics also participate in the physical and spiritual care of the dying, and many travel considerable distances to do this. Hispanic family members are nearly always willing to provide personal care, but they may be unwilling to provide technical care unless extensive teaching is provided. This is how the importance of hospice and explaining what is hospice and how it can benefit a family comes into play. In some Hispanic families, pregnant women do not provide personal care or attend the funeral. Children sometimes are shielded from involvement in care of the dying, but they also may have great responsibility.
What is Hospice in the Asian Population?
In many Asian cultures, the concept of self also tends to be familial. Boundaries between self and others are less rigidly drawn than in Western
cultures; an individual’s life is interconnected with others, and there is a distinct sense of mutual obligation. These values profoundly influence
care of the dying and what is hospice and how it is related patient and family roles. The Asian family, too, is intimately involved in care of the dying, and family members are often present in medical settings to serve as interpreters if necessary and also to shelter the patient from a bad prognosis or diagnosis and the burden of decision making.
What is Hospice and Increasing Awareness in the Minority Communities
Although informing dying patients about their condition is a dominant value in U.S. medicine and mainstream American culture, people from a number of ethnic groups believe that patients should be protected from this information. A 1995 survey of 800 elderly Los Angeles residents from four ethnic groups found that while nearly 90 percent of Blacks and Whites said that they would prefer a straight prognosis, 45 percent of Korean Americans and 65 percent of Mexican Americans said that they would not want to be told if they had a fatal illness. Belief that patients should be
told the truth about their diagnosis.
When a patient’s illness is life-threatening, it is assumed that practitioners will talk with the family rather than with the patient, who is to be protected. The insistence of American physicians on truth telling is perceived as dangerous and rude. Continued efforts to consult the patient and family about treatment choices and the continuance of life support may be perceived as a lack of commitment to the patient. Similar attitudes have been reported among Armenians and Korean Americans, among whom physical symptoms have been induced when a poor prognosis is given. Some hospice workers serving culturally diverse populations thus have learned to finesse informed consent and to trust relatives to communicate to the patient what is hospice means. Even when talking with families, some hospice workers “never say the C-word (cancer), the D-word (death) or even the
When dying patients and their family members feel that health care providers do not respect their preferences for end of life care and do not understand the values, beliefs, and traditions that underlie them, communications may break down and conflicts develop. This is why it is very important to completely explain what is hospice and the services that they provide. The best way to assist minorities in this aspect is to actually get to know the families and understand the values that they hold. Make sure that the all workers involved are on the same page and in turn this will eliminate mistrust.