By Barbara Kreling, PhD, MPH
Latinos are less likely than whites to use hospice, although there is evidence that their need for services may actually be greater. For example, compared to white patients, Latino patients may be under-treated for cancer pain,2-4 and Latino caregivers have more depression in bereavement.5 Concurrently, the overall population of US Latinos is also growing and aging. At present, Latinos comprise 15% of the US population and are estimated to become the largest minority population by 2015. While there has been an increased effort by hospices to reach out to non-white populations, hospice care is still underutilized by Latino families.6
How Does Latino Culture Affect End of Life Decisions?
End-of-life care decisions are difficult for most families for a variety of reasons, including poor advance planning and complex family communications. For Latinos, there are additional complications such as lack of health insurance and language barriers with physicians and hospice staff. Apart from language and insurance coverage issues, whether or not Latino families choose hospice and how satisfied they are with hospice care, once enrolled, may be shaped by cultural differences. While Latinos are not a heterogeneous group, either racially or nationally, there are some shared cultural norms that may be directly relevant to end-of- life care. Understanding these pertinent cultural differences may help hospice providers reach out to Latinos and improve care for Latino families.
Preferences for Indirect Communication
In non-Latino populations, most patients with cancer want prognostic information from their doctors. They value autonomy and they see information as a way to maintain control.6 Latinos, on the other hand, are disturbed by open communication about death. In the hospice setting, they are surprised by frank discussions about prognosis with caregivers and patients. Latinos feel that truth-telling about prognosis is harmful to the patient and cruel to the family. In Latino families, control is kept within the family, and the patient is often “protected” from information and the responsibility of making decisions.
Commonly, non-Latino hospice families receiving hospice care value information about what to expect in the last days, as it makes them more comfortable knowing what is going to happen and gives them time to call other relatives. In contrast, Latino families typically do not want to discuss the actual death, as articulated by the daughter of a hospice patient: “They gave me a pamphlet of what to expect. It explained all the steps my mother would go through until the day she would die. I did not want to read it. It was a plan or a guide I did not want to know or want to do. They told me I had to read it to be prepared. Even though it was practical advice about how to handle “the end,” I felt it was very drastic.”
Latino Pathways to Hospice
There are significant differences in how families get to hospice. Non-Latino hospice caregivers often know about hospice before the patient’s illness. However, few Latinos have had previous experience with hospice, and thus have little to no knowledge about hospice before it is needed. Of those who know about hospice, many have misconceptions that hospice is a place for poor, old people or for people with disabilities.
The decision to enroll in hospice is made differently by Latinos and non-Latinos. Non-Latinos are often referred by an oncologist, after a process of negotiation between the patient and doctor involving a decision to stop treatment. In contrast, Latinosmay often make the hospice decision during a crisis hospitalization, referred by someone in the hospital other than their physician.
Suggestions for Practice
When reaching out to Latinos, hospice providers are faced with a significant dilemma: how to discuss hospice with a patient and family who prefer not to discuss impending death. This dilemma can be solved by three approaches that address the “secrecy dilemma” and other cultural differences in end-of-life care.
- Community education should be designed to raise the level of knowledge about hospice within the Latino community.
- It is helpful to use structured individual case assessment tools for learning communication preferences within the family. Case assessment tools list specific lines of questioning to identify family attributes, education levels, and preferences for communication.
- In addition to intervening with providers and the community, each Latino family with a terminally ill member may need individual assistance negotiating hospice decisions and hospice care. This may be provided by a social worker, hospice staff, or volunteer from the Latino community.
The cultural sensitivity and diplomacy required for these tasks suggests the need for a trained bi-lingual, bi-cultural community member who is aware of the values of secrecy and denial, as well as the important role of the family in these decisions. This person should use wording that is sensitive (i.e., “future care” rather than “terminal care”) and should assess the family’s preferences for communication. Most importantly, this person can serve as the family’s advocate and a “sounding board” for questions along an unfamiliar journey.
1. This article is based on a study of Latino and white hospice families conducted by: Kreling B, Selsky C, Perret-Gentil M, Huerta EE, Mandelblatt JS, Latin American Cancer Research Coalition. (2010) ‘The worst thing about hospice is that they talk about death’: contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers. Palliat Med. 2010 Jun;24(4):427-34.
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6. National Hospice and Palliative Care Organization. Facts and figures on hospice care in America. National Hospice and Palliative Care Organization . 2005. 2005.
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