Race, language, ethnicity and sociodemographics are leading barriers impacting Advance Care Planning (ACP) utilization in the United States. Recent studies have shown that minority populations have low rates of documented advance directives (AD) with key barriers to AD completion having been identified as language, poor physician-patient communication, cultural values and health literacy.
When individuals face serious illness, clear, bidirectional communication with healthcare professionals is critical to navigating medical choices and providing patient-centered care. However, this communication is more complex when the patient and healthcare professional face cultural and/or linguistic barriers. Census statistics indicate that nearly 67.3 million U.S. residents speak a foreign language at home, with a quarter of them reporting limited proficiency in English. These numbers practically ensure that healthcare providers will encounter a language barrier at some point. Poor communication between healthcare professionals and families and a lack of culturally proficient professionals make having ACP discussions even more difficult.
Research has indicated that end-of-life (EOL) care discussions may improve knowledge of advance directives and have been shown to be associated with higher completion rates of Do Not Resuscitate (DNR) orders, completion of DNR orders earlier in the disease trajectory, less aggressive medical care, and earlier hospice referrals. However, certain cultural and religious preferences have been identified as barriers to having these EOL care discussions in some cultures. For example, in traditional Chinese culture, discussion of death and dying is taboo and thought to bring bad luck to one’s family. Initiating a discussion about these topics is traditionally considered disrespectful and undesirable.
Another recent cultural study suggests that EOL decision making and preferences are different in racial and ethnically diverse populations. Ethnic groups in this study generally lacked knowledge of advance directives and EOL treatment options and were therefore less likely than Whites to support advance directives as a method of identifying and communicating their wishes.
The Need for Culturally Tailored ACP Discussions
There is a great need for more effective communication as it relates to advance care planning that includes education that is culturally sensitive and documents that are accessible in different languages. It is important to incorporate an individual’s cultural values and priorities into ACP, determine who the patient wants involved in the ACP conversations, and consider the cultural and linguistic relevant barriers when developing an ACP program within minority communities. Development of culturally tailored and language-appropriate tools that promote patient-centered ACP in minority or non-English speaking individuals is important to ensure that all seriously ill patients receive optimal palliative and end-of-life care and support.
Not only is communication difficult when an individual’s native language is not English, but there is the added challenge of translating medical terminology, like “palliative,” into other languages, where these words/concepts don’t exist. It was important to keep the medical terminology to a minimum and explain things in a simpler manner. It is possible to overcome language and cultural barriers but this can cost healthcare organizations and providers increased time and human resources through translating services and interpreters.
Iris Personalized and Culturally Tailored Advance Care Planning
Iris has developed a tailored solution in their Premier ACP service that addresses these cultural factors by utilizing bicultural and bilingual healthcare facilitators and translation services to deliver personalized care planning conversations and education to seriously ill individuals and their families. Our healthcare facilitators communicate in clear and concise methods to ensure adequate understanding of the treatment options and information presented so individuals can make informed decisions about their future care preferences. Our approach targets not only ACP completion, but also individual and caregiver disease and treatment knowledge to enhance the quality of end-of-life care. Our facilitators handle the advance care planning conversations in a manner that would encourage individuals to participate, rather than feel alienated by the process.
Our facilitators address potential barriers by
- being culturally aware and partnering with the individual to understand their perspectives on the topics,
- providing patient-centered support and education, keeping individuals from feeling overwhelmed by the process, and
- guiding individuals through the documentation process step-by-step, adjusting for comprehension levels.
Additionally, Iris offers advance care planning documentation in 26 languages using a user-friendly advance directive written in nontechnical, simple language. This documentation includes identification of a healthcare proxy, preferences for medical and nonmedical treatment, comfort care, and one’s spiritual and interpersonal needs. This helps improve health literacy by providing multi-language documentation and materials presented using specific language designed to enhance understanding.
Health plans and at-risk healthcare organizations can partner with Iris to provide an effective way to service their culturally diverse member population and provide universal access to Advance Care Planning. To learn more about how we can serve your member population with tailored ACP, contact us today.