Current Research Findings on End-of-Life Decision Making Among Racially or Ethnically Diverse Groups

Abstract

Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.

Impact of a Care Directives Activity Tab in the Electronic Health Record on Documentation of Advance Care Planning

“…Attention must also be paid to providing advance care planning processes that are sensitive to beliefs and values common in racial-ethnic groups that influence decision making at the end of life. 6,[14][15][16][17][18] Our report offers early evidence that a systematic approach is beneficial to documenting care preferences. As we successfully engage more patients in advance care planning, we anticipate that benefits will accumulate.…”

“…5 Substantial racial-ethnic disparities exist in rates of completion of advance directives. 6 Regardless of the proportion of older adults completing advance directives and having POLSTs, documentation of preferences is problematic. 7 In a recent study, agreement between hospitalized elderly patients' expressed preferences for end-of-life care and documentation in the medical records was only 30%; for example, 28% of elders preferred only comfort measures at the end of life, but just 5% of all documented treatment goals reflected this preference.…”

Advance Directives in Patients Over 60 Years Old: Assessment of Perceived Value and Need For Education in the Outpatient Setting

“…Significant attention has been paid to demographic and socioeconomic factors that may explain non-completion. With few exceptions, studies have reported lower completion rates among black, Hispanic and other non-white groups [15][16][17]. These same studies also found that lower education and socioeconomic status were associated with lower completion rates.…”

“…Investigation into potential barriers to completion have revealed a number of patient and family related factors including a lack of knowledge about advance directives, mistrust of the healthcare system, religious, spiritual and cultural beliefs that may be inconsistent with advance directives, and language barriers [17,18]. On the physician side, a lack of formal training on communicating about end-of-life issues, a lack of time, limited prognostic capability, and uncertainty about how to communicate with patient from different racial, ethnic, or cultural backgrounds can contribute to a reluctance to initiate advance directive discussions [18].…”

What are the ethical questions raised by the integration of intensive care into advance care planning?

“…Certain patient characteristics seem to be associated with a higher rate of AD preparation, such as age, Caucasian origin, chronic disease, a higher socio-economic status or level of education, and also better knowledge of end-of-life options (19,(27)(28)(29).…”