Dying to Know: A Community Survey about Dying and End-of-Life Care

Abstract

A community survey of Sioux Falls, South Dakota was conducted in 2004 to understand knowledge, attitudes, and preferences about end-of-life (EOL) care and to generate conversations about these topics. Questionnaires were sent to 5,000 randomly selected households, with a return of 1,042 (21%). Most respondents said preparation for EOL is very important, yet far fewer had taken steps to ensure their EOL wishes would be known or met. These disparities are examined, with recommendations for future research and public policy. Bivariate analyses revealed significant differences by age, sex, education, marital status, and religiosity. Community studies are important for baseline understanding, evoking conversation, and setting goals for change. Public education is needed to strengthen understandings of hospice care, and professional education is needed to raise awareness about practitioners' roles in resolving discrepancies between what people want and what they get at end of life.

Factors Associated With Favorable Attitudes Toward End-of-Life Planning

“…The association between increasing age and more positive attitudes toward hospice is consistent with previous findings that older age is associated with more planning for EOL. 15,29 Our finding that higher education is associated with more positive attitudes toward hospice is also consistent with prior studies that found the connection between higher educational level and increased planning for EOL, 29,31 more comfort communicating about EOL, 29,31 and increased knowledge of hospice. 27 The final EOL planning model showed that older age, having no religious affiliation, and having prior knowledge of living wills were associated with preferences for less intensive medical interventions at the EOL.…”

“…28 Individuals who describe themselves as very religious may be more likely to prepare for EOL (complete a living will and advanced directive). 29 Marital status has also been found to influence EOL care decisions. When comparing single, married, divorced, and widowed people, widows are more likely to plan for EOL, people who are single are more likely to have discussed EOL wishes with friends and family, 29 and unmarried persons are more willing to use hospice services.…”

“…29 Marital status has also been found to influence EOL care decisions. When comparing single, married, divorced, and widowed people, widows are more likely to plan for EOL, people who are single are more likely to have discussed EOL wishes with friends and family, 29 and unmarried persons are more willing to use hospice services. 20 Interestingly, married people are more likely to use hospice services than unmarried people.…”

“…30,31 There are some studies that have focused on EOL knowledge and attitudes in younger populations, 18,32 but hardly any studies of EOL knowledge and attitudes have been conducted using large, ethnically diverse samples with large age ranges. 20,29 Moreover, studies that have investigated ethnocultural differences in EOL decisions have used very small sample sizes, making generalizability difficult. 27,28,30 It was hypothesized that selected sociodemographics (i.e., age, ethnicity, having a religious affiliation, relationship status), previous knowledge, and experiences with EOL care (i.e., as knowing that hospice care exists or having a living will) may influence patients' EOL planning (i.e., EOL health care decisions and hospice use).…”

Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: A systematic review*

“…These patient-based differences paralleled physician religion-based differences (92). A community survey in South Dakota found that self-reported "religiosity" played a role in attitudes toward end-of-life care (93). Less frequently identified patient-level factors included personality traits (48), previous experience with critical illness (88), socioeconomic status (37), whether the admission was related to surgery (24), having a longitudinal primary care provider (88), and rural compared to urban setting (94).…”