Return to 2001 Abstacts List
114. Culture, End of Life Issues and Quality of Care
S Valente, VAGLAHS
Objectives: To examine and describe Hispanic, Black and Caucasian Veterans’ concerns, willingness to discuss end of life issues and desire for information. To explore quality of care indicators in a clinic population. To document feasibility of this population for end of life research.
Methods: All patients with HIV who attend a clinic at VAGLAHS were invited to complete an anonymous one-page survey while they waited for clinic appointments. Data for this study were collected from consenting Veterans as part of baseline data collection for a larger study of culture and end of life choices and preferences. The EOLC, an 18 item End of Life Concerns instrument was developed by the investigator. A judge panel reviewed the instrument to establish content validity and test-retest reliability was measured.
Results: A majority of Veterans with HIV disease who attend this clinic have preferences regarding end of life care and advance directives. Across all culture groups, Veterans desire more information about treatment options (80%), support services (80%), end of life options (70%), pain or symptom management (70%) and advance directives (75%). Veterans reported that their illness caused them to think about end of life issues and meaning of life (77%). Although many respondents did not indicate ethnicity, more African American and Hispanic Veterans indicated that "perhaps" they would be willing to be interviewed than caucasians. The greatest worries included pain management, dying alone, dyspnea, and being intubated again or knocked out for a long time. Most (70%) indicated willing to discuss their end of life concerns with a nurse/counselor. No significant correlations were found among concerns or desire for more information and T Cell counts or Viral load.
Conclusions: This population thinks about the meaning of life and end of life issues. Most express a desire for information about treatment options, social support, end of life options, pain/symptom management and living will, although most patients do not spontaneously ask their physicians for this information. Services to this population would be improved by providing more information, resources, and opportunities to talk with a nurse counselor about end of life issues. Veterans also expressed a need for improved pain and symptom management. When asked on a survey, Caucasian Veterans were slightly more willing to be interviewed about end of life issues than African Americans or Hispanics.
Impact: These Veterans are concerned about the quality of medical care and fear pain, dyspnea, dying alone, and invasive ventilator treatments that prolong their distress. Their attitudes about end of life care are closely tied to one’s attitudes, beliefs, and culture. Veterans fear that their end of life wishes to discontinue life support may be ignored. Undesired, futile, and costly care at end of life represents a substantial burden to the VA healthcare system and Veterans. Veterans also demonstrated a need for improved pain and symptom management and education about living wills. Veterans are concerned about medical care that prolongs the suffering of terminally ill people. A more in depth understanding of Veterans’ perspectives across cultures is needed so we can measure the quality