title: The Desires of Their Hearts: The Multidisciplinary Perspectives of African Americans on End-of-Life Care in the African American Community.
abstract: BACKGROUND
  Studies have identified racial differences in advance care planning and use of hospice for care at the end of life. Multiple reasons for underuse among African American patients and their families have been proposed and deserve further exploration.
  
  
  OBJECTIVE
  The goal of this study was to examine perceptions of advance care planning, palliative care, and hospice among a diverse sample of African Americans with varying degrees of personal and professional experience with end-of-life care and use these responses to inform a culturally sensitive intervention to promote awareness of these options.
  
  
  METHODS
  Semistructured interviews and focus groups were conducted with African Americans who had varying degrees of experience and exposure to end-of-life care both personally and professionally. We conducted in-depth qualitative analyses of these interviews and focus group transcripts and determined that thematic saturation had been achieved.
  
  
  RESULTS
  Several themes emerged. Participants felt that advance care planning, palliative care, and hospice can be beneficial to African American patients and their families but identified specific barriers to completion of advance directives and hospice enrollment, including lack of knowledge, fear that these measures may hasten death or cause providers to deliver inadequate care, and perceived conflict with patients' faith and religious beliefs. Providers described approaches they use to address these barriers in their practices.
  
  
  CONCLUSIONS
  Findings, which are consistent with and further elucidate those identified from previous research, will inform design of a culturally sensitive intervention to increase awareness and understanding of advance care planning, palliative care, and hospice among members of the African American community.
authors.affiliation: 1 Division of Geriatric Medicine, Department of Internal Medicine, UT Southwestern Medical Center, Dallas, TX, USA.|2 Harold C. Simmons Comprehensive Cancer Center, Dallas, TX, USA.
authors.forename: Ramona L
authors.initials: RL
authors.lastname: Rhodes
authors.affiliation: 3 Division of Outcomes and Health Services Research, Department of Clinical Sciences, UT Southwestern Medical Center, Dallas, TX, USA.
authors.forename: Bryan
authors.initials: B
authors.lastname: Elwood
authors.affiliation: 2 Harold C. Simmons Comprehensive Cancer Center, Dallas, TX, USA.|4 Division of Behavioral and Communication Sciences, Department of Clinical Sciences, UT Southwestern Medical Center, Dallas, TX, USA.
authors.forename: Simon C
authors.initials: SC
authors.lastname: Lee
authors.affiliation: 2 Harold C. Simmons Comprehensive Cancer Center, Dallas, TX, USA.|4 Division of Behavioral and Communication Sciences, Department of Clinical Sciences, UT Southwestern Medical Center, Dallas, TX, USA.
authors.forename: Jasmin A
authors.initials: JA
authors.lastname: Tiro
authors.affiliation: 2 Harold C. Simmons Comprehensive Cancer Center, Dallas, TX, USA.|3 Division of Outcomes and Health Services Research, Department of Clinical Sciences, UT Southwestern Medical Center, Dallas, TX, USA.|5 Division of General Internal Medicine, Department of Internal Medicine, UT Southwestern Medical Center, Dallas, TX, USA.
authors.forename: Ethan A
authors.initials: EA
authors.lastname: Halm
authors.affiliation: 2 Harold C. Simmons Comprehensive Cancer Center, Dallas, TX, USA.|4 Division of Behavioral and Communication Sciences, Department of Clinical Sciences, UT Southwestern Medical Center, Dallas, TX, USA.
authors.forename: Celette S
authors.initials: CS
authors.lastname: Skinner
mesh_terms: D000328:Adult; D016223:Advance Directives / Q000523:psychology*; D001741:Black or African American / Q000523:psychology*; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D005260:Female; D017144:Focus Groups; D017051:Hospice Care / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology*; D014481:United States
keywords: African Americans; advance care planning; end-of-life care; hospice; palliative care