Linda H Phung1,2, Deborah E Barnes3,4,5,6, Aiesha M Volow2, Brookelle H Li2, Nikita R Shirsat2, Rebecca L Sudore2,5,6. 1. School of Medicine, Duke University, Durham, North Carolina, USA. 2. Division of Geriatrics, Department of Medicine, University of California, San Francisco, San Francisco, California, USA. 3. Department of Psychiatry and Behavioral Sciences, University of California, San Francisco, San Francisco, California, USA. 4. Department of Epidemiology & Biostatistics, University of California, San Francisco, San Francisco, California, USA. 5. Innovation and Implementation Center for Aging and Palliative Care (I-CAP), Division of Geriatrics, Department of Medicine, University of California, San Francisco, San Francisco, California, USA. 6. Research Service, San Francisco Veterans Affairs Health Care System, San Francisco, California, USA.
Abstract
BACKGROUND/ OBJECTIVES: Advance care planning (ACP) rates are low in diverse, vulnerable older adults, yet little is known about the unique barriers they face and how these barriers impact ACP documentation rates. DESIGN: Validated questionnaires listing patient, family/friend, and clinician/system-level ACP barriers and an open-ended question on ACP barriers. SETTING: Two San Francisco public/Department of Veterans Affairs hospitals. PARTICIPANTS: One thousand two hundred and forty-one English and Spanish-speaking patients, aged 55 and older, with two or more chronic conditions. MEASUREMENTS: The open-ended question on ACP barriers was analyzed using content analysis. We conducted chart review for prior ACP documentation. We used chi-square/Wilcoxon rank-sum tests and logistic regression to assess associations between ACP barriers and demographic characteristics/ACP documentation. RESULTS: Participant mean age was 65 ± 7.4 years; they were 74% from racial/ethnic minority groups, 36% Spanish-speaking, and 36% with limited health literacy. A total of 26 barriers were identified (15 patient, 4 family/friend, 7 clinician/system-level), and 91% reported at least one ACP barrier (mean: 5.6 ± 4.0). The most common barriers were: (patient-level) discomfort thinking about ACP (60%), wanting to leave health decisions to "God" (44%); (family/friend-level) not wanting to burden friends/family (33%), assuming friends/family already knew their preferences (31%); (clinician/system-level) assuming doctors already knew their preferences (41%), and mistrust (37%). Compared with those with no barriers, participants with at least one reported barrier were more likely to be from a racial/ethnic minority group (76% vs 53%), Spanish-speaking (39% vs 6%), with fair-to-poor health (48% vs 34%), and limited health literacy (39% vs 9%) (p < 0.001 for all). Participants who reported barriers were less likely to have ACP documentation (adjusted odds ratio = 0.64, 95% confidence interval [0.42, 0.98]). CONCLUSION: English- and Spanish-speaking older adults reported 26 unique barriers to ACP, with higher barriers among vulnerable populations, and barriers were associated with lower ACP documentation. Barriers must be considered when developing customized ACP interventions for diverse older adults.
BACKGROUND/ OBJECTIVES: Advance care planning (ACP) rates are low in diverse, vulnerable older adults, yet little is known about the unique barriers they face and how these barriers impact ACP documentation rates. DESIGN: Validated questionnaires listing patient, family/friend, and clinician/system-level ACP barriers and an open-ended question on ACP barriers. SETTING: Two San Francisco public/Department of Veterans Affairs hospitals. PARTICIPANTS: One thousand two hundred and forty-one English and Spanish-speaking patients, aged 55 and older, with two or more chronic conditions. MEASUREMENTS: The open-ended question on ACP barriers was analyzed using content analysis. We conducted chart review for prior ACP documentation. We used chi-square/Wilcoxon rank-sum tests and logistic regression to assess associations between ACP barriers and demographic characteristics/ACP documentation. RESULTS: Participant mean age was 65 ± 7.4 years; they were 74% from racial/ethnic minority groups, 36% Spanish-speaking, and 36% with limited health literacy. A total of 26 barriers were identified (15 patient, 4 family/friend, 7 clinician/system-level), and 91% reported at least one ACP barrier (mean: 5.6 ± 4.0). The most common barriers were: (patient-level) discomfort thinking about ACP (60%), wanting to leave health decisions to "God" (44%); (family/friend-level) not wanting to burden friends/family (33%), assuming friends/family already knew their preferences (31%); (clinician/system-level) assuming doctors already knew their preferences (41%), and mistrust (37%). Compared with those with no barriers, participants with at least one reported barrier were more likely to be from a racial/ethnic minority group (76% vs 53%), Spanish-speaking (39% vs 6%), with fair-to-poor health (48% vs 34%), and limited health literacy (39% vs 9%) (p < 0.001 for all). Participants who reported barriers were less likely to have ACP documentation (adjusted odds ratio = 0.64, 95% confidence interval [0.42, 0.98]). CONCLUSION: English- and Spanish-speaking older adults reported 26 unique barriers to ACP, with higher barriers among vulnerable populations, and barriers were associated with lower ACP documentation. Barriers must be considered when developing customized ACP interventions for diverse older adults.
Authors: Terry Fulmer; Marcus Escobedo; Amy Berman; Mary Jane Koren; Sandra Hernández; Angela Hult Journal: J Am Geriatr Soc Date: 2018-05-23 Impact factor: 5.562
Authors: Sangeeta C Ahluwalia; David B Bekelman; Alexis K Huynh; Thomas J Prendergast; Scott Shreve; Karl A Lorenz Journal: Am J Hosp Palliat Care Date: 2014-07-02 Impact factor: 2.500
Authors: Tong Jen Lo; Ngoc Huong Lien Ha; Chong Jin Ng; Gabriel Tan; Hui Mien Koh; Philip Lin Kiat Yap Journal: Int Psychogeriatr Date: 2016-11-23 Impact factor: 3.878
Authors: Ann M O'Hare; Jackie Szarka; Lynne V McFarland; Janelle S Taylor; Rebecca L Sudore; Ranak Trivedi; Lynn F Reinke; Elizabeth K Vig Journal: Clin J Am Soc Nephrol Date: 2016-04-15 Impact factor: 8.237
Authors: Rebecca L Sudore; John Boscardin; Mariko A Feuz; Ryan D McMahan; Mary T Katen; Deborah E Barnes Journal: JAMA Intern Med Date: 2017-08-01 Impact factor: 21.873
Authors: Carmen H M Houben; Martijn A Spruit; Hans Luyten; Herman-Jan Pennings; Vivian E M van den Boogaart; Jacques P H M Creemers; Geertjan Wesseling; Emiel F M Wouters; Daisy J A Janssen Journal: Thorax Date: 2019-01-19 Impact factor: 9.139
Authors: Rebecca L Sudore; Dean Schillinger; Mary T Katen; Ying Shi; W John Boscardin; Stacy Osua; Deborah E Barnes Journal: JAMA Intern Med Date: 2018-12-01 Impact factor: 21.873