Advance Care Planning Initiatives
Lessons Learned from an ACP Intervention
Objectives: Describe common barriers to Advance Care Planning (ACP) in minority elders, and strategies to ameliorate them.
Introduction/Background: Seriously ill elders frequently receive aggressive care at the end of life. This is particularly true among racial /ethnic minority or impoverished patients, in part because they may lack consistent primary care. Although all patients admitted to the hospital are asked about advance directives, screening inquiries seldom result in meaningful discussions about future care.
This ongoing pilot project aims to ensure minority/impoverished elderly hospitalized patients and their health care proxies (HCP) are fully informed about their ability to make treatment decisions. We received a grant from a local foundation to launch a two-year trial, and secured a commitment from hospital leadership to permanently sustain the project if successful.
Methods: We held two facilitated focus groups with local Black/Latino community members with caregiver experience, seeking advice about barriers and recommendations for successful ACP. We then hired and trained two Social Workers (SW) to engage patients in meaningful discussions about ACP. SW training included advice from the focus groups and thorough understanding of ACP documents. Eligibility criteria are: hospitalized patients ages >65; no previous palliative care referral; and racial and ethnic minority and/ or Medicaid-eligible. We collected demographic data, initial and post-intervention ACP status, utilization details, and vital status for 6 months post-discharge.
Results: Focus group feedback included cultural/religious considerations, emphasizing that timing and language are crucial. They advised us to concentrate on empowering patients, and cultivating relationships with patients /families before launching into discussions. Identified turnoffs included providing information too fast, and not giving patients /families choices about site and timing of conversations.
To date, the SWs approached 710 patients > age 65. A majority (57.4%, N = 405) are Black, 4.1% (N = 31) are Latino, and 38.6% ( N = 274) are low-income White. Most (55%, N = 390) initially lacked any current ACP documents, but 46.8% of the group (N = 332) completed at least a Health Care Proxy (HCP) after one visit. Another 16.8% (N = 119) remained open or contemplating, and 10.6% (N = 75) requested no further intervention. We provided follow-up to 59 patients still contemplating future choices, yielding 20 more who completed an ACP. Additionally, we made a concerted effort to involve HCPs, confirming understanding of their role and patients’ wishes. Per patient report, 63 % of the proxies (N =219) understood preferences; we facilitated discussions with 127 HCPs. All documents were uploaded into electronic medical records (EMR); patients received paper copies. Follow-up of the first 84 patients reveals this group is at high risk for hospital readmission and death: there have been 24 deaths (28.6%), 8 transitioned to hospice care; 73 were readmitted within 6 months (86.9%).
Conclusions: A dedicated approach to ACP discussions among vulnerable hospitalized patients who have not previously completed any future directives is feasible and achievable in hard-to-reach populations.
Susan K. Ladwig, MPH
Sr. Research and Quality Improvement Coordinator
University of Rochester Medical Center
601 Elmwood Avenue
Rochester, NY, 14467