Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: perspectives of care managers on challenges and recommendations

Abstract

This study examined care managers' perspectives on facilitating advance care planning (ACP) with ethnically diverse elders enrolled in a managed long-term care programme that coordinates medical and long-term care for frail, poor elders in the USA. Seven in-depth interviews and two focus groups were conducted with 24 lead supervisors and care managers of care management teams between July and August 2008; data were analysed with qualitative thematic analysis method. Participants identified four main sources of challenges: death and dying are taboo discussion topics; the dying process is beyond human control; family and others hold decision-making responsibility; and planning for death and dying is a foreign concept. Participants' recommendations to address these challenges were to develop trust with elders over time; cultivate cultural knowledge and sensitivity to respect value orientations; promote designating a healthcare proxy; recognise and educate families and community leaders as critical partners in ACP and provide practical support as needed throughout the illness experience. These findings suggest important practice implications for care managers working with increasingly diverse cultural groups of elders at the end of life.

Keywords: advance care planning; care management; culture; diversity; ethnicity.