Cultural differences in end‐of‐life care planning for persons with dementia: Comparison of U.S. and Korean cases

Abstract

AbstractBackgroundProviding good quality care at the end of life is important not only for cognitively‐intact patients but also for people who have dementia. In order to respect the patients’ preferences for end‐of‐life care (EOLC) among persons with dementia (PwD), it is critical to engage in advance care planning before PwDs lose cognitive functioning. However, even if health practitioners perceive such needs, they may be constrained by social and cultural factors in initiating conversations about EOLC. This study examined cultural differences in EOLC planning for PwDs using the case study method. We conducted in‐depth interviews with 7 social workers who work in South Korea, 2 Korean American social workers working with Korean‐American older adults in the US, and 3 American social workers who work in the community and hospice settings serving diverse populations. We asked about participants’ opinion about advance care planning(or EOLC) for PwDs, whether and how they engage in discussions on EOLC, obstacles in their efforts to engage in these discussions, suggestions for improving EOLC and decision making for PwDs. We conducted content analysis and extracted themes relevant to our research questions. Results show that social workers in Korea feel reluctant to engage in advance care planning for PwDs because older adults as well as their caregivers do not want to talk about death. Compared to social workers in Korea, social workers working in the Korean American communities in the US engage in EOLC planning with their clients more frequently, but they wait until they find opportunities to talk about EOLC, such as death of their client’s family of friends. On the other hand, social workers working in the non‐immigrant communities in the US perceived advance care planning as a way to ensure self‐determination and autonomy in EOLC decision making and offered opportunities to prepare for EOLC even when their clients did not bring up the issues. Implications for culturally sensitive practice and ways to improve awareness on the importance of EOLC planning in death‐avoiding cultures are discussed.