Changing Focus: End-of-Life Care in a New York State Managed Long-Term Care Program

Abstract

In the United States, managed long-term care programs offer a noninstitutional approach to meeting the needs of increasing numbers of frail elders. Providing services that support both quality of life and quality of dying poses unique challenges. Using a qualitative descriptive design, we explored these challenges from the perspectives of care providers. Themes were identified using qualitative content analysis techniques applied to transcripts of 33 semistructured interviews. Professionals comprising an interdisciplinary care team and home health aide direct care providers described cues by which they identified movement into the end-of-life phase, their understandings of how care changed, and their concerns and recommendations for improvement. When the changing care needs could be met, a "good death" ensued, but that was not always possible. Managed long-term care programs are called upon to develop the capacity to integrate the phase of dying into the full story of each life for which they care.

Awareness, Acceptance, Avoidance: Home Care Aides’ Approaches to Death and End-of-Life Care

“…However, these kinds of training have never been tailored to address the full range of aides' unique challenges and needs (Tsui, Wang et al, 2019), and would benefit from engaging deeply with aides' EOL experiences both within and outside of work. Such training could equip aides with best practices for EOL care and family work, help aides identify when EOL care may be appropriate (Meeker & Waldrop, 2019), and give them more equal footing for communicating about EOL with other members of the care team. This training should be based on an understanding of the potential relational complexity of the work without prohibiting the inevitable relationships between aides, clients, and family members.…”