Abstract
Long term care (LTC) homes, also known as residential care homes, commonly care for residents until death, making palliative care and advance care planning (ACP) important elements of care. However, limited research exists on ACP in LTC. In particular, research giving voice to family members and substitute decision makers is lacking. The objective of this research was to understand experiences, perspectives, and preferences to guide quality improvement of ACP in LTC. This qualitative descriptive study conducted 34 individual semistructured interviews in two LTC homes, located in Canada. The participants were 31 family members and three staff, consisting of a front line care worker, a registered nurse, and a nurse practitioner. All participants perceived ACP conversations as valuable to provide “resident-centred care”; however, none of the participants had a good understanding of ACP, limiting its effectiveness. Strategies generated through the research to improve ACP were as follows: educating families and staff on ACP and end-of-life care options; better preparing staff for ACP conversations; providing staff skills training and guidelines; and LTC staff initiating systematic, proactive conversations using careful timing. These strategies can guide quality improvement of palliative care and development of ACP tools and resources specific to the LTC home sector.
Highlights
Long term care (LTC) homes today provide care to people of advanced age, frailty, or disability, with multiple health problems [1, 2]
To meet the goal of the research, the analysis explored knowledge, experience, current practices, concerns, priorities, and workable strategies that would facilitate the development of advance care planning (ACP) processes in the LTC settings
The family members/substitute decision-makers felt that the LTC homes should proactively and consistently provide information and education to staff and family members on ACP
Summary
Long term care (LTC) homes today provide care to people of advanced age, frailty, or disability, with multiple health problems [1, 2]. They provide end-of-life care [3,4,5] as approximately one in five residents living in LTC homes in Canada and UK dies each year [6,7,8,9]. There exists a culture of silence surrounding dying that creates a barrier to end-of-life communications in LTC [2, 10]. Dying at home in the long term care home can be offered as an option during ACP discussions
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