Long-Term Care Project

Research:

Our aim is to improve end-of-life (EOL) care by increasing advance care planning (ACP) uptake in long- term care (LTC) for residents and their family/friends. ACP can enrich EOL care in LTC by:

  • improving concordance between preferred/received care
  • improving resident, family, and staff’s EOL care satisfaction
  • decreasing the use of invasive medical treatment at EOL

Yet, ACP is rarely a component of usual LTC practice. Critical barriers to ACP uptake in LTC include:

  • uncertainties about what should be discussed
  • confusion regarding when discussions should take place
  • debates about which staff should be involved

A series of tools and workbooks have been developed to help direct ACP reflections and discussions, but their potential for improving ACP uptake in LTC had not been examined. We aimed to improve the uptake of ACP for frail older residents in the LTC setting by:

1. Identifying potential ACP tools to improve holistic ACP engagement in LTC
2. Implementing & evaluating one ACP workbook identified as acceptable and usable in an LTC environment (Your Conversation Starter Kit, theconversationproject.org)
3. Exploring contextual issues within LTC that may impede broad-based uptake of ACP tools

Key Findings:

Our findings suggest that:

  • Residents and families consider relational connections to be more important than discipline/professional designation when engaging in ACP. In many instances, personal support workers and other support staff were the preferred first contact for ACP reflections and communication.
  • Staff prefer ACP materials that include psychosocial content, as these resources encourage communication and reflection around issues that are important to residents and families in LTC. Further, these self-directed materials can improve ACP reflections and communication amongst residents and families. To ensure the movement from reflection to communication, some staff follow-up post-distribution may be warranted.
  • Many residents and families noted striking differences between the care and attention offered to residents and families during day-to-day living and that offered during the final days of life. This impeded ACP communication which is meant to occur well before the final days of life. Tools and materials can provide important direction to staff around what to discuss with residents and families. However, such discussions are unlikely to occur if staff are not supported in the enactment of compassion for all residents from the time of relocation until death.

Recommendations:

  • Train and encourage all staff, regardless of discipline, to participate in ACP discussions with residents.
  • Provide self-directed ACP materials with psychosocial content to improve ACP engagement in LTC.
  • Improve ACP uptake by creating a culture that supports compassionate care and communication amongst staff, residents and families.

Publications:

Howard M, Elston D, De Vries B, Kaasalainen S, Gutman G, Swinton M, Carter R, Sussman T, Barwich D, Urquhart R, Jayaraman D, Munene P, You J. (2020). Implementing Advance Care Planning Tools in Practice: A Modified World Café to Elicit Barriers and Recommendations from Potential Adopters. Accepted for publication by Healthcare Quarterly, Dec 2020.

Kaasalainen S, Sussman T, Thompson G, McCleary L, Hunter P, Venturato L, Wickson-Griffiths, A, Sinclair S, dal Bello Haas V, Earl M, Ploeg J, Parker D, You J. (2020). Evaluation of a Program Based on the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) Model. BMC Palliative Care, 19 (107), 1-12.

Kaasalainen S, Sussman T, McCleary L, Thompson G, Hunter V, Wickson-Griffiths A, Cook R, Dal-Bello Haas V, Hill C, Venturato L, Papaioannou A, You J, Parker, D. (2019). Palliative care models in long-term care: A scoping review. Canadian Journal of Nursing Leadership,32(3):8-26. doi: 10.12927/cjnl.2019.25975.

Principal Investigators:

Sharon Kaasalainen, RN, BScN, MSc,PhD

McMaster University

Dr. Sharon Kaasalainen is an Associate Professor in the School of Nursing at McMaster University, an associate member of the Department of Family Medicine at McMaster, and an Honorary Professor at Queen’s University in Belfast. Dr. Kaasalainen obtained her Bachelor of Science in Nursing, and a Doctor of Philosophy in Clinical Health Sciences from McMaster University, and a Master’s of Science in Nursing from the University of Toronto. Her top three research interests are pain management and palliative care in long-term care; improving the quality of life for older adults living in long-term care; and advanced practice nursing roles in long-term care.

 

Tamara Sussman, PhD

McGill University

Photo of Tamara Sussman

Dr. Tamara Sussman is an Associate Professor in the School of Social Work at McGill University. She obtained her undergraduate and master’s degrees at McGill University, and a PhD in Social Work at the University of Toronto, followed by a Post-Doctoral Fellowship at the Murray Alzheimer Research and Education Program at the University of Waterloo.  Dr. Sussman’s  program of research focuses on how health services and systems impact older adults and their family members, including spousal careers’ experiences with home care; older adults’ and family members’ experiences with the transition into long-term care; barriers and facilitators to the delivery of effective interventions for depressed older adults and their care partners;  the needs and experiences of more marginalized older adults in long-term care such as previously homeless older adults and older adults identifying as gay, lesbian, bisexual and transgender (LGBT) and most recently improving the delivery of palliative care in long-term care.

 

Co-Investigators

Dr. Valérie Bourgeois-Guérin, PhD
Dr. Paulette Hunter, PhD
Dr. Genevieve Thompson, PhD
Dr. Lynn McCleary, PhD
Dr. Abigail Wickson-Griffiths, RN, PhD
Dr. Patricia Strachan, RN, PhD
Dr. Lorraine Venturato, RN, PhD

 

Research Staff

Mr. Patrick Durivage, Collaborator, MSc
Ms. Emily DiSante, Project Coordinator
Ms. Courtney Hill, Project Coordinator, RN, BScN
Ms. OliviaVirag, Project Coordinator
Ms. Maria Nicula, Research Assistant