Improving Palliative Care in Long-Term Care Homes Using Participatory Action Research

The findings of this study have the potential to improve the quality of life of older adults living with frailty in long-term care (LTC) and provide better support to their families. The study offers valuable information on implementation processes, clinical and administrative-tools and educational materials that will inform how qualified health professionals and decision-makers can improve the delivery of palliative care in LTC globally.

About the Project

There is a clear and pressing need for palliative care approaches suitable to this complex health care environment, given the growing prevalence of residents with palliative care needs in LTC.

To meet the project’s objective a multiple case study design and participatory action research approach were used to explore how the research methodology itself, and different elements of the program, impact implementation in four different Canadian LTC homes and how the combined elements of the program impacted resident and family outcomes.

Project Team

Principal Investigators:

Sharon Kaasalainen, PhD, RN — McMaster University

Tamara Sussman, PhD, MSW — McGill University

Co-Investigators:

Noori Akhtar-Danesh, PhD — McMaster University

Robin Bonifas, PhD, LICSW — Arizona State University

Valérie Bourgeois-Guérin, PhD, OPQ — Université du Québec à Montréal

Kevin Brazil, PhD — Queen’s University Belfast

Vanina dal Bello-Haas, PhD, MScPT — McMaster University

Marie Earl, PhD, MScPT — Dalhousie University

Mary Lou Kelley, PhD, MSW — Lakehead University

Lynn McCleary, PhD, RN — Brock University

Marg McKee, PhD, MA — Lakehead University

Alexandra Papaioannou, MSc, MD — McMaster University

Deborah Parker, PhD, RN — University of Queensland

Jenny Ploeg, PhD, RN — McMaster University

Shane Sinclair, PhD, CPCS — University of Calgary

Patricia Strachan, PhD, RN — McMaster University

Genevieve Thompson, PhD, RN — University of Manitoba

Lorraine Venturato, PhD, RN — University of Calgary

Abby Wickson-Griffiths, PhD, RN — McMaster University

John You, MSc, MD — McMaster University

Laurel Young, PhD, MTA — Concordia University

Knowledge Users and Partners:

Allison Costello — Ontario Ministry of Health and Long-Term Care

Donna Fairley — Ontario Association of Residents’ Councils

Robert Francis — Ontario Ministry of Health and Long-Term Care

Lorraine Purdon — Family Council’s Program

Donna Rubin — Ontario Association of Non-Profit Homes and Services for Seniors

Tim Siemens — Tabor Manor

Project Contact: Sharon Kaasalainen — kaasal@mcmaster.ca

Key words: palliative care; intervention; long-term care; evaluation; advance care planning

Presentations

Presentations

Sussman T, Kaasalainen S, Mintzberg S, Sinclair S, Young L, Ploeg J, Bourgeois-Buérin V, Thompson G, Venturato L, Earl M, Strachan P, You JJ, Bonifas R, McKee M. Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care. Can J Aging. 2017 Sep;36(3):306-317. doi: 10.1017/S0714980817000253. Epub 2017 Jul 27.

Vahrmeyer, A., Neves, P., Rimay, D., Gray, L. (2015). Strengthening Palliative Care in Long-Term Care (LTC): Early lessons from a national pilot project. HPCO Annual Conference. Toronto, ON.

Kaasalainen, S., Sussman, T., Rimay, D., Vahrmeyer, A. (2015). Strengthening a palliative approach in long-term care. Workshop: 3rd annual Technology Evaluation in the Elderly, Pre-Conference Workshop. Toronto, ON.

Te, A., Brazil, E., Bui, M., Kaasalainen, S., Sussman, T., the SPA-LTC Team. (2015). Developing a tool to support advance care planning. Poster presented at the 3rd annual TVN Conference. Toronto, ON.

Virag, O., Kaasalainen, S., Sussman, T., the SPA-LTC Team. (2015). Strengthening a palliative approach in long-term care: a multi component program. Poster presented at the 3rd annual TVN Conference. Toronto, ON.

Durepos, P., Wickson-Griffiths, A., Abiola Hazzan, A., Kaasalainen, S., Vastis, V., Battistella, L., Papaioannou, A. (2015). Assessing the palliative content in dementia care guidelines: a systematic review. Poster presented at the 3rd annual TVN Conference. Toronto, ON.

Bui, M., Te, A., Brazil, E., Kaasalainen, S., Sussman, T., the SPA-LTC Team. (2015). Developing an illness trajectory resource for dementia caregivers: SPA-LTC. Poster presented at the 3rd annual TVN Conference. Toronto, ON.

Rationale, Hypothesis & Objectives

Rationale: Many barriers to optimal palliative care in LTC homes have been identified, including a lack of knowledge, workload demands and a failure to identify impending death and implement a timely end-of-life care plan. Unfortunately, decisions to implement such a plan are usually made after hospitalization of a LTC resident or exacerbation of a chronic condition, severely compromising his/her participation in those decisions.

Hypothesis: A palliative care program based on findings from this study have the potential to improve the quality of life of frail older adults in LTC and provide better support to their families.

Objectives: The main objective of this proposed research is to adapt, implement and evaluate a palliative care program that supports and sustains staff’s capacity to (1) identify key transition points along the living-dying continuum; (2) activate critical communication with families and other members of the interdisciplinary team, (3) relieve resident suffering and (4) attend to issues of loss and grief.

Communication to Patients & Family

Lay Title: More information and training can help long-term care staff give better care to older adults living in long-term care and their families

Key Findings:

Family Care Conferences helped families address their worries about their family members/significant others at the end of their lives
Staff felt that having information and training about death and dying was helpful for them and LTC residents.

Why was this study was needed?

Residents living in long-term care homes could benefit from receiving a palliative approach to care. Research shows that long-term care homes are not prepared for the deaths of their residents. To provide the best care, strategies to notice when residents are at the end-of-life stage were needed. We aimed to develop a program to improve the palliative approach to care for residents living in long-term care homes and their families.

Suggestions on how these findings could impact frail older adults and/or their family caregivers and how this might be measured:

Giving staff information about what illness looks like at the end of a person’s life can help staff be more aware of what residents may need when they are dying
Making sure staff have the time to make long-term care home residents more comfortable can improve the care residents receive at the end of their lives. This might also help staff feel more comfortable talking about death and dying with these older adults’ families
Holding Family Care Conferences with the families of older adults living in long-term care homes can help families share what their loved one wants or needs
Giving pamphlets to residents’ family members can help them have important discussions about death and dying

Brief comment on type of study in lay terms:

This study looked at how the SPA-LTC program, a program for older adults living in long-term care homes who are dying, affected long-term care home staff, residents, and their families
39 residents/families participated in the study, and 8 families had Family Care Conferences, where they shared their wishes for their loved one with the people taking care of them at the nursing home
- Family members participated in interviews where they explained that that they felt supported during the Family Care Conferences, but also would have liked to start talking about these issues earlier and would have liked to have more emotional support.
317 staff filled out surveys at the beginning of the project, 176 staff completed surveys at the end of the study, and 83 staff members participated in interviews (focus groups) after the study
Staff felt that communication could be improved between different levels of staff in nursing homes.

Communication to Policy

Title: Changing the way we provide care within a palliative approach

Key Findings:

We found a 34% decrease in the overall number of emergency department (ED) visits following the SPA-LTC program intervention.
The presence of staff with a high level of clinical expertise (registered nurses, nurse practitioners, physicians) is important in reducing ED visits among long-term care residents.
The SPA-LTC program (specifically the Interdisciplinary Palliative Care Champion team and Comfort Care Rounds) was seen by staff as beneficial in improving interdisciplinary communication.

Why was this study needed?

As the population ages, there are an increasing number of residents living in long-term care homes that require a palliative approach to care. However, long-term care homes are ill-prepared for the deaths of their residents and require access to strategies that allow them to identify residents approaching end-of-life and provide them with appropriate care. This study aimed to develop a palliative care program to improve the integration and delivery of a palliative approach to care for residents living in long-term care homes and their families.

Suggestions on how administrators or policy maker could use the findings:

These findings can be used to uncover strategies to reduce unnecessary ER visits among residents of long-term care homes and thus reduce healthcare costs.
Results can help with the development of a palliative care approach to care that is sustainable.

Brief comment on type of study:

The goal of this study was to examine the effectiveness of a palliative care program, called Strengthening a Palliative Approach in Long-Term Care (SPA-LTC)
Four long-term care homes in southern Ontario, Canada participated in the study.
The study population included English-speaking residents living in long-term care, their families and staff working in the long-term care homes.
Participants of the study played an active role in helping to design, implement and evaluate the program.
To evaluate the effectiveness of this program, the researchers looked at the bereaved family members’ perceptions of their relatives’ comfort level while living in the long-term care home.
The researchers were also concerned with family satisfaction with care, staff knowledge of end-of-life care, the facility’s readiness in delivering palliative care, and the number of hospital admissions and deaths 1 year prior to the start of the program.

Communication to Researchers

Lay Title: Changing the way we provide care within a palliative approach

Key Findings:

Residents and families felt that the Illness Trajectory Pamphlets encouraged them to think about personal values and goals of care and increased their comfort talking about EOL
The palliative performance scale was interdisciplinary communication useful in triggering family care conferences and goals of care discussions
Staff identified several benefits of the SPA-LTC program including the program being beneficial in improving interdisciplinary communication

Why was this study needed?

Brief overview of the methodology:

The main goal of this study was to adapt, implement and evaluate a palliative care program, called Strengthening a Palliative Approach in Long Term Care.
A mixed methods multiple case study design and participatory action research approach was used.
The study population included English-speaking residents living in long-term care homes and their families.
The palliative care program involved the development of an interprofessional palliative care team, family care conferences used to discuss end-of-life care, implementing the use of the palliative performance scale, and the distribution of pamphlets describing varying chronic illnesses to educate residents and families.
Other areas of interest included family satisfaction with care, staff knowledge, facility readiness in palliative care, number of hospital admissions and deaths during the last year of life

Potential impact of findings on clinical practice/patient care and how this impact might be measured:

Findings from this study have the potential to improve quality of life of older adults living and dying in long term care.
Findings will provide better support to families and provide information on how to improve the delivery of palliative care in long term care homes globally

Remaining knowledge/research gaps:

All residents included in the study were cognitively able and thus future work should focus on supporting staff and families in providing comfort to residents with dementia.
There is need to develop strategies to engage frail elderly in advance care planning discussions early in their illness trajectory.

Webinars

CFN Webinar (September 27, 2017): Improving Palliative Care in Long-Term Care Homes Using Participatory Action Research