RESPECT LTC One Page Guide
Despite most deaths being predictable, many residents who are at the end of life do not receive palliative care services early enough. The lack of available and accurate prognostic information is a key challenge. While there are a few existing tools that can be used to inform care planning for Long-Term Care (“LTC”) residents near the end of life, such as the Palliative Performance Scale (“PPS”) and the Changes in Health, End-Stage Disease and Signs and Symptoms (“CHESS”) Scale, many tools are disease-specific (e.g., the PPS was developed for people with cancer) or were designed to identify needs in the final weeks of life, rather than for earlier identification of palliative care needs.
RESPECT (Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool) is a risk communication tool developed by a team of scientists at the Bruyère Research Institute and the Ottawa Hospital Research Institute to help clinicians, residents, and caregivers understand a resident’s frailty and plan their care. Originally developed for older adults in the home and community care setting1, the tool has now been adapted for use within LTC.
What is RESPECT?
Technically, RESPECT is an algorithm that calculates a resident’s survival—that is, how long they will live. RESPECT uses information about the residents’ health and function, and historical data on other LTC residents with similar characteristics, to estimate their survival. RESPECT captures a broader spectrum of decline and frailty and can predict the survival of residents from less than a week to more than 5 years. Its main output metric is survival in days for ease of interpretation and risk communication to residents and caregivers.
How does RESPECT support a palliative approach to care?
· RESPECT is Patient-Oriented. RESPECT presents a resident’s life expectancy (that is, how long they may live) as a time frame in days, months, and years. The average survival time is presented as one of the main metrics, along with uncertainty (i.e., best-case and worst-case scenarios) based on data on residents with similar characteristics. It was co-designed with patients and their caregivers to ensure the reported metrics are easily understandable and actionable by residents and their circle of care.
· RESPECT is Personalized. RESPECT uses personalized information from each resident to estimate their survival. This includes their demographics, comorbidities, functional and cognitive status, symptoms, and recent healthcare use (e.g., hospitalizations).
· RESPECT Supports Earlier identification. RESPECT captures a broader spectrum of decline and frailty, and can predict the survival of residents from less than a week to more than 5 years. The large range in predicted survival allows residents, caregivers, and healthcare providers to
identify a resident’s palliative care needs earlier and adjust their care plans as the resident approaches the end of life.
· RESPECT is Canadian. RESPECT was developed on 2.3 million assessment records collected from over 246,000 LTC residents in Ontario between 2011 and 2018. As such, the predicted survival is an accurate representation of LTC residents’ survival within the Canadian context.
· RESPECT is Embedded with Existing Workflow. RESPECT relies on data collected using the Resident Assessment Instruments–Minimum Data Set (RAI-MDS), which is used routinely and systematically within LTC settings. By using routinely collected data, healthcare providers do not need to spend valuable time performing additional assessments.
How can RESPECT be used?
RESPECT can be used to support conversations about a resident’s goals of care. Healthcare teams can use RESPECT to help residents and their care partners understand their prognoses, health trajectories, and expected changes in care needs.
Who developed RESPECT?
RESPECT was developed by the Project Big Life Team, which includes older adults and caregivers to older adults who need care. The Project Big Life Team is led by researchers at the Bruyère Research Institute, Ottawa Hospital Research Institute, University of Ottawa, and ICES.
The development of RESPECT was supported by the Canadian Institutes of Health Research and the Associated Medical Services. For more information on RESPECT, you can contact Dr. Amy Hsu, PhD (Scientist, Bruyère Research Institute) at ahsu@bruyere.org.
