A new tool is available to assess family members’ satisfaction with end-of-life care in long-term care (LTC). Researchers recently developed and pilot-tested the Canadian Health Care Evaluation Project (CANHELP) Lite Family Caregiver LTC questionnaire.1
This LTC tool is part of a suite of tools in Canada that measure satisfaction with end-of-life care in different settings. “The motivation was to support LTC homes to provide better end-of-life care to residents and their families,” says Mary Lou Kelley, MSW, PhD, one of the study’s authors. Kelley led the research for the Quality Palliative Care in Long-Term Care Alliance. She is former research chair in palliative care and professor emeritus in the School of Social Work at Lakehead University in Ontario, Canada.
Family members were mailed a survey to measure what end-of-life care components were most important to them, and how satisfied they were with 21 aspects of care received by their resident.
“This survey can now be used by LTC homes routinely to evaluate their end-of-life care programs, identify areas for staff training and guide them to develop new policies,” says Kelley. The tool also can help generate conversations between staff and families about end-of-life care wishes.
Most surveys on satisfaction with end-of-life care are completed following the death of the resident. “This instrument fills a gap, in that it measures the end-of-life experience during the episode of care,” explains Kelley.
Overall, families saw all aspects of care as very or extremely important and were generally satisfied. However, day-to-day care issues — whether staff were compassionate and helped the resident — were more important to families than specific end-of-life items, such as discussing options about life-sustaining technologies or comfort care measures.
Only a small number of respondents (less than 4%) indicated that end-of-life discussions were not important. “It is a positive finding that most families view having end-of-life conversations as important in a LTC home,” says Kelley.
However, there was a surprise in the satisfaction results: Many families responded they did not know if they were satisfied because they had not discussed end-of-life issues with staff, including comfort care measures or their relative’s end-of-life care wishes.
This response occurred even in situations where the resident was very ill, and could reasonably be expected to die soon. “These findings identify a real need to increase end-of-life conversations with families,” says Kelley.
Staff education and incorporating end-of-life care more explicitly in care conferences, care plans, and organizational policies are possible strategies to increase the number of end-of-life conversations. “Families of LTC home residents would also benefit by education on end-of-life care and advance care planning, so they can initiate end-of-life conversations,” adds Kelley.
LTC is a unique setting for end-of-life care, in that it is not a specialized care setting focused on care of the dying. “It is a home where residents live, sometimes for several years. The focus is on day-to-day living, as opposed to dying,” says Kelley. When death is inevitable, the focus shifts to providing end-of-life care and supporting the resident to die at home.
“Simultaneously supporting residents’ quality of life while preparing them for death creates ethical dilemmas for many LTC staff during their day-to-day work,” notes Kelley.
LTC home staff find it very challenging to initiate conversations with families about end-of-life wishes. Thus, discussions may be avoided, especially earlier on in the illness process. “This is an ethical issue,” says Kelley. “Research has demonstrated that early palliative care is beneficial for supporting a good death in the setting of choice.”2
Other research by Kelley and colleagues has demonstrated that staffs’ comfort level having end-of-life conversations increased after experiential learning.3,4
“However, most LTC homes currently lack the funding, resources, and partnerships with palliative care experts to offer staff this specialized education on an ongoing basis,” says Kelley.
LTC homes have increasing become a location of death in Canada. Approximately 20% of residents die each year.
“End-of-life issues are very important to families of residents,” says Kelley. “However, the prevalence of discussing end-of-life care issues with staff can be improved.”
- Nadin S, Miandad MA, Kelley ML, et al. Measuring family members’ satisfaction with end-of-life care in long-term care: Adaptation of the CANHELP Lite questionnaire. Biomed Res Int. 2017; 4621592. doi: 10.1155/2017/4621592. Epub 2017 Jun 19.
- Tassinari D, Drudi F, Monterubbianesi MC, et al. Early palliative care in advanced oncologic and non-oncologic chronic diseases: A systematic review of literature. Rev Recent Clin Trials 2016; 11(1):63-71.
- Kaasalainen S, Brazil K, Kelley ML. Building capacity in palliative care for personal support workers in long term care through experiential learning. International Journal of Older People Nursing 2014; 9(2):151-158.
- Kortes-Miller K, Jones-Bonofiglio K, Hendrickson S, et al. Dying with Carolyn: Using simulation to improve communication skills of unregulated care providers working in long-term care. Journal of Applied Gerontology 2016; 35(12):12259–1278.
- Mary Lou Kelley, MSW, PhD, Professor Emeritus, School of Social Work, Lakehead University, Ontario, Canada. Email: firstname.lastname@example.org.