Advanced frailty in end-of-life care
A new palliative care model? Key points from our recent seminar
September 26 2017
Merryn and Michal in a photo taken to promote our research by the University of Auckland. We are talking to a resident at a Residential Aged Care Facility where Michal works as a Nurse Practitioner about the state of politics in the United States!
As promised, here is a brief overview of the key points discussed at our Te Arai seminar held last week. It was great to have so many attending from local hospices, indicating the significant interest there is in supporting palliative care delivery within Residential Aged Care (RAC) locally. The principle underlying our approach is the need for reciprocal learning between the specialist palliative care and gerontology/aged care sectors and so supporting this sort of knowledge exchange is really important to us. The seminar presented preliminary findings from the ELDER study, which involves a number of our group, and is led by by Michal Boyd. ELDER is a mixed-methods study conducted at 63 RAC facilities across New Zealand. The project builds on Michal’s significant research programme exploring ways to optimise care and support in RAC facilities.
Michal reported that people with a primary diagnosis of dementia, and to a lesser extent those with a primary diagnosis of chronic disease/frailty, had significantly more distressing physical issues and sentinel events (pneumonia, hip fractures, eating/swallowing problems, etc.) a month prior to their death than those with a primary diagnosis of cancer (except for pain). However, there was no significant difference in the quality of death the last week of life, regardless of the primary diagnosis. The results indicate that, except for the last days of life, those residents with advanced frailty require a different care model than those with cancer. This model must have at its core comprehensive gerontology care over a much longer period, and a focus on adaptation and promoting resilience. She compared a “Palliative Approach” and an “Advanced Frailty” model of care for those living long-term care settings.
Rosemary Frey drew on both the quantitative and qualitative data collected to explore the impact of staff religious and spiritual beliefs on coping with death in RAC settings. Results indicate that the strength of religious beliefs does influence how well staff members cope with death and dying. Interestingly religious beliefs also significantly affect staff burnout. Rosemary concluded that these findings could provide the basis for the development of staff supports with the potential for both improved staff well-being and enhanced resident care at the end of life.
Deborah Balmer explored rituals and social practices around death in the participating RAC facilities. She discussed these in light of the social construction of a good dying experience. A clear theme to emerge was the strong desire felt by RAC facilities to accompany the imminently dying to death, and the lengths facilities go to to try to achieve this. However, this created tensions and ‘accompaniment’ was not always possible. In addition, post-death rituals acknowledging the death of a resident were limited in scope and number, often impromptu, and reflective of a facility’s own constructed notion of death and dying.
Finally, Sue Foster discussed the implications of the shift to ‘person-centred’ care within RAC in relation to Health Care Assistants (HCAs), whose training remains task oriented. She concluded that the challenge for the industry is to recognise that they cannot keep using and developing HCAs as if they are doing task-based care and also ask them to embrace the philosophy of person-centred care. Her findings indicate that a shift in focus in HCA training is needed, as well as for a greater appreciation of the services they provide. (A finding also reported in the excellent work of our Master’s student, Susan Fryer).
These findings will be discussed in much more detail in forthcoming publications which we will add links to following publication. For more information about the ELDER study, please contact: Michal.Boyd@waitematadhb.govt.nz. ELDER is funded by Perpetual Guardian Ted and Molly Carr Trust and MBIE National Science Challenge, Ageing Well.