The conditions within residential age care have been the focus of recent media attention. Dr Rosemary Frey comments on what the research tells us about the sector.
The vast majority of people die in their later years; hence ageing well includes dying well. In New Zealand, approximately 45% of people over 65 years live in an residential aged care (RAC) facility at the time of their death, the highest rate of death in RAC facilities of any published record in the world. Deaths for those over 85 years will quadruple in the next four decades with the overwhelming majority occurring in RAC facilities. Recent research by Dr Michal Boyd and colleagues provides a robust overview of deaths in RAC facilities across the county. The end of life with dementia (ELDER) project results highlight that end of life care in long-term care facilities requires a high level of symptom management skill in the last weeks and days of life regardless of the primary diagnosis. But is the RAC sector up to the task?
“It is not that those who are providing care are not trying hard or that all care is bad as is intimated in the Herald article. However, any failure in care is one too many. Despite good intentions, the current system fosters a model that is motivated by economic imperatives and too often this is at the expense of care.”
A shift from not-for-profit, single-site, residential aged care providers to large privately-owned facilities (Boyd et al. 2009,Broad et al. 2013, ) has led to work conditions characterised by low wages, delegation of increasingly complex tasks to unqualified caregivers, increasing workload, and low staffing levels, a situation publicised in a recent article in the Herald (24 March 2018). Indeed staff working in residential aged care (RAC) are subjected to increasing occupational stress and and burnout. The prevailing culture (e.g., management structure, leadership style) within RAC facilities can thus significantly influenced staff’s ability to deliver care. While managers may see themselves as partners in care, economic imperatives may threaten the maintenance of ongoing personal relationships between families and RAC management and staff- a factor demonstrated to play a vital role in resident well-being. Economic imperatives may also impact on staffs ability to cope with death and dying. Our research indicates the need for the development of an organisational culture that includes formal processes for staff (e.g., debriefing opportunities and information on managing grief and loss, opportunities for self-reflection on values and beliefs) as a component of a holistic and inclusive palliative care programme in RAC.
In the last 15 years, there has been a growing body of literature about the need to recognize and incorporate specialist and generalist palliative care into the care of those dying in RAC facilities. With significant increases in deaths of the oldest-old predicted in the short to medium term, it is crucial for specialist palliative care providers to understand gerontology care, as much as it is for those caring for the frailest of older people to understand palliative care concepts and philosophy. A recent study had highlighted deficiencies in core palliative care clinical skills in RAC, notably symptom management for residents with dementia. This is particularly important given Dr Boyd’s ELDER results have indicated that dementia accounted for 55% of deaths. The Supportive Hospice and Aged Residential Exchange (SHARE) is a reciprocal model of palliative care education designed to not only provide improved palliative care knowledge for aged care staff but also improved knowledge of gerontology for hospice staff. The evaluation is a collaboration between the University of Auckland, School of Nursing, Mercy Hospice and Hospice North Shore. SHARE is currently being evaluated in 20 RAC facilities. We aim to guide the development of an outreach model from hospices to residential aged care by Palliative Care Nurse Specialist’s in the future in collaboration with Hospices, Aged Care facilities and District Health Boards.
In summary, it is not that those who are providing care are not trying hard or that all care is bad as is intimated in the Herald article. However, any failure in care is one too many. Despite good intentions, the current system fosters a model that is motivated by economic imperatives and too often this is at the expense of care. As our research has shown, good care is occurring in spite of and not because of the system. There is no “magic solution” to enhance care delivery in RAC. Nevertheless it is time to consider a systematic rethink of both the funding and structure of RAC to enhance the delivery of care. Our goal as members of the Te Arai Research Group is to provide the necessary evidence to support these needed changes.