A Palliative Approach for People with Declining Health Living in Hostel Accommodation: The State of Play.

Abstract

In Australia, residential aged care facilities are increasingly becoming the place of care and site of death for older people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to provide appropriate ongoing care as well as end of life care for this growing group of people. Since most related research to date has focused on end-of-life care in high-level care nursing home settings, little is currently known about the use of a palliative approach in caring for older people with complex needs living in hostel settings in Australia. This study aimed to: (i) map high-level care residents in residential low-level care settings (hostels) in relation to demographic information, medical illnesses, co-morbidities, physical function and individual symptoms, (ii) explore resident perceptions of their situation and how they would like their care to be managed into the future, (iii) explore aged care staff understandings of what constitutes a palliative approach, and their perspectives on how this approach is being incorporated into the care of their high-level residents in hostel settings, and (iv) review related organisational and managerial data such as policies, procedures and staffing. A concurrent mixed methods design incorporating both quantitative and qualitative approaches to data collection was conducted in two residential aged care facilities in NSW. Data collection was conducted over a eight month period. Descriptive statistics were used to summarise the characteristics of the 93 high-level care residents participating or participating by proxy (that is through the involvement of a person responsible acting on behalf of the resident), the prevalence of symptoms and the number of symptoms per resident, associations between symptoms and diagnosis, and the functional status and psychosocial well-being of participating residents. Three validated tools were used to describe the residents’ health status, wellbeing, and functional ability and assess current symptoms. A medical record audit tool was developed to collect demographic data, and organizational and managerial data tools were developed to collect information about polices, education and staffing levels. Of the 412 residents in the eight hostel facilities, 58% were categorised as requiring ‘high-level’ care. In addition, unstructured interviews were conducted with 72 high-level care residents and 21 persons responsible and semi-structured interviews were conducted with 30 aged care staff. The findings show that, although hostel staff are familiar with the concept of a palliative approach, the discourse of this approach to care is not widely adopted or operationalised within hostel settings. The study also demonstrates that staff, high-level care residents and their families all struggle with the difficulties and complexities of the transition towards the end of life within hostels, and particularly with the constraints that, in most cases, preclude the possibility of ‘dying in place’. This thesis presents a new way of conceptualising care for those people in hostels who are transitioning towards end of life: a community of care, in which a palliative approach is one of several elements of the care provided. Implementing communities of care within hostel settings is not, however, without challenges. Recommendations are made in this thesis about how some of these issues might be addressed.