In-home respite: Innovative approach to palliative care provision

Palliative care has many challenges one of which is how to effectively increase the outcomes for clients receiving care within their home. Approximately 60% of clients elect to remain at home to receive terminal care but nurses working in community palliative care identified carer fatigue as a pivotal component of admission to hospital or hospice for terminal care. A pilot study was undertaken during 2000 in which 53 families received in-home respite care (Kristjanson, et al 2004). The outcomes of this study demonstrated that in-home respite was effective in assisting the family to manage the terminal phase at home. Further to this a national scoping study to determine the needs of palliative care clients who live alone was undertaken in 2005 (Aoun et al 2007). Outcomes of this study suggest that this population of clients want to remain at home but current models of in-home respite do not meet this need.

In addition a retrospective analysis of case notes of 40 clients who died in an in-patient facility was undertaken. The aim was to determine whether provision of in-home respite would have prevented these hospital admissions. The outcome of the review suggested that up to 50% of the family carers may have been able to manage the care at home with in-home respite support.

The positive outcomes of the pilot project led to funding of respite services in 2006. The need for a varied skill mix was identified and carers were recruited from enrolled nurses, care aides and volunteers, who received specific education relating to provision of in-home respite. This included legal issues pertaining to the caring role and boundary issues that may be forthcoming when extending periods of time in one home. In addition registered nurses received education regarding identification of families in need of respite i.e. where the carer is fatigued; there are high stress/anxiety levels, complex physical symptoms and extended terminal phase.

All members of the interdisciplinary team were provided with information pertaining to this service. The interdisciplinary team meeting was also utilised to identify 'at risk' families/clients to ensure the in-home respite care was provided when required.

To determine effectiveness of the service key performance indictors which include maintaining deaths at home above 50% and admission to inpatient facilities at below 15% are utilised. Monthly reports providing information regarding the number of clients receiving in-home respite, number of hours of respite provided and percentage of clients who die at home are received. The respite service aims for 70% of clients to die at home and to date this has been achieved.

A satisfaction survey is posted to the family carer that received the respite service. It is expected that surveys should demonstrate 90% satisfaction and too date this has been achieved. For those clients who live alone the service is determined to be effective if the client had elected to die at home and this has been achieved; chosen place of death is recorded on the palliative care and management plan at time of admission