Policy and management considerations
Australian Government Department of Human Services Payments for Carers. Current (freely accessible website)
This website provides information about payments and services available to parents or carers who provide daily care to someone with a severe disability or medical condition or someone who is frail aged. There is information regarding financial assistance for carers, payments to help carers with dependent children and other government and community support services.
Australian Government Department of Human Services Bereavement payment. Current (freely accessible website)
This website provides information about payments and services available after the death of a partner, child or person that was cared for. There is information regarding eligibility criteria and how to claim the bereavement payment.
Aoun SM, Breen L, Howting D. The support needs of terminally ill people living alone at home: a narrative review. Health Psych & Behav Med. 2014;2(1):951-69. (free full text article)
The aim of this study was to highlight the unmet support needs of terminally ill people who live alone at home and have no primary caregiver and identify specific models of care that have been used to address these gaps. Majority of the studies highlighted the reduced likelihood of this group to be cared for and die at home and the experiences of more psychosocial distress and more hospital admissions than people with a primary caregiver. Few studies reported on the development of models of care but showed that the challenges faced by this group may be mitigated by interventions tailored to meet their specific needs.
Aoun SM, O'Connor M, Breen LJ, Deas K, Skett K. Testing models of care for terminally ill people who live alone at home: is a randomised controlled trial the best approach? Health Soc Care Community. 2013 Mar;21(2):181-90. Epub 2012 Oct 11.
This project implemented and evaluated two models of care for terminally ill people living alone at home: installing personal alarms (PA) and providing extra care aide (CA) support. The primary aim was to assess the feasibility of using a randomised controlled trial (RCT) approach with this group. A secondary aim was to assess the potential impact of the models of care on the participants' quality of life, symptom distress, anxiety and depression, and perceived benefits and barriers to their use. The study has highlighted two methodological challenges: the wide variation in the degree of living alone at home leading to complex inclusion criteria, and an RCT approach with attrition differing across groups and patients not wanting to be included in the assigned group. However, the outcomes of the project have prompted changes in practice when providing care to these patients.
Aoun S, O'Connor M, Skett K, Deas K, Smith J. Do models of care designed for terminally ill 'home alone' people improve their end-of-life experience? A patient perspective. Health Soc Care Community. 2012 Nov;20(6):599-606.
This article describes the experiences of terminally ill 'home alone' people using one of two models of care aimed at maintaining participants' need for independent living, focusing on the effect of these two models of care on their physical, social and emotional needs. Twenty six palliative care patients of Silver Chain Hospice Care, in Western Australia, were randomly assigned to either having a personal alarm or additional care-aide hours in their home. The care-aide model of care resulted in benefits such as easing the burden of everyday living; supporting well-being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer.
Aoun SM, Skett K. A longitudinal study of end-of-life preferences of terminally-ill people who live alone. Health Soc Care Community. 2013 Sep;21(5):530-5.
This study aimed at eliciting patient preferences for their place of care and death longitudinally at two points during their illness trajectory, and reporting on the extent they were able to achieve their place of choice or congruence between preferred and actual place of death. The results indicated that preferences were in favour of either a home or hospice death, with more preferring home as a place of death rather than a place of care. This is the first longitudinal study to elicit the end-of-life preferences of terminally ill people who live alone. As home may not be the preferred location for dying for many patients (nearly half of the patients in this study), ability to die in the place of choice needs to be looked at as a possible indicator of meeting patient needs or as a quality measure in end-of-life care.
Aoun SM, Wall D, Kristjanson LJ, Shahid S. Palliative care needs of terminally ill people living alone: a service provider perspective. Collegian. 2013;20(3):179-85.
This paper investigated the support needs of people living alone with a terminal illness from a service provider perspective. In depth semi-structured interviews were conducted with nine HSPs from community based services in three Australian states. Four main themes emerged: care challenges, differences in care provision, appropriate approaches to care and essentials for an effective service such as 24 h care, cost-free provision of personal alarm systems, supported and coordinated housekeeping services, funded respite care and financial care packages. The study provided directions to inform service planning for this growing and challenging population group regarding adequate and timely services that will lead to more complying with the clients' wishes, more care being delivered at home, a reduction in hospitalisations, a better quality of life and a capacity to die at home.
Currow DC, Allingham S, Bird S, Yates P, Lewis J, Dawber J, Eagar K. Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage. A national study using spatial analysis. BMC Health Serv Res. 2012 Nov 23;12:424. (free full text article)
The aim of this study was to assess, by level of socio-economic disadvantage, referral patterns to specialist palliative care and proximity to inpatient services. This study covered July - December 2009 with data from 10,064 patients. People from the highest SEIFA group (least disadvantaged) were significantly less likely to be referred to a specialist palliative care service, likely to be referred closer to death and to have more episodes of inpatient care for longer time. Physical proximity of a person's home to inpatient care showed a gradient with increasing distance by decreasing levels of socio-economic advantage. These data suggest that a simple relationship of low socioeconomic status and poor access to a referral-based specialty such as palliative care does not exist. Different patterns of referral and hence different patterns of care emerge.
Lewis JM, DiGiacomo M, Currow DC, Davidson PM. Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world. J Pain Symptom Manage. 2011 Jul;42(1):105-18.
Individuals from low socioeconomic (SE) groups have less resources and poorer health outcomes. Understanding the nature of access to appropriate end-of-life care services for this group is important. The objectives of this study was to evaluate the literature in the developed world for barriers to access for low SE groups. A total of 67 articles were identified for the literature review. Literature describing end-of-life care and low SE status was limited. Findings from the review were summarized under the headings for dimensions of access.
Lewis JM, DiGiacomo M, Luckett T, Davidson PM, Currow DC. A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks. J Pain Symptom Manage. 2013 Jan;45(1):92-103.
The aim of this study was to summarize the literature on social capital, well-being, and quality of life for key outcomes to inform a model of social capital in palliative care. The literature was reviewed to identify key concepts to develop and inform a palliative care social capital framework. Research that identifies specificity in application of social capital concepts is fundamental to issues of access to services, sustaining levels of care, quality of life, and well-being. The importance of "bridged" social capital relations and networks for improved resource acquisition and information flow was identified in the literature and outlined within the palliative care social capital framework. Differential access to social capital by disadvantaged groups provides further impetus to engage a model of social capital for palliative care.
Rietjens JA, Deschepper R, Pasman R, Deliens L. Medical end-of-life decisions: does its use differ in vulnerable patient groups? A systematic review and meta-analysis. Soc Sci Med. 2012 Apr;74(8):1282-7.
This systematic review aims to detect whether there are differences in the prevalence of medical end-of-life decisions in 'vulnerable' patient groups. In 2009, five major databases were scrutinized for publications containing original data on the prevalence of euthanasia/physician-assisted suicide, life-ending without explicit patient request, intensified symptom alleviation, non-treatment decisions and palliative sedation by social factors (eg, age, gender and SES). We conclude that the administration of medication with a potential or certain life-shortening effect seemed generally to be practiced less often among the elderly, females and less well-educated patients compared with younger, male or more educated patients, while decisions that include the withdrawal or withholding of treatments seem to be more common in these groups. Further studies should focus on investigating whether these differences reflect less than optimal end-of-life care for specific patient groups.
Page updated 04 July 2019