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This study describes the lived experiences of older people coping with terminal cancer and living alone, focusing on how they face challenges of the biographical life changes from their disease progression. Face-to-face semi-structured interviews were conducted in two phases with palliative care clients of a community-based service in Western Australia (2009-2011): Brief interviews with 43 cancer patients who live alone and then in-depth interviews with 8 of them. Using biographical disruption as the analytical framework for interpreting the qualitative data, four main themes emerged: Biographical disruption: adjusting to change; Biographical continuity: preserving normality; Biographical reconstruction: redefining normality; and Biographical closure: facing the end. Biographical disruption was a suitable framework for analysis, permitting identification of the biographical disruptions of the individual's world and the reframing that is undertaken by the individual to maintain autonomy and independence while acknowledging and accepting their closeness to death. Understanding the factors associated with the individual's need to maintain their own identity will enable nurses working with this population to tailor support plans that meet the individuals' needs while maintaining or restoring the person's sense of self. Interventions that directly address end-of-life suffering and bolster sense of dignity and personhood need to be considered.

Background: Terminally ill people who live alone at home are disadvantaged in terms of their places of care and death and health outcomes. There is a need to trial models of care that can extend the period of care at home for as long as possible for this group. The objective was to explore the experiences of nurses providing care to terminally ill clients who live at home alone and who were receiving either additional care aide support or a personal alarm through an RCT. Methods: Nine nurses in a home-based palliative care service in Western Australia completed a questionnaire (82% response rate). Findings: Client willingness to accept additional support from care aides, development of rapport between the client and care staff, and willingness to use the alarm appropriately all influenced the effectiveness of the models of care. These models of care may negate the need for frequent nurses' visits when nurses feel confident that the care aide can pass on relevant information or that the client will use the alarm when required. Conclusions: Both models of care assisted in meeting the challenges to care provision; however, further larger trials are needed to test whether these might translate into granting clients their wishes regarding places of terminal care and death. This study is the first account of nurses' perspectives on service provision to support palliative care clients who live alone. It has prompted changes in practice and will inform service planning for this growing and challenging population group.

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 two models of care were piloted in collaboration with Silver Chain Hospice Care Service (SCHCS) in Western Australia during 2009–2010. Using a pilot RCT design, equal numbers of participants were randomised to receive extra CA time, PAs or standard care. Attrition reduced the sample size from 20 in each group to 12, 14 and 17 respectively. The intervention period was between 6 and 12 weeks depending on prognosis. The participants were functionally and psychologically well and the majority lived alone by choice. There were physical and psychological benefits associated with provision of the two models of care, particularly for the group supported by CAs in terms of improved sleeping and appetite. However, the impact was mostly not statistically significant due to small sample sizes. 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. The RCT approach is not considered appropriate for the ‘home alone’ palliative care population that would have been better supported by providing each participant with a personalised model of care according to needs. However, the outcomes of the project have prompted changes in SCHCS practice when providing care to these patients.

Palliative care patients who live alone report greater psychological distress, and are less likely to die at home than those living with a family carer. However, there is a lack of research on the value of models of care that specifically address this disadvantage. 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. An in-depth qualitative study was conducted in two phases in 2010 using face-to-face interviews. 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. By providing a safer, more secure environment through the use of a personal alarm or additional care-aide hours, patients were able to continue their activities of daily living, could build a sense of ‘normality’ into their lives, and they could live independently through support and dignity.

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.