Challenges in living alone near the end of life : an international comparison from the InSup-C project

Hughes, Sean and Preston, Nancy Jean and Payne, Sheila Alison and van der Eerden, Marlieke and Ewert, Benjamin and Kiss, Zsuzsanna and Busa, Csilla and van Beek, Karen and van Ende, Suzy and Csikos, Agnes and Groot, Marieke (2016) Challenges in living alone near the end of life : an international comparison from the InSup-C project. In: UNSPECIFIED.

Abstract

Background Policy in end of life care assumes that family caregivers will be available and willing to support those living with terminal illness in the last year of life. But what are the challenges for those who live alone with varying degrees of support from family or other non-professional caregivers? Design and methods Patients with advanced cancer, COPD and chronic heart failure (CHF), with a prognosis of less than 12 months, were recruited at clinical services sites in five European nations: Belgium, Germany, Hungary, the Netherlands and the UK. Data were collected using semi-structured interviews at baseline and at three months follow-up. Interviews focused on how integrated palliative care services responded to patients’ needs and problems. A transnational comparative analysis was conducted using a qualitative thematic approach. Results and interpretation Of 157 patient participants, 48 (30%) lived alone (range by country: 13%-41%). Of this sub-sample, the mean age was 74, 65% were women and diagnoses were: cancer 58%; COPD 27%; CHF 15%. Loneliness and/or reduced social contact were apparent in the data from all countries. In Germany, patients were concerned with meaning making and existential questions: ‘Why am I still alive?’ In the UK, positive experiences included maintaining independence and control over daily life but for some, a reliance on variable home care services was evident and replicated data from the Netherlands. In Hungary and Belgium, dealing with symptoms like pain and fatigue were main concerns of this group. Conclusion Commonalities across the participating nations in the concerns of patients living alone in the last year of life were apparent. Whilst loneliness might be a self-evident challenge, increasing social isolation had a detrimental effect for some. Further analysis comparing these experiences with those cohabiting with others is anticipated. On behalf of InSupC: EU FP7 funded project on integrated palliative care in Europe