Support towards the end of life and beyond: Non‐kin care commitment for older people living alone in Austria

Abstract

Non‐kin carers provide vital resources for older people living alone with increasing care needs, especially if they cannot rely on the support of family members. However, this kind of commitment presents numerous challenges throughout the care trajectory and beyond. To explore these aspects in more depth, a qualitative study was designed including a retrospective interpretation of interview data with non‐kin carers (n = 15) and additional in‐depth interviews (n = 8) with people who had cared for an older person living alone with no family nearby. Analyses of the verbatim transcriptions followed coding procedures and were supported by MaxQDA software. Our findings demonstrate that non‐kin carers had to negotiate personal boundaries continuously over the end‐of‐life trajectory to deal with the increasing complexity of care demands and overburdening situations. Following the older person's death, non‐kin carers were involved in funeral arrangements and settled practical or legal matters when no family members were available or had little inclination to contribute. The findings highlight that non‐kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non‐kin carers providing end‐of‐life care for an older person living alone.

“Friend-ish”: Home Care Workers, “Social Labor” and Managing the Boundaries of the Carer Relationship

“…Similar to emotional labor, whereby workers may have to display emotions that they do not necessarily feel (Hochschild, 2003), care workers may also have to show varying degrees of sociality as a component of their work. Furthermore, non-kin carers may feel a great degree of responsibility and commitment to older adults at vulnerable times, especially towards the end of life (Cain & Lam, 2020; Kieninger et al, 2022).…”

Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence

“…The specific challenges facing people living alone towards the end of life have been well-documented. 4,28 Patients with hospital and nursing home use in the last 3 months of life were significantly less likely to choose to die at home, further supporting the observation that preferences are influenced by system characteristics (eg, experience of alternative options) and not just by predisposing characteristics. Although congruence may be the more important summary end-of-life quality indicator, it is still valuable to examine factors associated with preferences, especially if patients shape their preferences based on what they think is feasible rather than what they would like.…”

“…Congruence between preferred and actual place of death has gained recognition as a quality indicator in end-of-life care. 1 – 3 This reflects a shift away from focusing on home death as a quality-of-care indicator, 4 recognising that while many people with terminal illness would prefer to die at home, 2 , 5 – 7 others prefer a non-home setting such as hospital, hospice, or nursing home. 6 , 8 , 9 While it is agreed that congruence is a more appropriate measure, there may be complexities about preferences that are ignored in summary measures.…”

Bioethics in end-of-life care: statistical review

“…Palliative care is born from the approach to improving the quality of life of patients and their families with life-threatening illnesses, through the impeccable assessment and treatment of pain and other problems, and is applicable early in the course of the disease, along with other therapies aimed at prolonging life 9 . Although the evidence for patients' preferences regarding the place of death is unclear and contradictory, posing the home as the best/preferred place of death remains a central objective for end-of-life care 10 .…”