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Carer and staff perceptions of end-of-life care provision: case of a hospice-at-home service

02 January 2021
Volume 26 · Issue 1

Abstract

People requiring palliative care should have their needs met by services acting in accordance with their wishes. A hospice in the south of England provides such care via a 24/7 hospice at home service. This study aimed to establish how a nurse-led night service supported patients and family carers to remain at home and avoid hospital admissions. Semi-structured interviews were carried out with family carers (n=38) and hospice-at-home staff (n=9). Through night-time phone calls and visits, family carers felt supported by specialist hospice staff whereby only appropriate hospital admission was facilitated. Staff provided mediation between family carer and other services enabling more integrated care and support to remain at home. A hospice-at-home night service can prevent unnecessary hospital admissions and meet patient wishes through specialist care at home.

Palliative and end-of-life care (PEOLC) is holistic care delivered during the last year of life that aims to maintain patient comfort and relieve suffering and support illness management (Sam et al, 2011). According to Government and clinical guidance (Leadership Alliance for the Care of Dying People, 2014; NHS, 2014; National Institute for Health and Care Excellence (NICE), 2017), the priority is for people receiving PEOLC to be involved in that care, with services being person-centred, available day and night, and supporting expressed preferences, particularly regarding place of death (King et al, 2004; O'Brien and Jack, 2010). Recommendations also call for greater quality and integration of PEOLC provision (Institute for Public Policy Research (IPPR), 2018).

A Dying Matters survey (2015) reported that 70% of people prefer to die at home, although around 46% currently die in hospital (National End-of-life Care Intelligence Network, 2018), suggesting that more could be done to support patients to die at home. The number of people dying at home in the UK has increased recently due to the COVID-19 pandemic (Bowers et al, 2020), with figures showing above 5-year average figures (Office for National Statistics, 2020). However, dying at home is only preferred when families are well-supported and pain can be managed (Robinson et al, 2016). People wishing to die at home need access to a range of specialist care services, such as palliative and district nurse (DN) care, Marie Curie night sitters, doctor visits and family care provision (Gomes et al, 2015). While the literature identifies benefits to home-based PEOLC, through meeting patient and family's needs and preferences of care and in cost savings (McCaffrey et al, 2013), there is inadequate evidence of its impact on hospital admissions and preferred place of death (Palliative and End-of-life Care Priority Setting Partnership (PECPSP), 2015). The possibility of dying at home is improved by access to domiciliary care and medical equipment and should result in a reduction in inappropriate use of hospital beds (Gomes et al, 2015). Community-based PEOLC may reduce the number of unplanned hospital admissions and emergency department visits, thereby satisfying people's preferences and improving quality of death (Sutradhar et al, 2017; Wright et al, 2018).

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