A Relative Safeguard? The Informal Roles that Families and Carers Play when Patients with Dementia are Discharged from Hospital into Care in England and Wales

Abstract

ABSTRACT:In general hospitals, decisions are routinely made by health and social care professionals to discharge older people with dementia, who lack capacity, into long-term institutional care. There are few independent procedural safeguards that monitor how those professional 'best interests' decisions are made. Instead there is an assumption, implied by the Mental Capacity Act 2005 (MCA), which governs decision-making on behalf of incapacitated adults in England and Wales, that relatives will act as informal caretakers of patients' interests and will challenge professional decisions where necessary. This article examines whether this is the case in practice and the factors that may prevent relatives from carrying out this safeguarding role effectively. Our findings stem from a qualitative (ethnographic) study which captured observational data on acute and rehabilitation hospital wards in two hospitals within two NHS healthcare trusts in the North East of England. Our results show that relatives struggled to safeguard the rights of incapacitated patients with dementia when professional residence capacity and best-interests decisions were made about living arrangements and relatives were often ill-equipped or unsuitable to carry out this safeguarding role. Without better information-sharing and more robust independent procedural safeguards in the MCA, the rights of older patients with dementia are not being adequately protected during the hospital discharge process.

Hospital discharge processes involving older adults living with dementia: An integrated literature review

“…Only one qualitative article addressed data saturation in sample size (Bauer, Fitzgerald, Koch, King, ). Sample sizes varied considerably, from 16 case studies (Emmett et al., )–798 health professionals in a survey (Luxford et al., ). The samples were appropriately dependent on the research methodology and the number of research sites, with qualitative studies typically having smaller sample sizes.…”

“…Most family carers want to be acknowledged as a resource to benefit care delivery, but were intimidated by the decision‐making process and the “expert” knowledge exhibited by health professionals (Bloomer et al., ; Emmett et al., ; Lindhardt et al., ; Mockford, ). Three studies highlighted that health professionals lack the skills and/or time to effectively engage with family carers of older people with dementia and therefore families’ knowledge of the person's health and social circumstances was not used (Emmett et al., ; Jurgens et al., ; Mortenson & Bishop, ). Consequently, family carers were often left with a sense of frustration and resentment that their knowledge was not solicited or acknowledged by hospital staff (Fitzgerald et al., ; Lindhardt et al., ; Luxford et al., ).…”

“…Consequently, family carers were often left with a sense of frustration and resentment that their knowledge was not solicited or acknowledged by hospital staff (Fitzgerald et al., ; Lindhardt et al., ; Luxford et al., ). Family carers in several studies reported feeling excluded from key discharge decisions to the extent they were unaware that discharge was imminent until (or in some cases after) it occurred (Bauer, Fitzgerald, Koch, King, ; Emmett et al., ; Jurgens et al., ; Poole et al., ). In some instances, family carers find they have agreed to their relative being discharged to permanent long‐term care, referred to euphemistically as “a bit more care” during postdischarge case management meetings, but lack the confidence to challenge professional views to resolve the issue otherwise (Emmett et al., , ).…”

“…However, engaging older people with dementia in discharge planning is difficult due to the impact of declining cognition on communication and/or understanding (Bauer, Fitzgerald, Haesler, & Manfrin, ). Relatives or friends (family carers) are well positioned to provide valuable knowledge about the health and functional ability of the person with dementia (Emmett, Poole, Bond, & Hughes, ; Jurgens, Clissett, Gladman, & Harwood, ; Mortenson & Bishop, ). Where cognitive impairment is high and/or fluctuating, family carers take on the crucial role of authorised advocate or substitute decision maker (Poole et al., ).…”

Response from the CQC: the importance of effective leadership

“…6 The older patients concerned would often fade into the background during these decision-making processes, so their long-standing preferences were not heard. 7 GPs with an appropriate understanding of the principles and ethos of the MCA (including the Deprivation of Liberty Safeguards) can be very influential in their 'patient advocate' role, when the rights of people whose homewhich is so much a part of who we all are -is under scrutiny in relation to their health, care, and wellbeing.…”