Gatekeepers, proxies, advocates? The evolving role of carers under mental health and mental incapacity law reforms

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

“…Recent reforms of incapacity laws in England and Wales have similarly done much to elevate the legal rights of relatives, so that they can now participate more fully in health and welfare decisions involving their incapable loved ones on a formal and informal basis. Whilst such involvement acknowledges that good familial and social networks certainly shape the perception of what is best for incapable patients (Keywood, 2003) -and therefore who better to help make these judgements than the older person's family members and close friends? -cautionary lessons from practice suggest that an over-reliance on relatives to safeguard the rights of incapacitated adults can sometimes lead to an erosion of the rights of incapable people and occasionally to their financial and physical abuse (Selwood and Cooper, 2009;Boyle, 2011;Bopp and Coleson, 1996;Keywood, 2003;Manthorpe, Samsi and Rapaport, 2012 (Redley, Clare, Luke and Holland, 2009) These concerns are echoed by Keywood, who identifies the difficulties relatives face accessing health and social care services when they are untrained or unsupported in that role (Keywood, 2003).…”

“…Whilst such involvement acknowledges that good familial and social networks certainly shape the perception of what is best for incapable patients (Keywood, 2003) -and therefore who better to help make these judgements than the older person's family members and close friends? -cautionary lessons from practice suggest that an over-reliance on relatives to safeguard the rights of incapacitated adults can sometimes lead to an erosion of the rights of incapable people and occasionally to their financial and physical abuse (Selwood and Cooper, 2009;Boyle, 2011;Bopp and Coleson, 1996;Keywood, 2003;Manthorpe, Samsi and Rapaport, 2012 (Redley, Clare, Luke and Holland, 2009) These concerns are echoed by Keywood, who identifies the difficulties relatives face accessing health and social care services when they are untrained or unsupported in that role (Keywood, 2003). Our own observations, albeit from a limited study carried out in a specific setting, suggest that family and close friends also struggle to deal with the emotional burdens associated with discharge planning (Stoller and Pugliesi, 1988) and lack timely information to make well-informed decisions about placement choices for patients at crucial planning meetings (Redley, Clare, Luke and Holland, 2009).…”

“…Our findings also suggest that not all relatives have the temerity to question professional opinion, especially given that most relatives will lack an understanding of the medical and legal construct within which capacity assessments and best-interests determinations are made. Relatives also struggle to uncouple their own best interests from those of the care recipient (Keywood, 2003). Whilst this is understandable, particularly in the context of residence decisions, where relatives may need to juggle a myriad of new personal, emotional and financial responsibilities surrounding discharge, these issues can often conspire to mean that relatives are not always best placed to promote the best interests of vulnerable older adults when residence decisions are made and they may be ill-equipped to act as effective caretakers of those interests.…”

“…Relatives were observed to play a number of informal roles during the hospital discharge process, both in connection with the patient concerned and when interacting with health and social care professionals on hospital wards and elsewhere (Keywood, 2003;Charles, Gafni and Whelan, 1997).…”

Why are relatives of care home residents reluctant to “rock the boat”? Is there a culture of acceptance?

“…However, there is growing evidence which indicates that (unpaid) family carers may not always be the most suitable champions, due to their overlapping and often conflicting caring roles (Keywood, 2003). A recent report by the CQC noted that many providers reported receiving five or fewer complaints over a 12-month period (CQC, 2014), and many inspectors felt they did not have enough evidence to ascertain how well complaints were being handled within the sector.…”