From ovid to COVID: the metamorphosis of advanced decisions to refuse treatment into a safeguarding issue

Abstract

Purpose This paper aims to examine advance decisions to refuse treatment (ADRTs) in the context of the COVID-19 (Coronavirus 2019) pandemic. This study considers the development of ADRTs, the lack of take up and confusion among the general public, clinicians and health and social care staff. Design/methodology/approach The paper is a conceptual piece that reflects on ADRTs in the particular context of COVID-19. It considers professional concerns and pronouncements on ADRTs. Findings ADRTs have a low take up currently. There is misunderstanding among public and professionals. There is a need for raising awareness, developing practice and a need to allay fears of misuse and abuse of ADRTs in clinical, health and social care settings. Practical implications The authors make recommendations that reflexive training and awareness become the norm in health and social care, that reform of ADRTs is undertaken to prevent misunderstandings and that the person becomes central in all decision-making processes. Originality/value This paper is original in considering ADRTs as a safeguarding issue from two perspectives: that of the person making the ADRT and being confident in respect for the decisions made; and that of clinicians and other professionals being reflexively aware of the need to accept advance decisions and not acting according to unconscious biases in times of crisis.

Discriminatory abuse: time to revive a forgotten form of abuse?

“…Recently, the term “structural abuse” has emerged in the literature as an “allied” category to discriminatory abuse (Lyne and Parker, 2020, p. 362). The term describes “in-built, unquestioned devaluation of people through policy and practice based on certain characteristics” (Parker, 2021, p. 169) and it emphasises socio-structural factors and the persistent “othering” that marginalised groups experience in society.…”

“…Both Iparraguirre (2014) and Forbat (2004) emphasise the correlation between abuse and structural issues such as poverty, race and class, rather than dominant accounts of abuse as an interpersonal phenomenon, while Brown (2000) refers to discriminatory abuse as a consequence of marginalisation. Several authors relate this to pathologising discourses about people with disabilities (Doherty, 2015; Sin et al , 2011; Balderston et al , 2019; Healy, 2020), people from minoritised ethnicities (Forbat, 2004), people who identify as lesbian, gay, bisexual, trans, queer or other non-heterosexual or non-cisgendered identities (LGBTQ+) (Westwood, 2018), older people (Bogdanova and Grigoryeva, 2021; Lyne and Parker, 2020) and people who experience mental health issues (Carr et al , 2019; Hafford-Letchfield et al , 2020). Intersectional identities, for example, a trans person with a disability, compound experiences of discrimination further (Balderston et al , 2019).…”

“…Political “victim blaming” also creates permissive cultures where discrimination can thrive (Williams, 2021; Healy, 2020). Several articles discuss the significant and disproportionate impact of policies during COVID-19 for older people, particularly rights to private and family life (through increased social isolation) and rights to life (through misuse of Do Not Resuscitate processes) (Williams, 2021; Lyne and Parker, 2020; Bogdanova and Grigoryeva, 2021). Issues of power in statutory responses and unequal access to services are also emphasised (Hafford-Letchfield et al , 2020; Forbat, 2004).…”

“…There are also suggestions that discriminatory abuse may be more common in residential settings, particularly in “out-of-area” placements (Cambridge et al , 2006). COVID-19 has shone a light on hospital and care home settings and two studies note the interpretation of “do not resuscitate” or “advance decision to refuse treatment” policies to address organisational pressures rather than the human rights of people in their care (Williams, 2021; Lyne and Parker, 2020).…”

“…Like most abuse, discriminatory abuse often occurs in hidden spaces (Landman, 2014; Westwood, 2018), and this was exacerbated during the COVID-19 pandemic (Williams, 2021; Lyne and Parker, 2020). People who perpetrate discriminatory abuse may exploit the hidden nature of abuse or the difficulties people may face when accessing services.…”