COVID-19 resources on Mental capacity

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Frustrated, angry and unfair: staff experiences of DNAR decision-making in 2020

The British Institute of Human Rights

This report provides findings and recommendations from research with staff working across health, care and social work, who have shared their experiences of Do Not Attempt Resuscitation (DNAR) decisions. The findings show a worrying picture around the people’s rights to involvement in care and treatment decisions, including DNARs, and in staff confidence and ability to ensure human rights considerations are part of everyday decision-making. Of the people who attended the research workshop and completed a survey: 97% said there needs to be more easily accessible information about human rights; whilst 78% felt supported to meet the legal duty to uphold human rights in their day-to-day work, only 46% said they felt supported to uphold human rights in their day-to-day work during Covid-19; only 8% said people’s right to involvement in care and treatment decisions is explicitly discussed with them, an only 25% felt supported to involve people in DNAR decisions; over 40% of participants said it is assumed that people who have had a DNAR order placed on their file do not have mental capacity (only 26% said capacity assessments (a legal requirement) had been conducted); almost 30% of participants felt DNAR decisions during Covid-19 are worse (14% said they had not changed but were usually poor). 20% had made more challenges to DNAR decisions during Covid-19; only 16% felt fully listened to; more than 50% of participants felt that discrimination at least sometimes happening in DNAR decisions. The recommendations set out in this report focus on both the current Covid-19 context and the wider use of DNAR orders in “ordinary” times, and the need for them to be framed exactly as they are, as human rights issues.

Last updated on hub: 03 March 2021

Rapid response guidance note: vaccination and mental capacity (first update)

39 Essex Chambers

A general discussion examining to the legal position in relation to testing for COVID-19, especially as testing (a) starts to be more generally available; and (b) is increasingly been rolled out as mandatory in certain settings. It primarily relates to the position in England in relation to those aged 18 and above; specific advice should be sought in respect of Wales and those under 18.

Last updated on hub: 12 January 2021

Valuing voices in Wales: protecting rights through the pandemic and beyond

National Development Team for Inclusion

This report brings together findings from a survey, carried out in June 2020, of 72 advocates working across Wales. Advocates shared urgent concerns which reflect not only the restrictions that the pandemic brought but also the wider societal and cultural belief systems and attitudes towards people who are supported through advocacy. There are widespread and profound concerns about the impact of the pandemic on the human rights of people who use health and social care services. Responses indicated frequent failures to provide people with the support to which they are legally entitled, increasing risks of abuse and harm and weaknesses in the safeguards needed to prevent and address these. Key findings show that: eighty-five percent (85%) of advocates felt the human rights of the people they support were not being fully upheld; a third (33%) of advocates had experienced Do Not Attempt Cardio Pulmonary Resuscitation orders (DNACPRs) being placed on the people they support without any regard to the person’s feelings, wishes, values or beliefs, and without formal capacity assessments or consultation with family; over forty percent (43%) of advocates reported care providers had stopped all visitors and almost a third (31%) reported that people were being confined to their rooms; over a quarter of advocates (28%) experienced a care provider seeking to prevent access to advocates despite rights to advocacy remaining unchanged; while some people find digital communication can be as effective as meeting in person, for most people it is not comparable. It means that they are not getting the support they need and this risks further entrenching health inequalities.

Last updated on hub: 16 December 2020

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

Journal of Adult Protection

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.

Last updated on hub: 09 December 2020

Valuing voices: protecting rights through the pandemic and beyond


This report offers insight into the challenges people face having their rights upheld and being listened to during the Covid-19 pandemic. These challenges are not always new but have been exacerbated by the restrictions in response to the coronavirus pandemic. The report brings together findings from a survey of 435 advocates working across England and Wales that was carried out in June 2020. Advocates shared urgent concerns which reflect not only the restrictions that the pandemic brought but also the wider attitudes towards people who have additional support needs. The right to advocacy remained unchanged by the Coronavirus Act and restrictions enacted by government. However, the survey findings suggest that while for some people this meant good support continued, for others the restrictions meant they could not get the support they needed, when they needed it – three quarters (76%) of advocates felt the human rights of the people they support were not being fully upheld. Nearly a third (31%) of advocates had seen Do Not Attempt Cardio Pulmonary Resuscitation orders (DNACPRs) being placed on the people they support without regard to the person’s feelings, wishes, values or beliefs, and without formal capacity assessments or consultation with family. One in five reported that people were being blanketly denied healthcare. Over a quarter of advocates experienced a care provider trying to prevent access to advocacy. Advocates also highlighted a lack of care planning, discharge planning, and support. The report sets out concrete recommendations for government, health and social care providers and local authorities, calling for a culture change and a reinvigorated focus on human rights that recognises individual choice and control.

Last updated on hub: 21 October 2020

Face-to-face DoLS assessments strongly discouraged in high-risk Covid areas

Community Care

A brief overview of current guidance relating to face-to-face Deprivation of Liberty Safeguards (DoLS) assessments, highlighting that practitioners should only carry out face-to-face assessments “in exceptional circumstances” in areas covered by tier 2 and 3 Covid-19 restrictions. Updated guidance also says that people without relevant capacity are unlikely to be committing offence if they breach self-isolation regulations.

Last updated on hub: 20 October 2020

Adult social care: Covid-19: winter plan 2020-2021 newsletter

39 Essex Chambers

This note provides an overview of the Department of Health and Social Care (non-statutory) guidance ‘Adult social care: our COVID-19 winter plan 2020 to 2021’. It discusses the key issues for local authorities, and in particular the interplay with the wellbeing principles of the Care Act 2014, including managing a potential conflict in terms of the wellbeing of both care home residents and those in the community with care and support needs as regards prevention of C-19. It also looks at the implications of the winter plan for the right to respect for family and private life, addressing the tension between the imperative to protect the health of social care users (and the social care workforce) and the need to respect the family life and private life rights of those who might be subject to protective restrictions. Finally, it explores the impact of the winter plan on deprivation of liberty safeguards, in particular in relation to testing and 14-day isolation requirements.

Last updated on hub: 06 October 2020

Webinar recording: COVID-19, DoLS, and Best Interests

Social Care Institute for Excellence

This webinar was chaired by Baroness Ilora Finlay and the technical host was Prof Wayne Martin and discussed COVID-19, DoLS, and best interests.

Last updated on hub: 01 October 2020

Supporting you to make decisions while caring for someone living with dementia during Coronavirus (COVID19) and beyond

University College London (UCL)

This document guides carers of people living with dementia through the process of making difficult decisions during the Covid-19 pandemic whilst taking into consideration wishes and preferences of those they care for and the legal aspects of making decisions. The guide covers a number of decisions carers may need to make if the person they are caring for has or is suspected to have Covid-19. These include decisions such as how to care for them if they are unable to visit them, whether they should go to hospital if they become unwell and what it means to have a do not attempt cardiopulmonary resuscitation order. The guide also provides useful tips for carers such as the Covid-19 symptoms to watch out for which may differ to the commonly recognised symptoms, where to find help and support when making decisions and how to look after yourself as a carer. Topics covered include: thinking about any existing advance care plans; wishes and preferences; legal aspects of decision making; managing care at home; supporting someone in a care home; admitting them to hospital if they are very unwell; support for carers; and how carers can look after themselves during coronavirus and beyond.

Last updated on hub: 15 September 2020

DoLS and Best Interests in response to Covid-19

National Mental Capacity Forum

This webinar explores the implications of Covid-19 and the lockdown for deprivation of liberty safeguarding and best interest decisions. It covers early issues raised with the Welsh Government; worries from those with learning difficulties; DoLS guidance; DoLS in practice; the law regarding best interests decision making; and critical care decision making and Covid-19.

Last updated on hub: 15 September 2020

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