Ensuring Respect for Human Rights in Locked-Down Care Homes
Lead Research Organisation:
University of Essex
Department Name: School of Philosophy and Art History
Abstract
Residential care facilities have been at the epicentre of the COVID-19 pandemic, with high rates of infection and high mortality rates. In response, many care homes have been 'locked-down' for extended periods, with expanded restrictions on the liberty both of residents and of those who wish to visit them. Even as the broader society emerges from lockdown, these restrictions continue in care home settings. If/when the restrictions are finally lifted, they are likely to be re-imposed in any care home where a new infection is reported.
The aim of this project is to determine how best to ensure that the human rights of residents of locked-down care homes are protected, both during the pandemic itself and in the 'new normal' that is likely to follow. The project focuses on three practices that have been common in care homes during the pandemic: the use of blanket restrictions on the movement of residents and their visitors; the blanket use of "Do Not Attempt Cardio-Pulmonary Resuscitation" (DNACPR) orders; decisions to restrict transfer of unwell patients to acute-care hospital facilities.
The project addresses two main questions.
1) How should the human rights to (inter alia) life, liberty, and non-discrimination be interpreted and applied to these three practices in the context of a public health emergency?
2) How can existing roles such as best-interests assessors (BIAs) and independent mental capacity advocates (IMCAs) best be adapted to help ensure respect for the human rights of residents who are living and dying in locked-down care homes?
The aim of this project is to determine how best to ensure that the human rights of residents of locked-down care homes are protected, both during the pandemic itself and in the 'new normal' that is likely to follow. The project focuses on three practices that have been common in care homes during the pandemic: the use of blanket restrictions on the movement of residents and their visitors; the blanket use of "Do Not Attempt Cardio-Pulmonary Resuscitation" (DNACPR) orders; decisions to restrict transfer of unwell patients to acute-care hospital facilities.
The project addresses two main questions.
1) How should the human rights to (inter alia) life, liberty, and non-discrimination be interpreted and applied to these three practices in the context of a public health emergency?
2) How can existing roles such as best-interests assessors (BIAs) and independent mental capacity advocates (IMCAs) best be adapted to help ensure respect for the human rights of residents who are living and dying in locked-down care homes?
Publications
Bhatt V
(2021)
Human rights and COVID-19 triage: a comment on the Bath protocol.
in Journal of medical ethics
Fitton E
(2023)
Managing DNACPR Recommendations in Residential Care: Towards Improved Training for Social Care and Capacity Professionals
in The British Journal of Social Work
Kuylen M
(2022)
COVID-19 and the Mental Capacity Act in care homes: Perspectives from capacity professionals.
in Health & social care in the community
Michalowski S
(2022)
DNACPR Decisions: Aligning Law, Guidance, and Practice.
in Medical law review
| Title | What is DNACPR |
| Description | We created a series of four very short 'sketch-up' videos to provide accessible explanations of CPR, DNACPR Recommendations, and the legal requirements pertaining thereto. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The videos were features in a national webinar sponsored by the National Mental Capacity Forum (a joint initiative of the Ministry of Justice and the Department of Social Care), which was itself featured on the SCIE website, a key national resources for frontline professionals in the Social Care sector. The videos are being used in training in NHS Trusts. |
| URL | http://autonomy.essex.ac.uk/dnacpr |
| Description | In a year-long research project, Essex Autonomy Project team examined the impact of COVID-19 on human rights in care homes in England and Wales. This research took place between November 2020 and November 2021 and was funded by AHRC. Between March and May 2021, the team conducted an online survey and a series of focus groups with professionals working in or with care homes during the pandemic. Some of our key findings are that: Restrictions on movement and visits, though aimed at protecting residents, often had an adverse impact on them; The pandemic caused confusion about the role of frameworks designed to protect residents' human rights. Often professionals were unsure whether deprivations of liberty aimed at protecting others rather than the individual required a Deprivation of Liberty Safeguards (DoLS) authorisation; Independent Mental Capacity Advocates (IMCAs) usually worked remotely, and at times they were unable to access care homes even when they deemed a visit necessary; Participants reported large differences between the ways different care homes managed restrictions; Care professionals expressed a desire for guidance that was more specific, and suggested that divergent approaches between care homes were partially due to guidance being very open to interpretation; There was an apparent increase in the use of "Do Not Attempt Cardio-Pulmonary Resuscitation" (DNACPR) decisions at care homes during the pandemic, and DNACPR decisions at times influenced medical decisions beyond CPR - for example, some participants reported they were used to deny transfer to hospital. The team has also responded to public controversies raised by the pandemic, such as ethical and human rights issues raised by pandemic triage and the use of Covid Status Certifications ("Vaccine Passports"). |
| Exploitation Route | The Joint Committee on Human Rights is using project findings in the context of its inquiry into Human Rights in Care Settings. NHS Integrated Care Systems are making use of project findings in reviewing DNACPR practices. Project findings are being used by Local Authorities in providing CPD training to frontline professionals. |
| Sectors | Healthcare Government Democracy and Justice |
| URL | https://autonomy.essex.ac.uk/covid-19/ |
| Description | Rapid response webinars made possible by this project have been viewed thousands of times by frontline professionals working in the care sector during the pandemic. Those webinars have provided an opportunity to explore dilemmas of practice, to disseminate authoritative guidance, and to exchange information. In addition, we have provided research support to the ethics committee of our local NHS Foundation Trust on ethical issues pertaining to high demand for ICU services, and we are currently providing research support to a member of parliament who is participating in the Cabinet Office review of plans for possible COVIC Status Certifications. The Joint Committee on Human Rights made use of project findings in its inquiry into Human Rights in Care Settings, and cited project findings concerning the use of DNACPR Recommendations in its final report. |
| First Year Of Impact | 2022 |
| Sector | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice |
| Impact Types | Policy & public services |
| Description | Delivered Invited Oral Testimony to the Joint Committee on Human Rights (Inquiry: Human Rights in Care Settings) |
| Geographic Reach | Europe |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://autonomy.essex.ac.uk/wp-content/uploads/2021/11/2021-11-02-Submission-of-Evidence-Jt-Com-HR-... |
| Description | Delivered Rapid Response Webinars to frontline professionals working in or with locked down care homes. |
| Geographic Reach | Europe |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | These training webinars provided direct benefit to staff in care homes and to residents. For a firsthand testimonial regarding their impact, listen to the Pandemic and Beyond podcast interview with Angela Rhodes, available here: https://anchor.fm/pandemicandbeyond/episodes/Pandemic-and-Beyond-Episode-3-Human-Rights-in-Care-Homes-with-Professor-Wayne-Martin-and-Angela-Rhodes-e12393i/a-a5p2jpb The webinars also provided real time data to civil servants, as described in this report to the Government from the Chair of the National Mental Capacity Forum: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1057881/nmcf-chair_s-fifth-annual-report-2020-21.pdf |
| URL | https://www.scie.org.uk/mca/directory/forum/covid-webinars |
| Description | Research Support for a Member of Parliament on Evaluating Human Rights issues in COVID passports |
| Geographic Reach | Europe |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://autonomy.essex.ac.uk/resources/assessing-covid-status-certifications-a-proportionality-litmu... |
| Description | Human Rights in Care Settings: Dissemination, Training and Policy Engagement |
| Amount | £49,090 (GBP) |
| Funding ID | FI03211 |
| Organisation | University of Essex |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2022 |
| End | 07/2022 |
| Description | Invited Testimony to the UK Parliamentary Committee on Human Rights (Human Rights in Care Settings Inquiry) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Research findings from this grant regarding respect for human rights in care settings were submitted as written evidence to the UK Parliament's bicameral Committee on Human Rights, in response to a call for evidence in support of the Committee's inquiry concerning Human Rights in Care Settings. The Committee subsequently invited project PI, Prof Wayne Martin, to give oral testimony before the Committee. Prof Martin's testimony was broadcast on Parliament TV, and has since appeared in Hansard. Findings from the research were cited in the Committee's final report. |
| Year(s) Of Engagement Activity | 2022 |
| URL | http://autonomy.essex.ac.uk/dnacpr |
| Description | National Webinar: CPR Decisions and the MCA |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | National Webinar organised in cooperation with the National Mental Capacity Forum to provide workforce training regarding ethical and legal challenges pertaining to CPR decisions and DNACPR recommendations. |
| Year(s) Of Engagement Activity | 2022 |
| URL | http://autonomy.essex.ac.uk/dnacpr |
| Description | Training Videos: DNACPR Recommendations |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We created a series of four very short 'sketch-up' videos to provide accessible explanation of CPR, DNACPR Recommendations, and legal requirements relating thereto. |
| Year(s) Of Engagement Activity | 2022 |
| URL | http://autonomy.essex.ac.uk/dnacpr |
| Description | Training for GP Trainees: (DNA)CPR: Legal and Ethical Challenges |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Training session provided to GP Trainees in the East Suffolk and North Essex NHS Foundation Trust on ethical and legal challenges regarding CPR decisions and DNACPR recommendations. |
| Year(s) Of Engagement Activity | 2023 |
| URL | http://autonomy.essex.ac.uk/dnacpr |
| Description | Workforce Training: (DNA)CPR: Ethical and Legal Challenges |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Training provided to NHS Professionals in the Humber and North Yorkshire Integrated Care Board regarding legal and ethical challenges pertaining to CPR decisions and DNACPR recommendations. |
| Year(s) Of Engagement Activity | 2023 |
| URL | http://autonomy.essex.ac.uk/dnacpr |