What do human rights mean in a pandemic?

• Written by: Colin McKay — Centre for Mental Health and Capacity Law, Edinburgh Napier University
• Published: 28th April 2020

Colin explains why making human rights real is vital in relation to COVID-19.

On 23 April, the Scottish Government published its ‘Coronavirus (COVID-19): framework for decision making’ (this link will take you away from our website). I was glad to see protecting human rights repeatedly emphasised as being central to the Government’s approach.

That’s no small thing, and I am sure the Government is sincere. But in my experience of health and social care, it can be easier to state a commitment to human rights than to demonstrate how a human rights based approach makes a difference to what you do.

Making human rights real is even more vital now, when COVID-19 disproportionately affects groups including older people, people with disabilities, and people without secure homes; and when services are being diverted to coping with the epidemic.

International human rights bodies have issued a range of guidance on the human rights implications of the emergency [Note 1] . Key principles include:

• The enjoyment of the highest attainable standard of health is a fundamental human right of all, which should be achieved without discrimination
• A state of emergency, or any other security measures, should be guided by human rights principles: measures should be based on law, objectively justified and proportionate
• States should prevent discriminatory denial of health care on the basis of disability
• States must ensure that persons with disabilities are actively involved in the implementation and monitoring of COVID-19 measures.

These have been supplemented by powerful statements by UK and Scottish disabled people’s organisations and allies [2]. Human rights principles have already successfully been used to challenge discriminatory approaches.

In England, the National Institute for Health and Care Excellence (NICE) issued guidance on access to critical care which advised clinicians to use the ‘Clinical Frailty Scale’. Following a threat of judicial review, this was amended to make clear that this scale should not be used in younger people, people with stable long-term disabilities, learning disabilities or autism (this link will take you away from our website).

Another major concern was that the legislation restricting people from leaving home would have a disproportionate effect on people with autism and other conditions. The guidance has now made clear that people with a medical need to do so, including people with learning disabilities or autism, may leave home more often (this link will take you away from our website).

However, there is more to do. The Scottish Government has issued Clinical Guidance (this link will take you away from our website) and an Ethical Advice and Support Framework (this link will take you away from our website) which have been criticised by the Scottish Human Rights Commission, the Equality and Human Rights Commission, and the Centre for Mental Health and Capacity Law, for not providing clear guidance on the requirements of human rights.

In particular, much more needs to be said about ensuring that decisions about who should get particular treatments are not made in a discriminatory way, that judgements about quality of life are not based on the presence of a disability, and that the wishes and views of the patient are fully taken into account.

This is particularly important in advance care planning. There is huge concern that people may be encouraged to agree documents stating that they should not be resuscitated in the event of a cardiac arrest, or admitted to critical care, or even to hospital. People should be able to set out what they want and do not want should they become severely ill – but they should be supported to set out their informed wishes, not feel pressurised into signing off a decision which is effectively taken by others.

That is not just good care – it is a human rights obligation [3].

It is welcome that the First Minister has confirmed that people should not be pushed into agreeing a DNACPR form, but we have still to see clear guidance about how advance care planning should operate in the situation we are in.

The pandemic has also led to legal changes reducing the obligations on local authorities to assess needs, and the reduction or withdrawal of many care and support services. Difficult decisions must be made. A human-rights based approach does not seek to deny that, but to ensure that the way we take decisions truly respects ‘the inherent dignity and equal and inalienable rights of all members of the human family ’ [4].

This Opinion is part of a specially commissioned series by the ALLIANCE’s Academy programme looking at COVID-19 and the Five Provocations for the Future of Health and Social Care.

Notes

[1] Committee on Economic, Social and Cultural Rights: Statement on the coronavirus disease (COVID-19) pandemic and economic, social and cultural rights (this link will take you away from our website)

‘UN Human Rights Treaty Bodies call for human rights approach in fighting COVID-19’ (this link will take you away from our website)

Joint Statement: Persons with Disabilities and COVID-19 (this link will take you away from our website) by the Chair of the UNCRPD and the Special Envoy of the United Nations Secretary-General on Disability and Accessibility

[2] https://www.disabilityrightsuk.org/news/2020/april/covid-19-and-rights-disabled-people (this link will take you away from our website); and https://inclusionscotland.org/silc-statement-on-nhs-and-rights-of-disabled-people (this link will take you away from our website) .

[3] In particular, under Article 8 of the European Convention on Human Rights, and Article 12 of the UNCRPD.

[4] Preamble to the Universal Declaration of Human Rights.

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