Comment on Scottish Government CMO COVID-19 Guidance: Ethical Advice and Support Framework version 2:2
Centre for Mental Health and Capacity Law
Edinburgh Napier University
Comments on Scottish Government Chief Medical Officer COVID-19 Guidance: Ethical Advice and Support Framework version 2:2
The Centre for Mental Health and Capacity Law (the Centre) notes that comments are invited on the Chief Medical Officer’s COVID-19 Guidance: Ethical Advice and Support Framework version 2:2 (the guidance). It welcomes this opportunity with a view to informing the next version of such guidance which it hopes will be published very soon. Given the Centre’s focus, such comments are made from the perspective of persons with mental illness, dementia or learning disability who may or may not be experiencing capacity issues.
The first part of our comment is a general one concerning the human and equality rights framework and legal principles that must inform all ethical advice and support decisions during the COVID-19 crisis. The second part comments on specific sections of the guidance.
Part 1: Human and equality rights and legal framework
The references to the Equality Act 2010, the Human Rights Act 1998 and principles of the Adults with Incapacity (Scotland) Act 2000 (AWIA) are welcome. However, we consider it essential that the guidance is much clearer about the legal and wider human rights principles that govern the exercise of duties and responsibilities of those making healthcare decisions affecting persons with mental illness, dementia or learning disability. Importantly, these include respect for autonomy and equal rights enjoyment, non-discrimination and proportionality.
By virtue of the Human Rights Act 1998 and Scotland Act 1998 European Convention on Human Rights (ECHR) rights are legally enforceable across Scotland and must be reflected in legislation, policy and guidance. The Convention on the Rights of Persons with Disabilities (CRPD) is also highly influential. Devolved legislation and policy may be prevented if it is not compatible with the CRPD and, as a higher source of international law, it should inform the interpretation of ECHR rights. Importantly, the Scottish Government has given a commitment to give effect to CRPD rights in its A Fairer Scotland for Disabled People: delivery plan (2016) and CRPD support requirements are reflected in the Scottish Mental Health Strategy 2017-2027.
People with disabilities are likely to be particularly affected by the ethical issues of resource allocation and equal treatment, and it is vital (and required by CRPD) that guidance particularly affecting them is drawn up in consultation with disabled people. We recognise that extensive consultation is difficult in this crisis, so a helpful guide which we suggest should influence the drafting and be explicitly referenced in the ethical framework is Covid 19 and the rights of disabled people- statement supported by disabled people’s organisations and allies.
The statutory principles underpinning the AWIA are clear that any decision concerning the care, support and treatment of an ‘incapable adult’ must take account of not only what will benefit the adult and is the least restrictive alternative. Equal account must also be taken of their present and past ascertainable wishes and feelings as well as the views of nearest relatives, named persons, primary carers, guardians and attorneys. Moreover, there is an ongoing requirement after AWIA interventions are in place to support and encourage the ability of an incapable adult to exercise their decision-making skills concerning, amongst other things health and welfare matters. The need to keep the views of the adult firmly in mind at all times, whether or not they are experiencing capacity issues, reflects ECHR and Convention on the Rights of Persons with Disabilities CRPD standards.
ECHR and CRPD principles emphasise that persons with mental illness, dementia or learning disability are entitled to the same level of autonomy in terms of involvement in decisions about their health and welfare as everyone else. They are also entitled to enjoy the right to life, liberty, freedom from inhuman or degrading treatment and access to justice in the same manner as others. The existence of a mental disability or related impairment must not justify a lower level of rights enjoyment and, indeed, to use such justification amounts to discrimination.
It is of course sometimes necessary to actively support persons with mental disabilities to achieve this equal level of rights enjoyment including involvement in health and welfare decisions. For this reason the CRPD further requires that individuals are provided with access to appropriate support (supported decision-making) to ensure that their voice is genuinely heard. Such support may be found in welfare powers of attorney, advance care plans, advance statements/decisions, peer, family or professional support, independent advocacy or clearly and appropriately communicated information.
It is fully appreciated that the COVID-19 pandemic means that health and social care bodies will be presented with unprecedented and very challenging ethical decisions about healthcare, support and resource allocation. The ECHR and CRPD recognise that there may be emergency situations where individual rights and freedoms may need to be more restricted than is normally the case. However, such restrictions must be lawful, reasonable and proportionate and must not directly or indirectly discriminate against persons with mental disabilities relative to others; and steps must be taken to ensure that they are actively protected from this occurring.
Part 2: Specific sections of the guidance
- On page 4 of guidance there is reference to ‘…Clinical decision-making guidance for Scotland has been produced by a senior clinical team, chaired by Professor Tom Evans. This guidance is considered both clinically sound and on firm moral ground.’ We assume this is the document referred to in Endnote 4 of the guidance although it is noted that publication is said to be pending. It would be useful to have sight of this document in order to provide a more complete comment to this guidance. We are aware of the controversy over the NICE guidance COVID-19 rapid guideline: critical care in adults which required to be amended to address concerns about the inappropriate use of the Clinical Frailty Scale for adults with learning disabilities and autism. We assume similar guidance will be needed in Scotland and it is important these concerns are addressed. We also note guidance issued in England over the inappropriate use of DNACPR orders. This is also a concern in Scotland that should be addressed.
- On page 5 there is two references to ‘clear national guidance’. It should be clarified whether this is intended to be the guidance here or whether additional guidance is to be published and, if so, what this additional guidance will be. If it is intended that this guidance will be the only guidance then it is strongly recommended that it contains much greater detail.
- Page 7:
- All the principles mentioned on page 7 of the guidance importantly need to specifically incorporate the underpinning human rights principles, including those relating to non-discrimination, referred to in Part 1 above.
- The first bullet point of the ‘Working Together’ principle refers to all adults whether they are capable or incapable. However, the wording and reference provided (Endnote 12) refers to the Adults with Incapacity (Scotland) Act. This reference should be removed, there should be a stronger reference to respecting and supporting patient autonomy (see Part 1 above) and the need to provide patients with full and understandable information (Montgomery v Lanarkshire Health Board  UKSC 11).
- Page 8 ‘Capacity and Consent:
- First bullet point: ‘All patients over 16 years old are considered under Scots Law as adults…’ should be replaced with ‘All patients aged 16 years old or over are considered under Scots Law as adults…’
- Second bullet point:
- The requirement to have regard to the other AWIA principles (see Part 1 above) about taking account of the adult’s wishes and feelings must also be mentioned here in addition to those relating benefit and least restrictive alternative.
- The Adults with Incapacity (Scotland) Act the Code of Practice on Part 5 of the Act (Medical Treatment and Research), and Mental Welfare Commission for Scotland The Right to Treat (2011) and Supported Decision-Making (2016) guidance should be referenced by way of further guidance.
- Third bullet point:
- This should refer to guardians as well as attorneys and make it clear that what is meant here are welfare guardians and attorneys. Moreover, the procedures under section 50 of the AWIA for resolving disagreements between welfare guardians and attorneys and medical practitioners (proposing to treat under section 47) about an adult’s treatment should be specifically mentioned.
- It should be noted that the document referenced in Endnote 16 explicitly states that it does not cover capacity for medical decisions and should therefore be removed.
- Fourth bullet point: it should be stated that where a child lacks capacity then the person with parental responsibilities can make these decisions.
- Ethical Advice and Support Groups:
- The membership of these groups is stated to include clinical professionals, academics, lawyers, religious groups, social workers and lay persons. However, as persons with disabilities, including mental disabilities will be particularly impacted by these healthcare decisions the membership should specifically include representatives of disability organisations.
- On page 5 (paragraph 2) there is reference to the provision, via the ethical advice and support groups, of psychological support for healthcare staff when making difficult, complex or challenging decisions. Whilst we can see the essential need for such support for those making healthcare decisions during the COVID-19 crisis, we consider that this is completely different to obtaining support for making ethical decisions and it is more appropriate to provide separately. Moreover, the guidance must emphasise the requirement for provision of such separate psychological support.
- It is vital that there is a specific requirement made in the guidance that members of these national and board Ethical Advice and Support Groups make all their decisions according to the legal and human rights framework and principles mentioned above. Moreover, the guidance should clearly set these principles out.
- It is also unclear whether the guidance is intended to cover decisions concerning both physical and mental healthcare. If it is also intended to cover mental healthcare decisions then the same legislative principles (under the Mental Health (Care and Treatment) (Scotland) Act 2003) and human rights requirements apply.
6th April 2020
Professor Jill Stavert, Professor Colin McKay and Dr Paul Hutton on behalf of the Centre for Mental Health and Capacity Law, School of Health and Social Care, Edinburgh Napier University
 ss 2, 3 and 6 Human Rights Act 1998.
 ss29(2)(d) and 57(2) Scotland Act 1998.
 ss 35 and 58 Scotland Act 1998.
 Article 4(3) CRPD.
 As defined by s1(6) Adults with Incapacity (Scotland) Act 2000.
 s1(4) (a) Adults with Incapacity (Scotland) Act 2000.
 s1(4)(b)-(c) Adults with Incapacity (Scotland) Act 2000
 s1(5) Adults with Incapacity (Scotland) Act 2000.
 Article 8 ECHR.
 Article 12 CRPD.
 Articles 8 and 14 ECHR; Articles 3, 5, 12 and 25 CRPD.
 Articles 12(3)-(4) CRPD.
 See Mental Welfare Commission for Scotland (2016) Supported Decision-Making: Good Practice Guide https://www.mwcscot.org.uk/sites/default/files/2019-06/mwc_sdm_draft_gp_guide_10__post_board__jw_final.pdf
 Article 15 ECHR; Article 11 CRPD.