Comment on CMO COVID-19 Guidance: Clinical advice version 2:3 (3rd April 2020)
Comment on Scottish Government Chief Medical Officer’s (1) COVID-19 Guidance: Clinical advice version 2:3 (3rd April 2020); and (2) COVID-19 Guidance: Ethical Advice and Support Framework version 2:2 (3rd April 2020)
These comments have been prepared by Professor Jill Stavert and Professor Colin McKay of the Centre for Mental Health and Capacity Law, Edinburgh Napier University, and Professor Alison Britton, Professor of Healthcare and Medical Law at Glasgow Caledonian University.
We welcome the opportunity to comment on the Chief Medical Officer’s COVID-19 Guidance: Clinical advice version 2:3 (Clinical Guidance), with a view to informing the next versions of both the Clinical Guidance and the Chief Medical Officer’s COVID-19 Guidance: Ethical Advice and Support Framework version 2:2 (Ethical Guidance). As each guidance is integral to the other this comment expands on the Centre for Mental Health and Capacity Law’s Comment on the Ethical Guidance of 6th April 2020.
The first part of our comment contains general observations and recommendations relating to both guidance. The second part comments on specific sections of the Clinical Guidance.
We appreciate these guidance documents have been written at great speed, and contain important advice. Our key concerns are:
- They do not sufficiently explain the legal, ethical and human rights requirements which clinicians need to follow in making decisions about patients, particularly those with disabilities
- Some of the advice, particularly the templates in the Clinical Guidance, risk actively promoting an unlawful and discriminatory approach to certain groups.
As NHS England and NHS Improvement state in a communication of 7th April 2020 Maintaining standards and quality of care in pressurised circumstances:
‘We should be cognisant of the principle of equity of access for those who could benefit from treatment escalation, and the principle of support for autonomy for those who want to be involved in decisions.’
Part 1: General
- Interrelationship between the Clinical Guidance and Ethical Guidance
The vital interrelationship between the Clinical Guidance and Ethical Guidance should be explicitly stated and there must be consistency between them. At the moment, in relation to some of the key issues we would expect to be covered, the documents seem to point to each other for detail, which is difficult then to find. We would therefore recommend that they are both edited and revised by a single author to ensure consistency and complete coverage.
The Ethical Guidance at page 4 (Purpose section, para 4) also refers to the Clinical Guidance as being ‘considered both clinically sound and on firm moral ground.’ If it is considered necessary that such a statement should be included then it should be stated in each guidance exactly by whom and how this assessment has been made.
Perhaps the inclusion of an introductory paragraph which sets out the context for ethical guidance may be considered which notes that there is no specific treatment or prophylaxis option for COVID-19. It is recognised that this may change. As new and different options present then the ethical circumstances may also change. It may therefore be useful to include a sentence noting that the ethical guidance may change to reflect any change in treatment options.
- Legal and human rights imperatives
It is essential that the Clinical Guidance and Ethical Guidance are both much clearer about the legal and wider human rights imperatives that govern the exercise of duties and responsibilities of those making healthcare decisions affecting persons with mental illness, dementia or learning disability. As stated in the Comment of 6th April 2020, these importantly include respect for autonomy and equal rights enjoyment, non-discrimination and proportionality. Respect for autonomy, in turn, requires support for patient decision-making and their active participation in clinical decision-making.
People with disabilities, including those with mental disabilities, are likely to be particularly affected by the ethical and clinical issues of resource allocation and equal treatment, and it is vital (and indeed required by Convention on the Rights of Persons with Disabilities (CRPD)) that guidance particularly affecting them is drawn up in consultation with disabled people. Whilst extensive consultation will, of course, be difficult in the current crisis we strongly suggest that useful direction for the clinical and ethical frameworks can be found in Covid 19 and the rights of disabled people- statement supported by disabled people’s organisations and allies and that this should be specifically referenced in the guidance.
We appreciate that the COVID-19 pandemic means that clinical teams and health and social care bodies will be presented with unprecedented and very challenging clinical and ethical decisions about medical treatment, healthcare, support and resource allocation. The European Convention on Human Rights (ECHR) and CRPD also recognise that there may be crisis situations where everyone’s rights and freedoms will have 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.
- Reference to GMC Guidelines
Each guidance is heavily informed by the 2008 GMC guidelines on consent. However, we are aware that these have very recently been substantially rewritten, although they are currently unpublished, to reflect the requirements of the Montgomery v Lanarkshire ruling. Given that this ruling must be adhered to by clinicians its requirement to provide full information to patients should be reflected throughout each guidance.
Part 2: Specific Clinical Guidance issues
- We note that it is stated ‘On admission to hospital all adults should be assessed for frailty, irrespective of COVID-19 status. It is recommended that the Clinical Frailty Score (CFS) is used as part of a general assessment that is recorded clearly.’
- As mentioned in the Comment of 6th April 2020, we are aware of the concerns expressed about the inappropriate use of the Clinical Frailty Scale (CFS) for adults with learning disabilities and autism which led to a revision of the NICE rapid review on Critical Care in Adults (NG 159). The point made at para 6.1 about the limitations of the CFS for younger and disabled patients also needs to be emphasised in the Key Recommendation. The CFS must not be the main basis for resource allocation choices, or access to critical care.
- We note that NG159 is mentioned in the list of useful resources. It would be helpful to be clear as to the status of this document, and whether it is endorsed as guidance for Scotland.
- There also needs to be explicit direction about actions that can never be clinically and ethically justified during the COVID-19 crisis, such as the blanket use of DNACPRs on care home residents or assumptions about futility of treatment being made solely on the basis of the existence of a physical or mental disability. In this connection, as in the Comment of 6th April 2020, we note guidance issued in England over the inappropriate use of DNACPR orders.
- It is important to appreciate that persons with mental illness, dementia or learning disabilities (with or without an incapacity assessment), and indeed anyone, may have decision-making difficulties, particularly at stressful times and when they are unwell, and so may need to be actively supported to make decisions about their care and treatment. There must therefore be an explicit requirement for effective access to supported decision-making not only in the form of advance care planning, but to actually assist in making decisions about and putting into effect advance care planning arrangements.
Section 1.1 Surge
- It appears to be assumed that no special ethical issues will exist needing national guidance unless and until Scotland experiences an extreme surge. We strongly disagree with this. Clinicians must be properly prepared to enable them to make the appropriate ethical decisions which take the necessary human rights and legislative principles into account at all times. It is unreasonable for clinicians and potentially dangerous and discriminatory for patients if such guidance is only to be provided in circumstances of extreme pressure. The Clinical Guidance must therefore be relevant to all situations during the COVID-19 crisis.
- Bullet points 2 and 3 of the second set of bullet point on page 5 should specifically mention the need for support for decision-making (see comments above in the Key Recommendations section). Once again, it seems to be assumed that a surge will trigger the creation of ‘specific tools to aid decision making … will be issued with legal and ethical guidance alongside advice from expert professional groups’. These tools and advice are needed now or, at the very least, there should be a clear process for developing them now in anticipation of the extreme surge involving input from lawyers, ethicists, and particularly from organisations representing disabled people.
- We agree with the aspiration to continue with Realistic Medicine practice in ‘discussions with patients about their preferences in the event of becoming acutely unwell’ (page 5), but this will be very difficult in the current circumstances, when most people are unable to speak to their GP or other primary care staff, and hospital staff are under extreme pressure. This may need further guidance and advice.
Section 2: Scope
Although we assume that the guidance is directed to clinicians this is not entirely clear. This should be clarified and where it is directed towards managers and health boards then this should also be indicated.
Section 4: Community Assessment & Referral to Secondary Care
This section again notes the importance of discussing anticipatory care plans in advance of admission to hospital. However, the guidance needs to specify how can this be done and the tools to be used to achieve this.
Section 5: Anticipatory care planning
- We note that (page 7) it is stated that where anticipatory care plans have already been made these should be followed. However, in accordance with Health Improvement Scotland guidance which makes it clear that anticipatory care plans can be updated at any time to reflect changes in thinking or circumstances, it must be clear that there should be an opportunity for further dialogue to reflect changes in thinking or circumstances.
- We welcome in principle the requirement to have ‘an open and honest conversation with patients and their families and carers so that future care can be planned in line with the patients’ wishes’ (page 8). However, it is unclear who should be having this conversation and this needs to be made clear, as well as how exactly ‘efforts should be made where appropriate to communicate these discussions to the wider … team’. Again, there also needs to be explicit reference to the need for appropriately tailored supported decision-making. At challenging times such as now patients are more likely to be confused by and overwhelmed by unclear and copious quantities of information about advance care planning, particularly if sent unsolicited.
- We recognise the very real challenges, and suggest that there should be more specific guidance and tools developed for health and social care teams to support anticipatory care planning. However, we have significant concerns about the templates included with this guidance, which we set out below
Section 7: Critical Care
- The first paragraph of Section 7.2 (page 13) refers to ‘the likelihood of critical care provision leading to survival with an acceptable quality of life.’ The assessment of quality of life is a subjective and potentially biased criterion, particularly for a person with a physical or mental disability, if made by others on a person’s behalf. The guidance must therefore explicitly state that such assessment is made by the patient or, where the patient cannot express a view, on the basis of an assessment of their wishes and feelings.
- In this context the aforementioned Covid 19 and the Rights of Disabled People statement makes it clear that in the case of disabled persons the chance of benefiting from treatment for Covid-19 or how they are treated must not be influenced by how their lives are valued by society, nor must the presence of existing health conditions or impairments that are unrelated to their chance of benefiting from treatment or that they might have significant levels of social care and support needs. In this regard, we would reiterate Part 1 (Section 2) above and Part 1 of the Comment of 6th April 2020 relating to the requirement to afford equal rights enjoyment to all persons whether or not they have a disability or related impairment.
- The second paragraph of Section 7.2 states that a CFS score of 5 or more provides ‘good evidence regarding the expected benefit’ but should actually (presumably) read ‘a lack of benefit’. Again, the limitations of the CFS for younger and disabled patients need to be emphasised.
Section 10: Ethical Considerations
Clinical teams have responsibility for decisions about their patients. It is therefore imperative that very clear and detailed ethical advice and support is timeously provided to aid decisions at all levels, including individual, group or population level, to cover all eventualities. However, as it stands, this section of the guidance is vague and appears to offer little advice or practical support. Nor does it reinforce the requirement to involve and hear the voice of the patient in what are fundamental decisions concerning their life, health and wellbeing.
This section should therefore be redeveloped aligning it more with the Ethical Guidance and taking into account those matters referred to in Part 1 above. Moreover, ethical guidance provided in both documents should, as stated in the Comment of 6th April 2020, give much clearer direction in terms of the relevant legal and human rights frameworks.
In this connection, we suggest that the Royal College of Physicians and Surgeons London Ethical dimensions of COVID-19 for front-line staff (2nd April 2020) might usefully be considered. In addition to the ethical guidance, this contains useful practical advice, including on how decisions should be made in a multi-disciplinary way, which could be drawn on here.
Appendix 2 – Anticipatory Care Planning Template:
- The Anticipatory Care Planning template does not, in our opinion, sufficiently reflect the essential legal and human rights requirements referred to in Part 1 above.
- Anticipatory Care Planning is an important means of ensuring that a person’s voice is heard, and their autonomy and agency respected, even at times when they are unable to express their wishes and feelings. Whilst we appreciate that there may be situations where it is not possible to fully respect a patient’s wishes, the legislative and human rights principles mentioned above dictate that there is a presumption in favour of such wishes and this requirement must be stated on the form. . Again, the role of supported decision-making is important here and the form should require that evidence be recorded of all efforts being made to ensure that genuine access to this has been provided.
- We are also concerned that the focus of the template form is very much on the refusal or withdrawal of treatment and related care, namely critical care and ventilators and DNACPR. The first information section for the clinician is particularly leading in suggesting that ‘you may wish to explore comfort options as a priority’. Whilst it is appreciated this may be a consideration and something that clinicians will have to discuss with patients, the form should provide different sections for both these issues and wider care and treatment issues – or, as we suggest below, the issue of critical care should be addressed in a bespoke document.
- The form refers to powers of attorney and welfare guardians but there is nowhere to record their views or how to contact them should they need to be consulted. In addition, the form must direct clinicians to satisfy themselves, and record on the form, that the attorney or guardian has the appropriate powers to make care and treatment, including critical care, decisions for the person.
- Where a decision not to deliver critical care is made then this must be appropriately recorded and whether this was because it was concluded it would not benefit the patient or because the patient has clearly indicated that they do not want it.
- We note that the form is drawn from a template produced by Healthcare Improvement Scotland. However, the HIS original also includes a page of guidance notes and links to other advice. As a minimum, the full document should be included here.
- However, we suggest that the basic approach might be reconsidered. In relation to most anticipatory care planning, it may be better to refer to the existing HIS guidance: including the document My Anticipatory Care Plan. Even if it is not practical to complete the entire document, this is a better basis for recording patients’ views and wishes.
- In reality, Appendix 2 appears to have been designed particularly to inform a conversation about whether people want, or should be given access to critical care and ventilators. If that is the specific issue, it may be better to develop a specific form and guidance for that purpose, as has been done previously with DNACPR guidance, and processes such as the ReSPECT form.
Appendix 3 Template Treatment Escalation and Limitation Plan
- The template refers to Guidance Notes which are vital but not included, and a ‘Page 2’ in respect of capacity, which is also missing. These need to be included, if this template is to be used. However, we have serious concerns about the template, and feel it should be withdrawn and a new version developed.
- The suggestion that the patient being a ‘nursing home resident’ or is dependant for ADLs. (presumably Activities of Daily Living) should determine access to treatment escalation are potentially discriminatory and must be removed.
- Again, as with the Advance Care Planning template, there is no explicit reference to the need to consider the patient’s views (whether capable or otherwise) and provide appropriate support for decision-making.
- The document is, in effect, a record of a decision, but with no documentation of the basis of that decision and, as we say above, a list of potentially discriminatory criteria. As the RCP guidance states, ‘To provide accountability across the pandemic, documentation of the decision-making process is very important. As far as possible, conclusions should be in writing, and the reasons for any decision should be clearly set out.’
We would suggest the following additional resources be referenced:
- Disability Rights UK statement (2020) Covid 19 and the rights of disabled people – statement supported by disabled people’s organisations and allies https://www.disabilityrightsuk.org/news/2020/april/covid-19-and-rights-disabled-people
- 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
- Mental Welfare Commission for Scotland (2011) The Right to Treat https://www.mwcscot.org.uk/sites/default/files/2019-06/Right%20to%20Treat.pdf
- WHO (2007) Ethical considerations in developing a public health response to pandemic influenza. who.int/csr/resources/publications/WHO_CDS_EPR_GIP_2007_2/en
8th April 2020
 Referred to on page 4 and Endnote 4 of the Ethical Guidance.
 Article 4(3) CRPD.
 Article 15 ECHR; Article 11 CRPD.
 Montgomery v Lanarkshire Health Board  UKSC 11.
 Article 8 ECHR; Article 12 CRPD; Montgomery v Lanarkshire (above).