This page includes resources relating to COVID-19 and the MCA 2005. It will be regularly updated (most recently on 15 May 2021), but if there is something on here you think should be, and isn’t, please email me at firstname.lastname@example.org. Note that the guidance here is primarily that relating to England. Welsh guidance can be found at the Welsh Government website here.
The key message is that the MCA 2005 is not, itself, changed by the current circumstances. Nothing in the Coronavirus Act 2020 (for instance) changes the obligations imposed under it. However, the Act is having to be applied in a different context, which will require all those involved to think creatively about how to secure its core principles, as well as to be clear (for instance) as to when a particular option is simply not available so that it does not fall for consideration as part of any best interests decision-making process.
I have discussed the legal framework of the restrictions (now called “Steps”) which came into effect on 29 March in England from the perspective of the MCA 2005 here, and the earlier “lockdown 3.0” regulations here. The second step was taken on 12 April 2021, with the third being anticipated for no earlier than 17 May. I have also summarised the regulations about face coverings on public transport in England here, and the regulations about face coverings in shops etc in England here, in both cases through the prism of the MCA. A detailed overview of the state of play in the early stages of the pandemic (much of which is still relevant) can be found in this article that was published in April 2020 in the International Journal of Law and Psychiatry on ‘Capacity in the Time of Coronavirus.’
The 39 Essex Chambers Court of Protection team has done a Rapid Response Guidance Note on COVID-19, Social Distancing and Mental Capacity (most recently updated in January 2021), available here. They have also done a Guidance Note on testing (most recently updated in January 2021), available here, and a Guidance Note on vaccination (most recently updated in February 2021) available here.
The National Mental Capacity Forum COVID-19 has held a series of rapid response webinars, recordings of which can be found here. A helpful overview of the health and public health law position in relation to COVID-19 in relation to each of England, Wales, Scotland and Northern Ireland has been produced by the Faculty of Public Health.
Note that this page does not include resources specifically relating to the Court of Protection and COVID-19, as there is a very useful resource page on Mental Health Law Online which is gathering these together.
[The DHSC has published (on 26 August 2020) a ‘portal’ with an overview of adult social care guidance on Coronavirus, which has links through to relevant guidance. The most relevant to those concerned with those with impaired decision-making capacity are addressed below].
The DHSC published emergency guidance on the MCA and DOLS during the COVID-19 pandemic, which is regularly updated (the most recent update being 27 April 2021). The guidance focuses on scenarios and potential deprivations of liberty that may arise in consequence of COVID-19, as well as the practical steps that can be taken (within the framework of the un-amended MCA 2005) in relation to the authorisation of deprivation of liberty. The guidance now also includes details of testing in relation to professionals visiting for purposes of carrying out DoLS assessments. Additional guidance was produced on 29 May 2020, and, again, is regularly updated, considering questions of vaccination, testing and the interaction between the MCA and public health powers. The DHSC also produced an easy read version of the guidance.
In the COVID-19: Action Plan for Adult Social Care published on 15 April 2020, the DHSC emphasised that:
COVID-19 presents particular challenges in supporting people to make their own decisions, and where necessary making decisions in their best interests, in the context of protecting the person’s own health and reducing the risk of infection to others. During the pandemic, the principles of the Mental Capacity Act and the safeguards provided by the Deprivation of Liberty Safeguards still apply. Decisions made under the Mental Capacity Act must be made in relation to that individual and cannot be made in relation to groups of people. When making decisions during the pandemic about the care and treatment of people who lack the relevant mental capacity, staff should seek consent on all aspects of care and treatment to which the person can consent. Professionals need to understand the application of mental capacity legislation in the context of COVID-19 (see our guidance).
More broadly, a document published on 19 March 2020, Responding to COVID-19: The Ethical Framework for Social Care, in essence, transplants the ethical framework developed for the healthcare response to pandemic flu to the social care context, by setting out a series of eight ethical values and principles which recognise that with:
increasing pressures and expected demand, it might become necessary to make challenging decisions on how to redirect resources where they are most needed and to prioritise individual care needs. This framework intends to serve as a guide for these types of decisions and reinforce that consideration of any potential harm that might be suffered, and the needs of all individuals, are always central to decision-making.
The guidance document includes (under the principle of respect) express reference to the MCA, requiring that:
where a person may lack capacity (as defined in the Mental Capacity Act), ensure that a person’s best interests and support needs are considered by those who are responsible or have relevant legal authority to decide on their behalf.
The DHSC, together with Public Health England, the CQC and NHS England issued guidance (most recently updated 1 April 2021) on Admission and Care of Residents during COVID-19. The guidance touches upon the MCA in the context of discharge from hospital (in the same terms as the NHS Guidance on Hospital Discharge set out below, but emphasising the need for proportionate assessments to enable timely discharge). It also makes clear that
Some residents of care homes, including those being admitted from hospitals and the community, may lack the relevant mental capacity needed to make decisions about arrangements for their own care and treatment. For example, some people with dementia and learning disabilities may lack the relevant capacity to make these decisions, and will fall under the empowering framework of the Mental Capacity Act 2005 (MCA) and are protected by its safeguards, including the Deprivation of Liberty Safeguards (DoLS).
Duties and powers under the MCA still apply during this period. If care home staff think the person may lack the relevant mental capacity to make the decisions about their ongoing care and treatment, a capacity assessment should be carried out before a decision about their discharge from hospital and admission to a care home, is made. During the emergency period, professionals may want to consider a proportionate approach to such assessments to enable timely discharge.
If a resident does not have relevant mental capacity, for example, to make necessary decisions (including care, treatment and residence decisions), staff will need to consider the legal, decision-making framework offered by the MCA. DHSC has issued guidance on the use of the MCA and DoLS during this emergency period. The Social Care Institute of Excellence (SCIE) provides guidance on implementing the Mental Capacity Act specifically to support care homes in undertaking this. It covers involving residents in the process, best interests decisions, reviews, DoLS and includes a useful checklist for monitoring MCA implementation.
Care home staff will need to consider the MCA and this guidance, when making decisions for people who lack the relevant mental capacity to make them. This includes residents who cannot make their own decision about testing.
If a person lacks capacity to provide consent to be tested for COVID-19, the decision maker should where necessary make a ‘best interests decision’ under the MCA. When doing so, they must consider all the relevant circumstances and should make a record of their decision. This must be undertaken in relation to the individual and should never be determined in relation to groups of people. Additional time may be required to make the best interests decision in these situations.
The guidance does not, however, address how isolation is to be implemented in the case of a person who lacks the capacity to make the relevant decisions (for more on this, see the 39 Essex Chambers Rapid Response Guidance Note here).
The DHSC published guidance on discharge to ‘designated settings’ on 16 December 2020 (most recently updated 1 April 2021) i.e. for people leaving hospital who have tested positive for COVID-19 and are transferring to a care home (this includes working age adults who reside in a care home). This guidance addresses those with impaired decision-making capacity at paras 4.22-4.25. In reality, the best interests process described therein will usually be, if not an empty, then a very short process because there will be little or no choice to be made for the person as to where they go if they are being discharged to a designated setting. It will therefore be necessary to keep the position under careful review as to where they then go upon departure from this setting, in particular to minimise the number of moves that they may make. There may be a limited number of situations where being discharged into a designated setting may not be appropriate based on their individual needs; they will therefore be exempt from this process. The guidance notes (at para 4.26) that upon the person having been at the designated facility for the requisite length of time they can go to their usual or new residence without the need for a further test or further isolation.
The DHSC published updated guidance on 4 March 2021 relating to visiting policies for care homes in England,’ most recently updated on 14 May 2021. I discuss it in more detail here, along with the summary of the guidance that has been produced for visitors. Note that the relevant regulations provide as an exception to the rules relating to gathering visiting both a dying person and a person receiving treatment in a hospital or staying in a hospice or care home (in other words, it is not against the law – a point also reinforced by this judgment given by the Vice-President of the Court of Protection on 1 December 2020 (relating to earlier regulations, but to similar effect).
The DHSC published on 1 December 2020 guidance (most recently updated 14 May 2021) on visits out of care homes for those of working age, discussed here. The DHSC published (on 6 August 2020 and most recently updated on 27 April 2021) guidance relating to supported living services. The guidance addresses the MCA in a number of points, including in relation to isolation, discharge, testing and visiting.
NHS England and NHS Improvement
The NHS’s COVID-19 Hospital Discharge Service Requirements were updated on 21 August 2020, fully updating the document published on 19 March (a further update on 2 February 2021 did not make major further changes). At page 13, it addresses the MCA as follows:
• Duties under the Mental Capacity Act 2005 still apply during this period. DHSC has published emergency guidance for health and social care staff in England and Wales who are caring for or treating a person who lacks the relevant mental capacity during the COVID-19 pandemic.
• If there is a reason to believe a person may lack the relevant mental capacity to make the decisions about their ongoing care and treatment, a capacity assessment should be carried out before decision about their discharge is made. Where the person is assessed to lack the relevant mental capacity and a decision needs to be made, then there should be a best interest decision made for their ongoing care in line with the usual processes. If the proposed arrangements amount to a deprivation of liberty, Deprivation of Liberty Safeguards in care homes and orders from the Court of Protection for community arrangements still apply. Further information can be found within DHSC’s guidance on this specific area.
It is also relevant to note in this context that:
- Paragraph 3.13 of the 21 August guidance makes clear that “DHSC/PHE policy is that people being discharged from hospital to care homes are tested for COVID-19 in a timely manner ahead of being discharged (as set out in the Coronavirus: adult social care action plan), regardless of whether they were residents of the care home previously or not. Where a test result is still awaited, the person will be discharged if the care home states that it is able to safely isolate the patient as outlined in Admission and Care of Residents in a Care Home guidance. If this is not possible then alternative accommodation and care for the remainder of the Hospital Discharge Service Policy and Operating Model required isolation period needs to be provided by the local authority, funded by the discharge funding.”
- From 19 March to 31 August 2020 the government, via the NHS, paid for new or extensions of existing packages of care and support for patients discharged from hospital or who would otherwise have been admitted to hospital. This funding will not be available to fund any new packages of support on discharge from hospital from 1 September 2020 onwards.
- From 1 September 2020, social care needs assessments and NHS Continuing Healthcare (CHC) assessments of eligibility recommenced in England (see also the dedicated guidance on this here). This emphasises the importance of communication, including the use of the Accessible Information Standard, and also that “[w]here care has been NHS-funded during the COVID-19 period (since 19 March 2020) particular focus should be on explaining how the local authority Care Act Assessment and subsequent means testing could lead to some individuals having to contribute to, or fully fund their future care should they be identified as not eligible for NHS CHC funding.”
- Government has agreed to provide additional funding, via the NHS, alongside existing use of local authority and Clinical Commissioning Group (CCG) budgets to help cover the cost of post-discharge recovery and support services in addition to what was provided prior to admission, for up to a maximum of six weeks following discharge from hospital or any “Pathway 2” facility (i.e. 24-hour bed-based setting. This funding will apply to all those needing support for the first time). During that period, an assessment of the individual’s longer-term care needs, including Care Act and NHS CHC assessments, should be undertaken. The expectation from the reintroduction of NHS CHC guidance is that the assessment process will be complete within the 6 week period, and CCGs will not be able to draw down from the discharge support funding after the end of the 6th week to fund any care package beyond this date.
- The discharge guidance (and the additional funding noted above) does not apply to those in mental health inpatient settings.
NHS England published on 24 March 2020, updated November 2020, a Clinical Guide for front line staff to support the management of patients with a learning disability, autism or both during the coronavirus pandemic – relevant to all clinical specialities. It recognises that:
As a clinician working in other fields you may have had limited clinical contact with people with a learning disability or people with autism, however in 2018/19 at least 41% of people with a learning disability who died, died as a result of a respiratory condition. There is therefore, strong reason to suspect that people with a learning disability may be significantly impacted by the coronavirus pandemic.
NHS England published on 25 March 2020 guidance (updated 17 November 2020) on managing capacity and demand within inpatient and community mental health services for all ages. It does not specifically address mental capacity, but reinforces the key message that:
People with mental health needs, a learning disability or autism should receive the same degree of protection and support with managing receive the same degree of protection and support with managing COVID-19 as other members of the population. This may mean providing additional support, including making reasonable adjustments.
NHS England published on 27 March 2020, most recently updated 26 January 2021, legal guidance concerning the impact of COVID-19 on the use of the Mental Health Act and supporting systems to safeguard the legal rights of people receiving mental health, learning disabilities and specialised commissioned mental health services. It includes very detailed guidance (in Annex F) about the different legal frameworks that might be in play in the context of testing and isolation in inpatient settings. Amongst other important points (and of wider application), it notes that:
The relevant information, which the patient will need to understand, retain, or use or weigh in order to be considered to have capacity (or ‘competence’ in the case of children aged under 16), should include the reasons for the isolation or testing, process (such as what isolation or testing will entail), and the consequences of consenting or not consenting. Ascertaining if the individual has the relevant mental capacity or competence should not be onerous and the person will only need to understand the salient information. The patient may have the capacity or competence to consent, even though they may be unable to make decisions in respect of other aspects of their care and treatment.
At least in the in-patient setting:
If the person lacks the relevant capacity or competence, swabbing or other forms of invasive testing should only occur if in their best interests. In assessing the best interests of the patient, clinicians should pay close attention to the risks of attempting to swab someone who is not compliant. As in the case of those with capacity, these risks include traumatising or physically injuring the patient, as well as the difficulty of obtaining an accurate sample without compliance. In light of these risks, it is unlikely that enforced testing will be in the best interests of a potentially infectious, non-compliant patient, though it depends on their particular circumstances.
NHS England published on 13 October 2020 (most recently updated 23 March 2021) guidance on Visiting healthcare inpatient settings during the COVID-19 pandemic: principles. It does not expressly address mental capacity matters, but emphasises the importance of visiting – especially for those who are dying, as well as setting out (in Appendix B) approaches to virtual visits and (in Appendix D) practical advice and support for visits.
The CQC suspended (on 16 March 2020) routine inspections, except in a very small number of cases where there is concern about harm, stating that it:
encourage[s] everyone to act in the best interests of the health of the people they serve, with the top priority the protection of life. We encourage you to use your discretion and act in the best way you see fit (emphasis in original)
Details of how the CQC will be operating at present can be found here, including the operation of the Emergency Support Framework. Its plans from 1 April 2021 including an expansion of its inspections, can be be found here. The CQC set out in May 2020 how it will be monitoring DoLS and published a specific page about ‘working within the Mental Capacity Act during the Coronavirus pandemic,’ which notes under ‘Issues that should be considered when thinking about care and treatment which might involve restrictions because of coronavirus’:
Imposing social distancing, restrictions on movement, or isolation in response to coronavirus (for example confining a person to a room) may not in itself amount to a deprivation of liberty.
Before deciding whether to apply for an authorisation of deprivation via the DoLS process (if the person is in a care home/hospital) or Court of Protection (if the person is in a community setting, for example, supported living), providers should consider the acid test in the usual way: ‘is the person subject to continuous supervision and control?’ and ‘Is the person free to leave?’
Care and treatment may often be given to a person who lacks capacity to consent to it in their best interests without causing a deprivation of liberty – we do not advocate the use of sedative medicines or physical restraint to deprive people of their liberty. Providers should avoid depriving someone of their liberty unless it is absolutely necessary and proportionate, both because of the likelihood of harm and to the seriousness of that harm to the person. Decisions about mental capacity and DoLS must be taken specifically for that person and not for groups of people. Providers should continue to refer also to the codes of practice.
The CQC has provided further guidance (9 July 2020) about the inappropriate use of sedatives to enforce social distancing guidelines: emphasising that:
You must make sure that people’s behaviour is not controlled by excessive or inappropriate use of medicines. See S4.5 of our key lines of enquiry for adult social care:
S4.5 How does the service make sure that people’s behaviour is not controlled by excessive or inappropriate use of medicines?
You must act in a way that is proportionate, pragmatic, safe, and focused on the best interests of individuals and the wider system. We do not advocate the use of sedative medicines or physical restraint to deprive people of their liberty. Instead, we encourage providers to look at alternative methods to minimise the need for any form of restraint. Any decisions should be carefully considered by a multidisciplinary team and documented appropriately.
In its 3rd “Covid Insight” published on 15 July 2020, CQC had a specific section about the impact of COVID-19 on DoLS, noting that, “since the start of lockdown, we have seen notifications from adult social care services drop by almost a third (31%), and in hospitals by almost two-thirds (65%).” It noted that:
There is an additional challenge for providers in balancing introducing restrictions to keep people safe from COVID-19, with ensuring that they are applying the least restrictive principle in line with the Mental Capacity Act. Some providers are actively mitigating the impact of COVID-19 restrictions, aware that some people with complex conditions, such as dementia, are particularly at risk of isolation. This includes, for example:
- buying screens and encouraging people who use services to video call their families
- introducing “relay walks”, where services stagger access to communal areas of the home – the aim being to encourage mobility and allow people to spend more time outside of their room.
The CQC has published (14 August 2020) an important set of expectations for access to hospital care and treatment for older and disabled people living in care homes and in the community during the pandemic.
The CQC’s 4th Covid Insight, published on 16 September 2020, reported on a special programme of infection prevention and control visits carried out in 300 care homes selected as examples of where this was being done well. The CQC noted that in those care homes there was “some evidence to suggest services had considered the Mental Capacity Act, Deprivation of Liberty Safeguards and best interest decisions around COVID-19 and isolation for those who lacked capacity.“
Office of the Public Guardian
The OPG has a page relating to its approach to Coronavirus, and has published guidance as to how NHS staff and local authorities can rapidly obtain details of its register of LPAs, EPAs and deputies. It has also published guidance for attorneys and deputies as to their roles and responsibilities at present, and guidance as to making and registering LPAs during the outbreak, including detailed guidance about witnessing.
The Social Care Institute for Excellence produces regularly updated guidance on the MCA and COVID-19, and a very useful guide to best interests decision-making during COVID-19z It has a comprehensive suite of resources on COVID-19 and social care, here.
On 27 July 2020, NICE published NG179, “COVID-19 rapid guideline: arranging planned care in hospitals and diagnostic services” which makes – brief – mention of the need when offering planned care in hospitals and diagnostic services in the context of COVID-19 to make reasonable adjustments to ensure information is accessible to all people (for example, those with a language barrier or learning disability). For further advice on supporting people to make their own decisions, see NICE’s guideline on decision making and mental capacity.
The Association of Directors of Adult Social Services published in September 2020 an advice note: Cohorting, Zoning and Isolation Practice – Commissioning for Resilient Care Home Provision. It is cross-referred to in the DHSC’s Winter Plan document. The ADASS advice note notes that “issues around mental capacity and Deprivation of Liberty Safeguards (DoLS) are an important consideration, but not covered in this document,” directing readers back to the DHSC’s emergency guidance.
ADASS published an advice note on Infection Control, Essential Visiting and Human Rights in Care Homes (2 November 2020), helpfully summarising the decision-making structure around visiting, including in relation to those with impaired decision-making capacity and emphasising that “blanket restrictions leave providers and councils open to legal challenge (whether local or through care home chains) and, even in situations where the local COVID restrictions are at the highest level, there must always be consideration for personal and exceptional circumstances so as to comply with PSED and Human Rights requirements.”
Supporting the person
A practical resource to support explanation of the situation for those for whom pictorial communication aids are useful is this free e-book produced by the charity Books Beyond Words, which has also produced a range of other books of relevance available here.
Voiceability have made accessible their resources for advocacy, including as to how best to conduct advocacy from a distance, visits to care settings, and planning ahead.
Learning Disability England has a Coronavirus Hub, entitled Keeping Informed and Staying in Touch during Coronavirus, including a video, together with further resources.
The Challenging Behaviour Foundation has resources, including a useful resource for families. They have also published extremely useful sets of answers from their legal panel to frequently asked questions that have been posed since the outbreak of the pandemic, which can be found here.
Creative plans to support contact between a resident in a care home and their family were endorsed by the Court of Protection in this case (the judge also emphasising the need for such steps to be taken to offset the impact of the necessary restrictions imposed upon visitors). A practical step in some situations may be to take effective measures to disinfect an iPad or equivalent so that the family can send one into their relative: for disinfection control measures see here).
Lorraine Currie has a written a very powerful blog about supporting her adult daughter (who has an acquired brain injury) to walk through the COVID-19 landscape.
Remote capacity assessment
In circumstances where face-to-face assessment is not possible, it may still be possible to carry out an assessment remotely by a method such as Skype or Zoom. The Court of Protection has confirmed that remote capacity assessment is acceptable for purposes of DoLS, as has the DHSC in its emergency guidance referred to above.
Lorraine Currie, the MCA/DoLS lead at Shopshire, has produced this extremely useful guide to conducting remote assessments from a local authority perspective (but equally useful for other professionals). Lorraine and I, along with Chelle Farnan, did a webinar for the National Mental Capacity Forum on remote capacity assessment which can be found here.
This guidance from TSF Consultants gives some practical tips about ‘virtual’ capacity assessment. [Please note that particular care will need to be exercised when deciding whether the person has capacity to consent to being recorded].
Mental health units
The National Association of Psychiatric Intensive Care and Low Secure Units (NAPICU) has issued guidance (being updated on a regular basis) on managing acute disturbance in the context of COVID-19, including reference to the MCA at paragraphs 4.17-4.20, suggesting the prioritisation of public health measures over the MCA where measures are taken for the protection of others.
Public health and capacity
Norfolk Safeguarding Adults Board has produced a very practical document: ‘Guidance for professionals when a person is not following the guidelines on social distancing or self-isolating (Covid-19),’ including consideration of the position where the person has or lacks capacity, and complete with a useful flowchart to assist decision-making.
The DHSC Emergency MCA/DoLS guidance addresses testing. A useful video showing what a swab test is and how one is done can be found here. A webinar here also discusses good practice relating to testing for those with impaired decision-making capacity.
The NHS Novel coronavirus (COVID-19) standard operating procedure: COVID-19 local vaccination services deployment in community settings, addresses capacity and consent, including an Appendix (D) giving guidance for care home residents and staff on capacity and consent which also applies (via Appendix F) to those being administered the vaccine in their own home. It makes clear that:
These legal requirements will be familiar to everyone involved in the care and treatment of these people, as they will be used to considering them for other, similar decisions, including a decision to test a person for COVID-19, or administer the flu vaccine to help protect them from illness over the winter. The principles of best interests decision making under the MCA are the same for the COVID-19 vaccination.
Useful materials to help in the process of communicating information to the person include:
- A guide to vaccinations for COVID-19 | British Society for Immunology: not an ‘easy read’ guide, but a clear source of information about vaccination;
- The PHE/NHS Easy Read Guide to your COVID-19 Vaccination;
- The “wordless story” Having a Vaccine for Coronavirus from Books Beyond Words;
- The collection of materials for those working with people with learning disabilities gathered by Oxford Health NHS Foundation Trust.
Advance care planning
Advance care planning is of importance at all times (see the NICE Guidance here), but will be of particular importance in relation to those who are at particular risk of catching COVID-19, so that it is clear what they would, and would not, wish in terms of medical intervention, including admission to ICU and the treatments available on ICU. This may not guarantee access to such intervention, but is going to be of very considerable importance in terms of assisting medical decision-making, as well as securing, insofar as possible, the right outcome for the individual at a point when they may have lost decision-making capacity.
The CQC published on 18 March 2021 Protect, respect, connect – decisions about living and dying well during COVID-19, a hard-hitting report looking at DNACPR decision-making during the first year of the pandemic, and making a number of recommendations, the first (rightly) being:
DNACPR decisions need to be recognised as part of wider conversations about advance care planning and end of life care, and these decisions need to be made in a safe way that protects people’s human rights
However, advance care planning must be done correctly. My video (March 2021) seeks to outline how this can be done.
Guidance on DNACPR decision-making was published for patients and families by the NHS on 10 March 2021.
A joint statement by the BMA, Care Provider Alliance, CQC and the Royal College of GPs on advance care planning (31 March 2020) can be found here. It emphasises the importance of involving the person where they have the capacity to participate, and of involving family members or other appropriate individuals where they do not. This is a critical point, and has been reinforced by letters from the National Director for Mental Health, NHSE-I, the National Clinical Director – Learning Disability and Autism NHSE-I and the Medical Director for Primary Care, NHSE-I (3 April 2020) and the Chief Nursing Officer for England NHSE-I and Chief Medical Officer NHSE-I (7 April 2020), the latter also emphasising that:
‘do not attempt cardiopulmonary resuscitation’ (DNACPR) orders […] should only ever be made on an individual basis and in consultation with the individual or their family.” (see also in this the case of Winspear)
This was also reinforced in the Adult Social Care action plan (15 April 2020) set out above,
It is unacceptable for advance care plans, including Do Not Attempt Resuscitation orders, to be applied in a blanket fashion to any group of people, and the CQC have been urgently contacting providers where this practice has been brought to their attention. Everyone at risk of losing mental capacity or nearing the end of their life should be offered the opportunity and supported, if they wish, to develop advance care planning that make their wishes clear, and to make arrangements, such as lasting power of attorney for health and social care decisions, to put their affairs in order. This must always be a personalised process.
In a Joint statement on personalised approaches to care and treatment (20 May 2020), Baroness Jane Campbell and James Sanderson, Director of Personalised Care for the NHS stressed that:
The outbreak of coronavirus does not change long-established best practice that decisions around care and access to treatment, including end of life care, are made on an individual basis and with clinicians, following the principles of personalised care.
Every individual should be provided with ongoing opportunities to participate in decisions that affect them. In relation to treatment decisions, patients should be supported to make informed decisions by the provision of clear advice on options from their clinicians, with family support or advocacy support if required and possible, and in compliance with the provisions of the Mental Capacity Act 2005 and related guidance where relevant.
This means people making active and informed judgements about their own care and treatment, at all stages of their life, and recognises people’s autonomy, as well as their preferences, aspirations, needs and abilities. This also means ensuring reasonable adjustments are supported where necessary and reinforces that the blanket application of do not attempt resuscitation orders is totally unacceptable and must not happen.
The importance of good practice in Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) and people with a learning disability and or autism was emphasised in the letter from the NHS National Medical Director and others dated 4 March 2021, including this key message:
The NHS is clear that people should not have a DNACPR on their record just because they have a learning disability, autism or both. This is unacceptable. The terms “learning disability” and “Down’s syndrome” should never be a reason for issuing a DNACPR order or be used to describe the underlying, or only, cause of death. Learning disabilities are not fatal conditions. Every person has individual needs and preferences which must be taken account of and they should always get good standards and quality of care.
The CQC published (14 August 2020) an important set of expectations for access to hospital care and treatment for older and disabled people living in care homes and in the community during the pandemic, including that a person, or their representatives, should be be involved in DNAR or advanced care plan decisions before a recommendation is made by any clinician, whether in general practice or in a hospital.
The DHSC’s Winter Plan for Adult Social Care, published on 18 September 2020, includes the following directed at NHS organisations and local authorities, making clear that they should:
- ensure that discussions and decisions on advanced care planning, including end of life, should take place between the individual (and those people who are important to them where appropriate) and the multi-professional care team supporting them. Where a person lacks the capacity to make treatment decisions, a care plan should be developed following where applicable the best interest check-list under the Mental Capacity Act
- implement relevant guidance and circulate, promote and summarise guidance to the relevant providers. This should draw on the wide range of resources that have been made available to the social care sector by key health and care system partners and organisations including those on the NHS website and those published by the Royal Colleges of GPs
Where implemented, the ReSPECT process will be of importance (and is also of importance because it can be used even where a person does not currently have capacity).
Baroness Finlay has written a guide for family members who are looking after a person who is dying at home with COVID-19, which may be of relevance, especially in circumstances where community palliative care teams are likely to be very stretched. As she makes clear, it is to be used only “where it is absolutely clear and recorded in the person’s clinical record that he or she does not wish to be transferred to a hospital.”
More broadly, the National Centre for Post-Qualifying Social Work and Professional Practice has produced useful guidance on advance care planning which can be found here.
International human rights bodies
The wider international human rights community is producing a considerable body of guidance about the protection of the rights of people with disabilities in the pandemic. This is very helpfully summarised by Dr Oliver Lewis here.
I am doing a rolling series of short ‘webinars’ about key aspects of the MCA, including capacity, best interests, deprivation of liberty, and the Court of Protection: they are all available here.
Lucy Series’ website, The Small Places, is always a mine of information and resources relating to the MCA 2005. and she has – and will no doubt continue – to write about the MCA and COVID-19.
The wonderful Social Work, Cats and Rocket Science team have also written about Social Work, COVID-19 and Remaining Human.
An online training tool for capacity and best interests assessment developed by a passionate, and very knowledgeable MCA champion, Melba Gomes, can be found here (full disclosure, I am one of the talking heads on it).
Inclusion London has created a very helpful set of tools for deaf and disabled person’s organisations providing advice to individuals on rights, entitlements and sources of support.
For those who want an accessible guide to human rights, which are – ultimately – what frames both the obligations upon professionals and the limitations up their actions, I strongly recommend the British Institute of Human Rights’ Know Your Human Rights website.