4Health and Care
The Right to Life, and the Right to Health
64.An obligation on the State to secure the right to life is imposed by Article 2 ECHR. It has two aspects: the substantive obligation to take appropriate steps to safeguard the lives of those within the state’s jurisdiction;62 and the procedural obligation to carry out an effective investigation into alleged breaches of the substantive obligation. It is primarily the substantive obligation that we are concerned with in this chapter. The procedural requirements are considered in chapter 9 below.
65.Although the right to health is not, as such, among the rights guaranteed under the ECHR, the European Court of Human Rights (ECtHR) at Strasbourg has (partially) incorporated it within the positive obligation to secure the right to life.63 The ECtHR has made clear that, in general, “the allocation of public funds in the area of health care is not a matter on which [it] should take a stand.”64 It has rather emphasised that the primary obligation is the duty to provide an effective framework. However, it has identified that in two “very exceptional circumstances,”65 the responsibility of the State under the substantive limb of Article 2 of the Convention may be engaged in respect of the acts and omissions of a health-care provider:
- where an individual patient’s life is knowingly put in danger by denial of access to life-saving emergency treatment ;66 and
- where a systemic or structural dysfunction in hospital services results in a patient being deprived of access to life-saving emergency treatment and the authorities knew about or ought to have known about that risk and failed to undertake the necessary measures to prevent that risk from materialising, thus putting the patients’ lives, including the life of the particular patient concerned, in danger.
Other human rights instruments
66.The right to life is also protected by Article 6 of the UN International Covenant and Civil Political Rights; in the context of those with disabilities, Article 10 of the UN Convention on the Rights of Persons with Disabilities; and, in relation to children, Article 6 of the UN Convention on the Rights of Children.
67.The right to health appears also in different forms in international conventions that the United Kingdom has ratified, including Article 12 of the International Convention on Economic and Social Rights,67 Article 12 of the UN Convention on the Elimination of Discrimination Against Women (which stipulates the right to health care of women); Article 24 of the UN Convention on the Rights of the Child, and Article 5(e)(iv) of the Convention on the Elimination of Racial Discrimination.
Personal Protective Equipment (PPE) and protection for workers
68.Whilst the State is not under a duty to take steps which would pose an impossible or disproportionate burden, it is under a duty to take appropriate steps to protect life where there is a known risk to life (or the risk at least ought to be known). In the context of the Covid-19 pandemic it is arguable that this duty included prioritising the provision of available PPE to healthcare staff, other frontline workers, and persons most vulnerable to the virus such as those in care homes, older people, or those with specified underlying health conditions.
69.It is also arguable that when it became clear that black, Asian and minority ethnic communities were suffering disproportionately from the effects of Covid-19, the right to life (Article 2 ECHR) read together with the right to non-discrimination in the enjoyment of the substantive ECHR rights (Article 14 ECHR) should have required the prioritisation of the allocation of PPE to (for instance) BAME doctors and nurses. We have received evidence that in some cases the reverse has in fact been the case.68
70.Particularly at the outset of the pandemic there were widespread reports of shortages of PPE for healthcare workers.69 Care homes and other social care settings also reported lacking the necessary equipment. In late March, one Shared Lives scheme manager reported that, “[w]e haven’t even had a first delivery yet. [ … ] this has now been escalated to the complex case team as apparently they have no record of our service on their delivery list.”70 Individual disabled people who use personalised independence payments (PIP) to employ personal assistants have also struggled to access PPE, as they were not recognised as needing it.71
71.Whether or not the failure to provide adequate PPE to all those who needed it during the early stages of the pandemic was so serious as to constitute a breach of Article 2 ECHR might be a matter for the inquiry that is required to meet the Government’s procedural obligations under Article 2 ECHR (see Chapter 9 below). What is clear at this stage, is that very difficult decisions had to be made about who should be prioritised to receive PPE and that many who required equipment did not receive it in a timely manner.
72.In order to prepare for further waves of Covid-19 or future pandemics, the Government must take steps to ensure that the allocation and prioritisation decisions and policies relating to the provision of PPE are evidence-based and non-discriminatory.
Advance care planning and Do Not Attempt Cardio-Pulmonary Resuscitation Notices
73.DNACPR (Do not attempt cardiopulmonary resuscitation) notices record recommendations by professionals that, if a person goes into cardiac arrest, CPR should not be attempted as it would either be futile, or it would not be in the best interests of the person concerned. The use of DNACPR notices engages Articles 2 (right to life) and 8 (right to private life) both in isolation and together with Article 14 (the right to non-discrimination in the enjoyment of substantive ECHR rights). Article 8 includes respect for personal autonomy, which encompasses the right to make decisions about medical treatment, as well as to have involvement in decisions made by others about that treatment. The ECHR requires that a patient-specific decision must be made and that there is always a presumption in favour of patient involvement. Further, decisions must be made in accordance with a clear and accessible policy in order to comply with Article 8(2).72 Where a patient does not have capacity to participate in discussions about DNACPR, consultation must take place with those interested in their welfare if practicable and appropriate to do so.73
74.We have received deeply troubling evidence from numerous sources that during the Covid-19 pandemic DNACPR notices have been applied in a blanket fashion to some categories of person by some care providers, without any involvement of the individuals or their families.74 It is discriminatory and contrary to both the ECHR and the Equality Act 2010 to apply DNACPR notices in a blanket manner to groups on the basis of a particular type of impairment, such as a learning disability; or on the grounds of age alone. There have been longstanding concerns about the discriminatory application of DNACPR notices to older and disabled people75 and the way that they have been administered in some instances. The Covid-19 pandemic has brought these concerns sharply into focus.76
75.We note the statement made by the Department for Health and Social Care (DHSC) on 15 April 2020 which states that “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.”77 Whilst this statement was welcome, it does not, in our view, go far enough in ensuring that blanket DNACPR notices are not used. We also note that the Secretary of State for Health and Social Care has said that he will publish two documents on the NHS website to ensure patients and families understand how DNACPR decisions are made in light of the current coronavirus pandemic.78 We understand that one document will be for patients and their families setting out matters such as right to be involved in the decision and how to request a review, the other for all NHS staff. Again, this is very welcome, but without sight of these documents, and in particular the document for NHS staff, it is not possible to say whether these go far enough to allay our concerns.
76.The blanket imposition of DNACPR notices without proper patient involvement is unlawful. The evidence suggests that the use of them in the context of the Covid-19 pandemic has been widespread. The Court of Appeal has previously held that there is no legal requirement for the Government to implement a national DNACPR policy. However, the evidence suggests that the absence of such a policy has, in the context of the pandemic, led to systematic violation of the rights of patients under Articles 2 and 8 ECHR. The systematic nature of this violation means that it is now arguable that the Government is under such an obligation. Whether or not the events of the pandemic have changed the nature of the Government’s legal obligation, we consider it would assist in the protection of patients’ Article 2 and 8 rights if the Government did now set out such a policy. Such a policy should make clear, amongst other things, that DNACPR notices must never be imposed in a blanket fashion by care providers; the individuals must always be involved in the decision-making process, or where the individual does not have capacity, consultation must take place with persons with an interest in the welfare of the patient. It is not clear whether the documents promised by the Secretary of State will meet these requirements.
Healthcare decision-making
77.In the course of the Covid-19 pandemic difficult decisions have had to be made regarding the prioritisation of healthcare resources to avoid services being overwhelmed. Such decisions have included, for example, converting hospital beds to ICU beds and discharging other patients to create space for Covid-19 patients, and the suspension of elective procedures. Some of these decisions have been governed by national policies, and others have been made at the level of Trusts and local NHS bodies.
78.Decisions relating to the provision of health care engage the responsibility of the State under Article 2 in certain circumstances. We do not believe there to be Strasbourg case-law that specifically addresses the question of what Article 2 requires in the context of a public health emergency which overwhelms the resources of the State. However, given the approach taken by Strasbourg more generally in relation to healthcare provision (see para 65), it seems unlikely that it would find that that the mere fact that the State79 is unable to meet the particular demands of the pandemic will give rise to a breach of Article 2.80 However, Article 2 and Article 14 (the right not to be discriminated against in the enjoyment of substantive ECHR rights) together will be engaged in the question of how decisions about provision are made and that the State would need to be able to demonstrate that these were taken in a rational and non-discriminatory way.
79.There is a significant body of evidence about the serious and life-shortening health inequalities faced by disabled people and those with learning disabilities in particular.81 It is against this backdrop that disabled people and their families have expressed alarm and distress about the potential for clinical decision-making in the context of the Covid-19 pandemic to discriminate against them.82
80.These concerns were apparently borne out by guidance issued by the National Institute for Clinical Excellence (NICE) about critical care for adults with Covid-19, published on 20 March 2020. The guidance recommended that all adults should be assessed for frailty on admission to hospital using the Clinical Frailty Scale (CFS). Organisations representing disabled people quickly sounded the alarm that use of the CFS was not appropriate for those with learning disabilities and other neuro-developmental conditions such as autism and could result in them being denied treatment.83 In response, NICE amended the guidance to clarify when and how to use the CFS as part of a holistic assessment, issuing updated guidance on 31 March 2020. NHS England also wrote to health providers highlighting this change to the guidance and emphasising that clinical decisions should be made on an individual basis.
81.Older people’s organisations underline in their evidence that unjustified discrimination on the basis of age is unlawful and unacceptable. Independent Age drew our attention to a critical care decision support tool, which was reportedly circulated in April 2020 to healthcare professionals for use in Covid-cases, which placed undue emphasis on age in decision making.84 It is unclear what status this document had (although we do not understand it to have been an official NHS document), or how widely it was circulated. Furthermore, Age UK told us:
“While there is a well understood relationship between advancing age, frailty, and comorbidity, which reduces the chance of surviving intensive medical intervention, age alone should never be a criterion for medical triage.”85
82.Decisions about how to prioritise resources have not just impacted upon those with Covid-19, but also upon those with serious clinical needs who do not have Covid-19.86 The number of people in England starting treatment for cancer following urgent GP referral for suspected cancer dropped to 8,564 in May 2020; 5,000 fewer than would normally be expected, representing a drop of 38%.87 Macmillan Cancer Support told us that:
“[It] accepts it may have been appropriate to delay or alter normal treatment protocols [for people with cancer]. However, these decisions should be agreed on an individual basis and determined by clinical and practical considerations about the risks and benefits of treatment for each patient and not through blanket suspensions due to concerns about system capacity.”88
83.We are concerned that decision-making relating to admission to hospital, in particular critical care, for adults with Covid-19 has discriminated against older and disabled people. We are also concerned that decisions made to support the capacity of the NHS to provide care for patients with Covid-19 have been made without adequate consideration of the impact on particular groups of others whose treatments have been cancelled or postponed in consequence. The Government must ensure both that clear national and local policies are in place to govern prioritisation of healthcare provision during a pandemic, and that those policies do not discriminate unlawfully.
Changes to social care legislation in the Coronavirus Act 2020
Care Act 2014
84.The Coronavirus Act 2020 introduced what the Government described as ‘easements’ to the governing legislation relating to social care provision.89 These powers came into force shortly after the CA 2020 was passed and permit local authorities in England to suspend specific duties under the Care Act 2014. The CA 2020 also suspended with immediate effect the duty on the NHS in England to carry out assessments of whether a person is in need of continuing healthcare.90
85.Guidance provided that, in order to take advantage of the easements, local authorities had to be facing resource constraints such that they could no longer comply with their duties under the Care Act, the likely result of which would potentially risk life. The Guidance also made clear that it was possible to exercise the easements in the Care Act in different ways, only the highest level allowing a suspension of the duty to meet unmet needs.
86.Importantly, the CA 2020 expressly required local authorities–even under the highest level of easement–to continue to meet the needs of individuals where required in order to avoid a breach of their rights under the ECHR. However, many contributors to this inquiry have told us that they have reservations about whether frontline local authority staff have the requisite knowledge to assess when this threshold has been crossed.91 In a survey carried out by the British Institute of Human Rights among those working in health and care, 76% of respondents said that during Covid-19 they were not provided with legal training or clear information about upholding human rights law.92
87.These easements have not to date been widely triggered by local authorities, and we understand that no local authorities formally reported that they were operating at the highest level of easement.93 Despite this, we have received evidence that local social care provision has significantly reduced, including in areas where the easement provisions have not been used.94 In research conducted by the British Institute of Human Rights 68% of respondents said that their care and support (or that of their loved one) had got worse during Covid-19.95 This has implications for human rights including the right to life (Article 2 ECHR), the right to respect for private and family life (Article 8 ECHR) and the right to freedom from inhuman and degrading treatment (Article 3 ECHR).
88.The Local Government and Social Care Ombudsman (LGSCO) has now resumed its work and has begun to receive complaints about services provided during the pandemic.96 Its assessment as to whether local authorities were able to protect the human rights of those in need of care during this period—whether or not the local authorities in question were at any stage operating under easements—will be important.
89.The decision to reduce care provision to certain individuals is a very serious matter, particularly in circumstances where care needs may have increased during the pandemic. The Government must justify its reasoning for the continuation of the powers to trigger easements to social care provision, and they must only continue if absolutely necessary and proportionate.
90.If this power (which has barely been used thus far) is to continue beyond the six-month review period, the Government should issue specific guidance about meeting human rights standards in the discharge of obligations under the Care Act 2014 and develop guidance as to the content required of human rights assessments.
91.The Government must ensure that local authorities and care providers are able to meet increased care and support needs during and resulting from the pandemic.
Children’s social care
92.The Adoption and Children (Coronavirus) (Amendment) Regulations 2020 introduced a raft of changes to children’s social care regulations. These include make significant changes to statutory visits and statutory reviews for looked after children, fostering and adoption panels, adoption agencies, fostering agencies, private fostering, children’s homes, complaints and representations. Children’s charities and other stakeholders have expressed alarm at the potentially harmful impact of these measures on children’s human rights.97 For example, Just for Kids Law (JfKL), the Children’s Rights Alliance for England (CRAE) and the Youth Justice Legal Centre (YJLC) told us:
“These changes, [ … ], remove vital safeguards and legal protections for children in care at a time when they need more support not less due to the pandemic. They also put many children at greater risk of harm as many will be having less contact with children’s services or are not in school where safeguarding concerns would normally be raised.”98
93.In correspondence, the Children’s Commissioner for England has told us that these regulations are of major concern and that she views them “as unnecessary, detrimental for children’s, rights and a distraction from the much more fundamental issues about how to keep children protected during Covid-19.”99 Her office was not consulted about the regulations prior to their publication, and while they were informed of the regulations two days before they were published, they did not have an opportunity to make changes to them. After publication, they shared their concerns with the DfE, but for the most part these have not been acted on.100
94.We question whether removing vital protections for children was a proportionate response to the challenges posed to the children’s social care system by Covid-19. The Government must justify its reasoning for the continuation of these powers, and they must only continue if they can be shown to be absolutely necessary and proportionate.
Care homes
95.Overall, there were 57,588 deaths in care homes during the period from 2 March to 12 June 2020 which represents approximately 26,230 ‘excess’ deaths compared with previous years. The Covid-19 mortality rate for care home residents was significantly higher than for other people of the same age and data indicates a disproportionate impact on those from ethnic minorities.101
96.In evidence submitted to this inquiry, and elsewhere, it has been suggested that decisions about hospital discharge to care homes, testing for staff and residents, the supply of PPE and a lack of transparent accurate data, may have contributed to the very high death toll in care homes.102 The implications for the engagement of the Article 2 ECHR operational duty to secure life, arising from decisions about hospital discharge, are discussed below at paragraph 99.
97.The very high number of deaths from Covid-19 in care homes is a matter of deepest concern to us and engages the operational duty to secure life (Article 2 ECHR). The causes behind it are complex and we have not been able to devote the necessary time and attention to address them fully in the context of this report. It is, however, imperative that they be interrogated thoroughly in order to meet the state’s procedural obligations under Article 2. We urge the Government to ensure that addressing the issue of Covid-19 related deaths in care homes is dealt with as a priority in any inquiry or review they undertake (see chapter 9 below).
62 The case that Strasbourg most routinely cites now is the Grand Chamber decision in Centre for Legal Resources on behalf of Valentin Câmpeanu v Romania [2014] ECHR 972.
63 Lopes de Sousa Fernandes v Portugal [2017] ECHR 1174 at paragraph 166.
64 Lopes de Sousa Fernandes v Portugal [2017] ECHR 1174 at paragraph 166.
65 This paragraph and the paragraph below summarises paragraphs 186–196 of Lopes de Sousa Fernandes v Portugal [2017] ECHR 1174. They have been considered in the domestic context by the Court of Appeal in R (Maguire) v HM Senior Coroner for Blackpool & Fylde & Ors [2020] EWCA Civ 738.
66 For a recent example, where the diabetic individual in question was denied insulin, see Aftanache v Romania [2020] ECHR 339. A denial of treatment that is a medical necessity could also amount to a breach of Article 3 ECHR: D v UK [1997] 24 EHRR 42.
67 Amplified in UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health, 11 August 2020
72 Tracey v Cambridge University Hospital NHS Foundation Trust and another [2014] EWCA Civ 822, [2014] All ER (D) 138 (Jun)
73 Winspear v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB).
74 Ms Sarah Deason (COV0089), Neurodivergent Labour (COV0097), Scottish Independent Advocacy Alliance (COV0207), POhWER (COV0152)
75 See for example, Equality and Human Rights Commission, Being Disabled in Britain, 2017 p96. Following a systematic review of DNAR decisions and documents, the Resuscitation Council developed the ReSPECT process. It promotes more advance planning, good communication, shared decision-making, and good documentation. It is currently being rolled out across the NHS.
76 Age UK (COV0116), POhWER (COV0152), Royal College of Nursing (COV0166), Inclusion Scotland (COV0177), Inclusion London (COV0196), The Oxford University Disability Law and Policy Project, The Bonavero Institute of Human Rights (COV0209), Mason Institute for Medicine Life Sciences and the Law, the university of Edinburgh, School of Law (COV0115)
77 Department of Health and Social Care, Coronavirus (COVID-19): adult social care action plan, 15 April 2020
78 “Government agrees to issue guidance to ensure patients and families are involved in DNR decisions”, Leigh Day, 14 July 2020
79 Directly in NHS facilities, or indirectly (in the latter case by commissioning private facilities).
80 This is also suggested by the decision in University College London Hospitals NHS Foundation Trust v MB [2020] EWHC 882 (QB)
81 See for example, Mencap, Learning disability explained
82 “Covid 19 and the rights of disabled people” Disability Rights UK, 7 April 2020, see also Inclusion London (COV0196), Oxford University Disability Law and Policy Project and the Bonavero Institute of Human Rights (COV0209), People First (Self Advocacy) (COV0223) National Autistic Society (COV0155)
83 See for example comments made by Jon Spiers, Chair of the Embracing Complexity coalition of leading neurodevelopmental and mental health charities to Nursing Times, Avoid frailty score in Covid-19 guidance when assessing LD patients, 24 March 2020
86 Relatives & Residents Association (COV0210), Age UK (COV0116), Children’s Commissioner for England (COV0143)
89 The regulations also permit local authorities in Wales to suspend duties under the Social Services and Well-Being (Wales) Act 2014.
90 The impact of the CHC assessment duty removal was in part offset by automatic NHS funding for existing packages of care and support for patients discharged from hospital or who would otherwise have been admitted to hospital. From 1 September 2020, social care needs assessments and NHS Continuing Healthcare (CHC) assessments of eligibility have recommenced in England.
93 “Eight councils have triggered Care Act duty moratorium in month since emergency law came into force” Community Care, 30 April 2020
Published: 21 September 2020