By Stephen Thomson.
End-of-life ethics and the human rights of dying patients and their families are being compromised by the UK Government’s legal and communications response to COVID-19. Despite NHS England’s Visitor Guidance continuing to state that one immediate family member or carer will be permitted to visit a patient who is receiving end-of-life care, there are reported difficulties in the access of family members to a patient dying of COVID-19 or another terminal condition, with access sometimes being completely denied. This is the result of ambiguous legislation, unclear guidance and a lack of consistently enforced NHS policy.
The Health Protection (Coronavirus, Restrictions) (England) Regulations 2020 (the Regulations) provide a non-exhaustive list of ‘reasonable excuses’ by which a person may lawfully leave their place of residence. The list does not specify that a visit to a dying family member is permitted, though as the list is non-exhaustive, such a visit is capable of being construed as a reasonable excuse for the purposes of the legislation. Nevertheless, its non-inclusion may wrongly lead many people to conclude that such a visit is not legally permitted. Compliance with misapprehended legal obligations in this case may cause undue additional suffering for dying patients and grief for their family members. This could also fail to properly uphold the Government’s commitment to the involvement of family in discussions about, and delivery of, end-of-life care.
Public authorities must comply with their obligations under article 8 of the European Convention on Human Rights (the Convention), which guarantees respect for private and family life, including physical, psychological and moral integrity. In the context of COVID-19, interference with article 8 rights by a public authority is only permitted where such interference is in accordance with law and ‘necessary in a democratic society’ in the interests of public safety, protection of health, or for the protection of the rights and freedoms of others. The case law of the European Court of Human Rights is clear that any restriction on a Convention right cannot be regarded as ‘necessary in a democratic society’ unless it is proportionate to the pursuit of a legitimate aim. Article 15 of the Convention provides that derogation from this obligation is permitted in a time of public emergency, which the COVID-19 pandemic could be construed to be, but only to the extent strictly required and this would be open to legal challenge.
The question is therefore whether the denial to family members of access to dying patients, in the context of the COVID-19 outbreak, is a proportionate restriction on the right to private and family life. If a more proportionate restriction is deemed by the European Court of Human Rights to be feasible, such as the designation of specialist facilities to allow for family access, or strict regulation of the duration or conditions of access, then the current practice may be in violation of both the patient and the family members’ rights to private and family life.
Two reforms would improve the outlook for end-of-life ethics and human rights compliance during the COVID-19 outbreak. The Government must first implement a consistent policy of access to dying patients for family members. The Scottish Academy of Medical Royal Colleges, the Royal College of Physicians of Edinburgh, Marie Curie and Scottish Care have co-produced new guiding principles to ensure humane, compassionate and dignified end-of-life treatment. They rightly advocate for equal access for family and friends of patients dying from COVID-19 and other terminal conditions. Although the principles are directed at the Scottish Government, they are equally applicable across the UK.
Second, the Secretary of State for Health should exercise his powers under the Public Health (Control of Disease) Act 1984 to amend the Regulations by statutory instrument, adding the visiting of family members to dying patients among the list of reasonable excuses for a person to lawfully leave their place of residence. This would remove any doubt about the legality of a person leaving their place of residence for that purpose and reduce the potential stresses of justifying their actions to police officers, who would in turn be assisted in their enforcement of clarified rules. At present, this remains a legal grey area that could only be resolved by judicial interpretation in litigation, which would be an additional burden on grieving family members. These reforms are necessary to maximise adherence to end-of-life ethics and human rights obligations at a distressing time for dying patients and their families.
Author: Stephen Thomson
Affiliation: Associate Professor, School of Law, City University of Hong Kong
Competing interests: None.