After the initial scramble to contain the spread of the SARS-CoV-2 virus in Europe and as the situation slowly improves in the countries hardest hit by the pandemic, Council of Europe member states have to reckon with the grim reality that a substantial number of deaths, up to half according to the WHO Regional Director for Europe, occurred in long-term care facilities, in particular in care homes for older persons. This happened despite the fact that residents of such institutions were subjected to drastic isolation measures earlier than the general population, a circumstance which sadly took its own toll on their mental health and well-being.
This chilling picture emerged slowly: it took several weeks for deaths in long-term care facilities to start to be included in the official figures in some countries, for example in France and more recently in the UK, while statistics remain incomplete or partial almost everywhere. It appears that in all countries hit by the virus, many residents fell ill and lost their lives completely alone and isolated, often even without the knowledge of their families.
Many factors seem to have contributed to the high levels of mortality in these institutions in addition to the frailty of their residents. These include the lack of preparedness in long-term care facilities, many of which suffer from chronic understaffing, including because sometimes their private owners have long been privileging profits over the quality of care; the lack of personal protective equipment among care staff, who were often just as much in the frontline as hospital staff; lack of adequate epidemiological surveillance; inadequate infection prevention and control measures; and insufficient co-ordination between these institutions and hospitals.
In many countries and individual institutions, management of the crisis appears to have been fragmented and chaotic, with care personnel often being left to their own devices. Some have made heroic efforts to save residents, sometimes confining themselves in the facilities and avoiding contact with their own families; some countries, like Romania, even made it mandatory for staff to isolate themselves in long-term care facilities or specially designated places. In other cases, residents were left in absolute neglect or abandoned despite having been infected, as it was reported in Spain, for example.
This situation raises many legitimate doubts as to whether all those who lost their lives in a long-term care facility had access to adequate healthcare, which includes both life-saving curative treatments and end-of-life care to reduce their suffering. I am particularly disturbed by reports from various member states that placements in hospitals from these institutions were refused in a certain number of cases, as hospitals and emergency healthcare services became saturated. Older persons may also have inappropriately been refused treatment in hospitals even when there were still places available; for example, investigations are ongoing in Sweden following allegations to that effect in Stockholm.
There is understandable outrage and frustration among family members who lost their loved ones under very opaque circumstances. Many have made criminal complaints about the management in care homes, for example in France. In Spain, prosecutors opened criminal investigations for a number of facilities for older persons, and similar investigations are also ongoing in Italy. In accordance with their obligations under Article 2 of the European Convention on Human Rights regarding the right to life, member states must shed light on all the deaths occurring in these institutions, without exception.
As the pandemic continues, it is extremely urgent for all member states to draw the necessary lessons from the experience in Europe so far, and quickly turn them into policies and actions to ensure that these mistakes are not repeated. While it is positive that some member states announced that they would raise the priority of testing and personal protective equipment for the affected staff and residents in long-term care, this must be systematic and followed by concrete actions. In addition to personal protective equipment, staff should have access to adequate training and support, as well as remuneration that takes account of their vital role in the response to the pandemic.
It is important to recall that WHO recommends that COVID-19 patients in long-term care institutions be cared for in a health facility, especially when they are under particular risk due to their age or underlying co-morbidities. Member states must also bear in mind that everyone, without exception, has the right to the highest attainable standard of health. I urge states to take particular account of Article 3 of the Council of Europe Convention on Human Rights and Biomedicine concerning the principle of equity of access to health care and the statement of its treaty body on human rights considerations relevant to the COVID-19 pandemic. As I also previously emphasised, any absolute necessity for prioritisation in a context of limited resources must be based solely on sound medical evidence and criteria, an individual prognosis, and the urgency of the required treatment. Any prioritisation procedure that disregards the basic principle of equal worth of all human beings, and is based for instance on assumptions about “social value” or “quality of life”, or criteria such as age, disability status or the fact that the person is in a long-term care facility, are not in line with ethical and human rights principles, as stressed by many international and national ethics bodies.
Even in cases where non-discriminatory, strictly medical criteria for resource allocation exclude curative care, supportive and palliative care must nonetheless be available. Member states must also ensure that residents in long-term care facilities continue to have human interactions with their loved ones, especially if they are sick, through all available means which do not put persons at risk. In this context, I note that the UK judiciary recently affirmed that being allowed to die surrounded by one’s family is a fundamental part of the right to respect for private and family life.
In one of my earlier statements on the pandemic, I recalled my Office’s long-standing misgivings, based in large part on consistent findings of national human rights structures in Europe, regarding an over-reliance on care homes for older persons, as opposed to community-based alternatives, and the prevailing conditions in these institutions. There had been many other early warnings: for example, WHO had stressed in guidance issued in 2016 for managing ethical issues in infectious disease outbreaks, that “particular consideration must be given to individuals who are confined in institutional settings, where they are highly dependent on others and potentially exposed to much higher risks of infection than persons living in the community”. As for the continuing use of residential long-term care institutions to cater for persons with disabilities in many member states, this is a long-standing violation of human rights and international law as enshrined in the UN Convention on the Rights of Persons with Disabilities.
The tragedy that Europe has experienced over the past weeks in its long-term care facilities is a stark reminder that member states ignore international human rights standards and expertise, and the recommendations of their own national human rights structures, at the peril of the lives of their own citizens. The absolute priority right now must be to make sure that this experience is never again repeated over the course of the COVID-19 pandemic. But this should not detract from the urgency of the social care reforms that all European countries must undertake without fail to eliminate the root causes of this tragedy in the long run, and transition to long-term care systems which put persons’ needs and dignity at their heart.