One of the most famous pieces of writing about human rights undoubtedly belongs to the so-called Mother of Human Rights, Eleanor Roosevelt who wrote:
“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seek equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”
Today is UN Human Rights Day. It is an annual opportunity to reflect upon and to celebrate the role and value of human rights in modern society. For Eleanor Roosevelt, in order for human rights to have meaning and purpose they had to speak to the ordinariness of human living, the mundanity of interaction and the essence of what it meant to be related both to friend and stranger. This last year has been a year unlike any other for all of us but perhaps especially for those living in our care homes and for their families. Theirs has been an experience of a world turned upside down and inside out. Places of interaction and busyness have overnight become empty and silent; the love and touch of family has been excluded in the name of protection and suppression of the virus; the devastation of death and disease has taken too many lives and harmed beyond healing the lives of yet many more. This has been a truly awful year and for many remains so.
In this short piece I want to reflect on human rights and what has happened in aged care facilities and in care homes. I have commented elsewhere and will leave to another time a fuller analysis about whether what has happened in Scotland and what we have permitted to occur has indeed as is oft commented upon been on the one hand a ‘human rights scandal’ or on the other hand been the necessary yet distressing proportionate balancing of protection with freedom. Here I want to reflect on one of the major challenges both in our response to the Coronavirus to date but also inevitably into the future – the role of infection prevention and control (IPC). In doing so I am drawing on thoughts from a talk to the New York Academy of Medicine a few weeks ago in which I took part in an international exploration of the role of IPC in care homes across the globe. I am very grateful to colleagues for insight and conversation. In that conference I called for the urgent articulation of a human rights-based approach to IPC. I think such a development would be an appropriate legacy as together as societies we seek to live in the face of pandemics.
My starting point in this reflection is the personal supposition that human rights are essentially first and foremost about relationship and only secondly about legal recourse. The development of the UN Declaration of Human Rights was an attempt to set right the perversity of human interaction and exchange which had so corrupted and destroyed millions of lives. The inability to be truly human and to treat the ‘other’ with dignity and respect had cruelly overshadowed the world, leaving lives shattered and annihilated in the horrors of the Second World War. Those who gathered together in New York in 1948 sought to state in ink and on paper a framework for relatedness and co-responsibility which would act as a mirror for a world seeking to grow again and heal itself after the rotten harvest of hate reaped in the years before. Their aim was to centre humanity upon principles of mutual regard, respect, togetherness, solidarity and peace. But critically, as Roosevelt opined, these principles had to be and were to become rooted in the realities of normal encounter and community. They were not the statements of a paper treaty, inscribed on a parchment scroll unopened and unchanged – they were and are a living, breathing and vibrant document by which the world would be changed into togetherness, and in response to such change the Declaration would itself seek to grow and mature.
So, against this premise that human rights are about relationship, the restoration of co-responsibility and mutual regard, what about the way in which infection prevention and control has worked out during the pandemic in care homes?
I want to use the international framework PANEL to pose some questions and raise some issues. PANEL stands for participation, accountability, non-discrimination, empowerment and legality.
The embedding of a human rights-based approach to any scenario or situation requires participation and involvement of those most affected either by a practice or by decisions being made. There is I believe a very real sense that we have as a society failed to engage with, include and involve those who have been most affected by decisions to lockdown, to limit, constrain and exclude. ‘We’, whoever that ‘we’ have been, have done to and decided for.
Now I am the first to accept that in a crisis, when the ship is about to hit the rocks, then you need decisive action not debate to steer away from the danger. So, in the initial stages of the pandemic decisions could not be as participative and inclusive as they would ordinarily be. It was entirely proportionate and reasonable, in order to achieve the legitimate aim of immediate protection and safety, to literally save lives, to take measures without consultation and engagement. But… there comes a time when the prevention of infection and the control of it by actions which exclude and potentially cause more harm, necessitate not just compliance but owned acceptance and consensual agreement. There comes a time when the autonomy and rights of individuals, whether residents or family members, mean that they require to have their voice heard and their words listened to. We have, I would contend, failed to adequately hear and listen to the voice of individuals who have been residents in our care homes. Now I am not talking about direct care and support because staff and others have continually engaged and involved residents. What I do mean is the extent to which decisions have been taken, suppositions made, and positions adopted without the direct consent and involvement of people most affected. Acceptable initially, but increasingly indefensible as time has progressed and most certainly inexcusable nine months on. This relates not just to general guidance around visiting and exclusion, but also around self-isolation, encounter and interaction in a care home, around the ability of ‘free’ citizens with capacity to leave a building and their right to engage as equal citizens in normal activity and as part of wider community.
In summary, infection prevention and control measures have at times not been rooted in the human rights principle of participation, involvement, agreement and consent.
The second element of PANEL details that in any human rights practice there must be clear lines of accountability and responsibility. At essence when restrictions have had to be enacted there must be a mechanism to ensure the proportionate and reasonable application of restrictions. I fear at times we have used a sledgehammer to crack a nut. I fear that we have adopted IPC measures suitable and appropriate for an acute hospital setting and have sought to utilise these – with very little adaptation – into an environment which is a home. Care homes are not institutional settings but environments where there is group living and exchange, interaction and neighbourliness.
Another aspect of accountability must also surely relate to the degree to which scrutiny and inspection is used to assess and protect the human rights of any individual in any context. I seriously question whether scrutiny has achieved this outcome. Scrutiny in human rights terms involves a monitoring to ensure that the rights of citizens are protected even in instances where the State decrees an intervention is appropriate and proportionate. I think we need to have a serious debate about the extent to which the curtailment of individual human rights in the name of infection, prevention and control and to enable the safeguarding of the many has been accountable to the legalities of our human rights frameworks. Criticaly there is a clear necessity for independence in advocacy and voice where it is felt that the rights of individuals have not been given due accord.
Non-discrimination and Equality
This PANEL principle states that all forms of discrimination must be prohibited, prevented and eliminated. It further states that people who face the biggest barriers to realising their rights should be prioritised. I do wonder if our response to the challenges of aged care facilities across the world, not just in Scotland, has been influenced by widespread ageism and discrimination. Have we treated older person care and support in the way in which we would have others – in terms of prioritisation, resource, support and focus – I fear we have not. Have we sufficiently adapted measures and interventions to take account of the peculiar needs, for instance of those living with dementia and cognitive decline? You only need to speak to a care worker to learn just how impossible it is to encourage compliance around isolating in a room from someone who has no memory of instruction or understanding of their actions. Have we really understood the fear and hidden silence of those whose lives of encounter and banter were marshalled overnight into detachment and distance, where touch was removed, and contact curtailed? These are profound human rights questions which go to the heart of not just what is desirable in our infection prevention practices but what is morally and ethically acceptable and achievable without the limitation of autonomy and individual rights.
At the heart of this is the sense that everyone should understand their human rights, and be fully supported to take part in developing practices which affect their lives. I have stated above the absence of voice from those most affected. But when I look around at the global response to aged care, I see little evidence that internationally we have enabled professionals in care to be the leaders and to act autonomously in infection prevention and control. Rather the international commentary and contention has been that an overly clinical approach with all its assumptions has been utilised in aged care settings and that we have failed to adapt measures around IPC, resulting in a lack of fit for context and serving to dis-empower and negate the professionalism of care staff.
Lastly on this day especially I have to pose the question about the degree to which our international use of IPC measures has indeed been legitimate, proportionate and even legal in accordance with national and international frameworks and treaties.
Article 2 of the European Convention of Human Rights seeks to protect life – but it also acknowledges that the preservation of life is not the same as existence and the continuation of days. Have we protected life at all costs failing to respect individual wishes (even in a collective and group living environment)? I will never forget the email I received from a man of 104 who simply wanted to have a few hours with his children rather than months of isolation. Article 3 clearly states that to treat individuals in a manner that strips away individuality, that damages their wellbeing both physical and psychological can be deemed to be equivalent to treatment which is degrading and demeaning of humanity . But perhaps most explicitly have we adhered to the requirements of Article 8? Have we enabled people to exercise family life, to maintain and enhance psychological and physical integrity?
For all the legal requirements preventing human rights abuse is only one step towards the fulfilment and realisation of these rights. There must also be active agency which results in deliberate intervention and action to promote and enhance these self-same rights. It is not enough just not to do; we are compelled positively to act.
I know I have posed more questions than offered answers. I know there will be some who read this as a treatise in simplicity, but on this Human Rights Day I would contend that it has never been more urgent than it is now to develop and articulate a response to infection which balances the rights of individuals better than what we have seen and still see in many places across the world. I would suggest it is a critical human rights question of our time.
There is no smaller place, no place closer to home, than the places and rooms, than the care homes and aged care facilities of our communities. We owe it to our better selves to ensure that we develop a more proportionate, risk-balanced, rights-respecting global approach to infection prevention and control. Not one that ignores the science but moulds that science to the realities of living and community; that grounds measures of intervention and restriction in a way that upholds and enhances the dignity, autonomy and human rights of all affected.
“Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”