Heather Payne: The challenges of ‘real-time public ethics’: incorporating ethics expertise in public decision-making

The following is an edited version of Heather Payne’s remarks at a UK Pandemic Ethics Accelerator event on 23rd May 2022, discussing the place of values in public policy during a pandemic

Dr Heather Payne is a paediatrician with extensive experience in child disability, fostering and adoption, and safeguarding. She currently works as a Senior Professional Adviser in Welsh Government in health policy, quality and safety. She was co-chair of the First Minister’s advisory group on COVID-19 health disparities and ethnicity, resulting in the development of the Anti-Racist Wales Action plan. She is chair of the COVID-19 Moral and Ethical Advisory Group for Wales, and contributes to the UK Government Moral and Ethical Advisory Group (MEAG) as well as the ethics advisory group of the UK National Screening Committee.

It’s important to be clear about where I come in this debate: I am not an accredited expert in ethics. I’m a paediatrician, with an interest in the wellbeing of children and young people, and indeed everybody else, in Wales. I am a professional advisor to policy colleagues and Ministers, with a key opportunity to influence ethical approaches to policy-making.

I had the huge privilege of being the Welsh representative for the Chief Medical Officer and Chief Nursing Offer for Wales on the Department of Health and Social Care’s MEAG. I was able to draw on that experience when it became clear that, because of the different political, legal and social circumstances in Wales, we needed separate arrangements for ethical advice for Wales.

The COVID-19 Moral and Ethical Advisory Group for Wales

I set up the COVID-19 Moral and Ethical Advisory Group for Wales (CMEAG-Wales) to respond to policy colleagues who were directly briefing Welsh Ministers on key Covid-19 decisions.  These included prioritisation of treatments, resuscitation decisions, vaccination priority, restrictions of civil liberties – a wide range of issues with differential effects on different parts of the population.  Our group was focussed on key policy decisions, their implications, benefits and risks. We were clear that the advice we gave was in response to policy questions that were brought to the group.

A legal framework to support decision-making

To set the scene – since devolution, there is a steadily increasing body of specifically Welsh legislation, diverging from England. We had the first children’s rights legislation in the UK – the Rights of Children and Young Persons (Wales) Measure 2011 – and since then we’ve had the Social Services and Wellbeing Act 2014, the Wellbeing of Future Generations Act 2015, and we have the Quality and Engagement Act coming into force in 2023 – which includes a duty of quality and a duty of candour for health and social care services in Wales.

An excess of information

It’s important to set the context for the work of our group, in that policy colleagues were faced with numerous rapid decisions with a huge amount of conflicting information being published. There were about 1000 Covid-related papers on MedRxiv per month, mostly not peer-reviewed – so these needed careful analysis to identify the evidence prior to evaluating equipoise.  A lot of the reported findings were very medically-modelled, which had to be reconciled with the Welsh Government’s commitment to the social model of disability.

A broad-based advisory group

The group that I chaired was broadly based. A broad citizen voice was involved, with representation from the Equality and Human Rights Commission in Wales, Welsh Commissioners for Older People, Children, Disability, Learning Disability, and Welsh Language. We also had health and social care professionals, black and ethnic minority communities, trade unions, faith and belief groups, legal, ethics and human rights experts, and a very wide representation from the third sector.

Statement of values

We built on the work of MEAG, developed and published a Wales-wide statement of core values and principles. It was helpful structurally to enable colleagues to articulate and understand the values and principles by which they were making difficult decisions. The “executive summary” was a checklist for good decision-making, which could be used during a clinical consultation or a policy conversation. It was consistent with policies on social services and wellbeing and our policy document “A Healthier Wales”, which is based on coproduction and involving people.

The role of the advisory group

I always emphasised that the CMEAG-Wales was not some kind of Jiminy Cricket sitting on people’s shoulders telling them what to do. We emphasised that what we were doing was helping people in power to decide, being aware that they had to justify any decision which appeared to impact differently on different groups. And the pandemic was important as a syndemic – relentlessly exposing existing inequalities across our society.

We advised on Do Not Attempt Cardio-Pulmonary Resuscitation decisions, and the problems that clinicians faced when presented with overwhelm within the health system at the height of pandemic pressures. Sometimes these pressures led to inappropriate responses, but advice from the group helped to modify processes that improved these decisions.

At first, requests for guidance were brought to us after the event, but once we had established ourselves as giving advice that could help people make good quality decisions, we established a referral and advice route to see proposals in advance of decision-making.

We advised on a wide range of questions, including:  clinical prioritisation for treatment escalation; balancing the harms of Covid and non-pharmaceutical interventions; the impairment of civil liberties; restriction of children’s schooling; hospital visiting policies – balancing visiting and access and infection control; the administration of vaccines and the use of restraint for people with learning disabilities or lack of competence; vaccine prioritisation; access to clinical ethics advice on the ground; support for NHS organisations to minimise risk to staff experiencing moral distress, and sometimes moral injury.

Key themes

The recurring themes in our advice were repeating existing principles and commitments; co-production, a social model, which is enshrined in Welsh Law, the use of Equality Impact Assessments early on, and following equality law. We found that most issues were simple applications of existing policy and legal expectations, and we never really needed to decide “how many angels can dance on the head of a pin?”. Policy decisions are obliged to justify how they have balanced competing rights and conflicting views, and our group repeatedly found that we weren’t telling policy colleagues what they should do, we were telling them how they should go about deciding.

Questions for the future

Looking to the future, the group feels that there is still work to do in dealing with the post-Covid backlog fairly. We’re hoping to support and embed good decision making in government and clinical colleagues who are ultimately accountable at different points in the process of health and social care. The hanging question is, when we talk about “capacity to benefit”, as a key criterion for clinical prioritisation, is that more premised on a medical model than it should be in the views of all our population? The voice of disabled people was clear that more emphasis on a social model is needed.

I hope that our experience will be helpful. The group hopes to work more closely with the forthcoming Citizen Voice Body to promote ongoing moral and ethical considerations in NHS Wales.