I shouldn’t try to speak for everyone, but it seems as though we are all news junkies at the moment. One of the frustrations with this is that, like prospecting for gold, one scans and sifts tons of stuff, and real nuggets only emerge quite rarely.
So I was rather stunned when I saw three particularly sizeable nuggets in the Guardian’s report of yesterday’s No 10 Press Briefing. Specifically:
- The Government refuses to discuss publicly its ‘lockdown’ exit strategy. Seemingly it would be a mistake to start a national conversation before the peak of the epidemic is over. Really? Well, they could at least tell us what the strategy and thinking for the lockdown entrance was, because we don’t even know what went into that decision, other than ‘following the science’.
- It has refused to name all members of SAGE on the basis that “withholding the names protected SAGE members from being subject to undue influence”. Do they not see that withholding the names of SAGE members makes the whole process subject to the perception of undue and obscure influence?
- A spokesperson said that the Government thought China had lessons to learn about “the provision of transparent and accurate information”. That may be true, but it doesn’t mean that our Government has already learned that lesson.
This collection of responses from No 10 illustrates quite tidily the reason why some serious concerns have been expressed about important elements of the Government’s handling of the current crisis. Most of the concern centres on three core issues:
- First, what values are being engaged in their decision-making, and how? (‘Following the science’ is good, but decisions also involve values and judgements.)
- Who (in particular providing ethical perspectives) is being consulted and has a voice in these discussions?
- Third, what has happened to the idea of transparency? These decisions and processes desperately need to be opened up.
The questions raised with No 10 today about the exit strategy, and the members of SAGE, are not the only ones where these concerns have been expressed, and are becoming more acute. There are others:
- Why has the Government not given advice or guidance to medical practitioners about how to allocate resources (e.g. ventilators and intensive care beds) if there are not enough to meet need? How should such decisions be made? This cannot be left to individual judgements of front line staff, or subject to variation across regions and Trusts. There is some guidance from BMA and RCP, but it is not definitive or sufficiently authoritative: the Government needs to be open and accountable on this fundamental question. Failure to do so places an unacceptable burden on individual staff on the front-line.
- What is the role of the Moral and Ethical Advisory Group, first set up last year (pre-coronavirus and Covid-19) to provide “independent advice to the UK Government on moral, ethical and faith considerations on health and social care related issues”? There is no published information suggesting that it has been consulted. If it has not, why not? If it has, what was said and how has Government responded?
- What thinking has been going on about the introduction of a contact-tracing app – which is apparently imminent – in terms of privacy protections in the short and long term, and other social and ethical implications of such a strategy?
- Similarly, the use of immunity certification, which the Health Secretary promoted very recently. As antibody testing is introduced and expanded, serious questions arise about how test results might be used, recorded, shared. Immunity certification is fraught with potential problems in terms of e.g. privacy, stigma, discrimination. Let us talk about it!
Already there is widespread unease with the way that the Government has responded to questions about its preparedness for a pandemic and about its ability to secure and distribute PPE where it is needed. If the Government is not open and honest it will not secure trust.
When the Government is facing situations or contemplating measures that will affect people profoundly, then trust is going to be vital. And that trust will only be afforded to a Government that is engaging with wider public groups, listening, explaining, responding openly and transparently.
In expressing these concerns, I do not claim that we have answers, nor that we are the source of all ethical wisdom. But in our reports on public health (2007); on the collection, storage and use of biological and health data (2015); and on research in global health emergencies (2020) we have time and again stressed the need for public justification of policy measures; for wide engagement in policy processes; for explicitly setting out the values engaged.
There is urgency to the situation that we all face. But urgency does not absolve those responsible for decision-making of the moral duty to involve those who are affected; to engage with the communities that they represent and seek to protect; and to be transparent about the basis on which decisions are being considered and are being made.
I just want to join the applause for Hugh's blog. It does seem to be very important to ask questions, even at a moment when it might seem 'unpatriotic'. (This will be part of the challenge facing the new Leader of the Opposition.)
Nicola Stingelin makes a very good point about people dying alone. It's a good example of a rule that people should surely be allowed to break under certain circumstances as long as they are fully informed and so on. If not, the basis for such a significant decision to curtail rights should be obvious, whereas it is not. It's obvious why we don't want mass movement of people, but why we don't want a very elderly wife sitting with her very elderly husband as he dies in a care home is not so clear.
What I want to keep on emphasising are the virtues and the role they might play in the current situation. One virtue the government might like to consider is humility. There is something a little distasteful when we hear government briefings which constantly tell us that the track being pursued is the best one and that we are leading the way. It's not done quite as obnoxiously as elsewhere, but we need more sustained and detailed questioning and appropriate transparency in response. So I was delighted to read this blog and the responses to it.
Really good piece Hugh. Even if we all agree on the result (e.g. the current lockdown), there is much to be said for demonstrating the reasoning - we care about the means as well as the ends.
There are also further complexities involved with data-driven approaches to tracing and immunity certifications.
Those who lack access to the hardware (smartphones) or the means to use the app (data and signal) represent a practical challenge. But there will be considerable crossover with groups who have experienced existing health inequalities. There is a risk such approaches will compound the effects of existing inequalities, as well as further impacting the economic and food security of individuals.
Without transparency about how equity concerns have been accounted for in any approach taken the government risks further eroding trust in its actions and its wider approach which threatens our ability to move beyond this crisis.
My mother is 94 - on what criteria will anyone decide if she should be put on a ventilator to potentially save her life, if there needs to be a rationing system?
Is it a personal decision about her length of life?
Is it a judgement about her quality of life in 1/2/5 years time?
Is is a statistical decision that she’s only got a max of say 5-10 years left?
Is it a value judgement about her value to society?
Is it a value judgement about her economic role in society - and who and how many people rely on her and are her dependents?
Who should I be trusting to make any of these decisions on her behalf?
I understand how you feel thinking about your mother age 94. I just wanted to say that there are guidelines agreed to support clinicians who need to make decisions. One of the key factors that I know features in this guideline is the outlook how likely it is that the treatment will be successful. So in a situation where an 80 year old is needing ventilation and a 40 year old needs ventilation and there is one ventilator and all other clinical variables are similar the reason to choose to ventilate the 40 year old person would not be any of the reasons you mentioned above. The reason to choose to ventilate 40 year old would be because the chances that the treatment will be successful are significantly higher for that patient.
Miguel da Silva
Totally agree with you about he need of transparency and of a public debate.
So good you have the wisdom and courage to SPEAK TRUTH TO THE POWER.
Full Teacher of Medical Eyhics, University of LIsbon
Past President of Portuguese Bioethical Council
A timely reminder to those in government that the approach needs to change.
In situations of a public health emergency, values other than individual autonomy must in many contexts correctly take priority. The parliamentary debates surrounding the passing of the Coronavirus Bill reflect the serious nature of granting emergency powers in a public health emergency, and the high level of scrutiny taking such action requires.
Amongst the most distressing COVID-19 events have been the reports of people – both young and old – dying without family being present because of risks of contagion. The role played by surrogate family health care professionals is truly remarkable.
Notwithstanding the correctly must vaunted ‘science’ held as justifying not allowing loved-ones the chance to accompany the dying process, I have been concerned at who has being formulating this kind of rule, using what process, and precisely what rights, interest, risks and benefits are being draw into the analysis? Do we have a failure of moral proportionality?
Clearly times-lines and decision making processes in a health emergency cannot follow normal democratic paths. However, this means that the importance of transparency, accountability, and scrutiny are heightened.
I was therefore relieved to hear early on 15th April that the Rt Hon Matt Hancock MP, Secretary of State for Health and Social Care, would be relaxing such restrictions. However, the wording he actually used was very worrying. Mr Hancock said that he was "giving people the right to say goodbye."
This approach to 'rights', and who has the power to take them away, and who has the power to give basic rights in a public health emergency surely deserves transparency, accountability and debate - not only regarding the current situation, but also regarding future public health emergencies. We need action now – a question to parliament when it open? I am working on this. Please join me.