Extensive guidance now at RCPCH.

Nuffield Council on bioethics review went to government – https://cdn.nuffieldbioethics.org/wp-content/uploads/NCOB-Disagreements-Critical-Care-Indepdent-Review-FINAL.pdf

“First do no harm” – fundamental of medical ethics.

Except dubious origins… The Latin makes people think it’s Hippocrates and in the Hippocratic oath – but Hippocrates was Greek and it’s not in the oath. He does say something pretty similar in the Epidemics.

Not in the Oxford English Dictionary. Well known in America in the 1930s.

1860 Medical Textbook by Inman says it comes from Thomas Sydenham, but not found in his work, and no one else confirms this. But Sydenham did like Latin.

Florence Nightingale says it in English in the preface to her book on hospitals but not in Latin.

Jack Eckert reckons it was the Latin versions of Hippocrates that started to circulate as printed versions that gave rise to the expression. But still odd that rarely used in either English or Latin until second half of 20th century.

Of course, it isn’t a great principle in any case. Most of medicine is a risk:benefit calculation, rather than avoidance of any possible harm.

Lots more discussion in Cedric Smith’s article.

In research, many studies are non-randomized, so risk of bias.

Newcastle-Ottawa scale is one attempt to assess bias formally – judged on:

• the selection of the study groups;
• the comparability of the groups;
• the ascertainment of either the exposure or outcome of interest for case-control or cohort studies respectively. 

So things like cohort not being representative; control group coming from different population; measurement being rather subjective; duration of follow up – all increase risk of bias.

Publication bias

Suspicious if small study with big effect!

UNCRC report June 2023 -Scotland should prioritise non-discrimination, abuse/neglect/sexual exploitation, children “deprived of family environement”, mental health, asylum seeking and refugee/migrant children.

Should develop/strengthen strategies for community based therapeutic mental health programmes for children of all ages, mental health promotion, screening and early intervention.

Benefits to children are not the point – just a human right, under article 12.

Right of individual child but also of groups of children.

Voice is not enough (2007) – Lundy Model:

• Space – to form/express views safely
• Voice – facilitated to express veiws
• Audience – views should be listened to
• Influence – views must be acted upon as appropriate

Space – actively created! Not just reactive. And demonstrably safe. Consider the “seldom heard” child eg talking mats.

Voice – silence can be clear in meaning! Mode of expression? And support to understand options, possibilities. Lundy has published European commission guide to creating child-friendly documents

Subjects that are uncomfortable/awkward in particular – how can they be framed in way that can be discussed openly?

Audience – active listening. Relevant decision makers.

Influence – High expectations are good! But transparent about what is possible. Feedback and follow up.

Framework for feedback:

• What did you agree with?
• What if anything surprised you and why?
• Did you disagree with anything? If so, what and why?
• Has it influenced your views in any way? If so, how?
• What have you decided?
• What is happening next and when?

NI government has evaluation checklist and CYP feedback form.

Talking Mats – Margo

Structured visual communication – real or virtual world. Used for 2020 “Can Scotland be Brave?” report

Jones and Welch 2018 – representation (avoiding adult bias), judgement (viewing children as capable of making informed decisions), validity (even if different from adult views), Impact (how acted on)

What we think is “fine” because it’s what we are used to may not be for kids – eg hospitals/clinics.

Who all is in the room? Why are they there?

Beware leading questions

Before training, only 23% felt confident that CYP views were represented, rose to 89% after. Feedback from children was overwhelmingly “just nice to be listened to”.

“Boeing in 2018/9 after the crashes of two 737 Max 8 aircraft was
following a popular playbook:

• First, deny any problem; then
• sow doubt about claims that your products or practices cause harm.
• Once the problem becomes undeniable, endeavor to deflect responsibility for the problem,
• when deflection is no longer tenable, try to minimize or localize the problem eg blame lower-level employees”

Gives other examples of George W. Bush and Abu Ghraib camp (abuse attributed to
“a few American troops”).

Purdue Pharma – in response to  public criticism and lawsuits for its irresponsible opioid marketing strategy – tried to be seen as part of the solution rather than the cause of the problem.

Trust is based on perceptions of that institution; in contrast, trustworthiness is a quality we attribute. Trying to boost trust without addressing underlying reasons for the loss of trustworthiness are unlikely to succeed, and usually perceived as inauthentic.

You can measure trust (by asking people about their perceptions and beliefs) but not trustworthiness, which is more nebulous. 

We tend to talk about trust as being a one dimensional thing but there are probably different kinds of trust – (gives example of a successful financial advisor who has had multiple divorces – you might trust them for financial but not relationship advice). Do they have knowledge, skills, resources (often quite specific) to perform what you have entrusted them to do?

Trustworthiness on the other hand is built around questions of reliability, honesty, and integrity. If you have reliability trust in someone, then you believe that person does (or will do) what they say they do (or
will do).

Along with integrity, there are the values of fidelity, care, and benevolence—relates to putting others’ interests ahead of one’s own. Which raises the question, “whose interests are being privileged?”

So called crisis management experts talk about “optics” – public perception – and respond to it by “public performativity” of trust building in terms of use of language and symbolic actions.

Marks suggests you compare one kind of crisis he calls “opsis,” (ancient Greek word for “appearance” as used by Aristotle for one of his six elements of tragedy, often translated as “spectacle”) with institutional sepsis. “Just as medical sepsis in the human body is a critical condition that endangers life, the loss of an
institution’s integrity and trustworthiness is another form of sepsis—ethical sepsis—that poses an existential threat to the institution. A problem even when the loss of integrity and trustworthiness has not yet come to the attention of the public.

Gives vaccine hesitancy as another example – numerous and varied causes, including misinformation, but note strong ethnic patterns at time of Black Lives Matter campaign and NHS being called “institutionally racist”. Suspicion of corporate interests in public health messages too.