Category Archives: Ethics

Martha’s Law

13yr old Martha Mills died in 2021 at King’s College Hospital, London, of sepsis after pancreatic trauma (fell off bike in Snowdonia). The family went to the local minor injuries unit, where they were reassured. She continued to have severe pain however, then vomiting – so they went to the nearest hospital. She was admitted to the ward, then ICU, before being transferred by helicopter to King’s College London (1 of 3 specialist centres for pancreatic injury in the UK).

“We are so lucky to be here”, writes the mum.

She was NG fed, a peritoneal drain inserted. She started mobilising after 2 weeks. Then she developed fever and diarrhoea – started antibiotics. “The consultants swooped in, and were ostentatiously deferred to by the junior doctors.

“They were chatty, assertive, grand.”

Martha then started oozing from drip sites and peritoneal drain site. A scan showed small pericardial effusion. She had a persistent fever – and it was the start of a bank holiday weekend.

Consultant went home after morning round. Martha’s mum raised her concern about septic shock but was told “it’s just a normal infection”. She was told not to look up things on the internet – “you’ll only worry yourself”.

When she developed low BP and tachycardia, then widespread rash, it was diagnosed as a drug reaction.

““Trust the doctors – they know what they’re doing,” said the nurses.

The consultant was contacted to discuss worsening PEWS – did not come in – no change in management was made. The consultant phoned PICU (routine) but gave limited info – advised against review “to avoid parental anxiety”. The night shift junior did not review. Martha was drinking copiously.

At 0545 she had a seizure, at which point people started arriving and things seemed to happen – she was moved to PICU, intubated and then moved to Great Ormond Street hospital for ECMO. She died 4 days before her birthday.

Issues

  • Mum is editor at Guardian newspaper
  • Nothing to do with insufficient resources, overstretched doctors/nurses, or cuts, or a health service under strain
  • Consultants dismissive and arrogant
  • Juniors “performing” competence
  • No one expressed concern, even if they had it
  • Lack of note keeping
  • Lack of consultant presence at weekend
  • All doctors mentioned at inquest were men

Mum’s advice to parents

  1. Our trust in doctors should have limits. Plenty of clinicians prone to arrogance and complacency.
  2. However indebted you feel to the NHS, don’t be afraid to challenge decisions if you have good reason to.
  3. Remember most of the doctors in hospitals are just [sic] training. Don’t be afraid to ask how long a clinician has been qualified. Junior doctors are often green and trying to stay composed to impress their superiors.
  4. Make sure, if you can, that a single consultant has overall responsibility: we all know that if you’re answerable for something, you try harder.
  5. Google like crazy.

Aftermath

September 2023 Riya Harani dies from invasive Group A streptococcus and influenza B. Seen in hospital the day before. Junior doctor diagnosed a virus and discharged her with advice to take over the counter painkillers and info re: management of sore throat. Consultant not involved. At inquest, coroner says ““I think it highly likely that if it had been open to Riya’s family to seek a second opinion at that point, they would have done so without hesitation.”

UK Minister for health has said they will progress with the right to urgent second opinions across the health service.

Second Opinions

Right to second opinion already in Good Medical Practice: “In providing clinical care, you must respect the patient’s right to seek a second opinion”. But not traditionally associated with acute care and no detail otherwise.

Seeking a second opinion is more common in:

  • women, middle-age patients,
  • more educated patients, higher income or socioeconomic status,
  • chronic conditions,
  • living in central urban areas.

Motivation is to seek to gain more information, or reassurance. Potential major impact on patient outcomes in up to 58% of cases. 

Solution

Condition Help (Pittsburgh, 2000s), Call 4 concern (Royal Berkshire) – hospital hotline to call rapid response team to bedside. Ryan’s rule (Queensland) is state-wide number for review of medical care.

But evidence of benefit sparse. Tends to be pain management and communication breakdown rather than acute deterioration. 18% of patients generated nearly half of all calls to Condition Help (in 41.4% of cases, a change in care was made).

International Society for Rapid Response systems includes family trigger system as one measure of effectiveness. 

“The recurring problems of hierarchy, arrogance and poor culture have not been tackled despite decades of effort… It is not the job of patients and families to wait around for healthcare providers to sort out their culture.” [(Helen Haskell, BMJ 2023)]

Such systems do not address problems of overcrowded wards, lack of beds, delayed assessments, poor nurse:patient ratios etc… Perhaps don’t appreciate informal senior discussions that happen all the time. Potential for delays in appropriate treatment if process of getting second opinion interferes with management?


“I’d like to imagine a world in which Martha was transferred to intensive care in time and her life was saved.

In this parallel universe, I talk endlessly about the doctors and nurses who helped herI go on a fundraising walk for the hospital.

Bright and determined girl as she was, Martha aces all her exams, goes to university, has a career and children.

She visits us at weekends and we recall those distant weeks when she was in hospital.”

Mrs Mills

Rights based participation

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”.

Trust in organisations

“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.

[Jonathan H. Marks, Hastings Centre]

Moral Distress

Moral distress – when you feel an internal moral compulsion to act a certain way but cannot do so because of external constraints. Your morals are usually guided by ethical principles, such as beneficence and autonomy, as well as by professional virtues. Moral injury is the result of repeated experiences in which individuals act or witness actions by others that are incongruous with their moral beliefs.

The negative emotional consequences of moral distress and moral injury are depression, decreased quality of life, and burnout.

Examples are where organisational or legal rules restrict clinical practice – eg access to abortion in the US being restricted after Dobbs vs Jackson Women’s health organisation decision.

One way of dealing with moral distress is to continue practicing the professional virtues of integritycompassionselfeffacementself-sacrifice, and humility while maintaining patients’ best interests.

Self-effacement and self-sacrifice are the virtues that say that your wishes/feelings may need to come second to some greater good. May be uncomfortable, but doesn’t mean you are doing wrong.

Humility is the idea that what you think/believe isn’t necessarily right, and certainly won’t be right for everyone. So acting against your own morals is sometimes necessary when you are taking into account other people’s views.

Discussing these issues and feelings with colleagues will always help. Seniors should promote and cultivate a positive culture where less experienced feel able to talk openly about their feelings and identify their moral distress, frustration, and outrage without fear. Professionalism means inviting others to listen and being willing to speak openly about the constraints of practice.

Ultimately, the ideal would be compassion but without overidentification with or indifference to our patients’ plight. This is of course harder for those who may have experienced discrimination (lower socioeconomic groups, women, and racial or ethnic groups historically underrepresented).

DOI: 10.1097/ACM.0000000000005476 

Fairness

Raanan Gillon campaigned successfully for fairness to be added to the World Medical Association’s International code of medical ethics (with respect to both patients and professionals).

It therefore joins beneficence, non-maleficence and respect for autonomy as one of the cardinal principles (Beauchamp and Childress).

What fairness means is debatable, however. And these different principles can conflict.

But it still has value as a way of analysing ethical problems. Hopefully in advance of the problem becoming real for someone.

Aristotle’s theory of justice or fairness is a good place to start – “equals should be treated equally” is straightforward, but it also includes “unequals should be treated unequally, in proportion to their inequalities). In other words, some people may need to be treated differently (“unequally”) because they need the treatment more.

Circumcision

Still routine practice in many parts of the world, including the USA. Last figures I can find suggest 56% of US boys circumcised, with higher rates among non-Hispanic white boys, which is down from previous decades.

The Royal Dutch Medical Association declared in 2010 that male circumcision as routine practice or for religious reasons is medically unjustified and therefore an abuse of the rights of the child.

In 2013 the Children’s ombudsmen of the Nordic countries proposed a ban. In Sweden it is illegal in the first 2 months of life, following a death from complications in 2001 (an attempt at an outright ban was watered down).

In the UK there have been legal cases where parents have disagreed on their son having the procedure.

Trials in Africa suggested that circumcision might help prevent spread of HIV (38-66% reduced risk). South African president Jacob Zuma made a point of getting circumcised, to encourage others.

Risks are low in neonates cf adults.

Muslim and Jewish cultures see it as part of cultural identity, of course.

Faye Hawkins case

A consultant paediatrician who received a formal warning from the GMC for missing a case of fatal appendicitis.

Found that she failed to consider possible underlying serious cause for fever, and that lethargy and mildly elevated heart rate are “red flags”. But actually, they are not – common and poorly predictive, and not in NICE Fever in under 5s table. Patient was 5 already, anyway. Did not flag on Sepsis tool.

Also found that she failed to examine again or look for other possible red flags when she discharged Elspeth from hospital; failed to adequately advise parents on how frequently they should monitor her temperature and pain symptoms; and failed to record the advice given in the notes.

British association for general paediatricians complained that the pressure of the acute unit were not taken into account, but GMC response was that tribunal (which is independent from GMC) took this into account, although they could not agree on what standards for a “reasonably competent clinician” could be applied!

Medical Professionalism

“We teach good communication skills because we accept not everyone has them. But we also need to teach professionalism… We’re happier to challenge poor clinical skills, or to point out a gap in knowledge, than to have a conversation about behaviour or attitudes.”

“We expect learners to improve and progress.  So, by implication, they’re not perfect professionals: they can make mistakes.  It gives people permission to say, “That doesn’t look professional”.”

“We need to work on accepting  constructive feedback for unprofessional behaviours… We want a positive culture, where we teach people to speak up to promote professionalism.”

[Sheona MacLeod, BMJ 2020;368:m768]

Easier to spot when people are being unprofessional than to teach professionalism!

Which makes me think the issue is conflicting values/priorities rather than not knowing what is “good medical practice”.

So dress codes become an issue when someone’s need to express their individuality or fit in with their peer group clashes with public perceptions of what a health care professional should look like.

Or someone complaining about their work place on social media is wanting to assert their independent spirit even as an employee, perhaps also their right to self expression and to attract “likes”.

And professionalism is clearly performative. We can swear all we want in our heads, but to swear out loud (in most cases) would be considered inappropriate. Which also potentially makes class an issue.

Expectations (of the public but also our peers) change over time. Consider suits, white coats, ties, scrubs. Consider also #medbikini twitter controversy – an article by men describes social media posts of women doctors in bikinis as potentially unprofessional.

Rosenthal 2011 – humanism and professionalism student module included blogging about clerkship experiences, debriefing after significant events, and discussing journal articles, fiction, and film. Main focus however was on empathy.

Scott Oliver and Kathleen Collins described differences in attitudes between medical school students which appeared to suggest a hidden curriculum. Students with more knowledge focus failed to identify potential issues of confidentiality, ethics or trust. Students who had not explored such issues struggled to know how to approach such issues even if they did recognise them.

Definition is probably best medical practice but also the duties and responsibilities of being an employee. High level morals/values (as in GMC good medical practice) are uncontroversial but also hard to then produce policies from (and which can then be defended in court when issues arise).

Clearly some personalities can be more playful, or disagreeable, which are not necessarily negative (cf engaging, whistleblowing) so perhaps more about defining the outer limits rather than homogenizing behaviour.

Surveillance capitalism; social dilemma documentary (mental health declines with higher use; disinformation campaigns; extremism encouraged by algorithms)

Social media is performative (Erving Goffman – the presentation of self (name of his book), life as theatre (metaphorically- although some say actual)). 

MedTwitter – now X of course 

Human face vs personality cult and influencers

Social media hygiene. 

Modelling in absence of “official” voices. 

Self curation of brand. Bordieu’s social capital. 

How to teach?

Learn through active reflection on work based learning (cf how artificial PBL etc are).  Think about values, how they shape communication.  Modelling of democratic values.  Appreciation of complexity of communication.

[ Alan Bleakley, Peninsula medical school – Homer as evidence of honour/shame/face directed behaviours, cf feminine, guilt directed behaviours etc]

“We teach good communication skills because we accept not everyone has them. But we also need to teach professionalism… We’re happier to challenge poor clinical skills, or to point out a gap in knowledge, than to have a conversation about behaviour or attitudes.”

“We expect learners to improve and progress.  So, by implication, they’re not perfect professionals: they can make mistakes.  It gives people permission to say, “That doesn’t look professional”.”

“We need to work on accepting  constructive feedback for unprofessional behaviours… We want a positive culture, where we teach people to speak up to promote professionalism.”

[Sheona MacLeod, BMJ 2020;368:m768]

Medical Humanities

In education, Johanna Shapiro has done interesting work, for example including relevant poems into objective structured clinical examinations (Female, by Ingrid Hughes, about a woman facing a probable diagnosis of breast cancer; Dear Left Knee by John Davis; Back Pain, by Ingrid Hughes; Night on Call, by Dr Rita Iovino). A large proportion said they felt it increased empathy, and had a significant effect on how they might present bad news, on the ultimate treatment plan. Most felt the Night on call poem helped gain perspective. [Medical Education 2005]

In the same paper, adding some readings led students to say (in 1/3 to 2/3 of cases) that they would be more likely to take into consideration psychosocial insights, or that it increased some dimension of empathy for the patient, including helping them take the patient more seriously.

Themes written by doctors or medical students are commonly about the rewards and stresses, relationships, role models, death, the meaning of life – things not directly addressed in the curriculum.

The quality is less important that the utility to a particular audience.

[BMJ 2010]

Racism in Medicine

Infant mortality for black babies in US double that of white babies.

Newborn mortality in Florida for black babies under care of black doctors 58% lower than those under white doctors. No difference for white babies. Still not as good as white mortality though.