All paediatricians are complicit in delivering a racist healthcare service

Cite this article as:
Zeshan Qureshi and Anna Rose. All paediatricians are complicit in delivering a racist healthcare service, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.33938

We’re supposed to be the nice ones. The friendly, fun, caring and supportive speciality – right? We’re the ones who have teddies on our stethoscopes and know all the words to Disney songs. In the hospital, we’d like to think we’re the Good Guys – but maybe we’re not when it comes to race. 

The COVID-19 pandemic has been a monumental challenge to the NHS and has, undoubtedly, showcased the everyday heroism of our staff. It has also thrown a sharp light onto the ongoing racial inequalities in our society and healthcare systems. Racial disparities in the pandemic have been widely documented – and make for sobering reading. Analysis of national hospital data suggests that people of black and other minority backgrounds are up to twice as likely to die from the virus, as compared to white Britons – with some groups, such as black African-born men living in Britain, having an even higher risk [1]. Despite this, we have little doubt that the major impetus for the unprecedented emergency measures, national lockdowns, and political obsession was not the deaths of the poor, the ethnic minorities, or those in low and middle-income countries – but the perceived threat to wealthy, predominantly white, Westerners.

In an eerie parallel to the racial inequalities highlighted by the pandemic, the past year has also seen racial tensions in the USA reach boiling point. Following several high-profile incidents of police brutality, there was an eruption of social unrest and protest in America and around the world. The systemic disregard of black lives is not just written in blood on American pavements. It is written into the systems that surround us in our everyday working lives. As a speciality, and in the NHS as a whole, we must confront these engrained systemic inequalities, if we are to provide truly equitable care to all of our patients. 

In this blog series, we will examine how clinical outcomes for common paediatric conditions are worse for children from minority ethnic backgrounds. Stillbirth, low birth weight and preterm birth are all more common in minority groups as compared to white northern European populations [2,3,4 ]. Outcomes for common chronic conditions, such as asthma and type 2 diabetes, are also worse for children within minority groups [5,6]. This could be because care received by children with chronic conditions is worse. Non-white children with renal failure are less likely to pre-emptively receive a renal transplant, for example [7]. There are also complex social and environmental roots to these adverse health outcomes – such as increased poverty in non-White groups [8] — and we will try to investigate these issues in more detail. 

We will also explore how paediatrics has normalized white Northern European genetics, physiology and behaviour, leading to biased clinical decision making. Normalization of one ethnic group has lead to the classification of other normal values (in both the laboratory and social sense) as pathological or inappropriate. In other words – you are only normal if you are white and normal. Neutrophil counts are often lower in black babies [9]. Rather than reporting ethnically normal ranges babies often end up having multiple blood tests due to a lack of awareness of the variation. Parents get told that their neutrophil count is low, but it’s acceptable for a black baby (rather than categorically stating that their count is normal). Worst still, it might be classified as a disease – benign ethnic neutropenia – despite not being associated with increased morbidity or mortality.

Within medical education, we are guilty of peddling irrelevant and outdated racial and religious stereotypes. These hold little educational value, but risk enforcing dangerous bias within our future doctors. Any paediatrician would be able to tell you about the association between Tay-Sachs disease and Ashkenazi heritage, or sickle cell disease and sub-Saharan Black Africans. Such associations are often over-simplified and over-emphasized, to the point of creating a disease-ridden caricature, particularly in exam questions. Most of these stereotyped conditions are very rare, and over-emphasis during medical school risks blinkering us to more common diagnoses. We’ll explore how racial bias is ingrained in medical education in the UK, and try to come up with some ideas on how we can improve MedEd to be more diverse and inclusive in the future. 

There also seems to be a disproportionate concern that those from Muslim backgrounds might be consanguineous, and that we need to ask about this even when it is not relevant to the presenting complaint. Conversely, when genetic testing is being sent off, a detailed family tree needs to be drawn. It should include details of any consanguinity – yet it seems that a white family is less likely to be asked. As first or second cousin marriages are no longer a social norm in the UK, they have become defined by pathological associations with genetic conditions, such as inborn errors of metabolism. And whilst there are, of course, differences in the prevalence of disease alleles in different populations, and an increased risk of recessive disorders in families with intergenerational consanguinity, it does not automatically follow that a child from a Muslim background has a recessive disorder, or that a white British child does not. The same considerations need to be given to other cultural practices that might be different to the social norms of Northern and Western Europe. Putting children on a vegetarian diet is often classed as a ‘restrictive diet’ – despite the fact that it is only restrictive based on traditional Western standards – and might, in fact, hold health benefits [10]. 

Finally, in our series, we will examine how systemic racism within the health service tolerates – and sometimes even facilitates –  the unacceptable behaviours demonstrated by some parents. One thing that sets paediatrics apart from adult medicine is that patients are almost never seen alone, and a parent is often required to deliver care. This can present a dilemma to staff when confronted with a racist parent. Any punishment directed towards the parents might directly harm their child. We will explore how guidelines should be developed to help clinicians handle racist parents, whilst minimizing the effect on the clinical care of our patients. 

It can be painful for us – as individuals and as a speciality – to consider that we might be complicit in a racist system that ultimately leads to poorer health outcomes for some children. Just because something is painful, does not mean we shouldn’t do it. We hope that you’ll join us for this series of short articles, as we try to explore how we can begin to move from a white-centric healthcare system to a child-centred one.

James Baldwin quote on racism

Selected references

1) The IFS Deaton Review. Are some ethnic groups more vulnerable to COVID-19 than others? 

2) Gardosi J, et al. (2013). Maternal and fetal risk factors for stillbirth: population-based study. BMJ 346:f108.

3) Kelly Y, et al. (2008). Why does birthweight vary among ethnic groups in the UK? Findings from the Millenium Cohort Study. Journal of Public Health, 31:131–137.

4) Aveyard P, et al (2002). The risk of preterm delivery in women of different ethnic groups. British Journal of Obstetrics and Gynaecology 109:894-899.

5) Asthma UK (2018) On the Edge: How inequality affects people with asthma. Available at www.asthma.org.uk

6) RCPCH (2020) State of Child Health: Diabetes. Available at www.rcpch.ac.uk

7) Plumb LA et al. (2021) Associations between Deprivation, Geographic Location, and Access to Pediatric Kidney Care in the United Kingdom. CJASN. 16:194-203.

8) Office for National Statistics (2020) Child poverty and education outcomes by ethnicity. Available at www.ons.gov.uk.

9) Haddy TB, Rana SR, Castro O. (1999) Benign ethnic neutropenia: what is a normal absolute neutrophil count? J Lab Clin Med. 133:15-22.

10) Kalhoff H. et al (2021) Vegetarian Diets in Children—Some Thoughts on Restricted Diets and Allergy. International Journal of Clinical Medicine. 12:43-60.

Ethical considerations and decision-making about the resuscitation of very sick children

Cite this article as:
Karen Horridge. Ethical considerations and decision-making about the resuscitation of very sick children, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.30898

You wouldn’t judge a book by its cover, would you?

When thinking about the knotty matter of decision-making about resuscitation of sick children, we need to remember:

Every child’s life matters.

To always listen to the child, their parents and those who know the child best and include them in best-interests decision-making.

To always make decisions within an ethical framework and record the process of decision-making and who was involved.

To ensure pathways are in place to record and make visible best-interests’ decisions about levels of intervention.

So, what can help us with an ethical framework? Our friends at the General Medical Council have laid this out for us, in ‘Treatment and care towards the end of life: good practice in decision-making’.

Covers of GMC guidelines

This helpful document reminds us that:

  • Equalities, capacity and human rights laws reinforce our ethical duty to treat all children, neonates and young people fairly. 
  • We must always listen to child, parents and others close to them. We must take account of their views. Where there are different views, our primary duty of care is to the child.
  • Decisions must always be in a child’s best interests. 
    • We should weigh benefits, burdens and risks of treatment. 
    • We should consider all relevant factors in the decision-making process.
  • Decisions must start from a presumption in favour of prolonging life.

When making decisions, even in a dire emergency, we are reminded to:

  • Take account of up-to-date, authoritative clinical guidance.
  • In case of uncertainty, seek further expert opinions early.
  • Explain, justify and document all factors considered in decision-making.
  • Not rely on personal values when making best interests’ decisions.
    We must be careful not to make judgements based on poorly informed or unfounded assumptions about the impact of disability on the child or young person’s quality of life. 

So, you wouldn’t judge a book by its cover, would you?

Disabled children and young people come in all shapes and sizes. We can’t all be experts in each child, which is why it is so important for us to listen to parents and those who know the child best.

Please do beware of falling down the rabbit hole of preconceived ideas about what a child’s quality of life is like – always ask parents and familiar carers what the child is like when well. They may have photos and videos they can show you of their child having fun and taking part in everyday activities.

Disabled children may appear, sound and behave differently when unwell. This may be because they cannot tell you where it hurts or how they feel. They may present with behaviours that others may see as challenging. They may not tick the expected boxes on the usual screening tools, for example, for sepsis. Their temperatures may be low when you might expect them to be high, they might have high or low heart rates and may not be able to mount the expected increased work of breathing, because their respiratory muscles may be too weak for them to do so. Their control centres may not work as expected.

Hasty decisions based on preconceived ideas can lead to poor outcomes, including premature death. None of us want that.

So, what’s all this about premature death in people with learning disabilities?

If you are ready for a shocking read, then take a look at Death by Indifference, written by Mencap in 2006, but just as relevant today.

If you prefer some e-learning on the subject, take time to work through the Disability Matters session: Equal Access to the Best Health Outcomes Matters. This was co-produced with disabled children, young people, parent carers and other experts.

Then there’s the Confidential Inquiry into Premature Deaths of People with Learning Disabilities report. This report showed that women and men with learning disabilities die 29 and 23 years, respectively, sooner than women and men without learning disabilities.

So what about children? The series of reports on Why Children Die show that more than half of all children who die in England have a pre-existing, life-limiting condition. So, we all need to pay great attention and ensure we achieve the very best outcomes for these children and all children.

The team at Bristol University have built on the work they did for the CIPOLD report and now lead on the Learning Disabilities Mortality Review (LeDeR) programme. This links to the Child Death Review programme and considers the circumstances of every death of anyone with a learning disability at any age. The latest annual report can be found here.

Between 01/07/2016 and 31/12/2019, 516 children aged 4-17 years were notified to the LeDeR programme. Of these children and young people who died, 43% were from Black and Minority Ethnic groups. 46% had profound and multiple disabilities.

Whilst 7% of the deaths reported to the LeDeR programme were of children and young people aged 4-17 years, the death rate overall in the 5-19 years age group in England was 0.3%.

The LeDeR programme 2019 report highlights good and problematic practices that the multidisciplinary team, including people with learning disabilities, identified.

Good practices included:

  • Good care coordination across agencies and specialities
  • Excellent end-of-life care
  • Person-centred care, adjusted as the child or young person’s needs changed

Problematic areas of practice to reflect and learn from included:

  • Delays in responding to signs of illness or investigating illness.
    • This is known as ‘diagnostic overshadowing’, where clinicians may see the disabilities and think all presenting signs and symptoms can be explained by those, rather than undertaking a careful and structured clinical assessment to identify the underlying cause, such as pain from appendicitis, constipation, sepsis etc.
  • Poor quality multidisciplinary team working.
    • The needs of disabled children and young people are usually multifaceted and require a range of expertise to adequately assess and address them all.
  • Poor advanced care planning. 
    • Clinicians can be reluctant to have those difficult conversations with families about the risk of both sudden and unexpected death and also the risk of deterioration and death. We all need to do better on this.
  • Problems with the direct provision of care.

Recommendations from the LeDeR report included:

  • Identification of a key worker to coordinate care and communication for disabled children and young people.
  • Timely advanced care planning embedded in care pathways and clinical practice, responsive to changing needs.
  • Better discharge planning and better community support.
  • Consistent support and communication throughout each child’s life.

So where is the evidence about what parents think about end-of-life decision making? Dr Sarah Mitchell is a GP who is really interested in this and has written a useful paper in BMJ Open on the subject.

Sarah and her team interviewed parents and reported that:

  • Parents have significant knowledge and experiences that influence decision-making process
  • Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions
  • Verbal and non-verbal communication with healthcare professionals impacts on the family experience.
  • Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a
    ‘place of acceptance’
  • Families perceive benefits to receiving end of life care for their child in a PICU 

With regard to the last statement, preferred place of death is, in my experience, different for each family. Some choose home, others need to know that no stone has been left unturned right to the end, so choose intensive care. Whilst this may not always sit comfortably with paediatric intensive care teams, for some families it is what is needed to bring them peace in their journeys of grief. I have been witness to what I would consider to be ‘good deaths’ in a wide range of settings, including homes, hospices, children’s wards and intensive care units over many years. What matters most and what families remember, are how the child’s needs were identified and addressed at every step and how they are families were kept in the loop about what was happening, including being fully involved in all decision-making.

Smiling boy with disability
Matthew

It’s all well and good listening to my views as an experienced disability paediatrician on the subject, but much better to hear directly from a mother who has been on the advance care planning journey. Here are Kay’s words, describing her and her family’s journey with her son Matthew. If you prefer to hear her speaking directly, please check out the Disability Matters e-learning session Advance Care Planning Matters.

Kay says:

“Matthew had quite severe learning and physical disabilities. He was a very complex child and we used the Emergency Health Care Plan to help plan for the future and to enable us to communicate fully with other health professionals in the healthcare setting. 

Matthew didn’t have the capacity to actually make decisions for himself although he was a very wilful little boy who had very clear likes and dislikes, so he could make decisions for himself that were relevant to his day to day needs like what he wanted to eat, where he wanted to go. He had no formal communication, but as parents and the people who were involved with him we learned to read what he was trying to tell us, and as I say, he was very clear on what he liked and disliked doing but wouldn’t have been able to make the kind of big decisions that as parents we were responsible for making for him.

We did have a very large team involved in Matthew’s care and we discussed the Plan with his consultant paediatrician but she also took into account the views of people like the occupational therapists, physiotherapists, the surgeons who were dealing with him as well as the parents, myself and Matthew’s dad. We were all involved in the discussions around the development of the Plan and what was in his best interests.

Matthew’s Health Care Plan went everywhere with him and it lived in his communication bag on the back of his wheelchair. So it went with him to school, to his respite and to his dad’s house when he was there and also it was with him whenever he needed to go into hospital.

The Emergency Health Care Plan actually protected Matthew’s rights should he ever become seriously unwell. It clearly stated that he needed full resuscitation and any treatment that was available to him and clinicians then could use the plan to make judgments on what treatment would be necessary but he was able then to access a full range of treatment that would be available to any other child in a similar circumstance.

Matthew was very well for the early part of his life but when he turned 11 he had an accident, a quite serious accident and we were able to use the Emergency Healthcare Plan to access full range of medical interventions for him, as a result of that he did end up in intensive care for the first time. After that we did go through a period when he was 12 he had a twisted bowel, so he was literally in and out of intensive care and needed to be resuscitated on quite a few occasions, unfortunately, but his plan enabled us to access all of this medical intervention for him and saved his life in that instance.

Over a period of about a year, Matthew became more and more unwell. He needed regular trips to Intensive Care and regular trips to the hospital. The Plan actually went with him to hospital in Newcastle. It gave us the assurance that during these periods of Matthew being very, very poorly that the doctors in the hospital that weren’t used to dealing with Matthew, the Plan gave them all the information so we didn’t have to go through it every time that he was admitted. They trusted what we were saying because it was backed up by the Plan”.

Matthew’s paediatrician says:
“Matthew developed a lot of new symptoms that were unexplained; his seizures were becoming less controlled and we needed discussions around how we were going to treat these new symptoms as and when they appeared and what needed to be done for them.

So at this point in time, having taken account of the views of both of Matthew’s parents and the whole of the multidisciplinary team, we made a decision in his best interests that, at that time, further intrusive procedures or further intensive care was not going to be helpful or appropriate for him and might cause him further distress. So, together, we changed the wording on Matthew’s Advanced Care Plan at that time to reflect the possibility of him being allowed a natural death when his time came, recognising that we would always be there to manage his symptoms and always be there to support his family”. 

Kay continues:
“Matthew had had a chest infection and was having great difficulty breathing and his dad brought him up to hospital. We called all the family, it was obvious that Matthew was dying at this point. We had all the family called from all corners of the UK to come and say goodbye to him. We sat for hours and hours with him in the hospital ward and he was almost pronounced dead when all of a sudden, he decided it wasn’t quite his time and he took a great big breath and started breathing normally and all his colour came back. His dad described it as, like, “re-booting” his system as he wasn’t on any treatment. He was having no medication or anything and he just decided “No, it’s not my time. I’m going to come back” and we had him for another five weeks after that.

Then one day, approximately five weeks after the “re-booting” incident, Matthew wasn’t very well at all. He was due to see his paediatrician in clinic that day, but I phoned and said that “I don’t think he’s up to actually travelling to hospital,” so the paediatrician agreed to visit at home, so we waited. He’d had a massive seizure. I’d had to give him medication to bring him back from the seizure. When his paediatrician arrived, it became obvious that he was deteriorating very, very quickly and we decided that we were just going to keep him at home and see what the outcome would be, whether he would “re-boot” again or how it would play out this time”.

Matthew’s paediatrician continues:
“So Matthew was really very frail on clinical assessment at this point, so I needed to put in place the right procedures to make sure that his needs were met and the family’s needs were met. He was very peaceful and he was essentially drifting off to sleep. He didn’t have any difficult symptoms at that point that needed any changes in medication or changes in his Plan. What we did at that point is I made arrangements for if Matthew was to slip away in the night, a colleague to be able to come out and support the family and to confirm his death at that point. I also contacted the Coroner, because our Coroner liked to know in advance about any child’s death and if there is a death that is likely to be expected as defined under the Child Death Review Procedures, then our Coroner liked to know in advance. So, we made all of those arrangements and let the family have their special private time together”. 

Kay reflects:
“We spent quite a few hours with Matthew – we called close family this time around. We didn’t get everybody coming from the far end of the country to be with Matthew. So, the time when Matthew did die, it was very, very peaceful. We had some quality time with him. We had a wonderful five weeks planning memories, planting memories for the other children and we spent those few hours reflecting on that and talking and supporting each other through the inevitable outcome of Matthew dying in the early hours of the morning.

We found that, when dealing with the professionals around Matthew’s death, that being able to change the wording of the Emergency Health Care Plan it kind of validated for us that what we wanted … we wanted Matthew to be peaceful and at home when he died, surrounded by his toys and his family. We felt that the Plan, when we read the wording of it, was quite a shock to see that he should be allowed to ‘die with dignity’ but it validated what we were feeling, that it gave us permission to ask that he could die at home where we wanted him to be. It made us feel that we weren’t asking for anything that was out of the ordinary or not possible and felt that we were actually more in control of the situation when the time actually came for Matthew to pass away”. 

Achieving a supporting a child or young person through a good death is an important part of our job, when death is inevitable. We need to ensure we always steer the best possible course through the tricky waters of decision-making, protecting the rights of all children and young people to the best possible outcomes.

So, back to the key messages

  • Every child’s life matters.
  • Always listen to the child, their parents and those who know the child best and include them in best-interests decision-making.
  • Always make decisions within an ethical framework and record the process of decision-making and who was involved.
  • Ensure that pathways are in place to record and make visible best-interests’ decisions about levels of intervention.

If you want to read more about advance care planning, look at:

Horridge KA. Advance Care Planning: practicalities, legalities, complexities and controversies. Arch Dis Child. 2015;100:380-385

If you want to see and hear examples of the conversations that underpin advance care planning, more free e-learning can be found here:

https://councilfordisabledchildren.org.uk/our-work/health-and-wellbeing/practice/emergency-healthcare-plans

To listen to discussions between paediatricians and a parent about signs of sepsis in disabled children, tune in to Episode 4 of the RCPCH sepsis podcast series here.

Thank you for your time and all the best for your advance planning and decision-making.

A wrinkle in time: Kerry Woolfall at DFTB19

Cite this article as:
Team DFTB. A wrinkle in time: Kerry Woolfall at DFTB19, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.21185

Kerry Woolfall is a social scientist and senior lecturer at the University of Liverpool. This talk, our second from the PERUKI track, she talks about doing research without prior parent and patient consent.  Following legislative changes in 2008 it is now possible (in the UK at least) to enter a child into a trial of potentially life-saving treatment then seek consent after the fact. But how would parents react to this? How would clinicians? What would happen if a child died during the trial, as may understandably occur if we are looking at potentially life-saving interventions?

This talk is not just about a researchers point of view but also details Kerry’s experience from the other side of the clipboard as a NICU parent.

The research embodies a core principle of engagement.

 

You can read some of the research here.

 

Woolfall K, Young B, Frith L, Appleton R, Iyer A, Messahel S, Hickey H, Gamble C. Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting. BMJ open. 2014 May 1;4(5):e005045.

Woolfall K, Frith L, Gamble C, Gilbert R, Mok Q, Young B. How parents and practitioners experience research without prior consent (deferred consent) for emergency research involving children with life threatening conditions: a mixed method study. BMJ open. 2015 Sep 1;5(9):e008522.

 

You can follow Kerry on Twitter here.

 

 

#DoodleMed below by @char_durand

 

This talk was recorded live at DFTB19 in London, England. With the theme of  “The Journey” we wanted to consider the journeys our patients and their families go on, both metaphorical and literal. DFTB20 will be held in Brisbane, Australia.

If you want our podcasts delivered straight to your listening device then subscribe to our iTunes feed or check out the RSS feed. If you are more a fan of the visual medium then subscribe to our YouTube channel. Please embrace the spirit of FOAMed and spread the word.

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Vicarious Trauma : It’s ok to not be ok

Cite this article as:
Jasmine Antoine. Vicarious Trauma : It’s ok to not be ok, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.19256

One afternoon my team broke the news to three different families that their children had a non survivable condition. That same week I was involved with a patient transitioning to a palliative pathway focused on comfort. I returned home to utter the words, “She is so sweet, I hope she dies soon.

For many of us, days like these, occur commonly.

Being a doctor is a privilege, an honour, a calling. Our jobs are stressful, diagnostically challenging, involve managing team members, and effectively communicating and engaging with different families whom have different needs. We are reliant on our knowledge and skills. What sets our job apart from other high stress environments is that any given day can involve death and dying. We see distressing conditions. Our day includes the uncommon, the unlucky and the unfortunate events of life. To the public these events occur few and far between, but for us it may be a daily occurrence -a relentless barrage of traumatic events, poor outcomes and sad stories.

The intensive care environment is difficult to navigate. The rates of burnout, mental health issues and self medication are high amongst our peers. 70% of junior doctors feel burnt out following a neonatal rotation. Strikingly, their (our) rates of suicide are twice that of the general population. Most of us have heard the words compassion fatigue. Some of us may even be familiar with vicarious trauma – the negative experience of working directly with traumatised populations. Compassion fatigue and vicarious trauma are on a spectrum. We initially may feel overwhelmed by our interaction but this can develop into symptoms of post traumatic stress.

At DFTB18, I spoke about some of the things we can do to reduce this happening to us, and the events above reinforced that message;

  • Seek the support of those around you.
  • Reflect with your supervisor.
  • Get together with your team to debrief.
  • Seek professional psychological support.
  • Foster a culture in your workplace that is supportive and open, whilst also taking time for yourself.
  • Make a regular appointment to see you GP.

And remember, it’s ok not to be ok

For more on this topic of the difficulties of dealing with death and burn out hit up DFTB at:

Burning out by Mark Garcia

A short story about death by Andy Tagg

Selected References

Boss RD, Geller G, Donohue PK. Conflicts in Learning to Care for Critically Ill Newborns: “It makes me question my own morals”, Bioethical Inquiry. 2015;12:437-448

Hauser N, Natalucci G, Ulrich H, Sabine K, Fauchere JC. Work related burden on physicians and nurses working in neonatal intensive care units: a survey, Journal of Neonatology and Clinical Pediatrics. 2015;2:2:0013.

Nimmo A, Huggard, P. A systematic review of the measurement of compassion fatigue, vicarious trauma and secondary traumatic stress in physicians. Australian Journal of Disaster and Trauma Studies. 2013;1:37-44.

Stress, burnout and vicarious trauma: looking after yourself. RACGP Webinar Series.

The illusion of patient choice

Cite this article as:
Amit Bali. The illusion of patient choice, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.19010

“Pick a card…any card”, as the saying goes.

I remember being the recipient of this common trick when a medical student, at a friend’s for dinner where a magician was a fellow guest. The scientist in me wanted to know how it was done, so I prepared to follow my card studiously. I chose carefully and deliberately, feinting to pick one card from the fan offered to me, before choosing – in my eyes – a less obvious card. However, after returning the card to the deck, the magician threw his arms up with a flourish, the pack hitting th eceiling with a thud, causing cards to scatter across the room. Amazingly, my chosen card was stuck to the ceiling, fixed in place by a drawing pin.

I made peace with the fact I was always going to choose that card, and applauded in awe.

 

The ‘magician’s choice’

A few years ago, during a lecture, I was introduced to the concept of the‘magician’s choice’ by Daniel Sokol (a medical ethicist and magician). He used it as an innovative analogy to illustrate how, in obtaining consent, the presentation of the different options is nothing like the free choice it is intended to be. Rather, the possibilities are presented, much like a deck of cards, only this time the ‘trick’ is that the clinician– whether consciously or not – weights information, making a certain choice more likely. I was reminded of this concept recently, after reading about a new app due to be rolled out in the English National Health System. This new platform, it is claimed, will enable patients to see waiting times at different emergency departments, the implication being that they will choose to go to the one with the shortest wait. Unsurprisingly, this sparked Twitter debate about whether or not this actually was a useful tool to help patient flow, with strong opinions on either side.

To my surprise, however, the assumption from everyone seemed to be that this app would offer choice. To which my first thought was: ‘choice, what choice?’

 

Patient choice?

For many years, the NHS has offered explicit patient choice for specialist outpatient care, offering a range of different hospitals at the point of referral. In recent years, the system has evolved to display waiting times. Sounds good so far? To an extent, I agree. A transparent system that allows patients, in conjunction with their GP, to book in to an appointment – even obtaining a date and time – is a pretty simple but effective use of technology. My objection is that the offered choice is nothing but an illusion.

The patient is given little idea of the constraints through which their choice is being made. As an example, many of the children I see have a long-term condition (epilepsy). Effective, joined-up care is much more than a quick hospital consultation, achieved through a combination of having a point of contact via their specialist nurse, close liaison with school, tracking of development progress, and surveillance of mental health and wellbeing. This is best achieved through local, networked care, a system which has been carefully developed over many years.When I see a patient outside this framework, the care is not just difficult to deliver – in what is far from a delicious irony, it actually gets delayed. When I have to inform families that ‘I can’t access that information’, ‘they won’t accept that referral from me’, or ‘our nurse doesn’t cover that area’ (all recurring themes from my practice over the last year), I empathise with the fact that they took a decision that they thought would get quicker access to care for their child, only to now discover that delay was just shifted further down the road. There are potential ways around this – not least patient record systems that speak to each other. Yet that sort of change doesn’t happen overnight so, until it does, surely patients deserve better? Until then, this resembles the ‘three cup and ball’ trick. The patient believes they have options, when actually the system is too constrained to offer the truly free choice that is advertised. No matter how much you try to pick the cup with the ball under it, the pieces move and the magician ensures you never can.

Legal and Ethical Quandaries: Ian Summers at DFTB18

Cite this article as:
Team DFTB. Legal and Ethical Quandaries: Ian Summers at DFTB18, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.18919

When most of us think of ethics and law our eyes roll and we picture Rumpole of the Bailey and quiet Sunday afternoons in front of the television. But his time Ian Summers came up with something unique. Pushing the boundaries of simulation as an educational medium he introduced us to a series of hypotheticals. Take your time to watch rather than just listen to your iDevice. You’ll learn about ethical practice in paediatrics but if you pause, take a step back, and press play again, you’ll see a masterclass of simulation in action.

 

 

 

This talk was recorded live at DFTB18 in Melbourne, Australia. With the theme of ‘Science and Story‘ we pushed our speakers to step out of their comfort zones and consider why we do what we do. Caring for children is not just about acquiring the scientific knowhow but also about taking a look beyond a diagnosis or clinical conundrum at the patient and their families.

 

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I fought the law…

Cite this article as:
David McDonald. I fought the law…, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.17508

I recently attended my forty-year post-graduation reunion – I graduated from Sydney University in September 1978. It was a cheerful night and great to see old friends.  I am still recovering from the humiliating ritual of dancing the Village People YMCA number. (I was the cowboy).

There has been a lot of awareness about medico-legal matters among junior doctors since the Bawa-Garba case. I thought I would share a retrospective view on some aspects of my personal experience interacting with the legal profession over a long career. The medico legal area is so complicated that I will not comment upon specifics other than saying that joining a Medical Defence Organisation (MDO) is essential for any practicing doctor. MDOs know stuff that you will never know.

 

Choosing a Medical Defence Organisation

Choosing a MDO that suits your needs is one of the most important decisions you will make during your career. The decision should be considered carefully as not all insurance companies are the same. I recommend a Mutual Defence Organisation (MDO) that is not necessarily a part of a large commercial insurance company.  I have remained with the same company very successfully with all the ups and downs for over forty years.  A good Mutual Defence Organisation has the commitment to care about the doctor’s personal welfare as well as the other legal matters. The good ones have experienced and sympathetic medical advisors, and you will need their emotional support as well as expertise if things get sticky.

A public hospital has its own insurance to cover claims for financial compensation made by patients against it. Legally, the employer hospital is liable for its employees, so the cover extends to resident staff. But such staff may be the subject of other, personal, types of legal situations such as HCCC complaints and coronial inquiries and whatever help the hospital may provide is discretionary. You cannot assume that the hospital will provide representation for you personally. A colleague of mine had assistance denied only a short time before an inquest where his management was a focus of attention. An MDO will provide assistance in these other legal situations.

 

How do you manage if you hear that you are being involved in a legal matter?

 This is one of the most stressful things that can occur for a doctor so be prepared in advance. Step 1 is to find a good experienced mentor that suits your personal style as early as possible in your career and before bad stuff has happened. There are differences between a supervisor and a mentor. A supervisor is appointed by the hospital administration, whereas you can choose your own mentor. Accordingly, a mentor is a better fit for your personality and aspirations. Sensible mentors recognise that being asked to mentor a junior colleague is a compliment in the Hippocratic tradition, and don’t mind helping when approached. You don’t have to propose formally.

If you do hear that you are being involved or sued, contact your MDO immediately. You will need emotional support from understanding contacts like your mentor or peer colleagues. This support may come from your partner; however non-medical partners may not understand the paradigm completely. It is difficult when you “put yourself out there” doing what you hope is the very best for your patients, usually because have a great deal of internal self-drive, and then have the whole thing turn into a mess. Also, you may reasonably wish to quarantine work stuff and home stuff, especially if you have a young family.

Friends and colleagues that have been sued often say it is the reassurance and support of their colleagues who remind them that “you really are a good doctor” that is most helpful. In addition to your mentor and colleagues, consider professional support from your organisations Employee Assistance Program. Most of all, do not personalise it excessively nor let it affect your sense of self or enjoyment of your profession. Many people that have been through the difficult journey find that they emerge with a greater sense of destiny and fulfilment and greater skill and knowledge.  It takes some effort and luck to get to that point.

If you do have to attend court get specific orientation and support from your MDO. Be prepared – you may be permitted to carry your notes into the witness stand and read from them, for example. Know what type of proceedings that you are giving evidence -is it Criminal or civil? At all times, with or without a lawyer’s help, you must tell the truth about the facts and not be evasive (e.g. if you did tell a superior about something), even if the truth may not help others.

 

How is medical conduct adjudicated?

The Bawa-Garba case showed that doctor’s performance is judged “on the facts of that specific case”. That principle was a factor in why the Bawa-Garba case judgement appeared so unreasonably harsh. Despite the sadness of the whole affair, the court took the view based on the bare facts of the case that the management of the patient was well below reasonable professional standards. Mitigation for prolonged shift length/personal situation was not a consideration.

It means that if you are in a situation where you believe that workplace practices impair your ability to practice safely, consider raising a paper trail or at least initiate a discussion that objectively states your concerns with your supervisor. Situations could include excessive clinical workload or roster lengths, systematically poor communication, unavailable supervision, or being directed to provide care or undertake a procedure that is outside your level of expertise.

 

Workplace matters

Workplace matters are another area that MDOs can be very worthwhile. There is the potential for an enormous range of conflicts or difficulties. I was once threatened with substantial legal action for defamation by another clinician following a complaint I made to a teaching hospital about the medical care that was provided to one of my patients. It was a difficult time. I was able to deter the threatened defamation action with the assistance of my MDO. My painful teaching lesson was that “You can express an opinion and relate facts about what happened but don’t be malicious, and tell the truth”.

Your MDO can assist with workplace disputes such as bullying and harassment from staff or patients, or if you are accused of that. There are processes in place for this and many other workplace scenarios of which you may not be aware. An example could be if you feel the need to withdraw from providing medical care to a patient if they are harassing you. That needs a number of carefully calibrated steps including making satisfactory to the patient alternative arrangements for care.

Medical insurance does not substitute for a professional organisation such as ASMOF or the AMA and all doctors should belong to one of these.

 

Root cause analyses

NSW Health does have a process for misadventure called Root Cause Analysis (RCA), and most Public Health Organisations have similar processes. They are supposed to look at systems rather than individuals. They have legal privilege and confidential recommendations, although the information can leak out. RCAs can be a useful means of improving patient care. Even if it is difficult I advise honest engagement with this process. RCAs are humbling and stressful. If there is senior medical staff engagement and diligent exploration of the facts, clinically useful outcomes are possible.

 

Expert certificates and reports

There are some differences between an “Expert Certificate” and an “Expert Report”. An Expert Certificate is prepared for the court by doctors involved in a case, such as for the Coroner. Any grade of doctor can be approached. Senior doctors are much more likely to be approached to write expert reports, which may seek review of a case that they did not personally manage. In both areas, sticking carefully to the facts of the case is crucial, and not being tempted to step outside your area of expertise or to conjecture. A skilful barrister can make even the most caring doctor look pretty stupid in the witness stand. In both circumstances look at them as an objective means of assisting the court, and not representing or supporting any individual. Don’t run the risk of appearing biased (or excessively sympathetic to a colleague).

 

If you are asked to provide a mandated expert certificate I would advise that is done with the assistance of your MDO. Expert reports are generally a request rather than a directive. Although agreeing to write an expert report is “doing the right thing”, it exposes the doctor to what may not be a nice experience. You need to ask what it will involve for you e.g. being subpoenaed to court, maybe having to attend joint conferences with other experts. Enquire about fees and a timeline for “when you will be paid”. I personally accept those expert report requests with my eyes wide open, and agree to cooperate if the matter is of sufficient merit, the request is put reasonably and originates from a reputable source (such as a MDO).

 

Dealing with legal profession is stressful but it is also a crucial part of our professional responsibility. An important lesson from the Bawa-Garba case is that it is essential for any doctor of any grade to be a member of a good Medical Defence Organisation. Ask your senior colleagues about their experience. Choose your MDO carefully – you could be married to them for life.

Paediatric Research Priorities

Cite this article as:
Andrew Tagg. Paediatric Research Priorities, Don't Forget the Bubbles, 2018. Available at:
https://doi.org/10.31440/DFTB.16058

In order to help us all keep up to date the DFTB team and friends scour a great many journals to fill the monthly edition of Bubble Wrap. Given the large volume of research already out there that has not made it from the journal to the bedside, the major research agencies have been trying to determine what we really want to know.

Norman Swan: Breaking boundaries in medicine at DFTB17

Cite this article as:
Team DFTB. Norman Swan: Breaking boundaries in medicine at DFTB17, Don't Forget the Bubbles, 2018. Available at:
https://doi.org/10.31440/DFTB.15288

This talk was recorded late on the second day of DFTB17 in Brisbane.

Norman Swan is a multi-award winning broadcaster and producer. He has one three Walkey awards for national journalism and in 1989 he was given the Michael Daly award, Australia’s highest prize for science journalism. In this amazing talk he takes us through his formative years as a junior doctor, on to his role in exposing the scientific fraud of Dr William McBride, and beyond.

The Quagmire

Cite this article as:
Natalie Thurtle. The Quagmire, Don't Forget the Bubbles, 2017. Available at:
https://doi.org/10.31440/DFTB.13504

Our community is made up of health care folks that do hard things, go the extra mile, work on themselves and their knowledge so that patients get better outcomes. We’re not good all the time. We make mistakes, forget stuff, get grumpy or emotional, slide into tribal behaviour. But we’re working on it. So when someone comes along and shines a light on what’s happening outside our normal frame of practice, shows us patients that can’t get care, who are needlessly dying or suffering, it makes us uncomfortable. We want to do something.

Sometimes I get asked to be the person that turns on that torch, the person that makes everyone else uncomfortable, most recently at the excellent DFTB17. I try to do this with balance, to show another context, but also not to make people feel helpless or shocked. Sometimes I get it right, sometimes not. Without fail though, at least one person always asks me afterwards a variation of ‘What can I do?

A gentle nudge…

Cite this article as:
Tessa Davis. A gentle nudge…, Don't Forget the Bubbles, 2017. Available at:
https://doi.org/10.31440/DFTB.11516

Children have a right to receive healthcare regardless of the decisions made by their parents. This week, the RACP released a further statement citing refusal to treat patients for non-vaccination as ‘unethical coercion’. Whilst the majority of paediatricians are clear on the benefits of vaccinations, parents can choose not to vaccinate their children. Under the No Jab No Pay policy, this choice can lose them their right to Child Care Rebate. However, it should not lose them their right to receive healthcare. A poll by the Royal Children’s Hospital in Melbourne found that 17% of children who were not fully vaccinated had been refused healthcare by a provider. But what does ‘refused’ actually mean? And does the RACP’s statement leave us confused rather than providing clarity?

 

What was the poll?

The Australian Child Health Poll team at RCH is led by Dr Andrea Rhodes. It runs a quarterly poll on contemporary child health issues by conducting national surveys across Australia. The latest poll, released earlier this week, looked at vaccination perspectives of Australia families.

Data was collected from 1945 parents (with 3492 children). They were asked questions relating to the vaccination status of their children and attitudes to vaccinations.

 

What were the key findings on refusal of care?

  • 95% of the children were fully up to date with their vaccinations
  • 30% of parents had some concerns about vaccination
  • 9% of parents did not agree that “…it was important to vaccinate their child to protect the community (herd immunity)”
  • Of those not up-to-date, 17% had been refused healthcare (29 children)

 

Why are children not up-to-date with their vaccinations?

24% had delayed some vaccinations due to to minor illnesses, and there were misconceptions about when to delay.  36% thought that vaccines should be delayed in child with a runny nose but no temperature, and 47% thought they should be delayed if the child was on antibiotics. 22% thought vaccines should be postponed due to a local reaction from a previous vaccination.

18% had a preference against vaccinations, and perhaps worryingly 10% thought that vaccinations were linked to autism and a further 30% felt unsure about the link.

22% had delayed because of barriers to education and access. Half of these struggled to attend for vaccination and the other half had questions about vaccinations that they were unable to get answered. This emphasises the importance of our role. This sizeable group needs our input as paediatricians – to offer information, be open to discussion and assist with making vaccinations accessible.

 

What can we take from this?

This is the first poll in Australia providing information about refusal to provide healthcare.

Our role as paediatricians is to provide healthcare for each child regardless of their circumstances and certainly regardless of any actions of their parents. This poll makes it clear that there is a sizeable group of parents with uncertainty about vaccination who are interested in engaging and accessing services. We would be doing them a disservice by refusing to treat their children. And even where parents have made a specific decision not to vaccinate, we still have a duty to provide healthcare for their children. It is only by keeping the channels open that we can support, educate, and engage.

The RACP has released a clear statement on this which reinforces their Immunisation Position statement.

It is inappropriate to refuse to treat unvaccinated children, firstly because it represents unethical coercion and secondly because the children will be further disadvantaged.

Yes, we know that vaccinations are beneficial. And yes, we want to increase vaccination rates and ensure our patients are vaccinated. However, by denying unvaccinated children healthcare we are disadvantaging them even further. The RACP goes as far as to call this ‘unethical coercion’. We need to provide healthcare and not use it as bargaining chip.

However, the concept of refusal may not be clear cut. This poll did not collect data on the circumstances of refusal so we do not know which provider has refused treatment or how that refusal has occurred. It is possible that parents perceive that healthcare professionals are not happy to treat them and classify this as outright refusal.

Research in the US has shown that providers worry that unvaccinated children will pose a risk to young babies in their waiting rooms, or that the unvaccinated child themselves is at risk of catching a serious infection. These are reasonable concerns and therefore steps may need to be taken to minimise these risks. If unvaccinated children need to sit separately, could this constitute refusal in the eyes of parents? If the parents have to engage in an awkward 10 minutes of discussion with the paediatrician about the benefits of vaccination, could this constitute refusal in the eyes of the parents?

So the answer is not as clear cut as the RACP’s statement makes it seem. Of course we should not refuse to treat a child because their parents didn’t vaccinate them. But it is also our role to encourage vaccinations and to engage in discussion about the benefits of vaccination. This engagement may make vaccine-refusers feel uncomfortable and affect their perception of our willingness to provide healthcare. This is not the same as refusal to treat.