Transcript
MIC CAVAZZINI: Welcome to Pomegranate Health, a podcast about the culture of medicine. I’m Mic Cavazzini, for the Royal Australasian College of Physicians. Last November the British High Court was asked to determine the fate of Indi Gregory. She’d been born in February at a Nottingham Hospital with very complex medical needs. There was intestinal malrotation for which she underwent corrective surgery, and hydrocephalus that was managed by placement of a shunt. She also had multiple heart defects including a hole in the ventricular septum and a pulmonary valve stenosis.
Indi went on to experience respiratory insufficiency and seizures and was diagnosed in June with combined D-2, L-2 hydroxyglutaric aciduria. This is a rare, inherited mitochondrial disease that hobbles brain development and energy production. By six months of age, Indi had experienced eight admissions to intensive care and three cardiac arrests requiring CPR. Medication did reduce the frequency of oxygen desaturation episodes but there was no prospect of broader improvement of her condition.
On September 6th, Indi was again admitted to the ICU and placed on multi-organ support. This time, medical staff advised the family that it would be more humane to withdraw life-sustaining treatment than to prolong Indi’s grim condition. This proposal was rejected by the girl’s parents and so five weeks later the Nottingham University Hospitals NHS Trust sought permission from the High Court to take this decision against the parents’ wishes.
The presiding Justice, Sir Robert Peel, was presented with statements from various specialists that the otherwise unresponsive child did show signs of pain and distress from the repeated invasive interventions. Indi was experiencing fever spikes, considered to be consistent with continued brain deterioration and cardiology teams at two neighbouring hospitals testified that the risks of treating her heart defects greatly exceeded any long-term benefit.
Justice Peel was convinced that Indi had “reached the limit of what medicine can achieve.” He wrote that he had arrived at this conclusion “with a heavy heart” but ruled that “having weighed up all the competing considerations, her best interests are served by permitting the Trust to withdraw invasive treatment.”
Indi’s parents wanted to challenge this judgement in the Court of Appeal and the European Court of Human Rights but both declined to hear the case. Then they sought to have her transferred to a hospital in the Vatican which had offered ongoing life support and other interventions. But in another hearing on November 2nd Justice Peel observed that no information had been provided by the Italian hospital as to how a transfer would improve Indi’s prognosis or quality of life.
One week later, the day came round for Indi to be extubated. Once again, the High Court heard from the conflicting parties as Indi’s parents had understood that the extubation could be performed in their home. However, the medical team had determined that a home transfer would make it too hard to manage complications. The family didn’t learn of this because of the ongoing communication rift, a sad fact that was recognised by Justice Peel in his final judgement in favour of the Hospital Trust.
Today’s podcast is about these sorts of breakdowns in collaboration between medical teams and the parents of a sick child. Later we’ll hear what it’s like to experience this from the perspective of clinical staff, but I want to start with a non-medic who was inadvertently drawn into this conflict space through a case from thirty years ago. Sarah Barclay is director of the Medical Mediation Foundation based in London.
SARAH BARCLAY: So I came to this work from many years as a medical and social affairs journalist working for the BBC. And during that time I made a lot of films which involved complicated ethical dilemmas. I made films about assisted dying and about the sort of long term survival for babies who were born extremely prematurely. So all of those involves real complex ideas, ethical dilemmas and, as you can imagine, really high stakes emotions too.
So one of the cases that really stood out for me was what was known as the story of child B. And this was the case of a 10 year old girl who had relapsed leukemia. Her doctors were saying, “there's nothing more we can do”. And her father questioned the judgment, he took the Health Authority to court, and what he wanted was for his daughter to have additional treatments, specifically a bone marrow transplant. And it became a huge case, internationally and nationally, which was interpreted as the National Health Service wanting to ration treatment, so it became a really big case. And we made a film about her not knowing whether it would ever be broadcast, because at the time we started to work with the family and the clinical teams, Jamie, as she was known, child B, was protected by an anonymity order imposed by the court.
So when I look back on this case, I started to think this case was about conflict. And I guess it was the case which ended up taking me to where I am now and starting the Medical Mediation Foundation. One of her doctors, Simon Mellor was the person that I started MMF with back in 2010, because there was nobody independent who was coming in there to facilitate those complicated conversations, particularly when relationships had started to break down.
MIC CAVAZZINI: So in 2014, just ten years ago, there was another high profile case that you’ve said influenced your thinking and practice. So this was the case of Ashya King who was five years old when he underwent surgical resection for a medulloblastoma. His parents didn’t want him to undergo conventional chemotherapy because they believed that proton beam therapy would result in fewer side effects. So the family insisted on taking Ashya to Prague for treatment. The hospital refused to discharge him. In response the parents snuck out of the hospital and out of the country. UK authorities issued a warrant for their arrest and there was a predictable outcry from the British public and then Prime Minister. Once this had all settled down, you were invited to Southampton to help staff deal with the pressure they'd been experiencing. What did you find?
SARAH BARCLAY: It was extraordinary, really. We had gone to do a debriefing with the staff and we thought well, maybe five people will turn up. I think there must have been around 50 people who came into that room and we gave them an opportunity to talk about the impact that that case had had on them. And it was really palpable the distress that many of them had felt. They had been the subject of hate mail; of threatening phone calls; they were frightened of coming into work. And some of them really didn't feel supported by the senior management team in the hospital. They said, “You know, we didn't have a pathway to follow when this situation arose, we didn't know what to do. And we felt that we were, in a sense, just left to get on with it.”
So we turned to a really interesting book by the American surgeon, Atul Gawande, called 'the Checklist' where he had tried to create a structure to support clinical teams in operating theatres to minimize the possibility of clinical risk [see also NEJM 2009] And that was essentially around communication. It was around making sure that the team in that room were feeling safe, were able to communicate with each other, we're able to identify any sources of potential error or clinical risk. And I thought, actually, that might be a very helpful template or model to use to start thinking about creating a pathway for managing conflict. So the Conflict Management Framework has been through various pilots and iterations. It was tested by an oncology team in Perth, back in 2017, and in three UK hospitals.
MIC CAVAZZINI: Ashya King did end up receiving proton beam therapy in Prague and in 2022 was reported to be in remission but with ongoing neurological disability. But the story highlights how such cases are made more likely with the ever-advancing progress of medical care. In fact, a Dr Peter Wilson at Southampton told the BBC "Ten years ago, [such cases] were almost unheard of in paediatrics. But [now] most NHS Trusts at the moment will be dealing with something like this, as best they can, with the families.” Sarah, is that what you’ve seen in all your years in this space?
SARAH BARCLAY: Yes, you know, when I started, and when I was a journalist, there would be one of these difficult cases every few years. Now, certainly the frequency has increased. There have been more cases that have gone to court over the last six or seven years and there are many cases that, of course, don't end up in the public domain. And I think that's due to a combination of the complexities and advances in medicine and the questions around, you know, whether, even if you can do something, whether it's the right thing to do. So yes, there has been a rise in the complexity and the frequency of conflict and the impact on families, the impact on staff is huge.
There's a recent Nuffield Council Report on disagreements in the care of critically ill children and I think something like 66 percent [of staff] said that they'd experienced moral distress as a result of their work. 49 percent said they'd been felt unsafe, either physically or emotionally at work. And interestingly, 61 percent said that they thought there was less trust generally in health care professionals. And I've certainly heard parents walking down hospital corridor saying, you've got to challenge the doctors, you know, you can't just believe them, you can't just take it on trust.
And I think that's quite a sad place to be and that leads to quite a lot of situations where there is challenge and often very justified challenge; families want to ask questions. But for the professionals on the receiving end of that, with time pressures, that can sometimes lead to a sense of frustration and, on their part, feeling that all of their years of training and expertise kind of don't count for anything. And that's a really difficult place for them to be to, because when conflict arises and you feel that you're being attacked, you know, often the instinctive fight or flight response is sparked.
MIC CAVAZZINI: One member of my editorial group is a specialist in clinical genetics, and after hearing this story wanted to shine a light on the unique predicament of parents with a child struggling to thrive. She said that where this has been caused by known gene variant, parents sometimes carry a sense of guilt for having passed this onto their child. It’s understandable then as to why they might feel compelled to do everything possible to compensate for this. Conversely, she pointed me to some qualitative research showing that parents of very premature babies are typically more optimistic about their prognosis than healthcare staff, and they rate more highly the quality of life of infants with extremely low birthweight or severe disability.
The human tragedy of such cases and the courtroom drama has made some of these unfortunate children household names. You’ve probably heard of Alfie Evans and Charlie Gard. They were born a few months apart in middle of 2016 in Liverpool and London respectively. Both failed to thrive due to neurodevelopmental disorders and again, there was a standoff between the parents and the treating staff over the sense in continuing life support. Online groups describing themselves as Alfie’s Army and Charlie’s Army numbered in the tens of thousands, and these materialised into real crowds outside the hospitals and the courts who labelled staff as “murderers” and “executioners.”
Both boys, and Indi Gregory too, became causes célèbres in the political culture wars. Hard right politician, and now Italian prime minister, Giorgia Meloni, offered to help the kids become citizens so that their transfers to the Baby Jesus hospital in the Vatican could be facilitated. Italy is a country where euthanasia is illegal and 70 percent of gynaecologists have formally registered as conscientious objectors to performing abortions, though that procedure is permitted in law.
While the advocates for prolonging the lives of such children easily find platforms in the media, the people treating them are bound by the code of patient confidentiality. So there is often a sense from staff of being silenced in the court of public opinion; of being unable to communicate just how in tune medical teams and even the courts are with the best interests of suffering children. Fortunately, it’s only in a minority of cases that the conflicts over end-of-life treatment escalate to the extent that we’ve heard. There is evidence from a Californian Health system that families can be convinced of the merits of withdrawing treatment 95 percent of the time (See also Pope; New York Law School Law Review. 2013).
That being said, are all sorts of everyday decisions in care that can also lead to friction and feelings of moral injury. The reluctance of some parents to present their kids for childhood immunisation is one such example. Let’s hear now how these friction points big and small are experience by healthcare workers. These three women were working at Starship Hospital, Auckland when in 2017, a medical scenario developed quite similar to the British ones we’ve heard about already.
Out of courtesy to all involved, I’ve been asked not to rake over the coals in any detail. In a review for the Journal of Paediatrics and Child Health it’s simply written that the devastated parents of the sick child lost trust in the clinical team and became hypervigilant over all decisions and interventions. Meanwhile staff became reluctant to work in the bed space and came under added pressure as some media commentary became critical of the hospital’s position.
Senior clinicians sought to better prepare their staff for these kinds of interactions with families, or whānau as they say in Aotearoa. That’s how they came across the Medical Mediation Foundation and they invited Sarah Barclay to Auckland to provide some training. Leading the Starship Hospital initiative was psychiatrist, Dr Louise Webster. Other staff champions were nurse specialist Fi McIver and paediatric intensivist Fiona Miles.
LOUISE WEBSTER: I'm Louise Webster, I'm a child psychiatrist and paediatrician. And I work in Starship in the Consult Liaison Team, which is a mental health team that works with children with chronic physical, medical illnesses.
FI McIVER: I'm Fi, I've been working at startup for 23 years. I'm a nurse nurse practitioner in training.
FIONA MILES: Hi, I'm Fiona Miles. I'm a paediatric intensive care doctor. I've been at Starship for about 25 years. And we look after the sickest children in the country not just from Auckland.
MIC CAVAZZINI: Thankyou. And Fiona, you wanted to open with a karakia.
FIONA MILES: Whakataka te hau ki te uru
Whakataka te hau ki te tonga
Kia mākinakina ki uta
Kia mātaratara ki tai
E hī ake ana te atakura
He tio, he huka, he hau hū
Tīhei mauri ora.
MIC CAVAZZINI: Kia ora kotou. Thank you for that. Observational studies suggest that conflict with families in the paediatric setting occurs in as many as a half of ICU cases and that 70 percent of ICU staff will have some such episode any given week of practice. Louise, would that have been your experience at Starship?
LOUISE WEBSTER: It certainly would be. I think often when it's in a paediatric ICU setting, it's very laden, because children are so special, and families really struggle with some of the messages that have to be delivered. So certainly, we were seeing a lot of conflict in that setting. I think there was still conflict everywhere else in the hospital, but perhaps it didn't get highlighted as much because it wasn't translating into a life-or-death situation.
MIC CAVAZZINI: Sarah, one of the earlier bits of research you published in 2016, was a survey of staff at Evelina Children's, a 280 bed teaching hospital in London. Over a six-month period, there were 136 individual episodes of conflict reported and they came from all departments. I was expecting intensive care to have the lion's share but that was actually fifth down the list a bit behind ENT and cardiology, and with half as many incidents as general medicine and neurology, which came out on top. Were there any common features in the types of cases across those various settings?
SARAH BARCLAY: I think in the areas where most conflict was being seen there were difficulties of poor prognosis. They were often children who were being looked after by many different teams, with real complexities, complex conditions. And what came with being looked after by many different teams was often many different kinds of communication so that families might be getting what they certainly perceived as conflicting messages, perhaps and that sort of became a recipe for conflict.
MIC CAVAZZINI: In fact, one consultant told interviewers, “Children with… neurological problems are very difficult to manage, they have usually multi-system and multi-organ problems…. they may well have gastroenterology problems, they may have respiratory problems and all sorts of other things…. I think the managing of [parental] expectations in neurology is extremely difficult because it's very difficult to prognosticate.” That comment revealed to me that it's not necessarily about the acuity or the urgency, but uncertainty plays a big part. Is that right, Fiona?
FIONA MILES: Yes, I’d definitely agree with it. I think uncertainty is one of the hardest things we ever live with. When you're uncertain about what's going to happen, when you're in an unfamiliar environment, when you don't know the people it's you have this huge sense of loss of safety. When a child is sick, you lose your sense of safety in the world. So managing uncertainty is incredibly difficult and especially when you're not sure when to be worried. And so, even when we know that things are reasonably straightforward families don't know that.
Sometimes it's the language we use. Some of our families are from—English isn't their primary language so they're not necessarily understanding nuances of language from different ways. So sometimes one of our jobs as intensive care doctors is to be very direct and very clear about what is happening; things like using the word ‘death’ rather than ‘passing away’. So it’s really important for us to be really honest about what we know and what we don’t know. But our most important role in this is to really listen to the families to hear what their concerns are. Staff make assumptions—we react to how people how people are to their behaviour, rather than actually seeing their reactions as a sign of grief or fear.
MIC CAVAZZINI: In Sarah’s study, the conflicts were pooled into three tiers. About a third of episodes were categorised as low intensity- meaning they were simple disagreements that slow a ward round down a bit but they could be resolved when some explanation was given. Almost half of episodes were rated as moderate intensity, and one consultant described the impact like this; “You can have families who take an hour of the ward round time every day and then another member of the family comes in and you have to go through the whole thing again and lots and lots of explaining, lots and lots of questioning about why things are being done. [The] child gets the treatment, everything eventually moves forward, but it is extremely demanding.” Louise, tell me what the difference then is when things step up to what's rated as a high intensity encounter. And these made up 17 percent of Sarah’s cases.
LOUISE WEBSTER: It's really interesting. I think one of the things that really marks it out is that the difficulties and the behaviours get to us a level that as staff, we can no longer pretend that it's not happening. So sometimes it's not so much that the conflict has necessarily gotten worse, but it has gotten to a point where we can't deny it. But generally, at the point that it's really severe, that's the point where the child's treatment has been significantly compromised, where everyone is really polarized; staff on one side, the family on the other side. And you're also starting to get threats. So you starting to get perhaps families, threatening violence or threatening career consequences or threatening to go to social media, threatening to go to the complaints system. And staff sometimes also giving information in a way that might be perceived by the family as being threats, so threats that social services might be involved, discussion of involving the High Court. So I think both parties are feeling threatened.
MIC CAVAZZINI: And it sounds like the contest itself becomes the focus rather than the question of treatment necessarily. And some of those conflicts described in the Evelina survey could occupy a house officer and a consultant for half a day. When all of these incidents were added up, they amounted to 19 staff hours a week. As one consultant paediatrician put it, “[it distracts] attention from what really should be our clinical priority, which is looking after the seriously ill children… So, it has inappropriate demand and drain on the team, out of proportion to necessarily the medical issues of that particular child.” Fi, is that the feeling among nursing staff as well, that there are other more needy patients missing out on your attention?
FI McIVER: Yeah, I think that it's really difficult for nurses and people like allied health staff who are at the face of this, and with the patients for long periods of time. I think 19 hours a week, could probably be even expanded for some of the more complex cases in the hospital. Well, certainly, that's my experience. I think the role of the nurse specialist can help with that and take some of the load off registered nurses and also consultants, registrars.
But it certainly takes away from the patient care because you're just taking staff into a place of conflict. But also, I think what you need to acknowledge is the emotion that comes with that as well on the staff. So if you've got conflict, and you're having to work around that and deal with that, you've also got emotions, and that can end up also costing time for the staff where they deescalate themselves and deal with their own emotions. So I think it's definitely taxing.
MIC CAVAZZINI: And do you feel that nursing staff often take the brunt of things when they boil over?
FI McIVER: I think by default, because nursing staff are in the room more. I mean, in the intensive care environment, that's twelve hours at one bed space. And that could be three times a week and three days in a row, so I wouldn't say that doctors don't feel it. Definitely junior doctors are there as well and they're experiencing that as well. Allied Health again, physios and OT, also we’d have to acknowledge play specialists in that because they often pick up on things before anybody else, they’re with the patients a lot more than any of us in the wards.
MIC CAVAZZINI: The conflict management framework, or CMF, was referenced in a consensus document published in the 2019 Archives of Disease in Childhood. It was endorsed by the Royal College of Paediatrics and Child Health but described as “neither exhaustive nor obligatory.” One of the recommendations is to develop skills within your service to recognise early the development of conflict. So, Sarah can you describe some of the signs or behaviours to be most sensitive to?
SARAH BARCLAY: Well, you might see parents avoiding conversations. You might see parents avoiding meeting certain professionals. They might start requesting not to have particular nurses at the bedside looking after their child. They might request—or perhaps not request, they might say very firmly, they don't want to talk to particular doctors, people looking after their child. And so there's a sense of them starting to withdraw to disengage from communication with the professionals. And so you get that sense of positions becoming quite entrenched. And, of course, you might see that in body language and people turning away in people, parents, perhaps refusing to make eye contact, you know, just withdrawing. And those are quite subtle signs, and what we've seen is that they're often not understood and often not picked up. So by the time we really see things becoming more severe those might have been going on for quite a long time.
MIC CAVAZZINI: And less subtle, perhaps, is when a family then starts recording conversations, taking notes, trying to exert some control on the situation. At what point would a clinical team come to a mediator like you? And what can you bring to that situation when it's gotten that tense?
SARAH BARCLAY: Often, I'd say they come far too late. And that is partly because paediatricians are fantastically tolerant, generous human beings. And they think, “You know, we are paediatricians, and we should be able to sort this out for ourselves. We are good communicators.” And they really are most of the time. Often the point at which people will come to us is, if the impact on the care and the treatment and the decision-making for that child has become really affected, and the family may be refusing certain treatments. And so there is a direct clinical consequence for the child.
And the third thing really is that the impact on the team has become very significant. And it can take a long time for that to be acknowledged and for there to be consensus within a clinical team that maybe they need some help. And I think there's a sense of failure around that often, we would say, it's a brave thing to do to acknowledge that, for whatever reason, you can't sort this out for yourselves, and you need somebody with a different skill set to come in and help.
MIC CAVAZZINI: And I imagine having you come in from outside the institution does give a sense of there being a third party, an independent voice. But depending how far the situation has progressed in house, Louise, the family sometimes may request or demand a second clinical opinion. On the other side, have you ever proposed this yourself to as a way to diffuse the us versus them mentality?
LOUISE WEBSTER: Yes I have. And there may be things that I as a clinician have missed, there may be things that I've overlooked. I think it's really helpful for people to be able to have someone completely independent come and review the facts and that is often very reassuring for families.
And the second thing is recommending that it get taken to the Ethics Committee, particularly when there start to be ethical dilemmas about what sorts of things can and should remain within the domain of parental choice. And sometimes we do face that with decisions where there are really divided risks and benefits from a particular treatment and not a totally clear evidence base, best way to go ahead.
MIC CAVAZZINI: Fiona—Dr Fiona—consultations with clinical ethics or palliative care can be helpful not just for end of life care, but also when intervention options are first being considered. But do you sometimes get the reaction from parents that you're giving up on the child when you're referring to those services?
FIONA MILES: Yeah, it's interesting. I'm on the ethics committee and I've found that, actually, families really appreciate us, the doctors coming to the Ethics Committee. We're an advisory committee, we don't tell anyone what to do, we just give different perspectives. And our committee is made up of about 15 different people from all walks of life. So we've got lay people, we have different clinical specialist managers, we have Māori advisors. So we when people come to the committee, they present a case and we ask them lots of questions. And as they're asking the questions, and you see them come to their own realization of a broader view. We invite the families to send a letter, and we're happy to meet with members of the families. We've had several whānau say, actually having their voice heard, knowing that the teams are doing a robust process to really try and get the best for the child is really what really matters for them. So we've generally had positive responses to that.
MIC CAVAZZINI: That's really encouraging to hear. That it is seen as a separate space to air concerns, outside of clinical questions, perhaps. And in that guideline document, there is some advice about how to deal with the media in those intensely scrutinized cases. It's suggested that all media requests should be managed by designated and appropriately trained staff. But I imagine in this day and age, they're not afraid of door-stopping clinicians on the street or connecting through social media. Fi, have you been faced with this kind of confrontation?
FI McIVER: Yeah, absolutely. I think monitoring phones on the front desk is a really hard one. If you pick up the phone, making sure that you're actually speaking to family or who they say they are. I know that we've had media try to pretend their family members and elicit information in that in that form. I've been approached coming out of the hospital after a night shift by somebody that was quite blatant and in your face. And then I remember being at a barbecue, quite a big barbecue, and somebody introducing themselves and making small talk. And then a couple of questions they asked me red-flagged and I realized that they were actually a reporter, and they had taken the opportunity to try and elicit information from me. And I mean, that was just opportunistic from them but you just can't let your guard down. Like you're out and about, and if there's a high profile case, you don't want to make those slip ups.
MIC CAVAZZINI: Jee, that's tough, if you can't ever really switch off. And at the pointy end, you might even have protests outside the hospital—I'm not sure if this happened in the case of Starship—or at worst carers of the child might be disruptive within the hospital, blockading things or whatever. Can you explain what a behavioural contract is and how that can be negotiated and implemented?
FI McIVER: Yeah, I worked alongside Louise, just after we worked with Sarah and Essie. And we had a situation where we used a behavioural contract. And it’s not punitive, it’s not “this is what we’re going to do, you have to sign this.” It’s about putting something down on paper that keeps whānau and the child's best interests and safety at the forefront but also acknowledges, actually, staff and the people that are working in the hospital's safety and best interests as well. We don't make people sign it, as such. It's not a contract that is legally binding. It's about just having some set goals and also some behaviours around keepin g people safe.
LOUISE WEBSTER: I think, too, often what it's doing is not only specifying what behaviours need to happen from the perspective of the family, but it's also really highlighting what behaviours need to happen from the perspective of the staff. Because there are things that we do that don't work for families. So it's saying, “Let’s, keep the child at the centre of this. And what do we all need to do together, staff and family, to be able to ensure that that runs is as well and as safely as possible for the child.”
MIC CAVAZZINI: Right. So it's a way of sort of pausing the situation and putting down what do you expect of us? And what do we expect from you? And how can we push ahead? So far, we've been talking about how to deescalate highly strung situations. But let's move on to the prevention of such conflict in the first place. And in the conflict management framework, this gets called stage one. Sarah, when Louise called you into Starship for more in-depth training of its staff—150 staff—what did this little training look like?
SARAH BARCLAY: When we first came to Starship, literally just before the pandemic, what we were doing was whole days of training with the staff, introducing them to what we call the conflict pathway, which is a kind of green, amber, red traffic light pathway with those early warning signs in. And then picking the potential triggers for conflict from the family's perspective, the professionals’ perspective.
So for example, what we found in our original research was that language was critical. And the wrong word at the wrong place at the wrong time, might begin to spark conflict with a family. And that might be anything from getting the gender of the child wrong; to calling a parent “mum”, which in some for some people goes down really badly; for using complicated medical jargon, for example, in intensive care describing the child as “stable”, which might be clinically correct, on a particular day, but for a parent might land really badly because there'll be sitting there thinking, you know, “my child is really sick, they're in intensive care. And on the ward round, they've just said they're stable.” So language and being really sensitive to the impact of language was key.
And my colleague Essie Menson isn’t here this evening but she was a consultant paediatrician and the Evelina when I met her and is now does this work full time and has been involved in the Starship journey right from the start. So I think none of this could have happened without expertise and we she brought to this as a doctor and all of her learning.
MIC CAVAZZINI: Going back to that survey from Evelina hospital- the three most common causes of conflict were ‘communication breakdown’, ‘disagreements about treatment’ and ‘unrealistic expectations’. Indeed, one of the first recommendations is to avoid giving families unrealistic expectations of clinical outcome. Fiona is that a common temptation, to skirt around a poor prognosis or dress it up in clinical language perhaps?
FIONA MILES: Yes, I think it's a real challenge to give really complex news to families and giving news about a poor prognosis is really hard. We live in uncertainty, we don't know what will happen, so we can only say what we think might happen. And there is a real temptation to, when you're faced with family, to want to give them good news. And so sometimes the language we use, the jargon, the mixed messages from different teams, will actually create more uncertainty.
The difficulty is when you have different teams who have different perspectives, which is obviously one of our strengths, we need all our different teams to come in with their strengths. But sometimes we have what I call Eyore-Tigger conversations where one of the teams will come and say, “it's all lovely today”. And we'll say, “Well, it'll probably rain”. And what we need to do is to help families understand why that we have different perspectives but to say, what we are clear about what we are not clear about so they have a shared understanding with us. And we need to do that in a way that a family is ready to hear, and all families are different.
MIC CAVAZZINI: The complex cases that might have a whole multidisciplinary team attending to them, who aren't necessarily all on the same page, all on the complete page. The CMF guideline addresses some of this with the advice to “Ensure that different clinical staff are not giving conflicting information to parents… [that they’re] informed of and understand the rationale for any changes to treatment plans.” Louise, what's the best way to coordinate a big team and make sure that they're giving consistent information?
LOUISE WEBSTER: It's a real challenge, particularly in a tertiary hospital setting where children with medical complexity, we'll have a number of different sub-specialty teams involved. And each of those teams is very, very expert in the organ system. That's their bread and butter, stock and trade, and are very keen to contribute their expertise and wisdom. But for the family stuck in the middle of this, it's really difficult.
So one of the challenges, I think, is to make sure that there is one team that is the primary team, and that any messaging is given via that team, if at all possible. So instead of each working in isolation, and delivering separate messages to the family, making sure that the teams have an agreed-on consensus so that that is the kind of guiding opinion about what's going on with the child.
And then I think having really regular meetings with the family that have the primary team—and you want the bedside nurse there because families go out of these meetings often when they've heard difficult news and they process it with the person that is then at the child's bedside. So it's really hard for them if they've been in a high level meeting and then they go back and the bedside nurse has no idea what they’re talking about.
MIC CAVAZZINI: Fi, do nurses often feel left out of those big clinical conversations? Or are the staff at Starship impeccable now that they've been through Sarah’s training?
FI McIVER: Wouldn't we love to be impeccable? Yes, I think that nurses do feel quite disconnected from what's happening. And it's a really important part that we bring them in. Now, it's unrealistic in times of nursing shortages, to expect the nurses to be able to come to all those meetings. So that's where again, a nurse specialist should be in the room absolutely, as a minimum, but making sure that documentation is there for the nighttime nurses, or over the weekend, and that people actually know what's happening is really important. But mostly actually going to the people on the floor before the meeting starts and getting some feedback about what's happening, I think is essential, and that's what's often missed out.
MIC CAVAZZINI: Sarah's already touched on this, the importance of letting the family speak about their past experiences that that may have influenced their current behaviour. Maybe they know someone who was harmed in a similar intervention previously. Maybe they were treated rudely by health services in the past and have a certain cynicism. Maybe they have certain religious beliefs that influence their views on treatment. Fiona, in the review that you wrote up on the Starship experience, you quoted a staff member who said that listening to such an experience from a mother quote, “changed how we approach the mother one when we knew her story, it changed the dynamics of the whole shift.” Can you expand on the change in the staff? What had they heard that change their behaviour and how they were able to cut a bit more slack?
FIONA MILES: Yes. On that occasion, we were doing a ward round and there was a mother with the child was ready to go the ward, it had been in the intensive care overnight. And we said that the child was fine. She said “Yes, I want to get out of here because the nurses are unprofessional.” And she said that three times she looked withdrawn. And so we came back to her after the ward round and said— you know, apologized for that and said, “Tell us what's going on, tell us what your concerns are.” And she had been told by a junior staff nurse that her child had developed diabetes and she was told that this had happened because the mother had given the child fizzy drinks.
Now this woman lived in a remote area, she never gave her child fizzy drinks., it was also I think, a sign of institutional racism, just people making assumptions based on appearance. As this woman started telling her story, it moved from that to what her real concerns were, which were not just about the child, about the guilt about the child being sick, about whether she'd bought the child in soon enough. It all also came out about her concern about her disabled father that she was caring for and how she would look after both and be in two different cities. And so this whole story of her whole life started unfolding and all her real concerns, and how alone she was in that. And the other nurses who were listening, as you started to get an understanding of why this woman was angry and upset, there was real empathy. And when we know people's stories, we then want to step in and help rather than feeling defensive about why they're behaving in certain ways.
MIC CAVAZZINI: I won't go too much into the speculative treatments that families sometimes go chasing and sometimes spending lots of money to go overseas. Obviously, they're in a desperate scenario and are prepared to try anything. The internet now provides all sorts of false hope, but there’s was a 2019 paper in the journal Critical Care Medicine titled “The Value in Doing Something” where US bioethicist David Wendler discusses conversations with parents of terminally ill children. And he found that they weren’t usually deluded by the prospects of success from some experimental treatment, but it did give them a sense of agency, that they weren’t being passive victims to the illness, that they were doing everything they could to show their commitment to the child. Sarah, it seems to me, then, that the conversations around care, maybe should focus less on the statistical likelihood of success or remission—you know, this percent harm from this therapy—and instead allow the families to feel like they've done enough, they've had their say, they've influenced the care in some way.
SARAH BARCLAY: I think all the research out there will say that parents feel it is their duty to advocate for their child. And as one great researcher, Myra Blueborn-Langer says, when she researched and worked with families whose children had relapsed after very severe cancers they talked about leaving no stone unturned. I think it's become even harder for families in the last few years, particularly with social media, particularly with the huge range of information that they can access on the internet. It's almost left them feeling that unless they become quasi medical researchers themselves, they're not being good enough parents. And I think that has produced a situation where often that has led to conflict, because that's what parents are feeling they should do.
MIC CAVAZZINI: And let's finish with some consumer feedback, if we can. Fi, I think you've got a letter from a family that came back to you.
FI McIVER: Yeah, I do. So this is actually using those skills after learning them and, and seeing the result of that. And they were those really basic skills of listening and just noticing red flags. It wasn't a huge escalation of conflict, but it was picking it up early. And this family had been transferred from another hospital. Mother was very quiet in the corner and she kept repeating something very quietly, and staff picked up on it, explored it and it turned out to be incredibly significant, and resulted in the child having a very big change in care.
Anyway, afterwards, she wrote in to us and said, “It was hard for me to focus while being super worried about advocating for my baby, and feeling so overwhelmed. That changed when the team came and spoke with me. I felt listened to and I felt that things that I was worried about were finally addressed, and a sense of relief that my baby was going to be taken care of”. And I think that sums up why this is really important.
MIC CAVAZZINI: Yeah, relief, it doesn't necessarily mean that everything's been answered, but it's, it's a sense of being cared for. Are there any final comments that anyone would like to add?
FIONA MILES: We'd like to close with a karakia if we can?
MIC CAVAZZINI: Of course.
FIONA MILES: Unuhia, unuhia
Unuhia ki te uru tapu nui
Kia wātea, kia māmā, te ngākau, te tinana, te wairua i te ara takatā
Koia rā e Rongo, whakairia ake ki runga
Kia tina! Tina! Hui e! Tāiki e!
MIC CAVAZZINI: Many thanks to Fiona Miles, Louise Webster, Fiona McIver, and Sarah Barclay for contributing such personal experiences to this episode of Pomegranate Health. I’ve provided links to the Conflict Management Framework, and all the other literature discussed in this story, at our website racp.edu.au/podcast. There’s even a complete transcript available there and a comments section where you can continue the conversation.
You’ll also find a list of the physicians who kindly reviewed early drafts of this podcast. I want to thank them all sincerely and to share a couple of additional thoughts from the paediatrician whose own whose own experiences provided the seed for this podcast. He told me he that has occasionally had to challenge people video recording everything on the ward but for the most part is able to build trust with families by having complete transparency. That’s to say, sharing with them copies of every test and reports, and even giving them his own work phone number. This has only once led to intrusive calls, while most families are reassured when keeps his word and provides regular updates. Another useful practice is to build up to confronting or complex conversations by laying the framework over a few preceding encounters.
If you found this podcast useful, please share it round with colleagues and feel welcome to send any ideas for future stories my way by using the address podcast@racp.edu.au. It’s really helpful to hear who’s listening and how we can make the show better. This podcast was produced on lands that raised countless generations of Gadigal people. I pay respect to their elders past and present. I’m Mic Cavazzini. Thanks for listening.