Decisions before birth

This talk was presented on the 13th of September at #CODA22.

Wominjeka. Welcome. We make hundreds of decisions every single day. What you wear, who you speak to, latte, piccolo, magic, soy, almond, oat milk, lactose free, or if you’re not from Melbourne, black or white coffee.

We also make hundreds of decisions on behalf of someone else who trust us voluntarily, or involuntarily, the patients under our care. These clinical decisions are based on clinical judgements. These clinical judgements are based on knowledge, experience, and ethics. Being human, unfortunately, our judgements which influence our decisions can be coloured by our biases and experiences. Ethics should be our guiding light, but sometimes when we’re in under pressure, the light is a little faint.

Ethics in clinical practice must be practical, otherwise it’s just rhetorical philosophy. We’re not all ethicists, but we all need to practice ethical decision making daily. Ethics has to be practical. Ethics cannot be esoteric.

Not every story ends well. Not every story begins well either. This talk is dedicated to the many mothers, parents, carers and babies who have had challenges at the beginning of their stories. Some have great outcomes, others don’t. Some survive, others don’t.

A long time ago in a galaxy far, far away lives a 45-year-old Padme. She’s a Senator. She has been trying for years to have a baby, and she’s finally successful on her last round of IVF. Yay! Her first trimester went smoothly, her only complaint was missing out on soft serve ice cream and sushi. The first sign of trouble was written on the ultrasonographer’s face during her 18-week gestation scan.

Oh, oh. Something is not right around the baby’s head & neck. I can only imagine the sonographer continuing to work scanning the foetus while maintaining professional composure. “We don’t know what we’re dealing with. We need to do more scans.” Sometimes it’s not what is said, but what is unsaid that leaves a mark. As clinicians, do we know how to care for patients with both the things we say and the things we do not say?

Off to the MRI scanner a couple of weeks later. This is a maternal foetal MRI showing the uterus with a foetus that has a neck mass the size of her head. The head is down, the foetus is hugging the mass. For me, this image triggers a whole lot of cognitive excitement. Differential diagnoses of the mass, anatomical distortions, airway challenges, procedural complexities, simulation, training, problem solving, etc. For the clinician, this is a foetus with an airway obstructing neck mass. For the mother, this is derailment of a dream.

Let’s take a pause. Time out. Ethics in medicine occur in 3 contexts: Timeline, Teams and Time pressures. When it comes to timeline, treatment options for this foetus differ between 14 weeks, 24 weeks and 34 weeks of gestation. In some countries, access to US and MRI is not a reality. Is this a benign lesion or is this a malignant lesion which may end up being incompatible with life? What is the future trajectory if this mass was already present right now in utero? Should a termination of pregnancy be offered in this situation? But none of our tests are 100% accurate, so what do we base treatment decisions on? Any interventional biopsies will risk the child’s life as it may trigger rupture of membrane and premature labour in a foetus with airway compression. The ethics, law and regulations around termination of pregnancy differ from state to state from country to country. Decisions made at this point of the timeline on the basis of limited information will affect future decisions. Does the ethics become clearer with time, or does it get even more muddy with each decision made along the timeline? Will mum hit the first month of life with this child and look back to say, “I wished we had decided differently?”

I respect many of our obstetric colleagues who routinely deal with high risk pregnancy and high risk foetal conditions. They would have these conversations often. Ethics occur on a timeline. Sometimes you delay, sometimes you decide. Decisions made today will affect decisions made tomorrow. Often it’s hard to detour or U-turn 10 weeks down the track. The burden of decisions at every point in the timeline is unique and I think we always need to extend grace towards other clinicians who have made decisions before us. You think you would have advised things differently, but you never know. You might still decide the same thing.

Grace for past decisions, evidence for current decisions, and hope for future decisions. Ethics in a timeline.

Let’s fast forward 14 weeks. We’re now 32 weeks’ gestation and the MRI shows the mass has gotten bigger. In the interim, mum has seen maternal foetal medicine specialist, geneticist, ENT surgeon and many other specialists. The more teams involved the more confused and conflicted the advice and plan is. This is the reality of complex care in many places. Fragmented and siloed.

This is where the clinical journey becomes more exciting. We have 2 patients, one completely dependent on the life of the other. We have a foetus with a mass the size of its own head obstructing the airway. How do we deliver this child? I am not an obstetrician and I do not identify as female, but I have been reliably informed that delivering one head is hard enough. I was present on the delivery of all 3 of my kids and boy it looked like hard work. And once delivered, how do we secure the airway in a neonate with an obstructing neck mass?

Yesterday at the SAS we heard the terms CICO, RSI, THRIVE-HI, EFONA, VAFI, FARSI. Well let me throw you even cooler abbreviations. This is CHAOS. And we have 2 options for CHAOS: EXIT or OOPS.

CHAOS is Congenital High Airway Obstruction. A foetus with an airway obstruction. Somehow we need to secure the airway. EXIT is Extrauterine Intrapartum Treatment. The foetus is outside the uterus, but still connected to the placenta. Uterine contraction is suppressed. We have up to 60minutes, high risk of haemorrhage to the mother. OOPS is Operation on Placental Support. Just like EXIT, but the uterine contraction is not suppressed. We have less than 20minutes.

Let’s go into a bit of details. Some of your clinical brains are ticking away already. For the C-section, we need to know the position of the head, the tumour and the placenta. If the placenta is low lying, we may have to approach the uterus from the top to get the baby out. If the mass and the head is big, we need to turn the head and body around to prep for intubation or tracheostomy. The obstetrician has got all these maternal factors to consider. The obstetric anaesthetist need to anaesthetise and suppress uterine contraction, and yet be mindful of possible significant bleed, massive transfusion, disseminated intravascular coagulopathy.

In my mind, I’m the one in charge of the Airway. But in reality, and rightly so, I am just one of the many involved in this mother & child care. Once we get the baby out, while still connected to the placental circulation, what’s our airway plan? And this is where the paediatric anaesthetist, the neonatologist and the ENT surgeon huddles around a 3kg baby over the mother’s open abdomen. Space is very limited. The foetus is not going to come out with sats of 99% breathing. The A is blocked. The B is not established. The C is connected to mum.

We met, planned, simulated, rehearsed. This is the practical ethics of having 5 microteams who don’t normally work together. We meet together and we created a bespoke plan for these 2 lives. Who leads. Who calls the shot. Where do we stand. Who makes the first moves. We decided that neonates was the overall leader. Anaesthesia will get a line in and make 2 attempts at intubation before handing over to ENT. Videolaryngoscopy, flexible laryngoscopy, rigid endoscopy and other intubation techniques were considered. Exact position of the baby and every team member was mapped. How do you get into the right intubation position on an open abdomen? One thing I noticed in the meetings is that initial awkwardness. We don’t want to push anyone else. We don’t want conflict. We don’t’ want to offend anyone. We don’t know how to disagree well with strangers. This is the teams ethics. We bring different values, different skills, different assumptions to this big team. Practical ethics and human factors at play. Sometimes the best option of therapy may be hidden with the most quiet team member. If human factors does not provide a platform for psychological team safety, we may not arrive at the most appropriate decision.

Ultimately, we can plan till the cows come home, but on the day itself, work as imagined may not be work as done. When timing and time pressures come into the picture, our decision-making process get affected. How long do we tolerate sats of 70-80%? Most babies come out with low sats and gradually increase with oxygenation and spontaneous breathing. The longer they remain hypoxic the higher the risk of ischaemic encephalopathy. But where do we draw the line? Different people in the team may have different opinions here. When do we move from plan A to B to C? When do I insert that tracheostomy. Will I be able to do a trache on the belly with the mass was in the way? What do you think is the worst case scenario here? A dead mother and a dead child. A review of 235 recorded cases of EXIT reported that there’s a 5% rate of PPH, and a 17% foetal mortality rate. Mother needs to know these statistics. Though there are no records of maternal death in the literature, it does not mean it has not happened. It’s just not written. The consensus is to prioritise the life of the mother, but that in itself is an ethical judgement that all teams and the mother has to agree to.

Practical ethics and decision making in context of Timelines, Teams and Time pressure.

I’m thankful that this does not happen too often.

In the context of Timeline, I’m learning to extend grace for past decisions, evidence for current decisions and hope for future decisions.

In context of teams, I’m learning to extend kindness and respect.

In context of time pressures, I’m learning to extend trust. I’m trusting that our prior planning and stimulation training will help us land at the right decisions despite being under cognitive and time pressure.

I am thankful that as I see these kids grow up as they become my long term patients as I look after their head and neck tumours. Whenever I see them, I see the delightful success of a 5 microteams working together. Be part of a team that changes the world. We may not have changed the world, but as a team, we did change their world.