This is the first of a two-part post based on my talk for FIX18 entitled A short story about death and life… We’ll publish the second part tomorrow.
“Someone will be along in a minute to explain what is going on”
Then a minute became two, three, five, until fifteen silent minutes had passed, each one seemingly longer than the last. Then footsteps…
It must have taken her an hour to cross the floor, or maybe just 30 seconds, I don’t know. I was no longer there.
“I’m sorry, Mr. Tagg, I’ve got some bad news for you….Despite our best efforts, we were unable….”
Her words disappeared and floated away with our dreams and I was lost
That was how I had found out that my daughter had died. It was a tragic accident, the result of an unexpected antepartum haemorrhage and an unsuccessful neonatal resuscitation. Something happened that day that fundamentally changed me, not just as a person, but as a doctor.
Memory is imprecise – even in times of extreme emotion when it feels like every frame is burnt into your retina like the afterimage of a photograph. These flashbulb memories have been heavily studied by psychologists and Malcolm Gladwell gives an easy to understand rundown in this episode of Revisionist History. What is most fascinating to me is that they are not always correct. So what does that mean of my recollection of the events that August?
The rarity of neonatal resuscitation
According to the Australian Bureau of Statistics a baby is born every 1 minute 42 seconds. That equates to around 8000 babies a day. Unfortunately, 7.2 per 1000 babies are stillborn and there are 2.4 neonatal deaths per 1000 live births. So in the whole of Australia, there are up to 19 neonatal deaths every single day.*
Most of us attend a delivery and never expect to resuscitate an infant. When we do a waft of oxygen is often all that is required. A Dutch study showed that around 2.6% of all births via elective caesarean required supplemental oxygen, around 1% require bag-valve-mask ventilation of some sort and only 0.1% require any more intensive resuscitation. The rates are much higher in lower/middle income countries.
Because they are such a rare event most doctors never expect to have to deal with a fatal outcome. Just as most emergency physicians obsess over the rarest of events, the surgical airway, perhaps those of us that may potentially be present at birth should be prepared to do what is necessary?
*A neonatal death is one that occurs within 28 days of birth
Absence does not make the heart grow fonder
A lot has already been written about the benefits and challenges of parental presence during the management of a critically ill child. To get you up to speed then read this post from Natalie May over on St Emlyns. The Resuscitation Council (UK) seems to think it is a good idea and most literature focuses on parental presence in either the ICU or ED setting and in an older cohort.
An exploratory interview study by Harvey and Pattison identified four key concerns surrounding the presence of the father during neonatal resuscitation in the delivery suite.
- Whose job is it to support them?
- What should they say or do?
- The importance of teamwork
- Impact on the healthcare practitioner
Think about the last time you did any neonatal life support training? No doubt you focussed on the core clinical skills – airway, breathing, circulation – with very little if no mention of dealing with the parents.
Medicine has moved on from beneficient paternalism to a more patient/parent-centred approach. It can be a hard decision to make – stay or go – but it doesn’t have to be the clinician’s choice.
Being present at a neonatal resuscitation can also be distressing for the staff involved and so one can understand how medical teams might want to shield parents from the hurt. There is concern that caregivers might interfere or get in the way with treatment. A skilled guide, such as a social worker or trained nurse, can help explain what is going on and translate the complex medical into plain English.
‘They’ll always remember how you made them feel”
In a time when infant death was a common occurrence, the prevailing thought was that grief could be avoided by preventing mothers from seeing their stillborn children. Psychologists would later theorize that an attachment bond had not been formed and so whisking the baby away without ceremony would cause no harm. By the 1970s this theory had been thrown out the window and grieving parents were offered the opportunity to see their children. Perhaps now the attachment bond is formed even earlier, through the use of antenatal screening, regular ultrasound scans and midwife visits making grief even more palpable.
There will always be questions after an unexpected death – some can be answered and some can never be. But is important for parents to have the opportunity to ask. A qualitative study by Bakhbahki and colleagues in the South West of England identified a number of parental concerns centred around the framework of transparency, flexibility, inclusivity, and positivity.
We want to know that there is a perinatal mortality review process and how it works. As one of the interviewed stated, they wanted to know “this is how your child died and this is how we investigate it“. Parents wanted to know that this process was multidisciplinary involving not just neonatologists or paediatricians but also the obstetricians in order to identify any factors that may future tragic events.
We want our children to be treated like any child should be treated – with respect – regardless of whether they are alive or dead.
The most distressing thing for me was knowing that she had been stripped of her blanket and photographed before I even had the chance to hold her.”
E.T. – a bereaved mother
There is a stigma attached to the death of a child. Society, whether it means to or not, sees the death of a child as a failure on the part of the mother. She must have done something wrong in pregnancy, she must have broken the rules. Then, these women are isolated from other newborns and their parents to the extent that they may even receive sub-optimal care.
An alternate view
It has been 8 years now and I have progressed far enough in my career to be the one bearing bad news. As an emergency physician who deals with a lot of sick and critically unwell adults, I have gone out of my way to seek formal training on breaking bad news. Specialities, such as obstetrics and paediatrics, are not exposed to death and dying on such a routine basis and very few have received formal training.
Whilst being an emotionally distant automaton may afford some protection for the clinician it is important that those breaking bad news are humans first, doctors second. I’ve written before about the power of kindness and this is one of those moments when we need to stop, look, listen and think. The death of a child, any child, is a devastating event and should be acknowledged as such.
With thanks to Tess (for letting me share our story) and my big-hearted cheer squad (Tessa, Ben, Henry, Tanya, Genevieve, Ian, and Ross)
The rarity of neonatal resuscitation
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Absence does not make the heart grow fonder
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‘They’ll always remember how you made them feel”
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Very nice article , it awake our soul from doing habitual medicine!!