A short story about death…

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.

Flashbulb memories

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.

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.

So what could be done better?

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)

Selected References

The rarity of neonatal resuscitation

*De Luca R, Boulvain M, Irion O, Berner M, Pfister RE. Incidence of early neonatal mortality and morbidity after late-preterm and term cesarean delivery. Pediatrics. 2009 Jun 1;123(6):e1064-71.

Kerber KJ, Mathai M, Lewis G, Flenady V, Erwich JJ, Segun T, Aliganyira P, Abdelmegeid A, Allanson E, Roos N, Rhoda N. Counting every stillbirth and neonatal death through mortality audit to improve quality of care for every pregnant woman and her baby. BMC pregnancy and childbirth. 2015 Dec;15(2):S9.

Knight M, Draper ES, Kurinczuk JJ. Key messages from the UK Perinatal Confidential Enquiry into term, singleton, intrapartum stillbirth and intrapartum-related neonatal death 2017.

Lawn JE, Lee AC, Kinney M, Sibley L, Carlo WA, Paul VK, Pattinson R, Darmstadt GL. Two million intrapartum‐related stillbirths and neonatal deaths: where, why, and what can be done?. International Journal of Gynecology & Obstetrics. 2009 Oct 1;107(Supplement):S5-19.

Lee AC, Cousens S, Wall SN, Niermeyer S, Darmstadt GL, Carlo WA, Keenan WJ, Bhutta ZA, Gill C, Lawn JE. Neonatal resuscitation and immediate newborn assessment and stimulation for the prevention of neonatal deaths: a systematic review, meta-analysis and Delphi estimation of mortality effect. BMC public health. 2011 Dec;11(3):S12.

Richmond S, Wyllie J. European resuscitation council guidelines for resuscitation 2010 section 7. Resuscitation of babies at birth. Resuscitation. 2010 Oct 1;81(10):1389-99.

Wilmink FA, Hukkelhoven CW, Lunshof S, Mol BW, van der Post JA, Papatsonis DN. Neonatal outcome following elective cesarean section beyond 37 weeks of gestation: a 7-year retrospective analysis of a national registry. American journal of obstetrics and gynecology. 2010 Mar 1;202(3):250-e1.

Wyllie J, Bruinenberg J, Roehr CC, Rüdiger M, Trevisanuto D, Urlesberger B. European Resuscitation Council Guidelines for Resuscitation 2015: Section 7. Resuscitation and support of transition of babies at birth. Resuscitation. 2015 Oct 1;95:249-63.

Absence does not make the heart grow fonder

Boie ET, Moore GP, Brummett C, Nelson DR. Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents. Annals of emergency medicine. 1999 Jul 1;34(1):70-4. Cacciatore J, Rådestad I, Frederik Frøen J. Effects of contact with stillborn babies on maternal anxiety and depression. Birth. 2008 Dec;35(4):313-20.

Fulbrook P, Latour JM, Albarran JW. Paediatric critical care nurses’ attitudes and experiences of parental presence during cardiopulmonary resuscitation: a European survey. International journal of nursing studies. 2007 Sep 1;44(7):1238-49.

Harvey ME, Pattison HM. The impact of a father’s presence during newborn resuscitation: a qualitative interview study with healthcare professionals. BMJ open. 2013 Jan 1;3(3):e002547.

Nederstigt I, Van Tol D. Parental presence during resuscitation. Resuscitation. 2008 May 1;77:S61.

Offord RJ. Should relatives of patients with cardiac arrest be invited to be present during cardiopulmonary resuscitation?. Intensive and Critical Care Nursing. 1998 Dec 1;14(6):288-93.

Sawyer A, Ayers S, Bertullies S, Thomas M, Weeks AD, Yoxall CW, Duley L. Providing immediate neonatal care and resuscitation at birth beside the mother: parents’ views, a qualitative study. BMJ open. 2015 Sep 1;5(9):e008495.

Tripon C, Defossez G, Ragot S, Ghazali A, Boureau-Voultoury A, Scépi M, Oriot D. Parental presence during cardiopulmonary resuscitation of children: the experience, opinions and moral positions of emergency teams in France. Archives of disease in childhood. 2014 Jan 6:archdischild-2013.

‘They’ll always remember how you made them feel”

Badenhorst W, Riches S, Turton P, Hughes P. The psychological effects of stillbirth and neonatal death on fathers: Systematic review. Journal of Psychosomatic Obstetrics & Gynecology. 2006 Jan 1;27(4):245-56.

Bakhbakhi D, Siassakos D, Burden C, Jones F, Yoward F, Redshaw M, Murphy S, Storey C. Learning from deaths: Parents’ Active Role and ENgagement in The review of their Stillbirth/perinatal death (the PARENTS 1 study). BMC pregnancy and childbirth. 2017 Dec;17(1):333. Bonanno GA, Kaltman S. The varieties of grief experience. Clinical psychology review. 2001 Jul 1;21(5):705-34.

Boyle FM, Vance JC, Najman JM, Thearle MJ. The mental health impact of stillbirth, neonatal death or SIDS: prevalence and patterns of distress among mothers. Social science & medicine. 1996 Oct 1;43(8):1273-82.

Flenady V, Boyle F, Koopmans L, Wilson T, Stones W, Cacciatore J. Meeting the needs of parents after a stillbirth or neonatal death. BJOG: An International Journal of Obstetrics & Gynaecology. 2014 Sep;121:137-40.

Flenady V, King J, Charles A, Gardener G, Ellwood D, Day K, et al.PSANZ Clinical practice guideline for perinatal mortality. Perinatal Mortality Group https:// www.psanzpnmsig.org.au. Perinatal Society of Australia and New Zealand, April 2009; Vol. Version 2.2.

Koopmans L, Wilson T, Cacciatore J, Flenady V. Support for mothers, fathers and families after perinatal death. Cochrane database of systematic reviews. 2013(6).

Mills TA, Ricklesford C, Cooke A, Heazell AE, Whitworth M, Lavender T. Parents’ experiences and expectations of care in pregnancy after stillbirth or neonatal death: a metasynthesis. BJOG: An International Journal of Obstetrics & Gynaecology. 2014 Jul 1;121(8):943-50.

Nuzum D, Meaney S, O’donoghue K. The impact of stillbirth on consultant obstetrician gynaecologists: a qualitative study. BJOG: An International Journal of Obstetrics & Gynaecology. 2014 Jul 1;121(8):1020-8.