Special Report: Life at 24-weeks
When a baby is very premature, parents and doctors are forced to weigh the metrics of life, death and cost.
Angela is staring at the blood-strewn vomit splattered across the bathroom floor. She is in shock.
In a few minutes she'll be in the car, driven by her husband Kirk, through the Sydney streets to Royal Prince Alfred Hospital, where doctors and nurses will fight to save her life as her organs start to shut down.
Time accelerates before splintering under the velocity. There's the moment when she has reached the hospital, crawling out of the car, more vomit at her feet. Then the rush as onlookers run to gather her up. The moment when her sister is grabbing her hand — eyes filled with fear — telling her what the doctors are saying.
She looks at her sister. "I don't want to die." She thinks of the baby she is carrying inside her. "I love my baby, but I don't want to die." Then Angela's mind is carried elsewhere and she's looking down from above, on the nurses and doctors swarming around her body.
Later that night a doctor walks into her room wanting to talk about an emergency caesarean. It does not register at first. A birth? She is 24 weeks' pregnant. The words keep coming. The doctors are talking about "all possible interventions". But there is another option, they say. They could also help her baby in a different way. They could make him "comfortable".
Clasped in the doctor's hands are cards outlining survival rates at various weeks of gestation. Angela is at 24 weeks and four days. According to the cards there is a 50-50 chance for her baby if they resuscitate. But other cards bear more numbers, about the possible price that might be paid — a life with cerebral palsy, catastrophic brain damage.
Angela and Kirk need to work through this grim algorithm. The only thing that really registers is the 50-50 chance. The single thought flooding her mind is this: a 50% chance — as an alternative to what?
"Of course I want him to fucking live!"
After 35 days in the neonatal unit, Angela was told her son Toby might survive.
Each year, around 450 of the babies born in Australia are so-called "micro prems", infants whose lives flitter at the edge of human viability.
Their survival is the miracle of neonatal intensive care. The discovery of surfactant, and the subsequent revolution in the understanding of pulmonary function, has given breath to their barely formed lungs.
With breath comes hope. But these babies also embody ethical dilemmas. Should we treat viability as the point where human life can be said to begin, the point at which our entire ethical universe undergoes its Big Bang? And given the risks of a baby surviving wracked with disability, do we have a duty to intervene. Are these medical wonders worth it?
You sense that the medical profession has remained sceptical as it has watched the limits of viability pushed back over the past 30 years — from 28 weeks' gestation to 26 weeks, and now to what neonatologists believe is the final frontier of 22 weeks.
Much of the debate has become a pained academic struggle to balance our instinctive faith in the sanctity of human life with our incompatible preference for utilitarian practicalities. How much this impacts on the day-to-day world of Australian's 22 main neonatal ICUs is a moot point. The consensus on when to intervene and when to step away seems to have hardened among the clinicians and is rooted in outcome statistics.
Today, babies delivered before 23 weeks' gestation are not resuscitated. Half will die following intervention. For the other half, the statistics suggest odds loaded towards a terribly crippled life. At 25 weeks the involvement of a resuscitation team becomes automatic. Medical practice is explicit — to do nothing at this stage becomes an act of negligence.
The days between are given the somewhat bloodless title of the "grey zone" where outcomes are generally deemed so clouded, clinicians no longer make the resuscitation decisions alone. Instead they are left largely, although not always exclusively, with the families.
"At 24 weeks, we sit in the middle," says Associate Professor Nick Evans, director of neonatal intensive care at Royal Prince Alfred Hospital, Sydney. "Our view is [that] it is a perfectly reasonable choice not to intervene, given the burden the baby has to go through. But we need to be together and stress that whatever decision the families make, we will support them."
The teams at RPA use those palm cards seen by Angela. And they are common across Australia's neonatal units. There are good reasons. Those finely weighed bioethical arguments tend to get obliterated in the pain and confusion of bitter reality. Around half the women who give birth so early get no warning of what is coming their way. The decisions they make amid this trauma can carry with them immense emotional damage, marriage and family break-up, Professor Evans says. "There is much triumph and tragedy in what we do.
"Trying to give the parents a true impression of the implications of what they decide — that is very hard. We run through survival chances, run through why the babies die and risks of long-term problems and what those problems are … But we have not solved this challenge."
Sometimes treatment, when clearly futile, will be stopped at his behest. And sometimes he sees the burden of choice become too much for the parents to manage, and he will carefully pull the decision-making back towards him and his clinical team.
Are you sure you want to go through with this?
Time mutates again. "Are you sure you want to go through with this?" It is one of the doctors. Angela is in pre-op. Again there is no choice, she thinks. Die or deliver. The epidural goes in. Nurses have been calming her, telling her everything will be alright and that they will look after her son. The caesarean takes minutes. She hears her baby cry and then he is taken away. She doesn't see him.
It could be hours or days later, she has no idea, but she is being wheeled on the trolley through the maze of hospital corridors. There is a nursing team around her, holding the puppetry of wires, drips, and tubes attached to her body. She is still critically ill, but for now she is leaving the high dependency unit to see her baby.
She finds him lying in the crib, tiny, bald, his baked-looking skin smeared with protective Vaseline. His eyes are still shut to this alarming new world where the throb of a maternal heart beat has become the electronic pulse of the life support. Seeing him this way strips Angela of maternal sentiment. She sees a brute, alien existence. It feels unreal. This baby is not hers. She's looking at her stomach, thinking she is still pregnant, and it takes a deliberate act of imagination to make this all real again and allow the love to come to her, and with that love, fear.
Angela and Kirk named their son Toby. "I love you," Angela whispered to Toby. "Please come home."
In the following days she makes more visits. The next time she touches him, his tiny spider hands are so small they barely curl across her thumbnail. But she can't make the visits alone. Along the corridors, towards the doors of the unit, her heart races, the walls falling away from her as in a horror flick. She is left breathless by the thought of losing him, by the dread of bad things happening.
And bad things do happen — her son gets a serious infection, he's on the ventilator again, exhausted, rib-skinny and still losing weight. He drops to 555g. His lungs collapse. He undergoes retinal surgery to heal the damage inflicted by the oxygen therapy. Giant pads cover his eyes, a single breathing tube strapped to his mouth.
But with the hours spent sitting and watching and waiting, the faces around Angela, the neonatal ICU mothers, the nurses, the hospital staff are growing more distinct. They become her extended family, offering some collective protection against what they are all going through. And with them here, the machines, the indifferent messengers of looming life and death, are losing their menace.
They name him Toby. And she begins whispering: "I love you. Please come home."
The dollar cost
What is the dollar cost of keeping micro prem babies alive?
The figures can be found in hospital data, the book-keeping inventories of the health system. Episodes of care are drawn into diagnostic resource groups, so-called DRGs — P61Z and P62Z are the DRG codes for extreme pre-term babies.
In 2011, the price tag on P62Z, which covers the intensive care for a baby less than 1000g, was $154,565. For P61Z, covering intensive care for a baby born less than 750g, it is $224,358. These are average costs: from babies who die after a few days to babies who eventually leave intensive care for high dependency units. And they cover everything in the ICU: the clinical treatments, the nursing care, the imaging, the drugs, right down to the floor cleaners, the light bulbs and the cost of washing the bed linen.
Save the $312,000 for the insertion of ventricular assist devices, P61Z and P62Z are the most expensive DRGs in the Australian health system — the slice of the budget they consume is relatively small, around $130 million a year.
Answers to a second question — whether these vast health dollars are worthwhile — have been relatively slow in coming.
Numerous cohort studies across the world that address this question are now moving into their second or third decades. They include the Victorian Infant Collaborative Study, set up in the late 1970s to track the generations of micro prems at age two, five and 14. It remains a landmark in Australian neonatology.
For the purposes of cost-benefit calculations, these child survivors are generally divided into four groups. For each year of life, the researchers will give them a "utility rating".
This is the health economist's primary tool — the QALY, the quality adjusted life year. A year of perfect health gets 1. Those with mild disability, the ratings generally gets fixed at around 0.8; moderate disability at 0.6. For severe disability — the worst outcome category — the children are rated at 0.4.
The aim of this scale is to combine the costs of interventions with life expectancy. The higher the level of disability, the lower the ratings, the greater the money needed to generate the numbers for a perfect health year.
The methodology carries with it the appearance of a cool, smooth rationality. But beneath the skin, this elaborate calculus is riddled with moral conundrums. For instance it is worth asking what is meant by "severe disability," because these are not just catastrophic "life worse than death" conditions that has given neonatal intensive care its bad name. Severe disability in the Victorian collaborative included severe mental retardation, but also includes those children who are blind and those unlikely to walk, but who are cognitively unimpaired.
Another complicating factor is that the utility ratings are not the product of any specialist assessment. Utility ratings are generated through a bizarre democracy where votes are cast through community surveys. Health economists ask individuals to rate what it would be like to live with various illnesses and medical conditions. It is conducted through an exotica of thought experiments — the "standard gamble", "rating scales" and "time trade-offs".
Under "time trade-offs" you generate a 0.4 rating for blindness if you would exchange one year of blindness for five months of perfect health. Suggest two and a half months, it moves to 0.2 of a quality life year.
According to the doctor's notes, there was a 50-50 chance for Toby if the doctors resuscitated.
Many have wondered whether the wider community should be making these calculations or if they should be made only by those with the condition. It is an important issue, because research suggests that people with disabilities rate the quality of their lives far higher than their families would — higher than the wider public, and higher than the medical professions, which appears to have a particularly gloomy view of what disability means. Yet the common approach is to ask the community, because the community pays the hospital bills.
Intellectual disabilities, the dominant risk among extreme preterm babies, is the area where utility analysis gets pulled into the ethical quagmire.
To imagine your life without sight or in a wheelchair is conceptually easy. But can you imagine your life with severe cognitive impairment without mutating your own identity — the thing that makes you, you — to the point where you are imagining someone else entirely? And if the thought of being intellectually disabled fills you with horror, why should that be used to condemn those who may have no insight or care for their alleged limitations? In the end, don't you find yourself judging not the condition someone suffers, but just the someone?
Although cost—benefit studies are sold as objective assessments of the millions ploughed into neonatal intensive care, for many the dice seem loaded. Push the disability ratings further down, and neonatology interventions for the 450 extreme pre-term children born each year can look like an expensive inhumane disaster.
No one says the QALY concept is without flaws. With limited resources, rationing judgements must be made and QALYs are the thing you are left with when you ask cost—benefit questions. The irony for Australian neonatology — faced with wider scepticism about its real achievements in treating micro prems — is that cohort studies have been crucial to its reputation.
Two key papers based on the Victorian study were published in 2004. Led by Professor Lex Doyle, a neonatologist at the Royal Women's Hospital in Melbourne, they concluded that the success of interventions in smaller and smaller babies has been transformed over 20 years. Survival rates for babies below 1000g shifted from 25% to 73%. Crucially, the returns on the enormous investments needed had remained relatively stable. In the jargon, the "efficiency" of interventions were still cost-effective.
The Victorian study wasn't set up to compare neonatal interventions with other medical interventions like vascular stents, statins or routine ICU for patients near the end of life — the intervention every neonatalogist cites to justify what they do. But the study has allowed neonatologists to argue that the health dollar isn't being used to create generations of badly disabled children.
Dr Andrew Watkins, clinical director of paediatrics at Mercy Hospital in Melbourne, said: "[It] allowed us to make clear to funders that the money spent on babies actually produced a lot more bang for the buck than the money they were about to spend on people like themselves, middle-class, middle-aged men looking at their first or second coronary bypass."
"At the time, the perception of NICU was that it was a waste of money. When I worked in the UK there was an anecdote doing the rounds about Margaret Thatcher. When she was British Prime Minister, she was introduced to a leading figure in British neonatology, at a reception at the University College Hospital. ‘Oh,' she said. ‘So you're the man who makes all those disabled children for a living'."
Toby is now five and thriving.
Toby walks into the lounge room. He's a 0.8 utility rating — mild disabilities — if you want to calculate his outcome value.
He's carrying a book and in the book is the story of his first 121 days. There are no soft focus images. The pictures carry a hard edge. "This is me. This is me". He's turning the pages, from his fetal life lived outside the womb, to the pictures of him bigger and fatter moving towards discharge and home.
Now, five years on, he stands smiling a big smile and then he suddenly turns away, climbs across the couch, holds his baby sister Jessie and smothers her with kisses.
For Angela, it took 35 days in the neonatal ICU before one of the RPA neonatologists turned to her and said in a low, flat voice, "I think he might actually survive". It ran through her like electricity.
But Angela saw the trauma wreaked on those families whose babies died. Hearing her talk, you sense the immense bonds forged as they endured their nightmarish lottery. For some the machines get switched off, the cots emptied, the funeral date set as another life arrives to replace the one lost.
And Angela has also been with the families whose child suffers a catastrophic brain bleed, and lives.
Yes, there are the cases of what gets dubbed ‘life worse than death'. And these children and their families often seem to exist silently in the shadows of the stories about miracle babies. Apparently these tragedies remain rarities in Australia.
Within the community of mothers Angela knows, no one ever regrets their decision for resuscitation. The ties of parent—child love attract no utility value. They don't appear in the calculations. That is the hole in their heart.
Speaking of her own experiences, Angela says: "I'm glad we were given the decision. I don't know what the doctors would have decided left to themselves. I think when you are talking about a baby's brain, about the cognitive issues, then you have to listen to the doctors. We were always open to what the doctors say.
"Had it been Toby's brain affected, then we could have made different decisions. My mum being a nurse, we saw as kids the old people's homes and you went out there and you saw what dementia was, what it did. We knew what it can be like to live like that .. We knew what it would be like when there is no one left to look after you.
"I don't agree with money as an issue, but quality-of-life is. I do know a couple of 23-weekers. They are doing okay." There is a slight pause. "But it is such a tough one."
|Outcomes among extremely preterm infants at 18-22 months|
|Gestation||Survivors||Survival with profound impairment||Survivial with severe impairment||Survival without severe or profound impairment|
|Profound impairment: Bayley score under 50; IQ less than 55; assistance required to move|
|Severe impairment: moderate or severe cerebral palsy; blindness; bilateral hearing loss requiring amplification.|
This article was originally published on Australian Doctor on 14 August 2013.