Doctors who work with brain-injured newborns need humility

I’ll never forget a time I went to visit a child in the neonatal intensive care unit (NICU). I was in the waiting room during a shift change, and another mom was talking about her newborn and said that the doctor had recommended withdrawing care. “I realize he’ll have cerebral palsy,” she said, “but he’s still my my son.”

Predicting how a newborn with brain injury will be affected is a science marked with uncertainty, yet parents need to make decisions about treatment. At the same time, parents and doctors may have different beliefs about whether it’s possible to live a good life with severe disability.

Given these dilemmas—and the ethical questions they prompt—a group of researchers published an article in Developmental Medicine and Child Neurology suggesting five qualities clinicians need to keep top of mind when working with parents.

They are reflection, humility, open-mindedness, partnership and engagement.

The research was funded by the Kids Brain Health Network and brought together neonatologists, parents, child neurologists and other clinicians.

BLOOM interviewed lead investigator Eric Racine, director of the Neuroethics Research Unit at the Clinical Research Institute of Montreal to learn more.

BLOOM: What do neonatologists say is most challenging about giving a prognosis?

Eric Racine: Our paper speaks to the tension between the desire to obtain certainty about a child’s future outcomes and the lack of data to make such calls.

BLOOM: I assume that clinicians feel a lot of pressure from parents to make a definitive prediction?

Eric Racine: I think you will see parents who really desire certainty, as well as parents who are comfortable with uncertainty. There have been studies with patients and parents who say they appreciate clinicians who can communicate the uncertainty of prognoses, so it may be an assumption that we think we need to provide certainty to parents. We probably shouldn’t underestimate the complexity of information that can be conveyed to parents—not in one clinical encounter, but as part of an ongoing relationship.

BLOOM: The paper suggests that doctors hold biases against disability.

Eric Racine: Biases against disability—and a misunderstanding about the possibility of a good quality of life with disability—are common challenges and in some ways explainable. Clinicians are trained to heal, to treat, to alleviate injuries so their own professional ethos is driven by a desire to avoid ‘poor outcomes.’ For this reason, doctors need to make an additional reflection to put these values in brackets and say ‘people from different backgrounds may view things differently.’

BLOOM: What was the goal of your research?

Eric Racine: To provide an ethics framework for communication with parents of a newborn with severe brain injury. It includes a number of questions that foster self-reflection and self-assessment in clinicians. We didn’t provide guidelines because we felt that this would be too prescriptive.

BLOOM: You list five qualities that clinicians should demonstrate when working with families.

Eric Racine: Yes. The first one is reflection. This is the ability to step back and re-examine one’s immediate opinions about prognosis and ask questions. It’s having the mind-frame that no matter how much experience you have, perhaps others would think differently about the prognosis or the quality of living with those projected disabilities.

BLOOM: The next one is humility.

Eric Racine: When you realize the limitations of scientific knowledge and your own knowledge, and the existence of your own biases, you need to remain careful in giving any kind of definitive opinion about “This child will …” The idea of humility is a buffer to any form of arrogance. The clinician, who has seen many, many similar cases, may appear arrogant or distant to the parents who are really struggling at the bedside.

BLOOM: So you’re saying that because the doctor may have seen these cases so many times, they may appear indifferent to the enormity of what the parents are going through?

Eric Racine: Yes, this is something they do every day. But there are ways to be empathetic and connect with parents that dampen perceptions of being distant or arrogant.

BLOOM: I’m sure that in some ways when a doctor appears distant it is perhaps because they’re protecting themselves from their emotions.

Eric Racine: That’s why self-reflection is so important. We need to take a step back and ask ‘why are we doing things this way?’ If it’s because the situation is painful and difficult, then that needs to be acknowledged and discussed in clinical teams so that the root causes are [recognized] and addressed.

BLOOM: The next quality is open-mindedness.

Eric Racine: This is about being willing to be confronted or challenged by outcomes that contradict your prediction, or by values other than your own. A clinician may view things one way, and the parents may view it very differently. It’s important to respect where people are coming from. It’s also important to be open-minded about things not going the way you predicted they would go.

Partnership is the next idea, and there’s a whole literature supporting shared-decision making and more collaborative interaction with parents. The idea is that people bring different strengths or types of knowledge to the table. It means that maybe parents don’t have the technical experience, but they may have other important pieces of the puzzle. They may have a sense of what it will be like for them to live with a situation. There are different models of partnership.

For example, sometimes a parent is recruited to be an advisor in the NICU environment. It’s important that families know they can be connected with other families who have gone through similar situations. It may not be obvious to parents how they can be involved, so clinicians need to let them know about the opportunities.

BLOOM: When you’re talking about care decisions being made, are you mainly talking about whether a decision to withdraw care is being considered?

Eric Racine: Yes, that’s one of the big decisions. But there are other kinds of decisions related to treatment and palliative-care options. A lot of these are difficult, end-of-life situations.

BLOOM: The last quality is engagement.

Eric Racine: That springs from the fact that we’ve heard parents voice concern and sadness about the fact that when they leave acute-care there is limited support for them.

BLOOM: So you mean when parents bring a child home? That they no longer have contact with the NICU doctors?

Eric Racine: Yes. It’s important for neonatologists to realize that there’s a gap in ongoing services for the patient and for the family unit, and to do something about it. The acute-care environment needs to do a better job at bridging with chronic-care environments. It’s not good that families have such limited resources and that they feel abandoned. Clinicians need to be engaged and be advocates. They need to participate in generating long-term follow-up data. One of the critical gaps is building databases where outcomes are collected and predictions are tested for their validity.

BLOOM: I imagine that in addition to needing to have a better understanding of outcomes, it’s important for clinicians to understand how families cope over the long term.

Eric Racine: Yes. I’m in favour of collecting holistic data—not just about the disabilities and function of a child, but about the family unit and the impact on the family. Parents in acute-care want to know what it’s like to raise a child with severe neurological impairments. They want to know how that works in reality. Most people don’t have a clue about that.

BLOOM: Is there a role for stories about real families here?

Eric Racine: Yes. Those narratives would be an interesting way to engage families in conversations. It can be hard to make sense of family experiences, however. You can have a family of a child with very minimal cognitive impairment who are really, really struggling and finding it very, very difficult. And then you can find situations where the child has very severe neurological impairment but the family seems very happy.

BLOOM: I was at a conference on how the devaluation of disability influences medical care of disabled children. And a neonatologist stood up and said that in her field there was an unspoken bias where doctors are willing to go to extreme lengths to accommodate a child with severe physical disabilities. But that they believe an intellectual disability is ‘a fate worse than death.’

Eric Racine: We’re aware that there are these biases and clinicians admit they exist. We’ve done some research with Canadian physicians and we get a sense that there’s a bias towards brain health, or a negative prejudice about anything that concerns the brain. That’s now documented. But how exactly it may, or may not, impact clinical decisions needs to be further investigated.

But even if those clinical biases don’t change decisions about withdrawal of life support or the kind of care offered, they can generate profound hurt in parents and even have an impact on the relationship between the parents and the child.

Parents are left to ask: ‘Am I wrong to be caring for this child?’ They can be judged as lacking common sense. Certainly in our paper we consider these biases inappropriate. When they exist, they must be recognized and reflected on and should not be imposed on families.

BLOOM: I think the principles the paper suggests are excellent. But I wonder how a very busy doctor would have time to reflect on implicit biases they have—or even know how to do that? Wouldn’t that require some kind of ongoing training and formally bringing clinicians together to discuss these issues?

Eric Racine: You’re right about pointing to this limitation. This is a first step. I think the next step for us is thinking about how we can bring these ideas closer to a clinical environment and how we can help clinicians who want to take ownership of them and discuss them.

BLOOM: The paper talks about how doctors need to respect the value system of the parents. But what if parents of a child with a very minimal disability say they won’t accept their child?

Eric Racine: I think there are situations where withdrawal of life support would be completely inappropriate and neonatologists would step in and be advocates for their primary patient—the child.

There are also times when it’s inappropriate to continue care and parents won’t let go and neonatologists have to step in and ask questions about the meaning of the care offered, especially if it involves pain, suffering and prolonging of a life that is extremely limited. There are extremes on both ends of the spectrum.

By Louise Kinross

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Answering your question on withdrawal of fluids in newborn

On Friday a parent posted this question on the BLOOM blog:

"Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine for the pain and let him go. Is this sort of thing common?"

I contacted Dr. Jonathan Hellmann, who is clinical director of the neonatology unit at the Hospital for Sick Children in Toronto for clarity on how to answer this question.

Dr. Hellmann authored a paper earlier this year about parent perspectives on withdrawing intravenous fluids in newborns with severe neurological injury or disease where the decision to stop life-sustaining medical treatment such as ventilation is made (Withdrawal of artificial nutrition and hydration in the Neonatal Intensive Care Unit: parental perspectives). None of the newborns in the study could safely be fed orally.

According to the study, in addition to requiring the full support of the parents and the senior medical staff and team, the practice of withdrawing artificial nutrition and hydration requires "the clear demonstration of the inability of an infant to safely tolerate oral feeds (oral feeding was regarded as routine care even in those in whom it took many hours to achieve a satisfactory intake.)"

Given this criteria, I asked Dr. Hellmann whether withholding milk from a baby who is able to breastfeed -- as reported above by the parent on BLOOM -- fell outside the practice of withdrawal of artificial fluids and nutrition.

Dr. Jonathan Hellmann: Your interpretation is correct. Only if the feeding is regarded as medical treatment i.e. requiring tubes, IVs, lines etc. is it ever our practice to possibly raise the issue with parents of a profoundly affected infant. If the child is able to tolerate feeding it is absolutely not acceptable to consider withdrawal of hydration and nutrition. I am extremely concerned that individuals might interpret our findings without every effort being made to feed even small sips, and only when it is unsafe to potentially raise the issue. It is certainly not common practice here and requires very careful consideration in every case.

I hope the parent who posed the question above sees this blog and lets us know if she has more questions.

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I say 'gobbledygook!'

I know nothing about philosophy in the academic sense.

And, after reading this paper published in the Journal of Medical Ethics, I have no interest in knowing anything about it.

In After-birth abortion: Why should the baby live? a philosopher and an ethicist argue that killing newborns – before they have neurological self-awareness – is ethical for children with disabilities, because it's assumed they would be an unbearable burden to their families and society. They also argue that infanticide is ethical for a healthy baby with no disabilities, if that baby might compromise the psychological, social or economic wellbeing of parents, siblings and society.

In a nutshell, Alberto Giubilini and Francesca Minerva argue that if a newborn is disabled, not wanted by his or her mother or too expensive, it's ethical for doctors to kill the baby.

In their article, the academics attribute the right to life only to individuals who can appreciate their existence and have ‘aims’ or dreams for the future, so that depriving the person of that life would be experienced as a loss. If individuals can’t value their life and plan for the future, because their brains are in the newborn state, or because they have a disability, the philosophers categorize them as non-persons who would not be harmed if killed.

“Merely being human is not in itself a reason for ascribing someone a right to life,” is how they so eloquently put it.

The philosopher/ethicist duo say that killing newborns who have severe mental and/or physical disabilities is ethical if the parents would have aborted the child in advance – if only they had the knowledge.

An example given is Treacher Collins syndrome, a rare genetic condition that Giubilini and Minerva describe as causing ‘facial deformity’ and physiological ‘failures,’ including potentially life-threatening respiratory problems.

Hmmmmmm. I thought. I remembered the name Treacher Collins because when my son was a toddler we visited an ear-nose-and-throat specialist at a world-renowned children's hospital who mentioned the syndrome in passing, noting that some of the facial differences were similar to those seen in my son. In fact, when telling us about Treacher Collins, the ENT said that Sylvester Stallone had the condition, and that while people with Treacher Collins had facial differences that required reconstructive surgery, they were intact intellectually and led full lives.

That doesn't seem to line up with the journal article's description of 'physiological failures' and life-threatening respiratory problems.

I did a quick search online and came across this blog by a young woman with Treacher Collins who is a physician in internal medicine, pediatrics and sleep medicine. She is also married and from the looks of the blog, loves her life.

Guibilini and Minerva note that people with Treacher Collins have typical intelligence so they would be aware of how ‘different’ they are and of all of their problems (seeming to imply that this would make death a better option).

They also tell us that 'many parents' would choose to have an abortion if they found out their child had Treacher Collins prenatally (not sure how they produce evidence of this claim, since it is not a standard syndrome tested for).

It seems to me that our philosopher and ethicist were looking for a syndrome that's not part of the regular prenatal testing battery to give an example of a situation in which parents don't have the option of aborting because they don't know of the diagnosis. Unfortunately, they didn't take much time to actually research Treacher Collins or speak to people living with it.

They lament the fact that in 18 registeries in Europe between 2005 and 2009, 'only' 64 per cent of ‘Down-syndrome cases’ (remember, we’re not talking people here), were detected prenatally, and that 1,700 babies with Down syndrome were born to parents who learned of the diagnosis at birth. For some reason, the philosophers don’t make the leap of understanding to consider that perhaps the parents of those 1,700 babies chose not to have prenatal testing because they decided to carry a child to term whether the child had Down syndrome or not.

They end this section with this bizarre statement: “Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.”

In this statement I can hear my 13-year-old son whining "It's not fair," and myself responding, "There are lots of things in life that aren't fair. But that's life."

Hello! Who said control over our circumstances is attainable in this life? Coming to grips with our vulnerability is part of the growing-up process which seems to have been lost on these academics. How would these philosophers ‘solve’ the problem of our mortality? Because I am sure there are many people who might not choose to die either.

But back to the article.

Giubilini and Minerva note that euthanasia in infants has been proposed by philosophers for children with severe abnormalities who meet two conditions: their lives are not worth living (they don’t define this – although we can assume from earlier comments that they equate an unworthy life with intellectual OR physical impairment that limits a person’s ability to envision or achieve their aims or dreams). The other condition is that they are experiencing unbearable suffering.

They tell us it is reasonable to predict that living with a severe condition is against the best interest of the newborn. They don’t say on what they base this prediction, but it’s interesting to note that while economists analyze quality-of-life years using models that assume low quality of life for people with chronic illness and disability, large-scale studies of self-reported satisfaction in people with disabilities paint a different picture.

Dr. Chris Feudtner, a pediatrician and director of the department of medical ethics at the Children's Hospital of Philadelphia went to great pains to describe this in a talk he gave at the Montreal Children's Hospital last year.

But our philosophers were not listening.

The article is full of contradictions -- on the one hand mentioning studies that find people with severe disabilities are happy, on the other, creating an image of the same people suffering unbearably.

Which one is it?

 They argue that the interests of ‘real people’ – who they define as parents, siblings and society at large – come before those of the newborn, who is a non-person, whether disabled or not. In fact, they suggest the term ‘after-birth abortion’ be used, rather than infanticide, because they compare the newborn to a fetus rather than a child.

“Actual people’s wellbeing could be threatened by the new (even if healthy) child requiring energy, money and care which the family might happen to be in short supply of,” they write.

And: “If a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden on someone, then people should be given the choice of not being forced to do something they can’t afford.” Since they believe the newborn does not yet exist as a person, they perceive the newborn as expendable.

Can't you hear that voice of my 13-year-old: "Why do I have to? It's not fair!"

Guibilini and Minerva even go so far as to say that a healthy newborn could ethically be killed rather than being placed for adoption because the idea of adoption might be more psychologically distressing to the mother.

The killing of disabled newborns would take place within a few days of the birth, they say, which they believe is enough time for the doctors to detect abnormalities. Further, in the case where a child is healthy, the killing can take place outside of any time threshhold as long as neurological assessments determine the child is not self-aware.

Minerva is quoted in the Daily Mail as saying: "This is not a proposal for law. This is pure academic discussion.”

The picture that runs with the piece shows a young woman (20-something?) who was formerly at Oxford and is now at the University of Melbourne.

Perhaps Minerva would like to consider the psychological 'harm' done to the wellbeing of 'real' families like ours who have to read her drivel? We can only hope that in the next few years she gains some life experience, is humbled and comes to her senses.

The editors of the Journal of Medical Ethics defended publishing the article in the name of intellectual freedom. I'm more interested in intellectual rigour.

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A fate worse than death?

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities.

One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability.

A neonatologist in the audience made the following comment.

“There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.”

Neonatalogists care for newborns with complex, life-threatening problems related to prematurity, illness or congenital disability.

I think the stigma that intellectual disability is worse than physical disability is widespread, even within the disability community itself.

We can't know if what the doctor said about the pervasiveness of this attitude in neonatology is true. Perhaps she is ascribing her own bias to others. But it would certainly be shocking if specialists trained in the care of disabled newborns held such views.

According to the American Academy of Pediatrics, neonatologists go to medical school for four years, then train as pediatrics residents for three years, then train for three more years in newborn intensive care. That’s a decade of learning.

Is it reasonable to expect that in this 10-year span the attitude that intellectual disability is worse than death would be challenged?

Neonatologists, as part of their training, should be required to have extensive interaction with families of children with intellectual and other disabilities, so they have a firsthand understanding of what life with these conditions is like. I hope we hear from a neonatologist about what kind of exposure to families of children with disabilities is included in their training.

At the Montreal conference we also heard about the Disability Paradox – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

And we heard about research that shows that the way a health problem is framed influences the decision a family makes about treatment choices. How clinicians order information, the words they choose and even the tone of their voice can have a significant impact on how parents of children make medical decisions.

If a neonatologist were to believe that intellectual disability is a fate worse than death, how could that bias not seep through when conveying this diagnosis to families? Wouldn't that belief run contrary to communicating that a child with intellectual disability has value?

When a life hangs in the balance, I believe parents should receive the most complete information about intellectual disability, including the perspectives of families whose children live with it.

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