This post was adapted from a talk given in May at the wonderful Neonatal Advanced Practice Nursing Forum in Washington. We had a fantastic discussion about “routine” testing in the NICU, and I share these notes now because I think the discussion is worth continuing, especially after reading some great posts about MRIs and neonates.
The subject for today is “routine” testing in the NICU. I put “routine” in quotation marks because, as I think we can all agree, what is routine to staff members is not routine to families at all. There is a culture surrounding medical testing in the NICU, and I want to discuss the impact of that culture on families, and talk about ways of managing our responses (both clinical and familial) to tests and the discussions that follow.
I first met my baby, born at 25 weeks and weighing 500 grams, hours after her birth. I remember being standing by her incubator, desperate for knowledge about her. I wanted someone or something to tell me if she was whole or un-whole. Not only that, but I was seeking a level of certainty, or maybe even a type of fortune telling, from the people around me. It was not just our baby I was seeing – this was our family’s future I was looking at, and I was desperate to know more. Though I wanted to hear all the information, and see all the results, I was afraid of it too. I felt like I was being hit by wave after wave of test result after test result, and I didn’t know what was important and what wasn’t. I assumed everything was vital, and I remember sitting around feeling sick to my stomach waiting for someone to come and talk to me, to give me the latest update. That feeling of tension stays with me even now, and comes with me to every doctor’s appointment, even though our days of medical tightrope walking are (mostly) behind us.
I think medical caregivers and parents in the NICU are looking for different things when they look at test results for these tiny people. Medical experts are looking for evidence to tell them what a baby needs and what should happen next. Parents are looking for something we probably can’t have – certainty, security, promises. Now that I work in an NICU, I see these parents every day, seeking answers that can’t be given, and my heart goes out to them. These are two halves of a mostly unspoken conversation.
This brings me to the central question – do these two halves of the conversation actually fit together? If not, why not? And if not, what are the actual conversations that need to happen? If our babies in the NICU need certain things from us, what do NICU families need?
A delicate balance
So let’s imagine a baby’s clinical trajectory in an NICU. A micropreemie (a baby born very early and very small) is going to experience many types of ups and downs while in the hospital. Caregivers spend a lot of valuable time in NICUs seeking to smooth out these jagged ups and downs. That’s part of why there is so much testing – to eliminate these unexpected lows and setbacks. Tests can tell us what to do next; they can produce necessary actions. It’s an exquisite balancing act because these small people can be so hard to keep in balance.
But babies are only one of the crops (as it were) in the NICU. There is something else that grows there as well.
And much as we see a baby’s clinical path as a jagged up and down path, and we put a lot of effort into smoothing out that path … a family travels over an emotional/psychological path as well . Something that wise people in NICUs have been learning over the last few decades is that if we want to grow healthy families as well as healthy babies, we would be well served to pay the same kind of exquisite attention to keeping families in balance.
So what can NICU caregivers do to help families stay in balance, especially with respect to managing the emotional burden of clinical testing? If we think about building blocks of resiliency (which can include purpose, identity, community and information), is there a way to adjust the culture of medical testing to help build strength in families, and make testing become a part of an empowering conversation?
What it feels like for families
First, we have to understand what it feels like for parents to experience the near-constant barrage of medical tests. Through the Canadian Premature Babies Foundation I asked families – 86 of them actually – about their thoughts about and experiences of testing in the NICU. These were all level 3 families, who were from NICUs across the country, and they had lots to say about their experiences.
One mother shared something directly with me and I asked permission to include her words here, because I think they illustrate some of the burden that testing can place on parents.
“They came to tell me that my son had a terrible bleed in his brain. They couldn’t tell me what it meant or what they could do about it. I didn’t sleep for three nights wondering what his future would be. Now I look at him and cry. I can’t do anything to help him. I wonder if I was right to want to have a baby.”
Now, these words are from a few months back, and things have changed now for this mother and her baby. He is doing very well and she is enjoying him, and so far he does not seem to be showing signs of the major disability she was expecting. But I ask you: when you read these words, what problems might this test and the results have caused for this mom?
Could they be putting her attachment to her baby at risk?
Does she feel powerless?
What can she do next? Does she have a sense of purpose?
These are questions that we need to answer. When parents get test results, do they receive them in a vacuum? Are we considering the impact on a parent’s mental health, or on attachment? Or can caregivers share results in a way that leads to an increased sense of purpose, rather than disempowerment?
Another theme that came up in the comments in the survey is that babies who are hospitalized for many weeks go through dozens of tests, over and over again, and the impact of this creates a kind of toxic stress environment for parents. The best medicine for this is information … timely, practical information.
Let’s look more closely at a couple of the survey questions and see what else parents had to say.
Giving parents a sense of purpose
There is huge room for improvement here. Right now, in Canadian NICUs,
- 55% of the time no information was given to parents about what they could do to help with blood tests
- 48% of the time no information was given to parents about what they could do to help with their baby’s brain development
- 33% of the time parents were asked to leave the room during routine hospital tests (blood work, eye exams, ultrasounds)
We can do better than this! We can give parents something to do. We can use parents to help with painful procedures. We can teach them about how their touch, their milk, their voice can help their babies. We can educate about kangaroo care and the impact on the brain, and we can engage parents instead of excluding them.
- 32% of the time parents were not given advance information about routine tests
- 30% of the time parents were not given timely notification of results
- 46% of the time parents said follow-up conversations were rushed, inconsistent or non-existent.
Again, we see some clear opportunities for improvement. We can be clearer about letting parents know what is going to happen, when it is going to happen, and why it is going to happen. We definitely have opportunities to improve the quality of the follow-up conversations – almost half the time the quality of these conversations was inadequate. When you think about the importance of these conversations to parental well-being … when you see them as a way to eliminate some of that damaging toxic stress from the parental experience, you can see why it is so vital to focus on making these conversations timely and thorough.
Choose wisely … and then mitigate
I know there is a broader discussion about this going on in medicine these days, and I find it fascinating – and I just want to borrow a bit of the rhetoric for this discussion. If you agree that there is potential for harm with EVERY test, then I think it becomes important to be really clear about why we are doing them. Are we doing them because the patient needs it, or are we doing it because that’s what a checklist tells us to do? Are we doing them because they are giving us necessary information for today and tomorrow, or do we think they will tell us something about the future? I think we do have an obligation to look at every test we do on these small people and ask ourselves these questions.
WHY THIS particular test? Is this the best way to get the answer we need?
Once we justify the test, then we can move to mitigation. So we have to do it because the patient needs it … so how do we make it better? If there is pain, how do we address it? How do we engage the parents? How do we initiate communication about the test and how do we close the communication circle by sharing results? Does the parent know what will happen next, and have we given the parent something to do?
Now I will step out of my comfort zone to ask some questions about why we do head ultrasounds when we do them. The reason I focus on these is because in our Canadian context, these are the tests that probably cause the greatest amount of stress for families.
I think the evidence is very clear that they are not all that predictive. For example, we see children who have had “terrible” head ultrasounds waltz into our follow up clinic years later, and we have seen kids with “good” scans end up with severe disabilities. I think the way we approach them or present them can make ultrasounds seem – to parents at any rate – like a prediction of the future, but they are certainly not.
The question I have about early head ultrasounds is: why do that test at that point? These early tests often serve as a pivot that turns care in one direction or another, either toward continuing care or offering palliative or comfort care. I do not want to suggest that we should never have these conversations. They are important conversations and sometimes exactly the right conversations that have to happen. But is this the test that should prompt them? And if we decide that yes, it is necessary to do these head ultrasounds, are we doing enough to support parents through them? Are we giving parents full and comprehensive information about what this test actually means, and what they can do about the results?
Because right now, I think in the majority of units, the two halves of the conversation that happens (the clinical conversation with the data and the statistics and the outcomes) and the parental conversation (the one that is asking for hope, for a prediction about the future, for some certainty that probably can’t and shouldn’t be given) … these two halves do not match up.
There is a lot of interesting discussion going on these days about MRIs and I wade (as a non-clinician) very hesitantly into this territory … but I bring it up because I think this might be another area where there are two halves of a conversation happening that don’t really fit together as they should. There was a fascinating article published recently in a science journal called Nature. “The Brain, Interrupted” tells the story of a family who had a micropreemie, and who decided to continue with care based on the results of his MRI.
It’s an excellent article, and worth reading in full. But I want to focus on one small part of it. The mother gives credit to neuroscience for determining that her son would have a a reasonable quality of life. But what actually gave him that quality? After you read the article, you realize that it is not a test that saved him. It was his parents who supported him, a medical team who helped him, and the interventions that he is receiving. Not a test but a series of actions.
But lest I sound like I’m throwing another mother under the bus here – and I am really not, because I completely understand and empathize with her perspective – she ends with this quote: “I really hope that they will soon translate what they are discovering into concrete actions that parents can usefully undertake.” And with that, I can whole-heartedly agree.
I want to be very clear here. I know caregivers in NICUs have immense clinical wisdom, and loving hearts, and they will do what their tiny patients need them to do. I know an immense amount of caring and thought goes into this, and I am so grateful to them for that. But if you take anything from this post, I would love it if you would remember these beautiful words from Yeats. Because our children are our dreams. Please, you wonderful medical people, remember these words when you have something to tell us, a test you have to do (or perhaps not do?), a result you have to share. Remember when our children are with you and not with us at home where we so want them to be …