Realigning our aspirational thinking: The right to eat in the face of risk

I have spent a lifetime watching children eat, optimizing their nutrition, and supporting their tube feeding needs if they can’t eat enough by mouth. As a neurodevelopmental pediatrician specializing in nutrition support, most of the children I see have eating and drinking difficulties because they have developmental differences.

I have learned a lot from children with eating and drinking difficulties and their families; perhaps most importantly that eating and drinking are not mere tasks that need to be fulfilled. They are very special life-affirming activities that many parents want their children to participate in even in the face of risk, such as when the children aspirate. We are hearing more and more from families that despite the risks, they want their children to have experiences with different tastes, and textures, as well as the social participation that mealtimes promote. But this sometimes places them in conflict with their health care and school teams.

At a conference a number of years ago, I was sitting over dinner with some colleagues in various health disciplines, all of whom have a role in enhancing children’s eating and drinking experience. I asked the question: “Would you stop eating if someone told you that you were at risk of an aspiration event?” Without hesitation, everyone at the table said: No! That got all of us thinking about eating in the face of risk and if there were strategies that we could employ to encourage more children who are traditionally tube fed to be at the table.

What is aspiration and what does it mean?

Aspiration is the biggest risk associated with eating and drinking difficulties. That term means that food, liquid, saliva, or refluxed material from the stomach enters the airway. The aspirated material can cause an inflammatory response and can make the person more vulnerable to respiratory tract infections. For health care providers, mealtime planning often stops when we hear the word aspiration because we think we need to provide tube feeding to keep the child safe from the risk of aspiration. We don’t usually consider that perhaps it is we who need to change our thought process. Perhaps we need a paradigm shift in which we view aspiration simply as one in a series of factors that might impact feeding safety.

Let’s unpack this a bit more.

So, if you aspirate, does it mean you should stop eating?

Health professionals are taught that eating and drinking difficulties and aspiration place children at risk of poor nutrition, poor health, and increased respiratory illness and that if you aspirate you will likely get sick. However, reviewing the published literature on aspiration we can see that some children have no apparent negative consequences from aspiration. This tells us that the consequences of aspiration are not straightforward and not the same for all children.

Some have demonstrated that aspiration does not result in negative consequences unless there are a host of co-occurring conditions. The most significant ones may be a lack of self-feeding, smoke exposure, dental cavities, and multiple illnesses. Without other health or environmental factors, aspiration alone may not cause illness. Some authors also state that careful handfeeding is just as safe as tube feeding even in children with minimal responsiveness. Others have shown that tube feeding children who aspirate is not necessarily safer than modifying their food and building in safety mechanisms during oral feeding.

Thus, just like eating and drinking are complex activities intertwined with cultural traditions and shared sensory experiences, aspiration too is a complex phenomenon that does not lend itself to one simple treatment. So perhaps we need to dig deeper to see which children will have negative consequences before we recommend removing any oral intake.

So, what are some of the other factors that may play a role in improving swallowing safety?

Around the time I started exploring whether we could mitigate aspiration risk in a broader sense not just focusing on decreasing oral feeding, people started embracing the concept of the or F-words (or favourite words) of child development, as articulated so eloquently by Peter Rosenbaum and Jan Willem Gorter. (Rosenbaum P and Gorter JW. The 'F-words' in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012 Jul;38(4):457-63. doi: 10.1111/j.1365-2214.2011.01338.x. Epub 2011 Nov 1. PMID: 22040377.) They assert that we need to think outside the box more and look at multiple different ways we could support participation for children regardless of what their skill set is and even when the activity is accompanied by challenges. In the “F-words” construct, we look at Fitness, Family, Functioning, and Fun and map out opportunities for improvement in each of the categories so that we can get to the participation goal (Friends) all the while thinking what the Future might hold for children.

If we think of ways we can make the “fitness to eat” better, we can look at improving all the medical conditions that potentially impact a child’s feeding – things like nutrition, saliva control, dental health, reflux, and constipation. When we look at functioning, perhaps there are ways we can decrease a child’s aspiration risk by making sure that the food they are offered matches their skills; perhaps we can train their caregivers to feed them more safely by pacing their meals appropriately and providing some hands-on support with appropriate utensils to the child better to help them close their mouths for chewing. We can also look at their family (and their feeding environment.) Perhaps they need better positioning for feeding, maybe they need to do some activities that relax them to position them better for eating to promote safety. Perhaps we can address air quality in their environments to improve their lung health, as aspiration during feeding may not be the only factor affecting their breathing. Then perhaps they can eat with their friends and participate at mealtimes in a meaningful way. I am not trying to ignore the fact that aspiration can cause some real problems for children with disabilities. I am simply trying to think of all the factors that might improve the child’s overall health and not just taking away an activity that may be very important to the child and their family.

Perhaps one of the most important lessons to come out of mapping barriers and opportunities to mitigate the risk of aspiration was the importance of taking the lead from families with lived experience in a shared decision-making process about their child’s eating and drinking activities.

Let’s talk about a boy we’ll call Aiden. He is dependent on others for all his care needs. He enjoys eating and his parents enjoy feeding him though we know he aspirates when eating and drinking based on a swallowing study we did to look at foods that might be safer for him to eat.
When it came time for Aiden to start school, his school team was very concerned about aspiration and they said they would not feed him by mouth at school. His parents were upset because, even though he had some challenges during meals with choking and aspiration, he had never been hospitalized for a respiratory infection and was quite well nourished for his age. Our feeding clinic team was asked to arbitrate between the school and the family.
By gathering all who were involved in his feeding plan (therapy team, school staff, his family, and his feeding clinic team,) we were able to map out all the areas that we could improve based on the F-words construct. We worked on optimizing health factors, from modifying his food so that only the safest textures were offered at school, to his therapy team and the family training all the school feeders. We suggested giving him enough time to eat and having some relaxation time before meals to make him more able to coordinate his swallows better. One of his team members noticed that he was more relaxed if he had a bit of activity on his modified bike prior to school meals and that he was easier to position. These initiatives decreased his choking at school a lot.
The school team was reassured when their concerns were acknowledged and addressed with some safety measures. The parents felt listened to and valued in their role in helping their child reach their participation in eating goal (with friends.) Aiden kept eating orally for several years after that. When he was a teenager, he did need some help with tube feeding to improve his nutrition. However, despite his aspiration risk, he continued to eat orally and he and his family enjoyed the shared experiences at the family table.

So, what did I learn?

Eating and drinking are important activities for all children regardless of their skill set.
Aspiration during feeding does not always mean the end of oral intake and the feeding relationship.
We need to think outside the box and map out all the barriers to feeding safety to see if we can decrease some of the risks so that children can participate in this life affirming activity.
When changes in oral feeding plans are undertaken, a shared decision-making process is very helpful to validate the concerns of all stakeholders and arrive at decisions together.

What are the next steps?

We continue exploring how to make eating and drinking safer for children in different environments and are currently working on how we might approach eating safety in resource poor environments by supporting teaching and training for parents and caregivers. We have broadened the group to include an occupational therapist, David Opendi in Uganda.

I am very grateful to my collaborators who have taught me so much!

Dr. Cindy Dodds, PT(MUSC in Charleston, SC) who is interested in quality-of-life considerations in eating and drinking.
Marianne Gellert-Jones SLP (HMS School for children with cerebral palsy in Philadelphia who is interested in the supportive measures during eating and fostering respiratory health in children who aspirate.
Dr. Diane Sellers Academic SLP Clinician in the UK who authored the Eating and Drinking Ability Classification Scale (EDACS) for children which is often used in documenting feeding skills for children with disabilities. Dr. Sellers promotes the art and science of addressing feeding challenges and encourages out-of-the-box thinking to mitigate risk.
Dr. Maria Del Consuela Ibarra, who is a Physiatrist at the Neuvo Amanacer Centre in Mexico where training families about the care and needs of their children are central to their approach to fostering mealtime participation.

Realigning our aspirational thinking: The right to eat in the face of risk

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