Mother Knows Best

If you have a child with any chronic disease such as cerebral palsy or down’s syndrome, you may find yourself caring for the child the rest of your life. In the hospital, we see elderly parents who have dedicated their lives to making sure their child gets the best care possible.

Throughout their lifetime, these parents struggle to make sure that their child has adequate nutrition, therapy, and support. Their life’s work has been focused on the care of their child and it’s both inspiring and heartbreaking in equal measure.

Even with the best of care, we see these patients admitted to the hospital and, as dietitians, we usually follow them throughout their hospital stay. Many times, these patients have to follow modified texture diets and require nutrition support through G-tubes. They are often on extremely specialized formulas or have a nutrition regimen at home that really isn’t sustainable in a hospital setting.

Hospital Struggles

When we see these patients in the hospital, we go through the process of calculating their calorie and protein needs and comparing those needs to their home regimen. Many times, we find that there is a significant discrepancy in the two numbers. One example is a patient who was receiving enteral nutrition at night and reported minimal intake of foods during the day. Her nightly regimen provided only 240 calories. Based on this report, we had to assume that she was getting less than a thousand calories per day.

In this case, as in many others, we see a problem with the home regimen. Maybe it’s providing too many calories or not enough. If the patient is underweight, we are especially concerned. In those cases, we’ll talk to the parents and propose a change to the nutrition regimen, at least in the hospital. Our proposal goes over like a lead balloon.

The patient mentioned above was obviously not getting the nutrition she needed but convincing her mom that we needed to change was a struggle. We tried explaining how we calculated her needs, what she currently getting, and why we were recommending more calories but she was extremely reluctant to make any change.

Rocking the Boat

In her case, as well as most others, it’s hard for parents to make a change because usually what they do at home seems to work. They may have had a difficult time finding a formula or diet that their child tolerated. They’re extremely worried that any change will cause medical problems and ruin the regimen that has been

working. Having an unknown dietitian who won’t follow you after your hospital stay telling you to make all these changes isn’t a recipe for success. We should be sympathetic to that. It would be easier to discuss any changes with the patient’s dietitian, but many times, our patients haven’t seen a dietitian in years. What worked at age 8 isn’t appropriate in a 20-year old. On some level, the mom knows this but just can’t seem to overcome the fear and anxiety of making any changes.

Cautious Compromise

Every parent is different, but I’ve found that taking the time to sit down with the parent, explain the rationale behind the change, and then work through the anxiety with them offers a good chance of success. I tried this approach with a mom recently and she actually agreed to make some changes while in the hospital. I’ve never left a consult feeling so mentally exhausted and relieved at the same time. In other cases, it may take a few visits to convince parents to try something new. A key component is showing the parents that you care about their child and you have their best interests in heart. In healthcare, we assume our patients know this, but unfortunately, so many people feel used and abused by modern healthcare systems.

Finally, accept your own limitations. In the hospital, we can’t always “fix” every nutrition-related problem. For the one positive experience mentioned above, I’ve also had situations that didn’t have a positive outcome. I hope over time to become more experienced in having these conversations and improving patient care.