Why do we do what we do? By this, I mean why do we tell our patients to eat certain foods or avoid certain foods? Well, because we think that by doing this our patients will live longer, healthier (and hopefully better) lives. Right?
But sometimes I talk to patients and they are so frustrated and overwhelmed with their diets (and they aren’t alone). They tell me they have already lost so much as their health deteriorates that changing their diets feels like more of a burden than a benefit. Or maybe, they already have changed their diet and they are doing the best they can.
And yet, the referrals for “low potassium diet teaching” keep rolling in… I wish there was a better way for me to measure and communicate to the health care team how much value eating [insert super delicious food here] brings to my patient’s life.
I have looked for a tool that would do that, but as yet I haven’t come across anything that assigns a score that would measure the degree to which a therapeutic diet is impacting (negatively or positively) a person’s life.
There are however some qualitive studies, which can provide value data – and reassure me that I what I am hearing from my patients isn’t unique.
The research into patient’s experiences with renal diets
In a study of 35 hemodialysis patients, the authors interviewed participants to better understand patient experiences and perspectives of their renal diet.
What patients don’t like
It probably won’t surprise you that patients reported that hemodialysis dietary restrictions felt overwhelming and added to the stress of their treatments and illness. It also came up that patients found the advice to stop eating healthy foods, such as fruits and vegetables and nuts and seeds challenging. They worried that these recommendations diminished their diet quality and they also worried that things like fluid restrictions might cause them harm (e.g. dehydration).
Another thing that came up was that, especially for traditional foods, they found diet restrictions to be isolating and prevented them from being able to eat with their family and friends. Or made them feel guilty and a burden as their loved ones prepared special foods, just for them.
What patients do like
But, diet advice wasn’t considered to be all bad. For other participants they reported that controlling their diets was crucial to their survival and helped them reduce the symptom burden of their disease. Furthermore patients reported that by following their diets, they could reduce the number of medications they needed to take and (in the case of fluid) reduce their fluid removal on HD runs and make their runs more tolerable.
Other improvements in moving toward more evidence-based recommendations
The other component that I think is helping is better research on the renal diet to help us figure out if the diet restrictions we have been recommending result in better health outcomes for our patients. Because the thought of asking patients to change their diets when it doesn’t even work is awful!
One of the first research projects I was involved in, started as a coffee break discussion. We were discussing the restriction of lentils to ½ cup per week for a low phosphorus diet. We worried that this recommendation was not appropriate for our patients who traditionally ate lentils (or dahl) several times per day.
I felt very proud when we finally published this article and reported that those who ate more plant proteins didn’t have worse phosphorus or potassium levels. We also found that those who consumed more plant proteins had better quality and took fewer phosphorus binders than those who ate more plant proteins. So the diet is getting there – but we have a ways to go!
Take Aways
So what’s a dietitian to do?
For me, I do my best to meet my patients where they are at. For some, diet optimization is key and I do my best to give them the best information that we have. For others, my job is to advocate to other members of the health care team that the diet burden is starting to outweigh disease burden and that we need to find other management strategies.
And maybe that’s the best part of my job. I don’t just give everyone who needs a low potassium diet the same diet advice. I do my best to find the solution that works for them.
That being said, I think one of the most important tools that we currently lack is a way to quantify the impact that therapeutic diets are having on patient’s lives. I want an objective way to measure if the burden of the diet is becoming too high. And I want to be able to communicate this burden in a meaningful way to other members of the health care team. But don’t worry – its on my to do list!
