Title: Approaches to Eating and Drinking with Acknowledged Risk: A Systematic Review
Authors: Soar, Birns, Sommerville, Lang, & Archer
Year of Publication: 2020
Design Type: Systematic Review
Purpose: “This study aimed to establish if EDAR protocols improve care through a systematic literature review with a secondary aim to explore important factors for the development and success of a protocol”
Population: This review considered articles that reported on EDAR within an adult population who have an oropharyngeal dysphagia which is unlikely to improve. There were no restrictions on diagnosis or cause of dysphagia; All care settings (hospital/community) were considered
Inclusion criteria: Articles reporting original collection of data or original review of current clinical practice with no restrictions on methodology were included
Exclusion criteria: Articles reviewing EDAR literature with no original data, opinion pieces, or non-systematic reviews of the literature; non-English articles; pediatric populations; patients with esophageal dysphagia
Do you ever feel like you’re one person trying to make massive improvements and constant changes? Maybe it’s felt like you’re Tom Hanks in Castaway or even Moana attempting to sail against the rippling currents that push you back every time🌊🌊. Yet your strong sail efforts continue to forge ahead for the good of either your sanity or your ‘tribe’ (of patients).
This recent review looks at how we can not only be an individual clinician who is part of a medical decision-making team, but also if and how having a systematic effort might be effective for patients during these critical and complex decisions.
Is there a one-size-for-all type of approach that might work best for implementing protocols?
Are there only certain populations it would be most applicable to?
Is there a limit to which medical professionals would be involved in this process?
Would patients/families/caregivers feel implementing a methodical approach for these decisions would be helpful?
I 100% know for a fact these are some of the questions that clinicians have asked (me included!) when looking at this from the outside, so let’s take an inside peek at how the authors went about answering them🧐. . .
Before getting too ‘into the weeds’ with the article, the first thing to do is define and explain the main concept:
EATING AND DRINKING WITH ACKNOWLEDGED RISK (EDAR)
“Traditionally, the language used to describe eating and drinking despite the risks associated with an unsafe swallow is referred to as “risk feeding” or “comfort feeding”. However controversy surrounds the use of these terms as the term ‘risk’ can evoke fear and anxiety, is difficult to quantify and has become synonymous with danger, and the term ‘feeding’ is dehumanizing” p.2
Yikes😬. Can anybody relate? Anybody else’s eyes burst wide open after that paragraph alone😳? Because of these unsettling perceptions (and because there’s no real consensus for a term for this concept), the authors use the EDAR term to essentially describe what we as clinicians often may begin to navigate, which is when a patient/family decides not to accept recommended modifications or restrictions to their oral intake in order to reduce risks of aspiration, dehydration/malnutrition, or worsening medical consequences (yes I know the talk about even the word ‘risk’😉).
Now that we can all be on the same page about that, *hopefully* it is pretty apparent why this concept as a whole is incredibly complex, crucial, and extremely hard to pinpoint for specific steps to generalize across a huge facet of patients, populations, locations/settings, and professionals, as well as cultures/values/beliefs.
“The coordination of the management of EDAR into formalised protocols is emerging as a means of providing clinicians with a systematic and structured guide for timely and comprehensive decision making.” p.2
Needless to say, this article is 🙅♀️NOT🙅♀️ a “How-To” guide for immediate implementation into your facility (unfortunately😕). Because before we ever do anything, we gotta make sure it’s actually beneficial and effective. Also, anyone who has ever tried to make changes in their department, facility, or even in the field knows 1) you gotta start somewhere, and 2) change takes TIME (and lots of it!). So, now that we pushed both those concepts out in the open, let’s start figuring out what they looked at, what they found (and how much of it), and where it can direct us in the future.
Before going any further, I think it’s important to make note that the authors only accepted studies to review “that reported on EDAR within an adult population who have an oropharyngeal dysphagia which is unlikely to improve,” but also did not restrict to a certain setting nor diagnosis/etiology.
There were NO specific date limitations–meaning they were pretty much looking at everything since the dawn of time (funny enough all the finalists were still within the last 10 years!). After searching across a variety of database systemsº and then some, even more impressive, was that the authors also looked at each of the citations from every study’s reference list (ya know, those last couple pages of tiny print that’s sometimes easier to save trees and exclude in printing😉).
I’d like to take a minute to acknowledge that step because first–talk about your dedication😲 and second–scanning that long reference list can actually sometimes be a treasure trove of additional info you wouldn’t have known otherwise or can even lead to finding a bullseye for evidence you’ve been looking for🎯! (unfortunately, it also ends up making my ‘To-Read’ list longer😅)
By also providing us with the actual list of the specific search terms/phrases they used, we as clinicians can get a better idea of different terms and combinations that might be helpful the next time we try searching a topic or article! And while they tried to see if they could put any and all similar populations or data into a pot to see if any statistical significance stewed up, because there were too many different methods, interventions, sample sizes, etc., no meta-analysis could be completed (meaning there’s no way to say any statistical significance for an intervention🙄).
**If you want a quick review of the differences between systematic vs meta-analysis reviews and other types of studies, make sure to Subscribe to SLP R&R for your own Freebie Handout!!🤓**
Left with 984 total articles/abstracts/conferences related to the criteria, ONLY 8 were appropriate enough after consensus, and luckily were all published in peer-reviewed journals (not always an end-all-be-all way out of bias, but hey it’s better than not). While there were unsurprisingly NO randomized control trials😒, they used a modified Sackett scale to determine that the highest level of evidence was a non-randomized cohort study. If you’re having any déjà vu with that Sackett name, that’s because it’s the same Sackett from SLP R&R’s first review on How-To-Read-Research😃!!!
The first question the authors wanted to know:
Does the Use of a Protocol to Guide Management with Patients/Carers Making EDAR Decisions Improve Care?
Only 3 articles actually described their process for this and gave measures pre/post the development of such an intervention. One article used a method similar to what we as clinicians can even relate to, the Plan-Do-Study-Act (PDSA) to develop their EDAR protocol. They looked at past electronic patient notes specifically for a dementia diagnosis+aspiration pneumonia on admission and compared 1 month before an established protocol as well as multiple monthly periods after the protocol to compare on average how long it took to establish a nutrition pre-protocol from admission (whether that be supplemental/alternative feeding or an agreed-upon oral means).
What this study found was that having an EDAR protocol in place cut down the time a patient had no true plan for nutrition from an average of 6 days (<15% of patients had a plan for nutrition on admission), to eventually having 100% of patients having an establishment nutrition plan in place within 2 days of admission from their baseline in 2011 to their final endpoint in 2018 🤯.
The main bummer about this study is not only the small sample size, non-randomized participants, or the retrospective way of collecting the data making it hard to really be sure of the original findings (be wary of reporting bias!), but the fact that we really aren’t able to compare or say “this” specifically cut down their total length of stay (pre/post EDAR protocol) at that facility. Instead, the authors used their data to compare against the national average at the time, versus comparing it within their own facility. Because the authors only used this comparison after the EDAR rollout, they can really only compare it after the fact versus a pre/post when comparing against the national average.😕
Another bit of a bummer was when thinking more about what other factors may have been overlooked that could qualify under ‘improved care’ versus just focusing on LOS. So, even though this seems pretty awesome on the surface when we think about all the reimbursement and high-census headaches, in reality, it’d only be comparing apples to oranges😞.
The next 2 studiesº call their approach “Feeding via the Oral Route With Acknowledge Risk of Deterioration (FORWARD)” which appeared to be part of a care bundle within their inpatient hospital setting, and both acknowledged the use of PDSA as well (#consistency👏!). Because there were actually 2 separate studies by the same authors on this topic, obviously they had to account for and ensure nothing was counted twice with participant data and outcomes, so the 2 articles were separated out by what outcomes they used. Only one of these actually looked at outcomes related to staff and carers feedback from questionnaires and were somehow organized into 3 themes:
- increased confidence
- improved care support structure
- greater awareness and understanding of the issues surrounding EDAR
In the later study by the same authors, they looked at stroke and elderly patients 6 months pre/post FORWARD implementation, as well as following up every 6 months post, over an 18 month period to further assess maintenance and found the following improvements in:
- rates of documentation of mental capacity assessments (MCA)
- best interest’s discussion
- discussion with next-of-kin
- documentation of feeding plan in electronic discharge letter
“Rates of documentation on elderly care and stroke wards rates increased from between 91-100% in the first 6 months post-implementation to 100% after the third six months after implementation.”
“Additionally, one of the key outcomes, to reduce the time patients spend NBM [nil-by-mouth] without tube feeding, demonstrated improvement with the median number of days NBM reducing from two to zero in the 18 months after implementation.” p.9
While there is a definite promise that these outcomes were able to actually be maintained over a sufficiently long amount of time, unfortunately, it’s something we can’t really generalize just yet because of many of the same limitations above.
But, for all you glass-half-full folks or in an effort to try to sway any negative-Nancies, to end on a positive note:
“One of the key themes that emerges from these papers is the reported improvements in documentation surrounding decision making after the implementation of an EDAR protocol.” p.9
(hey, a win’s a win right👍?)
We can’t forget about the second part of all this:
Identifying Important Factors and Future Considerations for the Success of EDAR Protocols Through the Experiences of Staff, Patients, Families, and Carers
So now that we know there can likely be at least some improvements using an EDAR protocol🤞, what are some ways to keep making this better??🤔
Well, it was found that 3 papers looked at the views/knowledge of just staff in regards to EDAR decisions, and only 2 addressed staff+patients/family perceptions. Surveys, questionnaires, interviews, and focus groups were all used across the total studies.
Some had lots of responses (600+), and some as few as 29 staff and 6 patients/families. Some looked at a range of medical professionals as well as non-clinical staff, and one was simply directed at SLT/SLP. Some found a change and improvement in knowledge and thoughts following some kind of training or use of a toolkit effort, while others simply told us what staff/families thought or perceived, including the good, bad, and ugly.
Overall, there were different limitations for all including difficulty differentiating between staff who were more vs less involved in the complex decision-making process (e.g. nurses vs volunteers), a more ‘prescriptive’ and rigid type of approach to a protocol, and at times NO SLP (or Registered Dietician😲!) support or involvement in the developments of a protocol!!😩🤦♀️
However, at least a general conclusion was drawn from all the papers:
“Themes that run through these papers relate to the enhancement of communication between staff, patients, and families to support decision making and advanced care planning and the need for education and training to support staff and tackle misconceptions around EDAR and dysphagia management.” p.10
And yes, I hear ya and I’m with ya thinking:
“But we’re already trying to do all this and communicate to everyone we can!😩”
I get it. Apparently, so do the authors who went through all the trouble of scouring through all this research:
“The impact of the culture of education within a particular setting and the willingness of staff to adapt and change must be taken into consideration when introducing a protocol.” p.11
While this article lays out many things we still don’t know, let’s just take a second to think about what we can take away from this..
We, as SLPs, work with these incredibly vulnerable and complex patient populations, yes?
At some point, we (hopefully) realize that a poor prognosis for improvement in, for example, advancing dementia or profound impairments, often results in our professional recommendations not being exactly black or white. Thus, our field is often held captive by these grey areas.
Maybe instead of waiting for a “magical SLP-Answer Key” manual, we need to settle in and start getting more comfortable in this grey-shaded world. Think about how much you would’ve loved being told you can either take this class where you might likely fail or no class at all and never graduate? Or think about how YOU would feel when you’re given a ‘take-it-or-leave-it’ offer from someone? So, after we acknowledge this doesn’t do anyone in our practice any favors, we then need to learn what to do about it.
The ultimate conclusions from the article are able to point out that above all:
“Patients and families must be educated on the issues with EDAR to allow them to make informed decisions to support advanced care planning and to promote shared decision making.”
“Communication within the multidisciplinary team (MDT) is similarly reported frequently as measure of a success in EDAR management.” p.11
What does the current evidence (that we do have) suggest how to manage EDAR?
Besides written information, specific documentation patterns were found in the 2 reported EDAR protocols:
“Each paper detailing a protocol designed specifically to support EDAR decision making, reports on the importance of including completion of the MCA in this process.” p.11
Who might be some stakeholders in these communications?
“Interdisciplinary communication is essential when working towards common EDAR goals.”
“Involvement of a range of healthcare professionals, particularly SLTs, also dietitians, nurses, and doctors, are central to the success of an EDAR protocol as it ensures patients have input from clinicians who are interested and expert.” p.11
What other processes might have to be established and carried over to have success for EDAR protocol?
“Staff education in the arena of EDAR, particularly understanding dysphagia and artificial nutrition in dementia and end-of-life is a critical factor in the management of EDAR. Knowledge of these issues was found to be inadequate with common misperceptions and with staff reporting lack of education indicating that an EDAR protocol cannot be introduced as a standalone event.” p.11
Unfortunately, this is all we can say for now, and it’s also hard to pinpoint if it’s really the chicken or the egg situation when being able to definitively conclude “whether the improvements they report are from a multidisciplinary team working and a raised profile of EDAR or resulting from introduction of their protocol.” Additionally, because the investigators didn’t include original data from clinical practices that have already been established, they may have unknowingly missed out on some possibly valuable insights from experts in the field involved in EDAR (we also live in a ‘land-of-limitations’🤷♀️).
How can you use this article?!?
Maybe you’ve been trying to start a specific protocol/policy regarding these complex decisions already, and need something more to build off?
Or maybe you’ve been going it alone in your great efforts, making sure to talk to the doctor..the nurse..the dietician..the case manager..the patient..the family, the (you name it) until you realize you’ve only seen enough patients to count on 1 hand, all the while getting dizzy from all the constant corraling of professionals, so you need some sort of guide to try to start streamlining this process a bit more?
Maybe you already have something established and want to compare o see if there are any aspects or perspectives to consider??
Maybe you even want to help share YOUR established findings at YOUR facility, and want to be a part of the solution to overcome this lack of research?!? (In which case–start emailing these investigators ASAP📩🤓!!!!!)
Regardless of where you are, what you’re doing, or how you’re doing it, because I’ve never been one to shy away from using something that not only helps my patients and my clinical decision making, I will gladly be keeping my eyes peeled👀 for this area’s developing new research. I mean, who here wouldn’t want all that?!?!
- “The evidence base to support the idea that EDAR protocols improve patient care remains small and is limited to dementia, stroke, and elderly care acute hospital admissions..there is growing support for a coordinated approach to managing EDAR with positive outcomes reported when a protocol is part of practice.”
- “Findings indicate having a protocol is not enough. Staff training and education and communication within teams is essential for the success of the protocol and patient and carer feedback must be incorporated within this process.”
- “Staff education is reported as an essential corresponding process alongside the introduction of an EDAR protocol, although this raises additional questions; can we correlate improvements in care markers to the presence of an EDAR protocol, or would those benefits remain simply in the presence of an education programme?”
Soar, N., Birns, J., Sommerville, P., Lang, A., & Archer, S. (2020). Approaches to Eating and Drinking with Acknowledged Risk: A Systematic Review. Dysphagia, 36(1), 54-66. doi: 10.1007/s00455-020-10107-0