Role of the Speech Pathologist in supporting informed choice & shared decision making in Dysphagia.
Working with "RISK FEEDING" - known as "informed choice to eat & drink"
I was reading an interesting public resource on the SPA (Speech Pathology Australia) website as a result of my interest in competency & assessment training, thank you COVID 19, & that I suffer from dysphagia and am a “Risk Feeder” in its true definition as a result of head & neck cancer treatment.
The resource is one of a number of position statements outlined “informed choice to eat & drink” as a framework to provide consistency of practice. It’s an excellent framework (given the wide geographical and anatomical terrain it needs to cover). I refer to it from the perspective as a past patient and my experience with SLP’s throughout my HNC treatment journey here in Australia.
In development of this Position Statement, a common theme emerged both from the Working Party and the literature review; overall, many clinicians and researchers dislike both the terms ‘risk’ and ‘feeding’ in this context. Individually, ‘risk’ as a term in healthcare has become synonymous with danger or workplace compliance, and as such can place unnecessary guilt and burden on people with dysphagia and their carers/families. ‘Feeding’ can be considered a demeaning term for use in relation to adults who instead eat and drink (Murray, Mulkerrin, & O’Keeffe, 2019). Overall, it was considered that ‘risk feeding’ as a label has negative connotations and does not reflect a person-centered approach to dysphagia management.
I had no idea that Speech Language Pathologists even existed, I mean why would I? I had absolutely no interest in any medical field of surgery, health or nursing - zero, and as someone who viewed themselves as having a very low pain threshold (I don’t as it turns out) anything “medical” held no interest for me sans dietetics. Well, that might be a stretch, I had no need to fully appreciate nor understand why speech pathologists existed and that reason according to SPA is as follows:-
“It is the position of Speech Pathology Australia that the role of the speech pathologist is to work collaboratively with the multidisciplinary team in responding to and managing a person’s decision to eat / drink at risk”
The position paper goes on to say …
This Position Statement also acts as a means of providing education and advocacy to external stakeholders, including multidisciplinary team members, management, facilities, government and funding bodies, as well as consumers and their carers / families.
Without knowing it, I was to be a “risk feeder”, (HNCA offer a PDF of information but not specifically around risk feeding) I not only had no concept of dysphagia and the short and long term effects, I had no intention of allowing anyone to tell me what I should and shouldn’t try and eat, risk feeding or not. The odds were stacked against the SLP from the start and it is a hard role to play for all number of reasons.
Being told I could possibly be living with a feeding tube for the remainder of my life was motivation enough for me to try and mitigate that at any cost, potentially even my life. I have been fortunate that I have had few choking incidents to date of any great concern.
I was told to “just use the PEG tube feeder” to keep me alive, later to be told “take as much orally as you can then switch back to the PEG tube”, followed by “small meals often”, was the advice I received. What that looked like in my kitchen remained to be seen, it turned out that my kitchen became my daily laboratory in my never ending & relentless search for food to eat.
I documented my journey every day, what I was eating, my weight, & how I ate for the long term gain of having my PEG tube removed. I was told I needed to have permission to have the PEG tube removed, based on how much I used it and what my weight maintenance was like, which seemed reasonable to me.
How to practically and physically transition back to real food was a mystery, after 15 months of nothing orally this was a very big deal for me. I reasoned my food background and qualifications in food and cooking would put me in a good place to transition, even then it took me 3 full months to be non reliant on the PEG tube and that, in the end was mostly for medication.
Interestingly enough, the concluding paragraph within the position statement goes on to say …
When working with people who elect to eat / drink at risk, speech pathologists should be aware of their professional requirements in relation to documentation and execution of their professional duty of care. They should work closely with members of the multidisciplinary team, including the person and their significant others, and be an active participant in the development of organisation-specific policies and procedures.
Now I want to be clear, I really struggled with loss of eating, up until this point eating food, drinking wine, public speaking and cooking had been my entire life and career. I was not giving it up lightly, this learning was beyond me and I felt that I wasn’t getting the answers I needed, I wasn’t being given anything to help me build an arsenal of tools to manage this process immediately or long term, a way to gain some control over what was happening to me, I went looking for myself and my Mind Food Body programme was born. It’s important to note that during head & neck cancer treatment I felt (I am sure others do too) that everyone was in control of me except me, eating and swallowing is an emotional & social issue, one that I discovered was not being addressed. Once past the mechanics of eat & swallow, the social eating aspect, in my mind, is as bigger issue as the physiology.
You can listen to what I say about advocating for yourself here on the No Feeding Tubes Show podcast.
I highlight what happened to me and I don’t refer to elder care, Paediatrics or palliative care, this is my lived experience with dysphagia as a result of head and neck cancer treatment.
So imagine my surprise when I awoke from intensive care with the inability to swallow water let alone my own saliva. The first person I remember was my surgeon and then followed closely by a “speechie” - which was a new term to my ears.
I was advised that the “speechie” would be coming by to test my swallow which was thickened water (no I could not manage it), diced fruit (I still can’t) and a plan for the immediate future, turns out that was the insertion of a PEG tube feeder. It was one of the most terrifying moments in my life, I could read the concern in her eyes, the tone of her voice and that one statement laid bare.
“You know you could have this PEG tube feeder for the rest of your life”
I am not sure that the affect those words had on me will ever be understood by anyone but me. It was such a confronting notion and the delivery of that news was couched as best it could be given the circumstances.
Fast forward many months and I discovered I did not receive any therapy planning, I was in a public hospital system as private consultation was not financially viable for me, any savings I had were fast being eroded in the act of living as a single entity.
I managed my own assessment & planning by taking notes, reading what I could but mostly pushing to have barium swallow tests and asking to be shown a cut away model of what was going on with my swallow. I also had a Videofluoroscopic Swallow Study (VFSS)– an x-ray of your swallowing and a Fiberoptic Endoscopic Evaluation of my swallowing (FEES)– a fine scope passed through your nose and into your throat so your swallow can be assessed and watched on camera.
I asked for these so I could ensure I was covering all the bases that I could to manage my own dysphagia, so I could get a sense of what questions to ask, what might be possible. Everyone was busy telling me what was happening but with no solutions or guidance as to how to lessen the effects be that physical or mental. It was mechanical, I could see the same thing they could, it was explained with laser like precision, that didn’t help me when I was home curled up in the corner not knowing what my future was to be. Not knowing how to transition back to oral eating and if what I was doing was the right thing to do.
It was about this time that trismus set in and that was a whole other journey & experience. I discovered through social media head & neck cancer groups what trismus was and what to do about it. I diligently went about making my own mouth jack and doing the yoga and stretches to ensure minimal loss of mouth opening - you can read about my trismus journey here.
In developing the best food life for me and a food future, I created a series of checklists for all my side effects as they related to my multidisciplinary team.
It was my way of staying focused and ensuring I covered everything as a patient I was suppose to, or was told to or in my case what I had discovered might make my situation more bearable. It was my way of making sense of the loss of a basic human right, it was my way of ensuring I lived without a PEG tube and gouged back the most positive food life I could create.
These checklists below form part of the lesson plans within the 5 modules and are as follows:-
IDDSI
Barium tests
Swallow Exercises / Exercising generally
Pain Control
Trismus
Culinary Ability
Nutrition Knowledge
Communication
Transition Steps
Milestones
Social Eating
Mindfulness
I believe the humble checklist a great tool for developing future workforce specialisations or (SIGS) in head and neck cancer patients. After all, we are a diverse group (albeit rare in the cancer scene) but the side effects of treatment in many cases have such long term social implications. If a considered checklist offers a guided communication tool with patients, one that carves a positive notch for an individuals food life, it has merit in its consideration. Creating a pathway for others to lead their best food life no matter their circumstance its goal.
It afforded me comfort, direction and a way forward.
It gave me hope, and let’s be honest, sometimes this is the best gift you can receive.