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caseload management

“How long does it take to get a drink around here?”
Antonia Charalambos makes the case for systematic long-term dysphagia review of clients with acquired physical and communication disabilities whose social isolation and dependence is compounded because they have been discharged ‘nil by mouth’.
READ THIS IF YOU ARE INTERESTED IN • RAISING EXPECTATIONS • THE POTENTIAL IMPACT OF ONE CHANGE • LONG-TERM RECOVERY

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heck of a long time if you’re waiting at my local but an even longer time perhaps if you’re discharged from hospital with no oral intake, a PEG tube and a communication difficulty. The decision to deem a client nil by mouth may be complex but can be carried out promptly with management systems in place. An equally complex but less guided process is when and how that same client’s swallowing is reviewed once discharged - if at all. I decided to review two clients who were both on long-term percutaneous endoscopic gastrostomy (PEG) feeding following a stroke. James hadn’t had any oral intake for a year and a half and Maria for six years. In this article I will explore the decisions and processes that enabled me finally to discharge one on a full oral diet and the other on desserts. Stroke is the largest single cause of severe disability in the UK (www.dh.gov.uk, 2008). Gordon et al. (1987) reported that 45 per cent of those admitted to hospital with a stroke had dysphagia. An altered consistency diet may be enough to reduce any possible risks such as infection but for others eating and drinking can sometimes be deemed too great a risk. If swallowing is unsafe clients may be offered a preferred route of enteral feeding such as a PEG (Verhoef & Van Rosendaal, 2001). There is evidence that a client’s swallowing does improve even when they have an unsafe swallow in the acute stages. James et al. (2000) note that when patients have a feeding tube placed in the acute stages they normally return to oral feeding 3 months post stroke. Gordon et al. (1987) reported that 87 per cent of patients with stroke-induced dysphagia recover their swallow within 4 weeks. I met James and Maria when they both had a PEG in situ and no oral intake. It all began for me when another man with a PEG, on the same continuing care ward as James, reached over, put a glass to his lips and drained it. The water was being used by the nurse to flush the PEG tube. It could be argued that, for him, it was the only way to communicate that now was the time to review his swallowing. The nurses told me they got quite a fright and we soon received a call to assess him. My colleague reviewed this client and he contin4

ues to have ice creams but has not been able to be upgraded. Shortly after, the speech and language therapy department decided that all people on the continuing care wards should be reviewed, particularly those who were nil by mouth. This is when I met James.

‘James’

James was a 77 year old gentleman, who had a left middle cerebral artery infarct in August 2004 and was now in a continuing care ward. The medical notes also diagnosed some cognitive difficulties. A PEG was inserted shortly after his initial hospital admission and he declined any follow-ups over the next couple of months. James presented with significant receptive language difficulties, unresponsive to AAC, no verbal output and limited gestures. No family or friends had visited or made contact since his stroke which placed limitations on a full case history. On our first meeting in December 2005, James used very few gestures or facial expressions to communicate. I greeted him and he acknowledged my presence by breaking his line of vision for a moment to look at me. I suppose it could be a normal reaction at this point in James’s life. I considered the reasons for him to communicate in general and noted that he was moved by a hoist, PEG fed, had no visitors and there was little known social history for others to comment on. He intrigued me and, although cautious, I was excited at the prospect of changing one aspect of his life. I took a quiet moment and considered the reasons for trialling oral intake with James: he sat upright all day, he had no recent chest infections, he was awake and alert. As Crary & Groher (2006) say, “In the acute stroke patient, the degree of alertness and physical endurance are key features that indicate readiness to participate fully in the swallowing evaluation process.” The following day I returned armed with ice cream. This is a suitable choice because it is smooth and holds its shape on the spoon (if frozen) which helps self-feeding and, being cold and tasty, it can trigger a prompt swallow. I placed a table in front of James, scooped out the ice cream into a bowl in front of him and placed a spoon

with a napkin within reach. It had been a year and a half since he had been invited to eat and my aim was for it to be an eating experience rather than an assessment. He looked at the bowl, over to me, then back to looking straight ahead. Sitting closer I explained that we were going to try ice cream and made some excuse for limited flavours of vanilla or vanilla. I supported him to hold the spoon handle, load it and bring it up to his mouth. The whole process felt stilted initially but after the third mouthful I wasn’t guiding him as much. I deemed the clearing swallows natural for someone who had not eaten for so long. There was a slight increase in the rapidity of his breathing and I couldn’t check voice quality so I was a little cautious. I left it at three mouthfuls for the first swallowing trial. When his swallowing was initially assessed in September 2004 on the same ward he declined any oral intake. Timing therefore may be a key issue when carrying out PEG swallowing reviews.

my aim was for it to be an eating experience rather than an assessment
Over the next three sessions James increasingly became enthusiastic about the whole process: pulling the table closer when he saw me, licking his fingers and the spoon, picking food up that had fallen on his top, pushing the plate away when finished, pulling the lid off the ice cream and reaching for napkins. I looked at the others sitting around the dining room table, the music playing, and I wondered what starting to eat again could mean for James? In front of me was the same man who barely looked at me or gestured when I first met him. I saw the bigger picture, not just about food, but interaction and motivation for communicating.

Team decision

I spoke with the multidisciplinary team regarding the slight increase in breathing and not be-

SPEECH & LANGUAGE THERAPY IN PRACTICE autumn 2008

caseload management ing able to check for changes in vocal quality but emphasised how much more enthused he had become. It was a team decision that he should commence on trials of oral intake as he didn’t have a significant increase in shortness of breath and because of the positive impact on his quality of life. So I carried out five trials of ice cream over two weeks. I then set out guidelines and a swallowing diary for nurses to complete after each lunchtime trial of ice cream for a week. Once the week was over and no concerns were flagged up I continued to trial other foods such as a soft moist dessert in the same way I had initially with the ice cream, with positive results. After three weeks of trials I set James up with a meal of puréed meat, carrots and mash at lunchtime when he was out in his chair and at his most alert. When he coughed twice on the purée, I took it away and had a re-think there and then. Was he vegetarian? Was he too eager? Was it too spicy? What was the consistency like of the puréed meat? Did he not like it? Maybe his skills would remain at eating ice cream? After trying some of the puréed meat myself, I realised it was spicy. I decided to eliminate the meat purée from the plate and try again with puréed carrot and mash. James tucked in. He completed the meal with no coughing and a prompt coordinated swallow, then pushed the plate away and wiped his mouth. James appeared to tolerate the purée but the coughing at the start and slight increase in breathing pattern had highlighted to me that trials should be taken a slow pace.

I often thought of what would have happened if we hadn’t reviewed him, or if his fellow patient hadn’t swiped the full glass of water…
I went on to trial fluids by placing a glass of unthickened juice in front of him. He nodded, picked it up, sipped a few mouthfuls then put the glass down, wiped his mouth, folded the handkerchief and put it on top of the glass. He seemed to carry out the whole process very naturally. Again, as I couldn’t check his quality of voice, I worked with the nurses for a week trialling him on normal fluids. I hypothesised that his swallowing had improved and therefore opted for normal fluids as opposed to thickened. In March 2006, I discharged James from my caseload on a full oral purée diet, soft moist desserts and normal fluids. Now he sits around the dining room table on the ward, occasionally smiles and gestures for more tea. He also started going to the activity group where he is a keen painter and potter. I felt like James had set a personal milestone for me and I often thought of what would have happened if we hadn’t reviewed him, or if his fellow patient hadn’t swiped the full glass of water…

After I discharged James I was seconded to the community team for a short while. I received a phone call from Maria’s daughter who told me that her mother had not had anything to eat orally for six years. Maria was 82 when I assessed her. She had had a right cerebrovascular accident in 2000 and a PEG inserted shortly after the acute event. Maria now lived in a nursing home. She sat in her room watching English television even though she was a Cantonese speaker and her daughter reported that Maria had little understanding of English. Maria and James were linked for me in that not eating and drinking meant they were more isolated than the others around them. Their isolation was also compounded by difficulty communicating due to aphasia, cognitive difficulties and / or a language barrier. Talking with the nurses I found out that Maria sat out all day, was awake and alert, moved by a hoist, PEG fed at night and had no recent chest infections. I introduced myself to Maria and worked with her daughter to explain why I was there. Maria generally sat in her room at mealtimes, not in the dining room, so she had not had any exposure to food in the last six years. Maria’s voice quality was clear with no oral intake. She gestured and smiled at me. Similarly to James I set out a table for her and presented her with a dish filled with scoops of ice cream, a spoon and napkins. As with James, Maria required support to load the spoon and bring it up to her mouth. She later took small licks off the spoon making “mmmmm” noises and repeatedly saying “thank you”. I wasn’t sure of the accuracy of this from someone with two or three words of English but as she said it with a smile and reaching for more, I took it positively. Her daughter asked her how it was and as I waited with bated breath she said in a loud, clear voice “too cold” then nodded to having more. At clinical assessment her swallow was prompt, her voice did not change in quality, there was no increase in shortness of breath and the large grin ticked my box. I didn’t see a reason not to continue on oral intake. Although Maria was hoisted she was able to maintain an upright sitting posture all day. PEG feeding occurred at night so this didn’t interfere with any daytime tasters. The nurse excitedly reported that she would now be able to take Maria into the dining room, which I was happy about, and this sealed the deal on a week’s trial of ice cream at lunchtime. Back at the office I wrote guidelines and drafted a swallowing diary for a week for them to note amount of intake and any comments such as coughing or self-feeding. After 7 days I arrived back to see Maria and the same nurse beamed at me saying there were no concerns. I was pleased to assess her at lunchtime sitting in the dining room although I noticed that she was being fed. I reinforced the importance of selffeeding not only to reduce risks of aspiration but also for Maria’s independence. Langmore et al. (1998) suggest that a dependency in being fed is associated with multiple negative outcomes. Unlike James, Maria was unable to tolerate other consistencies. We tried normal cold water

‘Maria’

and slightly thicker juice but Maria was unable to trigger a swallow, held it in her mouth and released the liquid into tissue. She did the same for warm soft moist desserts. I hypothesised that she didn’t like the food, had cognitive difficulties that may have impacted, or just wasn’t ready to upgrade to other food. I returned one more time two weeks later when Maria’s daughter was there. Her chest had remained clear and no other concerns were being reported by nursing staff. Maria had started eating ice cream and / or yoghurt twice a day and I noticed that Maria was feeding herself now with no support. Although a diagnostic assessment such as videofluroscopy could have enabled me to measure the efficiency of the swallow, note any residue in the pharynx and determine if aspiration was occuring, it was not appropriate to use at this time. It would have meant transporting both Maria and James to a neighbouring acute hospital, setting them up in an unfamiliar environment with posture and seating issues (as both were in tilt and space chairs). Their own environment seemed to set them up with the optimum opportunity to do well. Their cognitive difficulties would also have impacted on the assessment and any rehabilitation strategies such as postural changes. Also, as the acute event had happened years ago, the assessments posed different issues than they would have had in the acute stages. 

I reinforced the importance of selffeeding not only to reduce risks of aspiration but also for Maria’s independence. Follow-up imperative
The triggers for reviewing James and Maria were accidental. When drawing together my thoughts I pondered as to how we as a profession take forward systematic reviews of patients who are nil by mouth, long-term PEG fed and perhaps aphasic. When people are unable to participate in decision making about feeding it makes it even more imperative that they are followed up by another means. It brings about the question of ethics and acting in a person’s best interests, particularly in light of the Mental Capacity Act 2005 (www.publicguardian. gov.uk). Harper et al. (2001) highlighted how a person’s dysphagia might resolve when they are no longer on a speech and language therapy caseload. The Royal College of Speech & Language Therapists have guidelines for assessing people currently on a caseload who have dysphagia. These confirm (2005, p.71), “The swallow function may improve with time, allowing for some guided return to oral feeding or, in some patients, removal of the feeding tube.” The National Stroke Strategy (2007, p.45) recommends an annual health and social care 5

SPEECH & LANGUAGE THERAPY IN PRACTICE autumn 2008

caseload management check and the National Clinical Guidelines for Stroke state (2004, p.47), “The need for enteral feeding should be kept under review and the tube removed when no longer required”. However, there is no clear, standard ‘get out clause’ for people who have chronic acquired physical and communication disabilities, are nil by mouth and have no opportunity to demonstrate to those around them that their dysphagia may be improving. It would be useful if time could be built in for a speech and language therapy swallowing review when a PEG feed is reviewed by a dietician or a PEG tube is reviewed by a medical team. Strong team working and negotiation with the nursing staff on guidelines and diaries is integral to my role in reviewing clients’ dysphagia. Gustafsson & Tibbling (1991) comment on how dysphagia can influence many aspects of life including self-esteem and leisure time. Maria and James made me think even more about the importance of food for more than just sustenance, and the holistic approach required. Improvement in swallowing not only had an effect on their eating and drinking but on others aspects of choice, interaction and independence. At times accidents can bring about positive outcomes but, if I was nil by mouth and long-term PEG fed, I’d rather not leave it to chance before I was reviewed. Antonia Charalambos is a speech and language therapist with Camden PCT, e-mail antonia. SLTP charalambos@camdenpct.nhs.uk. REFLECTIONS • DO I RECOGNISE WHEN OFFERING SYSTEMATIC REVIEW IS PREFERABLE TO INFORMATION ABOUT RE-REFERRAL? • DO I SEE THE PROGNOSTIC OPPORTUNITY OF TURNING AN ASSESSMENT PROCEDURE INTO AN EXPERIENCE? • DO I THINK ABOUT WHAT it WOULD MEAN TO A CLIENT TO HAVE A PARTICULAR ABILITY?
What questions does this article raise for you? Do you have any form of systematic review for clients who have been discharged? Let us know via the Autumn 08 forum at http://members.speechmag. com/forum/.

References Crary, M.A. & Groher, M.E. (2006) ‘Reinstituting Oral Feeding in Tube-Fed Adult Patients with Dysphagia’, Nutrition in Clinical Practice 21, pp.576-586. Department of Health (2007) National Stroke Strategy. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081062 (Accessed 30 June 2008). Gordon, C., Langton-Hewer, R. & Wade, D.T. (1987) ‘Dysphagia in acute stroke’, BMJ 295, pp.411-414. Gustafsson, B. & Tibbling, L. (1991) ‘Dysphagia, an unrecognized handicap’, Dysphagia 6, pp.193-199. Harper, J.R., McMurdo, M.E. & Robinson, A. (2001) ‘Rediscovering the joy of food: the need for long-term review of swallowing ability in stroke patients’, Scottish Medical Journal 46(2), pp.54-55. Intercollegiate Stroke Working Party (2004) National Clinical Guidelines for Stroke. 2nd edn. London: RCP . James, A., Kapur, K. & Hawthorne, A.B. (2000) ‘Long term outcomes of percutaneous endoscopic gastrostomy feeding in patients with dysphagic stroke’, Age and Ageing 27, pp.671-676. Langmore, S., Terpenning, M., Schork, A., Chen, J.T., Murray, D., Lopatin, D. & Loesche, W.J. (1998) ‘Predictors of aspiration pneumonia: how important is dysphagia?’, Dyphagia 13, pp.69-81. Royal College of Speech & Language Therapists (2005) Clinical Guidelines. Bicester: Speechmark. Verhoef, M.J. & Van Rosendaal, G. (2001) ‘Patient outcomes related to percutaneous endoscopic gastrostomy placement’, Journal of Clinical Gastroenterology 32(1), pp.49-53.

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resources

‘We Are Not Stupid’ People First Lambeth’s book about how people with learning difficulties would like to be treated. £6.50, tel. 0207 642 0045, e-mail info@peoplefirstlambeth.org.uk Vision Purchases equipment, goods or specialist services for children in the UK who are blind, visually impaired or dyslexic. www.visioncharity.co.uk Speech, Language and Communication Framework Competency-based Framework to help everyone who works with children evaluate strengths and areas for development. www.communicationhelppoint.org.uk Lattitude Global Volunteering Charity coordinating overseas gap year voluntary work placements for young people from 17-25. Thrive Thrive, which promotes the advantages of gardening for people with a disability, has developed a leaflet with mental health charity Mind highlighting the power of gardening to improve emotional wellbeing. www.thrive.org.uk/gardening-to-improve-emotional-wellbeing.asp Human Rights A revised booklet from the Ministry of Justice gives people with learning difficulties advice about what the Human Rights Act means for them. www.justice.gov.uk/docs/human-rights-act-learning-disabilities.pdf DownsEd Books now available online include ‘Speech, language and communication for individuals with Down syndrome – An Overview’ (2000) by Sue Buckley. www.down-syndrome.org/information/language/overview/?dm_ i=319435096 Easyhealth Accessible health information for people with learning disabilities. www.easyhealth.org.uk

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SPEECH & LANGUAGE THERAPY IN PRACTICE autumn 2008