person centred planning

Oats not
How good are you at person centred planning and reflective practice? Professionals were put to the test when Robert, who already had eating and drinking limitations due to cerebral palsy, suffered dysphagia following a stroke at the age of 75. But, three years later, Robert had had his PEG removed, was enjoying his porridge again, and beginning a new life in a community placement near his family. Here, Lorraine Speirs tells us how he did it.
ing care staff for support in developing communication skills. Brief information states that he was alert and interested in interaction, non-verbal but with a range of appropriate vocalisations. He was reported to be equally sociable with nursing care staff and the 20+ other residents in his ward. He was prescribed medication to reduce saliva production as he had poor lip seal and limited tongue control that resulted in drooling. From referral in 1982 to 1988, Robert was supported to develop his expressive skills using Makaton signing with limited success due to his physical limitations. By 1989, he was conveying his messages using natural gesture with some Makaton signing and facial expression, and was introduced to a voice output communication aid. An Exeter lip sensor was brought in for eight weeks in November 1989 after a request from Robert to help manage his saliva. Robert made excellent progress by increasing awareness of his oral limitations and exercising regularly. After regular blocks of therapy to develop his expressive skills, Robert progressed from an Introtalker to ORAC communication aid in December 1994. He was able to use this effectively to request, comment and tell jokes. In November 1995, after a couple of chest infections, Robert was admitted to the local acute hospital with pneumonia, congestive heart failure and a stroke. After six days he was discharged with a nasogastric tube in place as this acute episode had left him without a swallow. Robert was very weak and in low mood. His mouth looked dry and no dry swallow was observed in over three minutes. He was unable to swallow on request and not alert enough to attempt further assessment. Seven days after his stroke he was unable to approximate lip seal or to move his tongue on request. Gentle stimulation with a sterile swab produced slight elevation of the soft palate but the gag and swallow reflexes were absent. Robert had problems in the preparatory, oral and pharyngeal stages of swallowing. Oral feeding was unsafe. The dietitian and nursing care staff established a nasogastric tube feeding protocol. I visited Robert every two days to assess any change and, after two weeks, Robert was still unable to produce a dry swallow despite attempts at stimulating oral sensation by thermal stimulation (Langley, 1988). After discussion with more experienced colleagues and the suggestion that perhaps an automatic swallow response could be triggered by a bolus in Roberts mouth, a half teaspoon of iced water was attempted. This caused a great deal of coughing but did not trigger a swallow. The team felt Roberts pre-morbid dysarthria,

Read this
if you face people with acute/ chronic / progressive shifts want to be responsive rather than prescriptive continue to be surprised by clients

B
Laura Helsby

Panna Chavda

orn in 1920 and in institutional care since the age of 12, Robert had grown up with dysarthria associated with cerebral palsy. When he suffered a stroke in 1995, the prognosis was not encouraging. The complex interaction of cerebral palsy, ageing and a stroke meant he had muscle weakness and poor voluntary control of oral and pharyngeal structures, his respiration was shallow and weak, he was unable to receive necessary nutrition or hydration orally and he was medically unstable. As a determined man, who considered his eating and drinking to be valuable skills that marked his independence, dysphagia was more of a blow to Robert than the loss of his mobility. Due to his persistence and positive outlook, the multidisciplinary team members were challenged to provide a range of support, which proved worthwhile.

Interested in interaction
Robert was described as mute when he arrived at the Royal Scottish National Hospital at the age of 35. Thirty two years later, in 1982, he was referred to speech and language therapy by nursSPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003

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so simple
susceptibility to chest infections, general physical weakness and absence of swallow were evidence enough of his high risk of aspiration without videofluoroscopy. By this time the nasogastric tube had had to be replaced twice. We agreed a multidisciplinary meeting, which included Robert, to discuss options for long-term support. Although unhappy and weak, Robert accepted that he was not able to eat or drink safely and agreed to be assessed for suitability to have a percutaneous endoscopic gastrostomy (PEG) fitted. After explanation of the details and times of tube feeding, Robert expressed concern that he would miss his daily activities, so the dietitian agreed to work with ward staff to rearrange tube feed times accordingly.

Lifted spirits
Despite lack of dentition, a programme of oral hygiene was recommended to promote oral health. This included swabbing Roberts gums and tongue to remove any residue and moistening his lips with a lip balm. Within a week the ward requested a reassessment of Roberts swallow as his care leader reported he had observed a swallow only seconds after swabbing Roberts mouth. Laryngeal movement and two incomplete swallows were observed after brushing and Robert was able to cough and attempt a dry swallow on request. This slight improvement lifted Roberts spirits considerably and the therapist demonstrated the icing and brushing procedures to nursing care staff who agreed to work it into Roberts oral hygiene time. Nursing care staff were determined to carry out any procedures to try to stimulate a swallow and kept a tally of swallows observed. I reviewed this weekly and, although his swallow was re-emerging, Robert was still unsafe for oral intake. A year later, by January 1996, Robert was gaining weight and strength. During weekly reviews he was now able to push a teaspoon out of his mouth with his tongue, but still not able to produce a consistent swallow. The continued efforts of nursing care staff and the speech and language therapist were bolstered by Roberts insistence on carrying out his exercises three to four times a day. Aged 76, Robert had his PEG fitted in February 1996. He was physically improving but the realisation that he may not taste or choose food again contributed to his depressive feelings. In an attempt to address some of his isolation and loss, Robert had his PEG feed at mealtimes to help him

We agreed a multidisciplinary meeting, which included Robert, to discuss options for long-term support.

experience the associated smells and activity. Russell & Hill (1992) and Scope (2000) discuss such issues as being major contributing factors to the quality of life and self-worth of a person experiencing feeding and swallowing difficulties. By July 1996, Robert was attending a weekly communication group when he indicated he wanted to try to taste things again. Icing and brushing exercises had been carried out daily at Roberts insistence and he now had some limited control of his tongue and could produce two to three swallows a few minutes after the exercises. Robert was given tastes of lemon, grapefruit and chocolate (his favourite) on swabs after each exercise session and, after one month clear of chest infections, was able to tolerate half teaspoon tastes of thick yoghurt - up to a maximum of three teaspoonfuls at each sitting. Although more physically limited since his stroke, he was able to feed himself. This continued until April 1997 when Robert was being considered for a community placement and was anxious to be able to eat more. As he had experienced no chest infections and was gaining weight, it was agreed to increase food tastes with a dysphagic diet and liquids thickened to a double cream consistency. Robert was advised to be cautious and build up oral intake slowly along with his ability to control his swallow. He was delighted. Within a month Robert had gained sufficient weight that his PEG feed was reduced to less than a third of his daily nutritional need. He had experienced one chest infection, which cleared up with a course of antibiotics. Since his stroke, the medication to reduce saliva had been withdrawn. Having returned to oral feeding, Robert had experienced an increase in drool during and after eating and was highly aware of this. Reluctant to reduce oral moisture or the beneficial effect saliva has in assisting digestion, he was helped to manage this by verbal prompts to swallow before and after each mouthful and by keeping a small hand towel at the side of his wheelchair. He continued to maintain a satisfactory weight. Icing and brushing was now replaced by swallowing practice with a dysphagic diet three times a day and thickened liquids. Robert no longer needed nutritional support from the PEG and it was removed in August 1997. In February 1999, after a number of visits and training sessions with new carers, Robert moved

to a community placement near his family after 44 years in hospital.

Significant factors
Roberts motivation and the dedication of nursing care staff were significant factors in the successful outcome. The accessibility of the on site speech and language therapist and professional support from more experienced therapists within the learning disabilities team also had an impact on decision making and intervention strategies. Although there is limited literature on return to oral feeding after PEG in the learning disabled population, Langmore et al (1998) and Logemann (1983) discuss interesting comparisons between the elderly and learning disabled with regard to dysphagia. These client groups can share a number of risk factors, which indicate their vulnerability to swallowing difficulties. Normal ageing produces significant physiological changes in swallowing function. Poor dentition can decrease chewing ability, reduced muscle strength can affect palatal pressure and lip seal, and reduced airway closure lengthens swallowing apnoea time. Less efficient chewing takes longer to prepare a bolus, which is then poorly controlled. This can result in oral or pharyngeal spillage. Around the age of 70 years, overall efficiency of the swallow decreases which can result in the need for a second swallow to clear residual materials, an indication of the reduction in flexibility of neuromuscular control. Intensity of taste and smell also reduce and some medications leave an unpleasant taste, which can result in a lack of interest in eating and drinking. The result can be weight loss and an increase in susceptibility to further medical complications. Logemann (1993) describes a higher risk of oesophageal dysfunction and acquired oropharyngeal disorder when the ageing person experiences a stroke or has a degenerative condition such as Parkinsons. In addition to the normal effects of ageing, a person with cerebral palsy experiences increased respiratory system difficulties with greater susceptibility to pulmonary disorders, slower reflexes and slower processing of information by the brain (Scope, 2000). Can the effects of premature ageing be seen in people with learning disabilities who have cerebral palsy? It seems possible that a body already stressed by the limiting effects of cerebral palsy would exhibit muscle fatigue, loss of compensatory strategies and reduced flexibility. But what impact has the close support of carers and involvement of professionals in the early identification of such

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changes? Roberts symptoms emerged over a protracted period of time, which may have been accepted by carers as the result of ageing on an already affected swallowing ability, rather than signs of an additional acute episode.

True test
Assessment and management of dysphagia should be a true test of person centred planning and reflective practice, as decisions made have far reaching consequences. Non-oral feeding has implications for quality of life, sociability and selfesteem, not only for the person concerned, but also impacting on carers and family. Logemann (1983) describes an interesting hierarchy of intervention with compensatory strategies, looking first at postural changes then heightening sensory input and finally changes in the way a person is fed. From clinical experience, alteration of food consistencies along with positioning would be addressed initially to seek to reduce the risk of aspiration or choking. This would be reinforced by environmental support such as carer training and other intervention either indirect or direct. Supplements/alternatives have an initial cost. Would the same effects be obtained by modifying posture and environment and reviewing over time? I have concerns that time may compound health issues when the client is already vulnerable. Due to the combination of difficulties Robert presented, the multidisciplinary team felt the first priority was to find an answer to his nutritional needs. Although such immediate intervention can remove some element of control and responsibility from the client and carers, we felt that, once he was stronger and more medically stable, he would be better able to participate and benefit from further intervention. For Robert, this method of intervention proved beneficial. The experience of working with Robert also raised a number of questions about how speech and language therapists deal with non-oral feeding after a PEG is fitted. Do we perhaps think we have little to offer? If, after a stroke, aphasic difficulties are identified, intervention is offered to help the client re-learn functions. Yet, although 45 per cent of cerebrovascular accident admissions to hospital have some degree of dysphagia detected and reduced nutritional status and respiratory problems are associated with increased death rate compared with stroke and no dysphagic problems (SIGN, 1997), most involvement in dysphagia after a stroke and PEG relies on annual assessment and little else. Clarke (1999) described support given to her husband to relearn everyday functions like brushing his teeth,

...regular assessment after PEG is an essential part of dysphagia management whether the chosen strategy is rehabilitation or a combination of two methods of feeding.

yet his potentially life threatening feeding problems were assessed, identified, non-oral feeding implemented and no further support was offered to re-learn any possible feeding skills. In Lucas (1998), two PEG fed patients had speech and language therapy reviews and were offered swallowing therapy. Both returned to oral feeding, one while still in hospital and the other two months after discharge. This supports Park et al (1997) who stated that, for patients with severe swallowing difficulties, speech and language therapy input and ongoing review make a significant difference to management and outcome. The timescale is relatively short compared with the case of Robert, one of the differences in working with people with learning disabilities. Communicating Quality 2 (RCSLT, 1996) states that the speech and language therapist should not make the management decisions around dysphagia alone and neither should they be made lightly by the multidisciplinary team. Robert was able to express his desire to taste and drink again and continued to do so when he was advised that it wasnt safe for him to be fed any other way than through a PEG. Neither Robert nor his care staff were ready to consider he may never swallow again. Lucas (1998) identified the need to provide manageable information at the appropriate time. By agreeing stages of intervention to achieve a possible swallow - structured, simple, sequential protocols as his oral control strengthened - we were able to respect Roberts wishes to attempt to eat again. Staged support, as and when it was required, reduced dependence on the speech and language therapist while protecting Robert from the risk and fear of aspiration. If the client chooses a different course from that recommended by professionals, this should not influence the quality of care he subsequently receives. In this way he actually achieved his goal, which we had not considered a possible prognosis. From practice with multidisciplinary teams and experience gained from working with Robert, I conclude that regular assessment after PEG is an essential part of dysphagia management whether the chosen strategy is rehabilitation or a combination of two methods of feeding. As this study demonstrates, through determination and consistency of support Robert was able to enjoy his porridge again. Lorraine Speirs is a speech and language therapist in Forth Valley. This article is based on a case study prepared for the Manchester Advanced (Level 3) Dysphagia Course, ALD Module.

References
Clarke, M. (1999) To eat or not to eat. Bulletin of the Royal College of Speech & Language Therapists 562: 7-8. Langley J. (1988) Working with Swallowing Disorders. Winslow Press. Langmore, S.E., Terpenning, M.S., Schork, A., Chen, Y., Murray, J.T., Lopatin, D. & Logemann, J.A. (1983) Evaluation and Treatment of Swallowing Disorders. College Hill Press. Logemann, J.A., Shananhan, T., Rademaker, A.W., Kahrilas, P.J., Lazar, R. & Halper, A. (1993) Oropharyngeal Swallowing after Stroke. Dysphagia 8: 230-234. Lucas, C. (1998) Dysphagia: does SLT input make a difference? Bulletin of the Royal College of Speech & Language Therapists 554: 10-11. Park, C., Wyatt, R. & ONeill, P. (1997) Chronic dysphagia: The case for periodic reviews. Bulletin of the Royal College of Speech & Language Therapists 541: 13-14. RCSLT (1996) Communicating Quality 2. Royal College of Speech & Language Therapists, London. Russell, A. & Hill, P. (1992) Transitional Feeding The Team Approach (2nd ed). JFC Foundation, Australia. SCOPE (2000) An Introduction to Ageing and Cerebral Palsy. Scottish Intercollegiate Guidelines Network (SIGN) (1997) Management of Patients with Stroke, Part III: Identification & Management of Dysphagia. www.sign.ac.uk/guidelines/published/index.html due for updating 2003.

Resources
Exeter Lip Sensor - source not known Introtalker - www.prentrom.com Makaton Vocabulary Development Project www.makaton.org ORAC www.lancs.ac.uk/depts/mardis/products/orac.html

Postscript Having experienced a life filled with many challenges and achievements, Robert died in February this year, a month after his 83rd birthday. I will remember his gentle nature, hearty laugh and his delight at being reunited with his family in his later years.

Reflections
Do we see time since onset as a potential advantage for therapy? Do we recognise that complex causes need complex solutions? Do we ensure access to professional support?

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003