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COVER STORY: HOW I

How I use the evidence in dysphagia management (2):

A question of taste
Hannah Crawford and Julie Bake explain why and how, in a move away from previous practice, they now implement oral taster programmes with people with learning disabilities and dysphagia who gain their nutrition via percutaneous endoscopic gastrostomy (PEG).

READ THIS IF YOU ARE INTERESTED IN ETHICS AND RISK MANAGEMENT CHANGING YOUR PRACTICE AS EVIDENCE EVOLVES THE ENJOYMENT OF EATING AND DRINKING

s practitioners working with people with profound and multiple disabilities, including learning disabilities, we have found that family and carers are often reluctant to go ahead with PEG (Percutaneous Endoscopic Gastrostomy) placement to support nutritional and/or dysphagic needs. While it is usually difficult to discuss the issues with the client due to limited capacity, they are often able to indicate whether eating and drinking is pleasurable. Carers and family frequently feel that, when the person does enjoy this, their quality of life would suffer if they were no longer able to eat or drink. In the past we felt that the risk of implementing any level of oral intake with someone who was dysphagic and suffered recurrent chest infections was too high to justify. However, reflecting on our role as health professionals, we are increasingly aware of the tension between our ethical responsibilities: to do no harm, to do the most good, to implement equitable practice - but to allow patients or clients to be autonomous, and support them in decision making about their own health. Sometimes the answers are not clear cut. Clients dont present like text book cases, and the answers or the most appropriate treatment routes are not always the most obvious, nor necessarily the ones we would choose for ourselves. In recent years, the publication of key papers led us to reconsider our approach: A seminal paper by Langmore et al. (1998) clearly identifies the factors relevant in the development of aspiration pneumonia. Mackie (2001) summarises the pros and cons of the use of PEG, and argues for the consideration of not only the technical aspects but also ethical, quality of life and moral issues to do with food and feeding. The Mental Capacity Act (2005) urges us to act in the least restrictive manner, and to allow patients to be autonomous and make unwise decisions. Reviewing the evidence in 2005, Macleman suggested this course of action, stating that my opinion has shifted towards always

Photo of Richard with Julie Bake by www.michaelsphotography.co.uk

considering and assessing for oral tasters post-PEG (p.22). We now work towards implementing some level of oral intake for all our clients receiving PEG feeds who have shown they want to have this. We use Sackett et al.s framework of evidence based practice (1996), with its three overlapping

circles representing client preference, clinical experience and best available evidence, to give context to our decision making. We consider each client in relation to Langmore et al.s (1998) predictors of aspiration pneumonia (figure 1). We look at the risk factors we are concerned about,

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COVER STORY: HOW I


Figure 1 Predictors of aspiration pneumonia (Langmore et al., 1998) Dependent for oral care? Several decayed teeth? Multiple medications? Tube fed? Figure 2 Discussion framework (based around Sackett et al., 1996)

COLONISATION OF BACTERIA

Client preference Discuss: clients wishes observations and thoughts of familiar care staff preferences of family

ASPIRATION INTO LUNGS

Large volume aspiration? Oral intake? Reflux? Micro aspiration? Saliva? Reflux?

IMPAIRED HOST RESISTANCE

Smoker now? Or in past? Lung disease? Multiple medical diagnoses?

Discuss experience with similar cases managed Review case history, assessment fndings and resulting recommendations

Discuss evidence: quality of life factors affecting severity of chest infections control the indicators for the development of aspiration pneumonia

DYSPHAGIA ACQUIRED PNEUMONIA

Risk of developing chest infections or pneumonia?

Clinical experience

Best available evidence

and use this to guide the amount, type and frequency of oral intake or tasters as well as the associated recommendations. Working through this flow diagram, we advise ensuring teeth are clean, either getting the client to engage in good tooth brushing, or encouraging family or carers to do this regularly. Where required we also engage dental services to support this. If there are significant concerns about chest status we attempt to reduce the amount of aspiration by limiting tasters to the most that we feel the client can cope with, down to only a spoon handle dip rather than teaspoons. We engage GPs and dietitians to ensure any reflux is addressed and stabilised where possible. We take into account general health and diagnoses, and whether these are stable, before implementing any oral intake or tasters programme. We also look at the overall pattern of chest status in dictating the amount and regularity of tasters. We still recommend oral intake or tasters if clients suffer from chest infections, but we are more cautious as to amounts. We also ensure that all decisions about the implementation of tasters take place at a multidisciplinary planning meeting, including a Mental Capacity Act (2005) Best Interests discussion. We state that we cant rule out a client continuing to have some chest problems but, if we control the indicators for the development of aspiration pneumonia, then the chest infections are likely to have developed whether the client was having tasters or not. We then have to debate as a multidisciplinary team whether this risk is ethically acceptable. These decisions need to be made on an individual client basis by the

team, with family and carers involved, as well as the client where possible (see discussion framework in figure 2).

Benefits

We have now worked with sufficient clients on various levels of tasters to know that their carers report benefits including: a) Ongoing use of skills: Tasters allow her to continue to use her sense of taste. b) Increased quality of life: She enjoys experiencing different things and is able to express her favourites. c) Social benefits: He looks forward to having his tasters; he enjoys them and it includes him in the social aspect of eating and drinking. Some of the negative aspects have included a client wanting more than is indicated on the recommendations, or when a client eats well it can affect their PEG regime. A key indicator for action is any distress experienced by the client. If the client coughs or shows signs of distress on oral intake, we consider limiting or not going ahead with tasters. Where a client is non-verbal, or where there is debate about signs of distress, tools such as the DisDAT (Regnard et al., 2007) are extremely useful in mapping regularity, pattern and intensity. We have for example used this tool to help look at optimal timing of oral intake. For one client we mapped distress levels throughout the day. This indicated that they peaked at times of oral intake, so we were able to work with carers and family to reduce intake to a smaller level of tasters. For another client, staff reported distress at taster times and wanted

to reduce them. However, with DisDAT, we were able to show distress was in no way associated with tasters but was consistent across days and linked to other causes. Our oral intake or tasters programmes ultimately aim to address the clients choice - what the client would want. It may be that the client, carers and team agree to accept a small level of risk in continuing to implement the programme. This needs to be addressed with good multidisciplinary planning and risk management, incorporating clinical factors as discussed earlier such as good oral hygiene and stopping in periods of ill health. Julie will now outline her work with Richard to illustrate the implementation of a tasters programme:

ichard is a 62 year old gentleman living in a group home. He has spastic cerebral palsy, particularly affecting the function of his left side. He has moderate learning disabilities and is non verbal, however is very able to get his message across using gesture, facial expression and vocal intonation. Richard was referred to our speech and language therapy service following deterioration in his eating and drinking skills and recurrent chest infections. Following a full eating and drinking assessment, Hannah completed a videofluoroscopy which identified significant oral and pharyngeal difficulties. Of particular concern were a rigid epiglottis - which resulted in a complete inability to protect his airway while swallowing - and dysmotility of the oesophagus. Both Hannah and his care providers had concerns that these problems would continue to have a considerable impact on Richards enjoyment

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of eating, hydration levels, chest condition and on his general health and wellbeing. Following discussion with Richard and the multidisciplinary team, he had a PEG inserted. A subsequent change in manager in the home meant that for a year we didnt have contact with Richard, and didnt formally implement a tasters programme. About a year later we were having discussions with the new manager of Richards home. It became apparent that she had offered him some tasters, which Richard had really enjoyed, and we agreed to start a formal tasters programme. However, there was tension among the staff group at the home, with some reluctance to implement a programme because of concern about Richards health, having seen the videofluoroscopy. They were concerned that Richard would choke, that he would become unwell again, or that very small amounts of food would be tormenting rather than pleasurable. We discussed all their concerns, and the evidence to support the implementation of tasters which would aim to address Richards quality of life and risk. Hannah recommended a programme tailored to deal with some of the issues raised by Richards care staff at home. The manager of Richards day service rather than the home - volunteered to roll out a tasters programme with the full support of speech and language therapy (figure 3). My role as a nutritional practitioner has been central to this case. The role has developed over time and is particularly valuable to the team. I am a senior Allied Health Professions assistant, shared and co-supervised between speech and language therapy and dietetics. I work only with people with eating and drinking difficulties. In support of dietetics management, this includes people who need nutritional support or weight management. In support of speech and language therapy, I monitor people who are stable, or check dysphagia recommendations are being followed. In some cases, as with Richard, a client is receiving involvement from both professions. Hannah asked me to see Richard to roll out taster sessions with permanent key staff at the day centre. I made several visits and worked with each member of staff individually, demonstrating how to support Richard to have tasters. His enjoyment of these tasters - and the pleasure of staff at seeing this enjoyment - was very apparent. The sessions have now developed and are a focal point of his day. In the morning Richard also goes shopping to choose what taster hell have that day. I am currently going into Richards home to demonstrate taster sessions there, and Richard continues a year later in good health SLTP and enthusiastic about his oral intake. Hannah Crawford (email hannah.crawford@ tewv.nhs.uk) is a consultant speech and language therapist and Julie Bake (email julie. bake@tewv.nhs.uk) is a nutritional practitioner with Tees, Esk & Wear Valleys NHS Foundation Trust in Middlesbrough.
Figure 3 Richards taster programme Tees, Esk and Wear Valleys NHS Foundation Trust Name: Richard Current feeding status: PEG Date of birth: NHS no.: Carers aware of programme: Richard indicated keen to try food, all carers aware

Is there a recent dysphagia assessment? Yes Times when tastes should be introduced: During lunch time at day service Times when tastes should be avoided: Half an hour before PEG feeds or up to an hour after PEG feeds Avoid if Richard tired, unwell or has a chest infection Drink / Food types to be offered / preferred: Mousse, trifle, yoghurt, dream topping, ice cream, pureed fruit Positioning: Richard should be upright and midline, in a stable supportive position Method of delivery and quantity offered: Dip handle of plastic spoon in food and pull out so handle is coated only Give spoon to Richard so he can feed himself 3 dips only then stop Consistency of taste: Completely smooth and totally lump free consistency Indicators of enjoyment: Asking for more Smiling Indicators to stop: Coughing Unhappy facial expressions and refusal Required experience of the person assisting / named people: Permanent, experienced members of staff Method of recording session: Recording sheets Person compiling programme and review date: Hannah Crawford (Consultant Speech & Language Therapist) Other instructions: Give verbal and visual prompts that 3 tasters only, and count Richard down Give plenty reassurance that there will be more tomorrow Maintain scrupulous oral hygiene programme Form designed by Katie Ferguson, Speech & Language Therapist, TEWV NHS FT

Langmore, S.E., Terpenning, M.S., Schork, A., Chen, Y., Murray, J.T., Lopatin, D. & Loesche, W.J. (1998) Predictors of aspiration pneumonia: how important is dysphagia?, Dysphagia 13(2), pp.69-81. Mackie, S.B. (2001) PEGs and Ethics, Gastroenterology Nursing 24(3), pp.138-142. Macleman, Y. (2005) To taste or not to taste, Speech & Language Therapy in Practice Summer, pp.20-22. Mental Capacity Act (2005) Available at: http://www.legislation.gov.uk/ukpga/2005/9/ contents (Accessed: 20 April 2011). Regnard, C., Reynolds, J., Watson, B., Matthews, D., Gibson, L. & Clarke, C. (2007) Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT), J Intellect Disability Res 51(4), pp.277-292. Sackett, D.L., Rosenberg, W.M.C., Gray, J.A.M., Haynes, R.B., & Richardson, W.S. (1996) Evidence-based medicine: What it is and what it isnt, British Medical Journal 312, pp.71-72.

References

REFLECTIONS FOR TEAMS DO WE GIVE SUFFICIENT PRIORITY TO THE SKILL MAINTENANCE, QUALITY OF LIFE AND SOCIAL BENEFITS OF EATING AND DRINKING? DO WE EXTEND OUR REACH BY EMPLOYING SHARED ASSISTANTS FOR SPECIFIC ROLES? DO WE AIM FOR WHAT THE CLIENT WANTS, EVEN IF IT DIFFERS FROM WHAT WE WOULD CHOOSE FOR OURSELVES?
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