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To taste or
IF YOU ARE INTERESTED IN QUALITY OF LIFE HUMAN RIGHTS INFORMED CHOICE

That is the question posed by Yvonne Macleman as she considers the limited and conflicting evidence around the use of oral tasters with adults with learning disabilities who have a percutaneous endoscopic gastrostomy / jejunostomy (PEG / PEJ). Her answer lies in the client being at the centre of the decision-making process about when rather than if - oral tasters are offered.

y early dysphagia experience was with adults with acquired disorders, where I learned about the all or nothing concept around oral intake versus tube feeding. This concept appears to negate the need for speech and language therapy involvement and does not support the necessity of oral tasters. I remember a particular comment - Mr Wilson has a PEG - you dont need to be involved. Working with adults with learning disabilities in both Lanarkshire and Glasgow, I found an increasing number of people were presenting with dysphagia that was seriously impacting on their health, well-being and quality of life. Management often involved a team discussion around the decision to refer for gastrostomy / jejunostomy. This led me to contemplate my previous experience, and to ask if speech and language therapists should continue to be involved after tube placement, and in what capacity. I began to question both the use and safety of oral tasters, and the evidence. A literature review revealed a dearth of information specific to adults with learning disabilities, with most research around older people with acquired dysphagia and / or people with dementia. But what does the limited literature tell us? And what current best practice should we use as a benchmark? A pivotal discussion at an American Speech-Language Hearing Association conference suggested that clients who are nil by mouth for some time may stop swallowing their saliva at

the normal rate (Hill et al, 1997), and therefore are potentially aspirating saliva. There is a history of establishing a link between aspiration and gastrostomy feeding (Campbell-Taylor & Fisher, 1987; Taylor, 2002), with PEG / PEJ being performed as a long-term solution to prevent the continued aspiration of foodstuffs. Indeed, there is evidence that, post-PEG / PEJ, some people develop aspiration for the first time, and other people continue to aspirate (Finucane & Bynum, 1996). The risk to elderly patients of aspiration pneumonia after PEG may actually be greater than that of a small amount of oral intake, as these patients spend much time in a reclined position (Campbell-Taylor & Fisher, 1987). For the same reason, this may also apply to many adults with learning disabilities. Other support for continued oral intake proposes a dedicated attempt to feed by hand, and suggests PEG as a last resort (Finucane & Bynum, 1996). A key statement concludes that PEG is just as likely to cause the problems that it is thought to prevent (Campbell-Taylor & Fisher, 1987). Thinking about oral tasters, PEG and aspiration from the physiological / chest perspective alone would seem to support therapists recommending oral tasters. However, looking at chest status only can often lead to us advising against oral tasters. Why is there this discrepancy between custom and practice and the literature evidence? Is there a tendency to err on the side of caution? And is this the most sensible plan of intervention in the absence of a sound evidence base? If we consider oral tasters solely from a physical perspective proposing nil by mouth after PEG - are we actually maintaining or even increasing the risk of aspiration of both saliva and refluxed materials? Further physical factors complicating the picture are the bodys tolerance for aspiration (Huxley et al, 1978), increased prevalence of reflux in the population of people with learning disabilities (Bhmer, 1996), and how pathogenic different foods, fluids and saliva are (Holas, in Garon et al, 1997). Within this very clinical debate lies the core of the issue - the client themselves. We have to, and should, consider: The clients quality of life - physical and emotional health and social inclusion. The clients rights - both within a human and legal framework. The right to choose, and if the client can make an informed choice. Quality of life is a complex issue. It is clearly not enough to decide for or against oral tasters on clinical grounds alone, when we are supporting real clients in real life.

Basic human need

We cannot underestimate the basic human need for food and fluid, and how this need is instinctively fulfilled by oral intake. Langmore (1999) states, most people agree that exclusive tube feeding clearly diminishes a persons quality of life, and advocates avoiding tube feeding altogether. She goes on to say, the psychological perception of thirst appears to be only adequately quenched by drinking a thin liquid; and water seems to be a superior choice to satisfy this need.

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not to taste
This is endorsed by Garon et al (1997), who reported on 20 patients with PEG following cerebrovascular accident, 10 of whom were allowed free access to water. All 20 patients were allowed thickened fluids. The study group reported being highly satisfied and highly pleased with free access to water, and that even small sips of water made a big difference. Conversely, in the control group, nobody reported satisfaction with the thickened fluids only. Groher (1990) endorses the use of ice chips in palliative care, and Leff et al (1994) allowed all tube-fed nursing home residents the chance to eat, regardless of coughing or choking. This leaves the speech and language therapist in a dilemma but considering the clients right and ability to choose can help. In the current climate of user and carer involvement, capacity to consent and human rights, it is essential to place the discussion around oral tasters within a person-centred framework. The Adults with Incapacity Scotland (2000) Act is a useful tool in supporting the client to be at the centre of the decision-making process regarding oral tasters. The act states that a person is deemed able to consent until proven otherwise. It is known that carers cannot consent on behalf of an adult with a learning disability, unless guardianship and / or power of attorney has been granted. This contrasts directly with Lo et al (1986), who found that 79 per cent of patients would want relatives to make decisions around health care needs for them, should they be unable to consent themselves. In order for the client to make an informed choice, the act requires a person to: understand the choice and the consequences of that choice make the choice act on the choice communicate the choice remember the choice made. As speech and language therapists, we are in an excellent position to support our client in the decision-making process around oral tasters. However, if consent cannot be sought from the client, either to accept or reject tasters, then the Act states that a group of significant people should decide for the client, based on the principles of minimum intervention, past and present wishes and the clients best interests. The Act emphasises the use of all methods of communication to support the person to make an informed choice, rather than precluding them from doing so. We must also consider a clients human rights, and both the Disability Discrimination Act (1995) and Human Rights Act (2000) should lead us to consider the ethics behind the oral taster discussion. the patients best interests, and stress how difficult it is to feel emotionally detached from your client, friend or relative if you have to withhold or withdraw nutrition. The emotional impact is not only felt by the client, but also by those close to them. Leff et al (1994) present the view that food and water are basic human rights, and that tube feeding may often start in a coercive atmosphere of pressure from physicians, families and carers: The presence of the tube and its use may create the impression that it is crucial for the maintenance of life. Whether or not oral tasters may indeed create similar feelings of anxiety for both the client and carers is debatable, but what is clear is that this must be included as a factor in the decisionmaking process either for or against tasters. The ethical debate is summarised concisely by Peck et al (1990), who question the goal of tube feeding - life, comfort or calories? The literature is conflicting and confusing, and the clinician is left in a clinical, moral and ethical dilemma with regard to oral tasters. In light of this, I continued to question my own practice. I sought opinions from colleagues and friends. As I found no literature looking specifically at oral tasters for adults with learning disabilities, I developed a questionnaire to establish a benchmark expert opinion. Oral tasters were defined as teaspoonful-sized amounts of foods and / or fluids which are swallowed. Textures of tasters were taken from the draft National Descriptors for Texture Modification in Adults (BDA & RCSLT, 2002). I sent 33 questionnaires to speech and language therapists working with adults with learning disabilities in Scotland and England. I excluded speech and language therapists working with clients with acute neurological change as such clients often experience sudden onset and spontaneous improvement, and have an aim of recovery. In contrast our goal with adults with learning disability is often maintenance, as they are likely to have chronic dysphagia that has been present from birth and is deteriorating with age. From a return of 20 questionnaires, 15 respondents recommended oral tasters. Of these 15 respondents, no one gave only one reason for recommending the tasters. It is reassuring to note that quality of life was rated by all respondents as a reason for continuing oral intake through tasters, and that a team approach to decision-making is often used; with client, carer and multidisciplinary team members all rating highly in the responses. Other reasons given were Aim was to return to eating and drinking orally Peer discussion Client showing interest in other people eating Risk of aspiration was minimal for quantity given Discussion with GP Recommended by the speech and language therapist in hospital. This tends to support the notion that decisions around and with the client are rarely made on one variable alone. In terms of oral tasters offered, food texture C, with a smooth, uniform consistency that will drop off a spoon rather than pour, is offered more often than other food types. Small

As I found no literature looking specifically at oral tasters for adults with learning disabilities, I developed a questionnaire to establish a benchmark expert opinion.

Best interests
In their paper outlining the ethics around feeding and nutrition, Miskovitz et al (1988) discuss the view that the provision of food and water is not morally distinguishable from other life-sustaining medical treatments that may be withheld or withdrawn from time to time. This emotive topic is included in Wolfsen & Kozarek (1992), who emphasise the importance of

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amounts (1-3 teaspoons) were offered, and this was usually at mealtimes. It is worth noting that at mealtimes gave a comparatively high response rate, as this would reflect social inclusion of the person with a PEG with people eating orally during mealtimes. Further evaluation could question respondents about client-led timings for oral tasters, and whether mealtimes was understood as PEG feeding times or oral mealtimes. A range of fluid textures were offered, with thin fluid, naturally thick fluid and thickened fluids stages 2 and 3 being offered most often. Therapists were less likely to offer stage 1 thickened fluids (which can be drunk through a straw), or no fluids at all. Interestingly, of those five therapists who did not offer tasters to their clients, aspiration / chest status was cited as a reason by all respondents. Texture C foodstuffs with water in a large scale study similar to that of Garon et al (1997). Meanwhile, I am involved in further distribution of the taster questionnaire to a wider spectrum of health and social care professionals, including physiotherapists and dietitians. Yvonne Macleman is a speech and language therapist working for the Glasgow Learning Disability Partnership, e-mail Yvonne.Macleman@sw.glasgow.gov.uk. This article is based on an essay prepared for the Manchester Advanced (Level 3) Dysphagia Course, Adult Learning Disability Module. Yvonne is currently involved with Manchester Metropolitan University, looking at further research into this area.

Opinion has shifted

In supporting the adult with a learning disability who has dysphagia, and receives food and fluid via PEG, our goal must be to maximise health and maintain a good quality of life. In evaluating all the evidence, my opinion has shifted towards always considering and assessing for oral tasters post-PEG. To allow this to happen, we should consider not only a persons physical health, but also psychological impact on the client and carers, social inclusion, ethics, feelings and emotions. Human rights, legal rights and client choice must also be highlighted. The decision must be both client-centred and client-led, done with rather than to the person. What does this mean in practice? We need to develop a set of guidelines, rather than a prescriptive protocol. These guidelines should essentially indicate risk factors both for and against oral tasters, including all of the above parameters. Currently, if the decision is made to pursue oral tasters, the following questions may be considered:

References
British Dietetic Association & Royal College of Speech and Language Therapists (2002) National Descriptors for Texture Modification in Adults. Bhmer, C.J.M. (1996) Gastro-Oesophageal Reflux Disease in Intellectually Disabled Individuals. Amsterdam, The Netherlands: VU University Press. Campbell-Taylor, I. & Fisher, R.H. (1987) The clinical case against tube feeding in palliative care of the elderly. JAGS 35: 1100-1104. Finucane, T.E. & Bynum, J.P.W. (1996) Use of tube feeding to prevent aspiration pneumonia. Lancet 348: 1421-24. Garon, B.R., Engle, M. & Ormiston, C. (1997) A randomized control study to determine the effects of unlimited oral intake of water in patients with identified aspiration. J Neuro Rehab. 11: 139-148. Groher, M.E. (1990) Ethical dilemas in providing nutrition. Dysphagia 5: 102-109. Hill, M.C., Hill, K.A.W. & Loma, L. (1997) Salivary flow, swallow frequency, and oral microflora in NPO patients. Exhibit presented at ASHA Annual Convention. Nov 20th-23rd. HMSO (1995) Disability Discrimination Act. HMSO (2000) Human Rights Act. Huxley, E.J., Viroslav, J., Gray, W.R. & Pierce A.K. (1978) Pharyngeal aspiration in normal adults and patients with depressed consciousness. Am Jour Med 64: 564-568. Langmore, S.E. (1999) Issues in the management of dysphagia. Folia Phoniatr Logop 51: 220-230. Leff, B., Cheuvront, N. & Russell, W. (1994) Discontinuing feeding tubes in a community nursing home. The Gerontologist 34 (1): 130-133. Lo, B., McLeod, G.A. & Saika, G. (1986) Patient attitudes to discussing life-sustaining treatment. Arch Intern Med 146: 1613-15. Miskovitz, P., Weg, A. & Groher, M. (1988) Must dysphagic patients always receive food and water? Dysphagia 2: 125-126. Peck, A., Cohen, C.E. & Mulvihill, M.N. (1990) Long-term enteral feeding of aged demented nursing home patients. JAGS 38: 1195-98. Scottish Executive (2000) Adults with Incapacity (Scotland) Act 2000. Taylor, H.M. (2002) Pneumonia frequencies with different enteral tube feeding access sites. Am J Ment Retard 107 (3): 175-180. Wolfsen, H.C. & Kozarek, R.A. (1992) Perantaneous endoscopic gastrostomy. Ethical considerations. Gast Endosc Clin N Amer 2: 259-271.

The decision must be both clientcentred and client-led, done with rather than to the person.

Who?
A team decision, with the client at the centre of the decisionmaking process.

What?
Water (Garon et al, 1997), or Texture C foodstuffs (a smooth, uniform consistency that has a slow rate of oral and pharyngeal transit).

How Much?
1-3 teaspoons of food or fluid.

When?
Outwith mealtimes (presuming that mealtimes are times when a bolus PEG feed is given). This contrasts with questionnaire results, but would allow monitoring of a persons chest, and avoid confusing aspiration of tasters with refluxed material. However, this does present a challenge for carers to ensure social inclusion while eating and drinking.

How?
With the client eating and drinking independently, if at all possible (Langmore, 1999), in company, and socially included. Further research in the area of oral tasters is needed, specifically looking at adults with learning disabilities, possibly comparing

DO I RECOGNISE THAT TREATMENT MAY EXACERBATE PROBLEMS IT IS INTENDED TO SOLVE? DO I SUPPORT REAL CLIENTS IN REAL LIFE, OR DO I STICK RIGIDLY TO CLINICAL GROUNDS FOR DECISIONS? DO I ASK THE WHO, WHAT, WHEN AND HOW QUESTIONS THAT TAKE EVIDENCE INTO PRACTICE?

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