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ethics

From dilemma facing to decision making
Complex ethical dilemmas are an everyday occurrence for professionals including speech and language therapists. Fiona Graham and Alison Davison find that training in medical ethics as applied to dysphagia management has improved their team working, note keeping, confidence and objectivity.

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peech and language therapists working with dysphagic patients frequently encounter complex medical and ethical problems. We may ask the difficult questions but do we have the necessary training and knowledge of ethical frameworks to answer them in a more objective way? The North East Dysphagia Specific Interest Group committee collaborated with members of a Medical Ethics in Gerontology Group in Newcastle upon Tyne and held a one day conference entitled ‘Medical Ethics in Dysphagia Management’ to cover many of the challenges faced by therapists working in a variety of settings. Although the day was focused on dysphagia in stroke and dementia, many of the topics discussed were also appropriate to clinicians working in the areas of learning disability, progressive neurological disorders and paediatric dysphagia. Key speakers in the fields of old age medicine, psychiatry, medical ethics, speech and language therapy, philosophy, and nursing were represented. The audience comprised mostly speech and language therapists, with a number of nurses, dietitians, specialist nursing staff, medical staff, chaplains and physiotherapists. The morning sessions included presentations on percutaneous endoscopic gastrostomy (PEG) feeding, prognosis of stroke and dementia, and the principles of medical ethics and justification. The afternoon concentrated on the presentation and discussion of case studies by an invited panel and the audience within the context of the morning’s lectures.

Importance of nutrition
Dr Nick Thompson, consultant gastroenterologist at Freeman Hospital, stressed the importance of nutrition in the stroke population. He went on to address in detail the prognosis, risks and quality of life associated with PEG feeding. The procedure itself has a 1-2 per cent mortality rate, which must influence any decision to undergo PEG insertion. The insertion of a PEG may lead to complications such as haemorrhage, peritonitis, sepsis, pneumonia or displacement / removal of the tube. There is little evidence available about quality of life associated with a PEG. Dr Julian Hughes, consultant psychiatrist at Newcastle General Hospital, discussed prognosis with different types of dementia. The diverse nature of dementia is such that, while some people may live many years following an initial diagnosis, others may have a much shorter life span. The nature of the condition and prognosis may depend on the type of disease, severity, age of diagnosis or sex of the patient. His main message was that each case should be treated individually, taking all the above variables into consideration. The Reverend Bryan Vernon, a lecturer in the ethics of healthcare, then introduced the delegates to four principles of medical ethics: autonomy, beneficence, non-maleficence, justice (figure 1). One case which had raised such debate for us was that of a 90 year old man with a diagnosis of

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Alison Davison

if you • face ethical dilemmas • need a confidence boost • want to improve your decision making

Fiona Graham

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ethics

dementia, organic brain disease following a head injury ten years previously, and depression, who had been admitted to hospital several times over six months with chest problems. On each admission he was seen and assessed by the speech and language therapist. The pattern was one of fairly rapid deterioration and, although initially management had been diet modification and advice to carers, by the third hospital admission the dementia and related dysphagia had progressed to such a degree that no consistency of food or drink was considered without risk. He had no next of kin, and very limited ability to understand or make decisions for himself. He was constantly in distress and crying out on the ward and would often pick up empty cups and put them to his mouth as if drinking.

Figure 1 - Four principles of medical ethics

Team discussion
The speech and language therapist was aware on diagnosing a severe progressive dysphagia that any decision on feeding would have implications for the patient’s quality of life and ongoing care. Feeding orally carried a high risk of a life threatening pneumonia, and not feeding would leave the patient deprived of nutrition and the pleasure of eating. Naso-gastric and PEG feeding would also carry risks including poor patient tolerance and surgical hazards and complications. The initial recommendation by the speech and language therapist was that the issues involved in this case should be discussed at team level. This went ahead and the patient was kept nil by mouth on intravenous fluids in the meantime. Short term naso-gastric feeding was not possible due to agitation. The consultant, nursing staff, physiotherapist, occupational therapist, house officers and speech and language therapist were all present at the meeting. Although legally the consultant has the final say in cases where the patient is unable to make choices, the case was discussed at length and all were in agreement that our patient should be allowed to eat for his own pleasure and quality of life. PEG feeding was dismissed as a viable option. It was felt that, given his poor prognosis and the risks involved with a PEG, it was inappropriate to deprive him of the only thing he had been seen to enjoy. The decision was made to minimise the risk of aspiration by allowing his chest to improve over a weekend, and attempting to ensure aggressive oral care. He was fed small amounts of oral intake four days later. Staff observed that he appeared to enjoy this. He developed aspiration pneumonia a day later, was kept comfortable on the ward with no more intravenous fluids, and died not long afterwards. A contrasting case involved a 28 year old female admitted to the neurosurgical unit having sustained a severe head injury in a road traffic accident. She was a known intravenous drug user and premorbidly significantly underweight. Difficulties weaning from the ventilator resulted in a tracheostomy. When first seen by a speech

1. Autonomy The principle of autonomy is about having respect for an individual’s ability to make decisions and choices regarding their medical care or treatment. Topics addressed around this were: Can we be sure that individuals are capable of understanding the nature of their condition? Can they make informed decisions about methods of feeding? Is the person able to express a view or have a view expressed (very pertinent in the case of dysphasic clients)? Do certain behaviours (for example, pulling out a nasogastric tube or turning away from a spoon) express a desire / need? How can we be sure that previously held views, which may have been expressed to friends or family, have not changed? How can we know that the wishes of the family are in line with what their relative would have wanted? Can a person’s views be influenced by mental health factors such as depression and, if so, would those views change after treatment? 2. Beneficence This principle means acting in the best interests of the patient, that is, ‘doing good’. It covers feeding, and the basic human need for nutrition. Delegates discussed the benefits of PEG and naso-gastric feeding as an aid to rehabilitation in stroke. Issues surrounding dependence for feeding were also raised, and the need for awareness of carers as to what is ‘good’ or ‘harmful’ for an individual - for example, inappropriate diet consistency. For some patients, eating and drinking is not always in their best interests. However, in many cases, it can be argued that it may also be in the best interests of an individual not to prolong a life of suffering. 3. Non-maleficence Surrounding this principle of doing no harm to another person were the questions of withholding feeding and malnutrition. The appropriateness of PEG feeding for patients with end stage dementia was discussed in detail. There are many issues surrounding the ethics of allowing people to go on eating and drinking with the knowledge that it may be doing them harm. Documentation is important in these cases, stating the risks and benefits according to evidence based clinical judgement. However, in many patients with dementia, bedside assessment is not sufficient to diagnose accurately the nature of a problem. Videofluoroscopy may not always be easily accessible or appropriate, and many at the conference felt it should only be done if those involved are prepared to alter the management of a patient, by instigating non-oral feeding if aspiration is confirmed. Could PEG feeding improve the quality of life of the patient, or would it actually cause harm, depression or increased suffering? Is a person to be denied the pleasure of eating and drinking because it may lead to their death? 4. Justice The principle of treating equals equally and unequals unequally according to their relevant difference is all about treating people fairly. If two patients in adjoining beds have similar impairment and disability, but very different cultural or religious belief systems, the principle of justice dictates that it may be appropriate to manage these patients in different ways. We each carry with us our own personal belief systems. It is often impossible not to convey these in some way as we go about our work. Our voices may belie the content of our language. How much of our own personal belief is it appropriate to convey to a patient or their family? Is it at all possible to remain completely objective?

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ethics

and language therapist she was unable to cooperate with assessment, agitated and receiving regular chest physiotherapy. She was urgently in need of nutrition but not tolerating naso-gastric tubes. Initial bedside swallowing treatment revealed a high probability of aspiration on all consistencies. Her mother, as her next of kin, was consulted regarding possible alternative methods of feeding. She adamantly refused to consent for a PEG on the grounds that it was not what her daughter would have wanted. Whilst the risks of a PEG were fully explained, the implications of not receiving nutrition were also addressed at length. The team felt a PEG was the preferred option. However, the patient’s mother continued to oppose this. The patient herself was unable to contribute to the debate as she was not consistently following even simple commands and appeared severely cognitively impaired. One week later the patient was still receiving intravenous transfusions only but her chest was improving and the tracheostomy was removed. Reassessment of her swallow indicated continued risks including reduced cognition, positioning and poor oral control. The option of restraining the patient to allow naso-gastric feeding was raised. This was tried out but the patient became increasingly agitated and distressed and the trial was discontinued. The team was then faced with the decision of commencing oral intake in the knowledge of a risk of aspiration, allowing the patient’s nutritional status to be further compromised, or going against her mother’s wishes and performing a PEG. Initially the decision was made to trial modified oral intake. Whilst clinically she showed no signs of aspiration she took only approximately 3400 calories a day. The problem of nutrition was still pressing and, after 10 days, the decision was made to override the mother’s wishes and a PEG was performed. Two months later this was removed once she was fully meeting her nutritional needs orally and generally improving. The questions raised in this were: Did we have the right to override the mother’s decision, and who was acting in the patient’s best interest? Was our decision making in this case compromised by a lack of choice? Are we less willing to take risks with such a young patient than we were in the first case discussed? How much is the chance of the dysphagia improving a significant factor?

Should medical ethics be incorporated into undergraduate and postgraduate speech and language therapy training?

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1. The National electronic Library for Health is developing a resource on best current knowledge for professionals working in child health. See www.nelh.shef.ac.uk/childhealth. 2. The National Grid for Learning gateway to educational resources on the internet has been relaunched with a sophisticated search facility which gives users different routes to the information they need. This includes regional information and resources for the different UK countries. www.ngfl.gov.uk

ing recommendations for patient care; for example ‘team need to consider appropriateness of PEG’ rather than ‘recommend PEG’. Others feel that they are now more confident in instigating debate amongst other team members, and in encouraging the views of all those involved to be expressed. For our profession, our experience raises further questions around training. Should medical ethics be incorporated into undergraduate and postgraduate speech and language therapy training? Are we fully equipped to deal with many of these challenges at the level of basic dysphagia training? Are we involved enough in close working with doctors and nurses in making these difficult decisions? The introduction to ethical principles and the subsequent panel was stimulating and educational. Ethical issues are frequently complex, often with no right answer. By taking a systematic approach to the medical and ethical aspects of dyphagia, the conference initiated a structured means of debate amongst North East speech and language therapists. Fiona Graham and Alison Davison were on last year’s committee of the North East Dysphagia Specific Interest Group along with Kirsty Bramley. The cases discussed in this article are based on actual scenarios.

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Acknowledgement
The authors would like to thank Kirsty Bramley for her comments on an earlier version of this article.

References
Larson, D.E., Burton, D.D., Schroeder, K.W. & DiMagno, E.P. (1987) Percutaneous endoscopic gastrostomy. Indications, success, complications, and mortality in 314 consecutive patients. Gastroenterology 93 (1): 48-52. Loser, C., Walters, S. & Folsch, U.R. (1998) Enteral long-term nutrition via percutaneous endoscopic gastrostomy (PEG) in 210 patients: a four year prospective study. Dig Dis Sci 43 (11): 2549-57. Van Rosendaal, G.M., Verhoef, M.J., Mace, S.R. & Kinsella, T.D. (1997) Decision making and outcomes for percutaneous endoscopic gastrostomy: a pilot study. J Clin Gast 24 (2): 71-73.

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Structure
Those involved in the study day have commented on how an ethical framework helps to clarify the decision making process. Although these difficult questions were being asked previously, the knowledge of the ethical framework behind the questions provided a structure upon which to address the relevant issues. Therapists have commented that they are now more aware of the terminology they use in mak-

Reflections
• Do I use a structured approach when considering ethical dilemmas? • Would I benefit from training or peer discussion of ethical issues relating to my client group(s)? • Do I recognise the benefits of multidisciplinary liaison for reaching decisions in an ethical way?

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