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Communication an inalienable right W

When a person wakes up to find themselves in the alien environment of an intensive care unit, they may well feel they have come from another world. While vital contact made through current alternative and augmentative communication methods is limited, there is light in the shape of the ICU-Talk device. Fiona MacAulay reports.
hen patients recovered consciousness after anaesthesia or sedation, they reported that they experienced complete emptiness - devoid of any thought or feelings; and their language did not function normally. They could not make themselves understood and therefore were unable to communicate and share experiences and feelings with others. They became aliens, strangers, when they woke up, connected to peculiar machines and apparatus, and tied in their beds. They had no expressions or concepts for the situation, and were unable to conduct a dialogue, and therefore unable to share their experiences. (Granberg et al, 1999). Communication failure has been identified as one of the most frustrating and stressful aspects of caring for the temporarily non-speaking, ventilated person in an intensive care unit (Costello, 2000). Difficulty in communicating with ventilated patients has been well documented in the nursing and intensive care literature (Ashworth, 1984) but tends to be glossed over by alternative and augmentative communication literature. This is unfortunate as the ICU patient population as a whole is challenging and thought-provoking in terms of AAC, as our three year collaborative research project developing the ICU-Talk device has shown. Although many patients are sedated during their stay in intensive care, as they recover they are weaned off the ventilator, sedation is reduced, they waken up and, at this point, most attempt to communicate. There is also a group of patients within ICU who have conditions like Guillain Barre Syndrome, complications post meningitis, respiratory failure, severe chest injuries and high spinal cord damage. Although receiving ventilatory support, they are conscious and attempting to communicate for part of their more prolonged ICU stay. These are the patients who tend to be referred to speech and language therapy for AAC intervention.

My experience of AAC with patients in intensive care before our study was limited. I found that the high-tech devices we had available in the cupboard were only occasionally useful in ICU. The buttons on the Parrot were too small for patients to press, and the old-fashioned scanning Possums which were 4, 16 or 128 location were too bulky, slow to use and required a high degree of concentration and coordination. The E-Tran eyepointing frame was flexible but required a high degree of concentration and cooperation from the patient. Nursing staff within intensive care encourage patients to use alphabet charts and writing to communicate but feel these methods have severe limitations as they require high levels of concentration. Patients trying to use these methods may produce words or phrases which are meaningless, bizarre, inappropriate or difficult to interpret. This is supported by literature which reports that these methods are time-consuming and frustrating (Albarron, 1991; Ashworth, 1984). Patients have also stated difficulties with these communication techniques (Hafsteindottir, 1996). Over the last ten years the little that has been published for speech and language therapists about communication aiding or augmentation for patients in intensive care has come mainly from the United States (Costello, 2000; Beukelman & Mirenda, 1998; Dikeman & Kazandjian, 1995). The American intensive care unit populations described differ from those here. The UK units are more general so they see a greater range of patient types with few planned admissions. Many US patients tend to be in highly specialised units (Mitsuda et al, 1992). In, say, a neurosurgical ICU there may be very few patients who could use AAC due to their cognitive problems, while in a surgical ICU with planned admissions, patients can be taught a technique prior to admission or learn it while in the unit.

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Figure 1 The ICU-Talk communication aid.

Exceptional skills
Nursing staff who work within the ICU setting have exceptional skills in questioning to elicit information on pain or discomfort levels but, because of the patients situation, engaging in conversation beyond the level of basic needs or understanding and replying to unique questions is not possible. Low morale and depression are commonly documented in patients experiencing a prolonged stay in ICU, and having an effective means of communication is a recognised way of reducing this. Most articles advocate the use of low-tech AAC systems for ICU patients, stating that high tech solutions are not suitable for the intensive care environment. However, the last 20 years has seen many advances in terms of com-

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2002

Figure 2.1 Boxes Interface showing topics

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Figure 3 Effect on AAC use Figure 2.2 Boxes Interface showing questions
Presenting feature Fatigue Possible Cause medication general medical condition withdrawal of sedation Effect on AAC use poor concentration poor ability to retain information hallucinations

puter hardware and the limits difficulty using touch screen, mouse, joystick, Generalised being bed bound of what computers can do. effect of medical condition trackball weakness tire quickly The department of applied tremor in hand or arm computing at Dundee reduces cooperation medication University along with the Reduced short-term memory loss (unable to retain general medical condition cognitive Dundee speech and language instructions) abilities long-term memory loss (do not remember their therapy service has been develstay in ICU) oping AAC systems for 15 Figure 2.3 Bubbles Interface showing difficulty following instructions topics years. While working on a sys unwilling to try something new Fear/anxiety/ waking up in the alien tem for adults with aphasia we reduced concentration environment of ICU denial of felt that some of the principles realisation of what has happened only want to use speech to communicate problems difficulty coming to terms with of reduced cognitive load, minphysical problems imal training, and transparent feeling they are not getting better poor motivation to participate interface could be used to Low mood severity of medical condition unwilling to try something new develop a system specifically feelings of isolation social withdrawal therefore dont want to for intubated patients in intencommunicate sive care. A three year funded at Ninewells Hospital, Dundee for trials with patients. collaborative research project, Using the ICU-Talk device and working closely ICU-Talk, was set up to develop Figure 2.4 Bubbles Interface showing with the intensive care unit nurse has taught me and test an AAC device for phrases a great deal about these patients and the effects intubated patients in intensive that having a life threatening condition and a care. My partners in the prolonged stay in intensive care have on the research were a software engipatient. These in turn affect the patients ability neer and an ICU nurse. to use an AAC device (figure 3). There were two steps in the Despite all the complications described, 21 development of the ICU-Talk patients over a 12 month period have used the device. The first involved idenICU-Talk device. Preliminary results show that tifying a suitable hardware patients are able to use the system with only minplatform to run the software imal training to communicate. Most patients only and then mount the hardware. use of the touch screen, mouse or single switch use it for a short period of time, as the window of The second was to develop the ICU-Talk software scanning (see figure 2). The interfaces were opportunity is small - perhaps only 24 to 48 hours that would control how the device worked. designed to be visually stimulating but not distract- between having their sedation reduced so they Many restrictions apply when developing an aid ing, and advice was sought from a computer games are awake and extubated. There have been no for use in the intensive care environment. Risk of company as to how best to achieve this. They told admissions of people with Guillain Barre infection to and between patients is a major conus how we could keep the animation working from Syndrome or of other long-term alert and comcern, so equipment must be able to withstand rigthe same direction all the time so that the user municating patients during the evaluation period, orous cleaning with chemical solutions. Staff must remains focused on the important central part of the initial target group for the ICU-Talk device. be able to move the device out of the way quickthe screen. The software includes a database of ly in an emergency and the patient must be able phrases organised under eight topic headings. To to use it when lying or sitting in bed, or from a ensure the phrases were relevant for their intubatOne of the features that most surprised me was the chair. It must be able to be accessed using a range ed patients, nursing staff from ICU were asked for patients inability to remember anything about of input devices to compensate for a patients examples of phrases patients frequently use, and using the ICU-Talk device or about their stay in ICU. physical weakness. researchers also observed and noted the communiThis phenomenon is documented in the literature The multidisciplinary project team addressed cation attempts made by patients. Communication (Russell, 1999; Stovsky et al, 1988) and is commonly these factors and a solution was found which was partners during observations were usually relatives, seen in patients who have been ventilated. limited by the available hardware at that time. A so about half of the phrases were very personal, However, it meant that we were unable to ask the rugged, waterproof, flat panel screen was everyday things such as a query about a family patient how they felt about using ICU-Talk or for obtained from Dolch. This screen weighed approxmember, or who was walking the dog. A computer feedback about what it was like communicating imately seven kilograms and so required a special based interview was designed for relatives. There with it. A questionnaire we put together was only heavy-duty mounting solution to allow it to be were thirteen questions which asked for informacompleted by three relatives. We had difficulty suspended safely above a patient (see figure 1). tion like names and ages of children, and hobbies. accessing relatives and patients once they were disThe answers were turned directly into personal charged from the unit, and no relative returned phrases in the ICU-Talk device, and were available the questionnaire if it was posted to them. Many of Software was developed with the specific needs immediately for the patient to use. our results are therefore anecdotal - from nursing of the ICU patient in mind. It had to be simple to The first prototype ICU-Talk device was finished in staff, our own observations of patients using the use and easy to learn with minimal training. Two May 2001 and introduced to the intensive care unit device and from the data recorded automatically interfaces were developed which each supported

Many restrictions apply when developing an aid for use in the intensive care environment.

Surprised

Specific needs

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2002

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Figure 4 Case examples Irene was a 44 year old lady admitted to ICU with septicaemia. She was ventilated via a tracheostomy for 15 days prior to using ICU-Talk. By the time ICU-Talk was introduced she was recovering from serious infection and was extremely weak. She was unable to use the touch screen due to weakness and tremor in her upper limbs and was attempting to use the trackball. She was keen to communicate and was using non-verbal methods of communication such as mouthing, which was very difficult to interpret, basic non-specific gesture, facial expression, and was nodding and shaking her head in response to questions. When using ICU-Talk Irene was able to use a range of utterance types including requests such as Put the bed back, statements like I want to die, My throat feels sore, and questions including, What did the doctor say?, What day is it? Irene used ICU-Talk with nurses who were looking after her but feedback from the nurses was that they did not feel it assisted with patient care. The nurses also felt that Irene tired quickly and that using ICU-Talk was a great effort. Davie was a 53 year old man admitted to ICU with an aspiration pneumonia. He was ventilated orally for one day prior to using ICU-Talk over a period of three days before being extubated. Although Davie had some generalised weakness of his upper limbs he was able to use the touch screen. A lot of time was spent scrolling though the pages of phrases as if looking for specific items. Most of what he said using ICU-Talk were questions asking for reassurance about what had happened to him. Nurses felt it did assist with aspects of his care and that Davie was able to use ICU-Talk to initiate conversations.
Figure 5 The new ICU-Talk prototype

by the ICU-Talk device, which logs all the button presses and selections made by the patient. Patients often had difficulty in following instructions. They were unable to take on board that their attempts at communicating using mouthing were unsuccessful and that, to communicate more effectively, they needed to slow down their speech rate, use single words and use ICU-Talk to augment their communication. Patients tired very quickly so sessions tended to be short and patients would give up unless they found what they wanted to say very quickly. The number of patients in ICU who are able to use an AAC system is relatively small but giving them the facility to communicate allows them to express their needs and wants and reduces their feelings of isolation (see case examples in figure 4). Feedback from nursing staff in ICU suggests they feel ICU-Talk is a good idea but that, in practice, the device was too big and its physical size put patients and staff off using it. Use of the ICU-Talk system depended a lot on the cooperation of the nursing staff. Although the ICU-Talk team tried to be present in the unit as much as possible, they could not provide weekend or evening cover. Some members of the nursing staff reported that, although they felt communication was important, they would rather that the patient was washed and all the days procedures completed before the ICU-Talk device was made available to the patient. This limited the patients ability to use communication to participate in aspects of their care. Many of the feelings and perceptions of the nursing staff were to do with the overall size of the device. We have since sourced and trialled much smaller hardware, a fujitsu pentablet (figure 5), with two patients. Staff feel the smaller device is much better although it is not waterproof so has to be put in a plastic bag to be used, and has a smaller and less sensitive screen and poor quality built-in speakers. At the point of writing it has been ruggedised to make it suitable for use as an AAC device, and we are keeping an eye on the constant stream of new hardware coming on the market. The patients ability to locate what they want to say from the large database remains a difficult area and requires some further work to develop easy to use navigation methods. We have written a funding proposal for a multicentre randomised control trial to see if using this smaller version of ICU-Talk is more effective than the low-tech AAC methods traditionally used in ICU. This would be based on 160 patients in 8 ICUs across the UK and will also allow changes in the software and database reorganisation to be tested by a much larger number of patients. Fiona MacAulay is a senior speech and language therapist at Ninewells Hospital, Dundee. See www.computing.dundee.ac.uk/acprojects/icutalk for more information.

One of the References features that Albarran, J.W. (1991) A review of most surprised communication with intubated patients and those with tracheostomies within an intensive me was the care setting. Intensive Care patients Nursing 7; 179-186. Ashworth, P. (1984). Staff-patient inability to communication in coronary care units. Journal of Advanced remember Nursing 9; 35-42. D.R. & Mirenda, P. anything about Beukelman, (1999) AAC in intensive care setIn: Augmentative and alternausing the ICU- tings. tive communication: Management of severe communication disorders Talk device or in children and adults, Ed.2; 515530. Baltimore: Paul H. Brookes about their Publishing Company. Costello, J. (2000) AAC intervenstay in ICU. tion in the Intensive Care Unit:
The Childrens Hospital Boston Model. Augmentative and Alternative Communication 16; 137-153. Dikeman, K.J., & Kazandjian, M.S. (1995) Communication and Swallowing Management of Tracheostomised and Ventilator Dependent Adults. Singular Publishing Group; San Diego. Granberg, A., Bergbom Engberg, I. & Lundberg, D. (1999) Acute confusion and unreal experiences in intensive care patients in relation to the ICU syndrome. Part 2. Intensive and Critical Care Nursing 15; 19-33. Hafsteindottir, T.B. (1996) Patients experiences of communication during the respirator treatment period. Intensive and Critical Care Nursing 12; 261-271. Mitsuda, P.M., Baarslag-Benson, R., Hazel, K. & Therriault, T.M. (1992) Augmentative communication in intensive and acute care unit settings. In: Yorkston, K.M. (ed.) Augmentative Communication in the Medical Setting. Communication Skill Builders:Tucson. Russell, S. (1999) An exploratory study of patients perceptions, memories and experiences of an intensive care unit. Journal of Advanced Nursing 29 (4); 783-791. Stovsky, B., Rudy, E. & Dragonette, P. (1988) Caring for mechanically ventilated patients. Comparison of two types of communication methods after cardiac surgery with patients with endotracheal tubes. Heart and Lung 17; 281-289.

Reflections
Do I have a can do attitude to my work? Do I ask for expert or specialised advice when necessary? Do I adapt recommendations and resources until they meet the needs of those using them?

Note: All photos posed by author.

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2002