HOW I

How I manage acquired brain injury (2):

The local dimension

Laura Flynn reflects on the challenges and rewards of providing the best possible service to a minimally conscious patient in the intensive care unit of a local hospital pending transfer to a specialist facility.

hen Suzannah Pemberton was 20, she suffered a severe head injury as the result of a rollerblading accident. After surgery she spent 18 weeks in our local Intensive Care Unit (ICU) before transferring to a specialist unit. Caring for Suzannah was a valuable experience for us all, and led to us developing links with and learning from a specialist team. This article reflects on the options available to our multidisciplinary team and the decisions we made. I hope it may benefit other local teams who face similar challenges in establishing baselines and forming initial hypotheses before their clients are discharged to specialist units. The incidence of severe brain injury in the UK is approximately 8 per 100,000 of the population (Andrews, 2001), and is thought to be increasing given advances in medicine and survival rates. ICUs care for patients whose conditions are so life-threatening they need constant close monitoring and support from equipment to avoid organ failure. Severely brain injured patients are likely to require level 3 care initially, which is advanced respiratory support alone or basic respiratory support together with support for at least two organs. Although numbers remain small, local hospital ICUs are therefore likely to face an increase in admissions of vegetative or minimally conscious patients who require highly specialist care and early rehabilitation for improved outcomes (Elliott & Walker, 2005). Local hospitals may not have the level of expertise or staffing to provide intensive specialist programmes before patients can be transferred to regional specialist units as recommended by NICE (2003). Following her accident, Suzannah was initially transferred to a regional neurological centre for emergency brain surgery. She returned sedated and ventilated to our ICU two weeks later when she was medically stable. She remained in a likely persistent vegetative state for approximately nine weeks and was additionally suffering paroxysmal autonomic instability. (Clinical manifestations of this include a temperature of 38.5 C, hypertension, a pulse rate of at least 130 beats per minute, a respiratory rate of at least 140 breaths per minute and intermittent agitation.) Suzannah was referred to speech and language therapy 10 weeks post injury for

advice regarding cuff deflation, swallowing and communication. She was managed by the local service for a further 10 weeks before being transferred to a specialist unit once she was medically stable and funding had been secured. On referral, Suzannah appeared to track to voice and moving environmental stimuli. She was in definite sleep wake cycles. Some inconsistent purposeful motor behaviour had been observed. As a multidisciplinary team we felt we could discriminate these movements from reflexive responses, which may suggest Suzannah was emerging into a minimally conscious state, but we needed objective evidence.

1. Communication

The Royal College of Physicians (2003) state that differential diagnosis of minimally conscious state from persistent vegetative state can be made if a patient demonstrates awareness, responds to noxious stimuli, localises pain and demonstrates some consistent or inconsistent verbal or purposeful motor behaviour (p.6). These responses must be distinguishable from reflexive behaviour. The literature supports the use of formalised programmes to establish responses and consequently form an accurate diagnosis (Giacino et al. 2002). The Sensory Modality & Assessment Rehabilitation Technique (SMART) (Gill-Thwaites & Munday, 2001) examines the response of a patient in a persistent vegetative or minimally conscious state to a sensory programme including vision, hearing, taste, touch and smell. Two therapy staff had undertaken training and used SMART previously, and it is also used at the specialist unit where Suzannah was later discharged. Because of limited resources, the team was unable to offer the daily sessions a specialist unit would provide. We therefore developed a simplified assessment programme based on the principles of SMART with observation forms kept in the nursing notes at Suzannahs bedside. These were completed by members of the team and her family. We graded responses from 1-5 as outlined in SMART (1 being no response to 5 a differentiating response such as following auditory or visual commands), and repeated the same measures during each planned team

session to observe for consistent responses. Our observation forms are downloadable from the members area of www.speechmag.com. Suzannahs responses to sensory stimuli were inconsistent across sessions. For example, she would inconsistently look towards the controlled sounds presented and to voice (SMART level 3 and 4), and she appeared to dislike the taste stimuli (change in facial expression), possibly secondary to being hypersensitive. There were no obvious responses to the controlled visual or olfactory stimuli. She did, however, appear to respond to familiar people by staring at them more intently (SMART level 4). She moved her leg and head to command but did not repeat these movements consistently across the sessions. No consistent yes/no response was established at this time. This all meant that Suzannah fitted the criteria for a diagnosis of minimally conscious state (Royal College of Physicians, 2003; Giacino et al., 2002). The team, however, acknowledged that the intensity of assessment was much less than that used in SMART, making it difficult to draw firm conclusions.

2. Dysphagia and tracheostomy management

On referral Suzannah was nil by mouth and fed via a percutaneous endoscopic gastrostomy (PEG). She had a 7.5mm portex unfenestrated cuffed tracheostomy tube in situ. Her sedation was being reduced and she was no longer ventilated; at this point she was unable to manage secretions and required frequent suctioning. The teams management of Suzannahs tracheostomy followed the graded approach recommended across the literature (for example Frank et al., 2007). The Intensive Care Society (2008) states that a longer wean is expected from patients with neurological deficits, and recommends working with cuff deflation as the safest option. During the first session, Suzannah tolerated cuff deflation for up to 15 minutes. The medical and multidisciplinary team agreed to trial longer periods of deflation over the next ten weeks (eventually up to 24 hours cuff deflation). This helped to promote sensation and encouraged dry swallows, although

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HOW I

READ THIS IF YOU WANT TO OFFER THE BEST SERVICE THAT CIRCUMSTANCES ALLOW MAKE DECISIONS BASED ON EVIDENCE UNDERSTAND YOUR CONTRIBUTION TO LONG-TERM OUTCOMES episodes of paroxysmal autonomic instability caused delays in the process. During cuff deflation Suzannah achieved some voice with the speech and language therapist using digital finger occlusion to normalise the airflow. In the following session the inner cannula was changed to fenestrated to allow for maximum air to pass supraglotically, and a Passy Muir speaking valve was trialled. We could now assess laryngeal competencies. Involuntary voice was achieved, mainly crying, with some pitch variation noted, but no phonation to command. Achieving vocal cord closure indicated that airway protection for swallowing was possibly intact, and Suzannah spontaneously gave a strong cough when suctioned by the physiotherapist. Given evidence of laryngeal competencies and tolerance for periods of cuff deflation we felt it was appropriate to commence oral trials. Logemann (1998) details the advantages to swallowing trials and therapy while the tracheostomy is in situ because aspiration can be observed more directly, and the team has the ability to easily suction (p.164). On bedside assessment Suzannah was unable to achieve oro-motor movements to command. At this stage it was difficult to confirm whether this was secondary to a language or cognitive impairment, apraxia, or anarthria. It was hard to gain evidence of lip, tongue or palatal movements. Spontaneous oro-motor movements included a degree of ability to open her mouth when she cried. She triggered spontaneous dry swallows. She required regular suctioning of oral secretions and deep suctioning below her tracheostomy. She would cough reflexively to clear secretions but was unable to cough voluntarily to command. Suzannah appeared hypersensitive; she was biting her lips severely, had an abnormal bite reflex to oral hygiene procedures and appeared to react negatively to facial touch, particularly of the lower half. The literature indicates people with severe head injuries often experience hypersensitivity (Logemann, 1998). We wanted to get objective information on the pharyngeal stage of Suzannahs swallow (RCSLT, 2005). Sherlock (2007) says that FEES is a useful tool for assessment of swallowing in ICU, but we did not have access to it. Videofluoroscopy was available, and a small study by ONeil-Pirozzi et al. (2003) supports its use with this population. However, it was not indicated at this point because it was so difficult for Suzannah to open her mouth and control a bolus. Physical positioning in

In memory of Zannah

Suzannah Pemberton died in February 2009, three years after a severe head injury. The Zannah Pemberton Gaze Control Project was set up by her parents in her memory to enable other people with severe disabilities in Jersey to trial gaze controlled technology for personal, email and text communication as well as surfing the internet and controlling the environment. The two year project in association with Dr Mick Donegan began in September 2010 and includes vital specialist training and support for carers and local professionals.

the radiography suite would also have been challenging due to her hyperextension. In the absence of empirically supported assessments, we used the Modified Evans Blue Dye Test along with cervical auscultation and pulse oximetry. The controversy in the research over the reliability and validity of these approaches (see for example ONeilPirozzi et al., 2003; Leslie et al., 2007) meant we had to be cautious in our interpretation of the results, particularly as they were not clear-cut. The physiotherapist monitored Suzannahs chest sounds using bronchial auscultation during the Modified Evans Blue Dye Test. Shaw et al. (2004) found this approach to be 88 per cent accurate in confirming the absence of aspiration. There was no change, but we were aware this did not take account of potentially delayed aspiration or the effect of fatigue if further boluses were given. The results of the Modified Evans Blue Dye Test, bronchial auscultation and monitoring of pulse oximetry might indicate that Suzannah had not aspirated. However, given her severe oro-pharyngeal impairment at bedside assessment, difficulties with secretion management, abnormal bite reflex, changes in breath sounds on cervical auscultation post swallow, change in voice quality post swallow, inability to cough to command to clear any possible aspirated or penetrated

materials, low awareness levels and inability to follow commands, we hypothesised that she presented as a high aspiration risk and that oral trials were not safe at this time. Suzannahs initial portex size 7.5 unfenestrated cuffed tracheostomy was downsized to a portex size 4.0 uncuffed fenestrated tracheostomy before her discharge to the specialist unit. This downsizing reduced the chances of stenosis, the speaking valve allowed for voice, and it commenced the weaning from the tracheostomy.

3. Therapy

RCSLT (2005) state that oral hypersensitivity should be treated as part of dysphagia management. We chose Facial Oral Tract Therapy (FOTT) (Coombes, date not stated; Davies, 1994) as the clinical intervention because it can be used with patients in low levels of consciousness who would not be able to engage in postures, manoeuvres or exercises. I hypothesised that FOTT may contribute to desensitisation, promote oral movements and stimulate sensation by introducing taste. Although the research is limited, it may also contribute to reducing time to decannulation and promote functional long term oral intake in patients with traumatic brain injury (Hansen et al., 2008; Frank et al., 2007).

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HOW I
FOTT can be administered alongside SMART because FOTT involves repeated activity and reactions can be monitored. The goals we set were i. de-sensitisation of the lower half of Suzannahs face ii. improved oral movements. Our FOTT programme was guided by the specialist unit. It involved facial massage, supported mouth and jaw opening, passive tongue movement, oral hygiene, introducing items in gauze, and tastes. We used the observation sheets to monitor progress, and saw the intensity of Suzannahs bite reflex during oral hygiene and the frequency of negative responses to facial touch reduce.
Phys Med Rehabil 89(8), pp.1556-1562. Leslie, P., Drinnan, M.J., Zammit-Maempel, I., Coyle, J.L., Ford, G.A. & Wilson, J.A. (2007) Cervical auscultation synchronized with images from endoscopy swallow evaluations, Dysphagia 22(4), pp.290-298. Logemann, J.A. (1998) Evaluation and Treatment of Swallowing Disorders. 2nd edn. Austin, TX: PRO-ED. NICE (2003) Clinical Guideline 56 - Head Injury. Latest update available at: http://www.nice.org.uk/CG56. (Accessed: 6 July 2011). ONeil-Pirozzi, T.M., Lisiecki, D.J., Jack Momose, K., Connors, J.J. & Milliner, M.P. (2003) Simultaneous modified barium swallow and blue dye tests: A determination of the accuracy of blue dye test aspiration findings, Dysphagia 18(1), pp.32-38. Royal College of Physicians (2003) The Vegetative State. London: RCP. Royal College of Speech and Language Therapists (2005) RCSLT Clinical Guidelines. London: RCSLT. Shaw, J.L., Sharpe, S., Dyson, S.E., Pownall, S., Walters, S., Saul, C., Enderby, P., Healy, K. & OSullivan, H. (2004) Bronchial auscultation: An effective adjunct to speech and language therapy bedside assessment when detecting dysphagia and aspiration?, Dysphagia 19(4), pp.211-218. Sherlock, Z. (2007) The use of instrumental swallow assessment in critical care, RCSLT Bulletin Feb, p16. The Intensive Care Society (2008) Standards for the care of adult patients with a temporary tracheostomy. Available at: http://www.ics.ac.uk/intensive_ care_professional/standards_and_guidelines/ care_of_the_adult_patient_with_a_temporary_ tracheostomy_2008 (Accessed 6 July 2011). Resource Tracheostomy and tube choices - http://www. patient.co.uk/doctor/Tracheostomy.htm

4. Long term outcomes

Suzannah was transferred to a specialist unit at 20 weeks post injury and remained there for 12 months. Here she moved into a fully conscious state, and a reliable yes / no was quickly established. Oral trials of food and diet were not commenced on a daily basis until approximately 9 months post injury and the tracheostomy wean was slow and decannulation complicated. During this period the team kept in touch with monthly updates, which helped us reflect on treatment options and time commitments. Suzannah was not fully weaned until approximately 11 months post injury. She was diagnosed with anarthria and remained dependent on low tech AAC and high tech AAC (via a my tobbii eye gaze.)

Laura Flynn is a lead speech and language therapist at the Jersey General Hospital, St Helier, Jersey, email L.Flynn@health.gov.je.

5. Reflection

The approach followed by our team was guided by the literature on managing patients with dysphagia, and national guidelines on the management of a patient in ICU emerging from a vegetative state. It was also guided by informal input from a specialist unit via the telephone. We have the relative advantage of being a small, well-gelled team with consistent staffing, and this is important when working with patients with neurodisability. We were also fortunate to have a local speech and language therapist who had worked on a brain injury unit in the UK, as well as members of the multidisciplinary team trained in SMART. However, maintaining skills is an issue given the limited numbers of such admissions. In addition, medication must be managed optimally for patients in low awareness states to rule out any adverse affects on arousal. This may be difficult for local medical teams who do not specialise with such complex patients. We had difficulty adhering to the intensity of involvement required, which limits the outcome and raises the question of how confident we were in the diagnosis. Fortunately, liaising closely with the specialist unit meant access to expert advice and guidance. Overall, Suzannahs outcomes from intervention at the local ICU were positive, as the tracheostomy wean was commenced and baselines were established with respect to swallowing and communication before her transfer. Her case shows why it is important to have a degree of knowledge at local level and

also the invaluable role for specialist units in supporting local teams. On reflection, an earlier referral to speech and language therapy would have been of benefit for Suzannah in terms of working with her family and commencing the SMART observations as early as possible. Since this case, referrals have become more timely. Suzannahs condition is rare, but clearly some skills I learnt are transferable, such as close observation with respect to communication and dysphagia assessment. I gained increased confidence in understanding and using SMART techniques, both for intervention and observing exact repeated measures, and have been far more confident with subsequent clients. SLTP
References Andrews, K. (2001) Memorandum to Parliament. Available at: http://www.publications.parliament. uk/pa/cm200001/cmselect/cmhealth/307/1031508. htm (Accessed 6 July 2011). Coombes, K. (not stated) Facial Oral Tract Therapy. http://www.arcos.org.uk/index.php?option=com_ content&view=article&id=60&Itemid=66 (Accessed 6 July 2011). Davies, P. (1994) Starting Again: Early Rehabilitation After Traumatic Brain Injury or Other Severe Brain Lesion. New York: Springer. Elliott, L. & Walker, L. (2005) Rehabilitation interventions for vegetative and minimally conscious patients, Neuropsychological Rehabilitation 15(3-4), pp.480-493. Frank, U., Mader, M. & Sticher, H. (2007) Dysphagic patients with tracheotomies: a multidisciplinary approach to treatment and decannulation management, Dysphagia 22(1), pp.20-29. Giacino, J.T., Ashwal, S., Childs, N., Cranford, R., Jennett, B., Katz, D.I., Kelly, J.P., Rosenberg, J.H., Whyte, J., Zafonte, R.D. & Zasler N.D. (2002) The minimally conscious state - definition and diagnostic criteria, Neurology 58(3), pp.349-353. Gill-Thwaites H. and Munday R. (2001) Sensory Modality Assessment and Rehabilitation Technique. London: Royal Hospital for Neuro-disability. Hansen, T.S., Engberg, A.W. & Larsen, K. (2008) Functional oral intake and time to reach unrestricted dieting for patients with traumatic brain injury, Arch

Learning Points for local teams 1. Look for the specialist skills you already have within your team. 2. Be prepared to re-prioritise your workload to give complex patients more of your time. 3. Contact specialist centres and explain what you do or dont know. Build a relationship with these teams early on. 4. Encourage early referral for complex cases; even if a patient is heavily sedated you can build relationships with their families. 5. Dont be frightened to adapt assessment or therapy into what is manageable for your team. All baseline information is helpful for the receiving specialist centres, even if it has not followed the intensity or depth to the letter.
What impact has this article had on you? Please see the information about Speech & Language Therapy in Practices Critical Friends at www.speechmag.com/Friends and let us know.

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Appendix 1: Example of staff and family recording forms (kept at end of bed)

Name of person completing form: Professional (state which): Family/Friend:

Extension Voicing Change in breathing Biting lip Leg or arm movement

Date

Time

STIMULI

RESPONSE Looks towards noise

Looks L/R

Change in facial expression

Other

(People entering env)

Enter bed area Call patients name Ask patient to look at (voice from target Ask patient to look at (no voice from target) Other Suctioning Touch/wash face Bed bath and bed change Cleaning teeth Hair brushing Other Having bloods taken Other Moving arm Moving leg Massage feet Massage back Bed up Bed down Other Music on Music off TV on TV off Fan on Fan off Noise on ward (please state) Other Excretion Menstruation Other

(Personal Care)

(Medical procedures) (Passive movements)

(Environmental changes)

(bodily functions)

Flynn, L. (2011) How I manage acquired brain injury (2): The local dimension, Speech & Language Therapy in Practice Autumn, pp.30-32.

www.speechmag.com - accompanies Flynn, L. (2011) 'How I manage acquired brain injury (2): The local dimension', Speech & Language Therapy in Practice, Autumn, pp.30-32

Appendix 2: S&LT Session Recording Forms (based on SMART)1

Date: Time: Ward: Persons present: Patient positioning in bed:

Modality assessed Wakefulness/arousal Visual

SMART technique

Response

Smart Level 1-5

Auditory

Tactile

Olfactory Taste Motor Function Functional Communication Other

Response to light Focus on visual stimuli (e.g. photographs, light, SMART colour cards) Visual tracking (person, object) Following a written instruction Response to sound (e.g. buzzer, turning a fan on/off, a clap) Response to voice Response to name Following a verbal instruction Response to light tactile stimuli Response to FOTT (explain procedure) Response to Physio/OT passive movement Response to different smell Response to different taste Response to movement of limbs (within Physio or OT) Providing/establishing a yes/no response Response to tracheostomy management (e.g. cuff deflation, use of speaking valve) Response to dysphagia assessment (e.g. blue dye test)

Examples of possible responses: Visual: eye opening/closing, eye contact, visual tracking, visual discrimination, comprehension of visual command Auditory: turning towards or away from sound, blinking, comprehension of command Tactile: Flexion or extension to stimulus, movement away or towards stimulus Taste/smell: reflexive response, movement away or towards stimulus Motor response: reflexive movement, non purposeful, withdrawal, purposeful/functional movement, movement to command Functional Communication Response: Non-specific vocalisation, gesture/change in facial expression, motor yes/no response, visual discrimination of yes/no, verbal yes/no SMART Levels 1 -5 1 No response 2 Reflexive response - to stimulus, reflexive and generalised responses 3 Withdrawal response in response to stimulus 4 Localising response in response to stimulus 5 Differentiating response e.g. may follow auditory or visual commands
1

Gill-Thwaites H & Munday R (2001): Sensory Modality Assessment and Rehabilitation Technique. Royal Hospital for Neuro-disability