1. VS - Evaluation, Management, Prognosis VEGETATIVE STATE - Evaluation, Management & Prognosis Dr Keith Andrews Royal Hospital for Neuro-disability, London, UK

2. VS - Evaluation, Management, Prognosis Vegetative State Nomenclature/Definitions Prolonged coma Coma vigile Parasomnia Akinetic mutism Apallic syndrome Decerebrate dementia

3. VS - Evaluation, Management, Prognosis Recovery Continuum Coma Vegetative State Minimal Conscious State ‘Cognitive Impaired States’ ‘Normal’.

4. VS - Evaluation, Management, Prognosis DIAGNOSIS The (Persistent) Vegetative State

5. VS - Evaluation, Management, Prognosis Breathing spontaneously Sleep-awake pattern Reflex responses to stimulation No ‘meaningful’ response Clinical Features of VS

6. VS - Evaluation, Management, Prognosis Problematic Presentations Grasp Reflex Swallowing Chewing & Tongue Pumping/Thrusting Bruxism Grunts & Groans Smiles & Frowns Relaxation Response

7. VS - Evaluation, Management, Prognosis Minimally Conscious State

8. VS - Evaluation, Management, Prognosis Minimally Conscious State “ Severely altered consciousness in which the patient does not meet the criteria for coma or the vegetative state because there is inconsistent but reproducible or sustained behavioural evidence of self or environmental awareness” Aspen WP 2001

9. VS - Evaluation, Management, Prognosis MCS - Reproducibility Consistency of Response Complexity of Response

10. VS - Evaluation, Management, Prognosis MCS- Complexity v Consistency The simpler the response (e.g. eye blink, finger movement) the higher the frequency required. The more complex the response (e.g. saying a few words) the lower the frequency required.

11. VS - Evaluation, Management, Prognosis MCS - Diagnostic Responses Simple command following Gestural or verbal ‘yes’/’no’ responses (regardless of accuracy) Purposeful behaviour including movements or affective behaviours contingent to relevant stimulation.

12. VS - Evaluation, Management, Prognosis MCS - Purposeful Behaviour Appropriate smiling/crying to linguistic/ visual emotional but not neutral topics. Vocalisation/gestures in direct response to content of question Reaching for object - demonstrating location and direction of reach Touching/holding objects -recognition of size and shape Eye pursuit/sustained fixation

13. VS - Evaluation, Management, Prognosis Other Conditions Coma (Brain [Stem] Death) Locked-in- Syndrome

14. VS - Evaluation, Management, Prognosis Differential Diagnosis (1)

15. VS - Evaluation, Management, Prognosis Differential Diagnosis (2)

16. VS - Evaluation, Management, Prognosis Differential Diagnosis (3)

17. VS - Evaluation, Management, Prognosis Misdiagnosis of VS Tresch et al (1991) 18% of long term patients diagnosed as PVS Childs et al (1993) 37% admitted to rehabilitation unit. Andrews et al (1996) 43% admitted with a diagnosis of VS for longer than 6 months.

18. VS - Evaluation, Management, Prognosis Outcome - Referrered as VS 25% 33% 43% (n=40) N=40

19. VS - Evaluation, Management, Prognosis Misdiagnosis - Outcome

20. VS - Evaluation, Management, Prognosis Misdiagnosis - Characterisitics 100% 65%

21. VS - Evaluation, Management, Prognosis Causes of Misdiagnosis Too ill Fatigue Missed windows of opportunity Physical disability/Poor positioning Blind Inexperience of observer Too short an assessment period

22. VS - Evaluation, Management, Prognosis THE VEGETATIVE PATIENT Management

23. VS - Evaluation, Management, Prognosis Disability Management Recovery Deterioration

24. VS - Evaluation, Management, Prognosis Inter-disciplinary Team PatientFamily Doctor Nurse Physio OT SALT Music Therapist Social Worker Psychol Dietician Oral Hygienist Clinical Engin Dentist

25. VS - Evaluation, Management, Prognosis Principles of Rehabilitation Prevent secondary complications Provide environment for recovery Treatment Modify the patient Modify the environment Support the family Change Society

26. VS - Evaluation, Management, Prognosis The Vegetative Patient Physically dependent Complex neurological complications Cognitively impaired Medically vulnerable Family in crisis

27. VS - Evaluation, Management, Prognosis Medical Needs Epilepsy Fluid & electrolyte balance Infections (UTI & RTI) Respiratory function Drug control of spasticity Stimulants Systems control - e.g. diabetes

28. VS - Evaluation, Management, Prognosis Health Management Nutrition Posture & positioning Spasticity Bowel function Bladder function Tracheostomy

29. VS - Evaluation, Management, Prognosis Recovery - Opportunities Nutritional state Good positioning General health Control of medication Sensory regulation

30. VS - Evaluation, Management, Prognosis COGNITIVE ASSESSMENT

31. VS - Evaluation, Management, Prognosis Sensory Regulation Controllable environment Staff awareness Family awareness Specialist knowledge Equipment

32. VS - Evaluation, Management, Prognosis Sensory Assessment Vision Hearing Smell Taste Touch + Arousal None Reflex Withdrawal Localisation Differentiating.

33. VS - Evaluation, Management, Prognosis Method of Showing Awareness Eye blink Move finger Hand thrust Knee or foot movement Shrug shoulder Head turn

34. VS - Evaluation, Management, Prognosis Assessment - Basic Requirements Good nutritional state Good health Seated with good posture At least some muscle movement

35. VS - Evaluation, Management, Prognosis Communication - Optimal Conditions After rest period Windows of opportunity Short sessions Repeated Over period of time

36. VS - Evaluation, Management, Prognosis Factors Affecting Assessment Physical ability to respond Desire/willingness to respond Ability to observe accurately Time available for observation/assessment Reliable assessment tools

37. VS - Evaluation, Management, Prognosis FAMILIES, CARERS OR SIGNIFICANT OTHERS

38. VS - Evaluation, Management, Prognosis Support Patient/Family Information Involvement Counselling Welfare information Ward based support groups Peer support National groups

39. VS - Evaluation, Management, Prognosis Family effect on outcome? Anxiety Guilt Wishful thinking Anger Expectations v Reality

40. VS - Evaluation, Management, Prognosis Expectations v Reality RealityExpectations

41. VS - Evaluation, Management, Prognosis Expectations v Reality Reality Expectations

42. VS - Evaluation, Management, Prognosis Expectations v Reality Reality Expectations

43. VS - Evaluation, Management, Prognosis Expectations v Reality Reality Expectations

44. VS - Evaluation, Management, Prognosis What is reality?

45. VS - Evaluation, Management, Prognosis WHY BOTHER?

46. VS - Evaluation, Management, Prognosis Why Bother? Diagnosis and Misdiagnosis Recovery v optimal maintenance Long term requirements/ benefits Cost to state Cost to family

47. VS - Evaluation, Management, Prognosis VEGETATIVE STATE The End (or The Beginning?)