VEGETATIVE STATE - Evaluation, Management & Prognosis Dr Keith Andrews

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

2. Vegetative State Nomenclature/Definitions • Prolonged coma • Coma vigile • Parasomnia • Akinetic mutism • Apallic syndrome • Decerebrate dementia

3. Recovery Continuum Coma . Vegetative State Minimal Conscious State ‘Cognitive Impaired States’ ‘Normal’

4. DIAGNOSISThe (Persistent) Vegetative State

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

6. Problematic Presentations • Grasp Reflex • Swallowing • Chewing & Tongue Pumping/Thrusting • Bruxism • Grunts & Groans • Smiles & Frowns • Relaxation Response

7. Minimally Conscious State

8. 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. MCS - Reproducibility • Consistency of Response • Complexity of Response

10. 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. 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. 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. Other Conditions • Coma • (Brain [Stem] Death) • Locked-in- Syndrome

14. Differential Diagnosis (1)

15. Differential Diagnosis (2)

16. Differential Diagnosis (3)

17. 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. Outcome - Referrered as VS (n=40) 43% 33% 25% N=40

19. Misdiagnosis - Outcome

20. Misdiagnosis - Characterisitics 100% 65%

21. Causes of Misdiagnosis • Too ill • Fatigue • Missed windows of opportunity • Physical disability/Poor positioning • Blind • Inexperience of observer • Too short an assessment period

22. THE VEGETATIVE PATIENT Management

23. Disability Management Recovery Deterioration

24. Inter-disciplinary Team OT Physio SALT Music Therapist Nurse Social Worker Patient Family Doctor Psychol Oral Hygienist Dietician Clinical Engin Dentist

25. Principles of Rehabilitation • Prevent secondary complications • Provide environment for recovery • Treatment • Modify the patient • Modify the environment • Support the family • Change Society

26. The Vegetative Patient • Physically dependent • Complex neurological complications • Cognitively impaired • Medically vulnerable • Family in crisis

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

28. Health Management • Nutrition • Posture & positioning • Spasticity • Bowel function • Bladder function • Tracheostomy

29. Recovery - Opportunities • Nutritional state • Good positioning • General health • Control of medication • Sensory regulation

30. COGNITIVE ASSESSMENT

31. Sensory Regulation • Controllable environment • Staff awareness • Family awareness • Specialist knowledge • Equipment

32. Vision Hearing Smell Taste Touch + Arousal None Reflex Withdrawal Localisation Differentiating Sensory Assessment .

33. Method of Showing Awareness • Eye blink • Move finger • Hand thrust • Knee or foot movement • Shrug shoulder • Head turn

34. Assessment - Basic Requirements • Good nutritional state • Good health • Seated with good posture • At least some muscle movement

35. Communication - Optimal Conditions • After rest period • Windows of opportunity • Short sessions • Repeated • Over period of time

36. Factors Affecting Assessment • Physical ability to respond • Desire/willingness to respond • Ability to observe accurately • Time available for observation/assessment • Reliable assessment tools

37. FAMILIES , CARERS OR SIGNIFICANT OTHERS

38. Support Patient/Family • Information • Involvement • Counselling • Welfare information • Ward based support groups • Peer support • National groups

39. Family effect on outcome? • Anxiety • Guilt • Wishful thinking • Anger • Expectations v Reality

40. Expectations v Reality Expectations Reality

41. Expectations v Reality Expectations Reality

42. Expectations v Reality Expectations Reality

43. Expectations v Reality Expectations Reality

44. What is reality?

45. WHY BOTHER?

46. Why Bother? • Diagnosis and Misdiagnosis • Recovery v optimal maintenance • Long term requirements/ benefits • Cost to state • Cost to family

47. VEGETATIVE STATE The End (or The Beginning?)