Skip to main content

Table 1 Domains and aspects of the SOS-V

From: Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V

Domains Aspects
I. Medical signs and symptoms General: 1: General discomfort (feeling miserable, feeling unwell) 2: Tired 3: Weakened 4: Not sleeping well 5: Pain 6: Loss of appetite 7: Thirst
8: Smelling unpleasant 9: Changed appearance
Psychological: 10: Impaired clarity of thought 11: Loss of concentration 12: Memory loss 13: Feeling tense 14: Feeling depressed 15: Feeling anxious.
Respiratory tract: 16: Shortness of breath 17: Coughing
Gastrointestinal tract and urinary tract: 18: Swallowing and oesophageal passage obstructed for food 19: Swallowing and oesophageal passage obstructed for fluids 20: Nausea 21: Vomiting 22: Constipation
23: Diarrhoea 24: Intestinal cramps 25: Incontinence of urine
26: Incontinence of faeces 27: Hiccups
Skin: 28: Pressure ulcers 29: Itch 30: Skin metastasis
Nervous and loco-motor system: 31: Paralyzed limbs 32: Impaired
co-ordination of movements 33: Incomprehensible speech 34: Impaired comprehension of speech 35: Dizziness 36: Impaired sight 37: Impaired hearing
II. Loss of function 38: Impaired working capacity 39: Impaired performance of routine daily activities 40: Impaired leisure activities 41: Help needed with housekeeping (shopping, cleaning the house) 42: Help needed with self-care (washing, dressing, eating, visit to the bathroom) 43: Bedridden 44: Restricted sexuality
III. Personal aspects Self-appraisal: 45: Not satisfied with your own self (with who you are as a person) 46: Lived a life with little purpose 47: Experienced little success in life 48: Experienced little happiness with family, partner for life and/or friends 49: Trouble accepting present situation 50: Negative thoughts or worrying 51: Feelings of guilt 52: Feelings of worthlessness 53: Feelings of loneliness 54: Feelings of hopelessness 55: Feelings of not any longer being the same person 56: Feeling tired of life
Experience of loss of independence: 57:Feeling dependant on others
58: Feeling loss of control over your own life 59: Feeling of being a nuisance to others
Experience of future perspective: 60: Feeling of no longer being of importance to others in the remaining time 61: Feeling no longer able to do the things you consider important in the remaining time
IV. Aspects of social environment Relationship with family and friends: 62:Feeling insufficiently supported by family, friends and those nearby 63: Feeling lonely because the most important people in your life are not there for you 64: Feelings of shame 65: Experiencing that those who are near by consider your suffering too severe
Communication: 66: Unsatisfactory contact with family, friends and those who are near by
Aspects of care: 67: Insufficient availability of care.
V. Nature and prognosis of disease 68: Fear of future suffering 69: Fear of not any longer having the strength to bear the suffering
Missing aspects 70: Mention any aspects missing, and score correspondingly
Total score 71: How severe is your suffering overall? 72: How unbearable is your suffering overall? 73: How hopeless is your suffering overall?
Additional questions Four open ended questions (see appendix: the complete instrument)