Table 2

Categorical analysis of the representation of the patient's wishes in interviews with family caregivers

Form of representationWishTendency of wish
Written advance directiveNo artificial nutrition and hydration (P. 3)Refusal of life sustaining treatment
No enduring life sustaining treatment, if a ‘normal’ life isn't possible (P. 1)
No tubes (P. 9)
Anticipatory oral statementsNo life-prolonging treatment (P. 6)
No tubes when I'm in a VS (P. 7)
No life in a wheelchair (P. 10)
No life-prolonging treatment in a condition like after a stroke (P. 11)
Presumed will based on the patient's prior identityShe wouldn't have wanted to live like this (P. 8)
He wouldn't have been able to deal with illness or disability (P. 12)
If she could kill herself for example, jump from a bridge, she would do it (P. 11)
Presumed will based on the patient's survivalHe is a ‘fighter’ because he survived a crisis (eg, a sepsis) (P. 4; P. 6)Ongoing will to live
He is not dissatisfied with his situation, otherwise his condition would deteriorate (P. 9)
He decides himself: If he wants to die he will just die (P. 4; P. 9)
Presumed will based on the patient's current behaviourShe gives ‘signs’ (eg, open eyes) that she wants to live (P. 2a)
Through participation in physiotherapy she shows her will to live (P. 3a)
He wants to live because he participates in the care process and reacts to appeal (P. 5)
  • The type of representation of the patient's wish, the content of the wish and the tendency for or against life sustaining treatment are shown. The numbers mark the interview participants (not the patients).

  • VS, vegetative state.