Table 3 Inner contradictory feelings/thoughts told by the participants of the MD

1. Vision on VS/UWS

Professional

The physiotherapist tells he sees some muscular contractions which he interprets as pain perception while the same patient shows no reactions when administered intramuscular injections

2. Treatment and care plan;

Family

The families when asked declare they would not want this situation for themselves, then life should be ended, yet they wish all possible treatment for their relative

Family

Mother expresses that she thinks her son would not have wanted this situation in VS/UWS, nevertheless she demands life-prolonging treatment

family

Expectations and hope for the future: The wife told she knew her husband was unable to regain consciousness, but she demanded physiotherapy for him in order to be able to use his hands when needed

3. Impact on relationships

Family

The mother does not want her son to survive them but on the same time demands life-sustaining treatments

Family

The father says: “This is a fate worse than death but I cannot let him go.”

Family

“If consciousness is shown, we have failed in giving the right treatment, activities and leisure. If not.. he is still our son.”

4. Feelings/attitude

Family

Despite the expressed problems with daily care the family expresses they have trust in the nurses

Family

The wife simultaneously mentions expectations of hope and despair

Professional

One of the nurses tenderly taking care of the patient since 20 years, expressed “In case of an FMRI investigation, I hope they will not see any sign of consciousness; I cannot imagine what it would be like to live this way for more than 20 years….. if only a fraction of experience would enter the brain, so more reason to stop this situation.”