Table 2 Summary of open interview (N = 24)

1. How is your current living situation?

Three patients said that they are able to cope with their respective living conditions

Twenty-one patients felt lousy, stressed and massively impaired. Emotions such as anxiety and sadness, and feelings of being dependent and waiting for death were frequently reported

2. How would you assess your quality of life? What makes your life worth living?

Seventeen patients emphasized that despite their reduced quality of life, the deep relationship with family members and (to a lesser extent) friends, nevertheless, made life worth living. Among these patients, two had the hope of eventually becoming weaned and healed, respectively

Seven patients reported a severely reduced quality of life with nothing available to make it worth living again

3. What are your wishes regarding the treatment of your disease. What are the unresolved problems?

Fourteen patients had wishes that related to their treatment: better ability to speak (N = 1), less pain (N = 2), no further disease progression (N = 1), lung transplantation (N = 1), definitive weaning (N = 2), more awareness (N = 2), technical advances aimed at healing (N = 5)

Ten patients had no wishes relating to their treatment

4. What are your wishes regarding your ventilation therapy? How could this potentially be improved?

Fourteen patients had wishes that related to potential improvements in ventilation therapy: Switching to NIV (N = 1), less dyspnoea (N = 1), no further admissions to hospital (N = 2), longer periods of spontaneous breathing (N = 5), definitive weaning (N = 5)

Ten patients had no wishes relating to potential improvements in ventilation therapy

5. What do you think about dying and death?

Seventeen patients did think about dying and their own death: two patients expressed the wish to die, seven patients had a fear of dying/suffering during dying, and eight patients had no fear of dying

Seven patients thought neither about dying, nor their own death

6. Do you believe in an afterlife? What do you think is going to happen after you die?

Eleven patients believed in an afterlife: two patients had no idea how life after death would be, and nine patients had hopes (being with family members, being free, an eternal life, transmigration of souls, resurrection, being a spirit)

Thirteen patients did not believe in an afterlife