eTable 2.
A Reasons given for the evaluation of validity | |||||
Residents, n | Senior physicians, n | Relatives, n | Examples | ||
Total | 43 | 35 | 13 | ||
State of health or likely prognosis | 30 | 30 | “Treatment aim exists”; “Currently comatose but is likely to awaken”; “Has infavorable prognosis” | ||
Advance directive unclearly worded | 12 | 5 | “What is a decent life?”; “Notarized, legally not bad, medically completely unworkable”; “What is severe, long-term damage?”; “What does “vitally important” mean?”; “It’s hard to define “incurable” here, too […] You can’t cure a stroke, but that doesn’t mean you can’t live with it.” | ||
Patient’s wishes in the situation in question cannot be inferred from advance directive | 5 | “I can’t tell you that. My husband’s been asleep since his surgery.”; “I can’t say, this is the first time this has happened to us”; “We don’t want to let her starve” | |||
Advance directive valid/invalid | 4 | “That definitely doesn’t apply”; “Been caring for him for seven years, wishes stated in advance directive” | |||
Hope and patience | 3 | “Hope, hope, hope […]” | |||
Inclined towards doctors’ opinion | 3 | “The doctors say things are moving in the right direction” | |||
B How helpful is the advance directive? | |||||
Residents, n | Senior physicians, n | Relatives, n | Examples | ||
Total | 44 | 38 | 16 | ||
Advance directive provides additional information | 17 | 4 | “This is important for the doctor, to read about the patient’s wishes in a situation like this” (RES); “OK, it’s a template. But because you see this kind of wording a lot, you know that ultimately he doesn’t want his life prolonged if there’s no more chance of recovery or there’s no more chance of making contact with the outside world and actively taking part in life” (SP) | ||
Advance directive gives binding instructions | 8 | 5 | 8 | “Because I’m not the only one who has to decide. If the situation arose, I’d know what he wanted” (REL); “[The advance directive] describes exactly the situation he’s in now and he’s said exactly what he wants” (SP) | |
Wording of advance directive too general or contradictory | 14 | 15 | “The wording’s too general. Advance directives don’t usually describe the situations that arise at the end of life” (SP); “Not very helpful, some of the wishes expressed contradict each other” (RES) | ||
Aids dignified death | 3 | “If there’s no chance any more that they can do anything, that this can be turned off” (REL) | |||
Puts decision in the hands of relatives | 3 | “If you’re alone, just like her at the moment, and didn’t have something like this, someone from the state would come along” (REL) | |||
Ambivalent due to difficult decisions | 3 | “Although I know he wouldn’t want to be kept hooked up to machines forever, he’s always said that, it’s still very difficult for me now to say it’s what he would have wanted” (REL) | |||
Other | 2 | 4 | Consensus with physicians required; patients do not understand the options they check in advance directives; relatives do not implement advance directive; advance directive is superfluous following surgery | ||
Not applicable | 6 | 12 | |||
C Should written patient wishes be implemented? | |||||
Residents, n | Senior physicians, n | Relatives, n | Examples | ||
Total | 13 | 10 | 4 | ||
No | 6 | 2 | “Advance directive not applicable”; “Tracheotomy will improve his quality of life” | ||
Yes | 2 | 7 | 2 | “No doubt”; “My personal opinion, but no consensus with relatives”; “Yes, but no consensus with doctors” | |
Sometimes/unsure | 5 | 1 | 2 | “Symptoms are controlled, for everything else wait until advance directive is applicable” (RES); “Advance directive unclear: what is life-sustaining?” (RES); “Unclearly worded” (SP); “First consult with doctors again—I don’t want to have him deliberately killed, either” | |
D Relatives on whether patients’ wishes were followed, 30 days later | |||||
Were the patients’ wishes followed? | Comments | ||||
Yes, completely | “Very satisfied […] Treatment decisions made well […]” | ||||
Yes, completely | “Belatedly, but yes. In the end I have to say it was all right. […] because so much has happened in the meantime […] So it was implemented correctly, I have to say” | ||||
Yes, completely | “We do still feel conflicted sometimes […] are we doing it right […]. And if I’d known how much was riding on it, I mean, absolutely everything was affected […] he’s changed hugely. Yes, it’s a turning point […] but he’s still alive. So yes, they were followed” | ||||
No | “Not really…what was written down wasn’t enough. […] because she said yes, if it comes to that, I’d prefer to die […] I could have lived with it if I’d said I wanted to assert her wishes like that, I wouldn’t have known anything about the other thing […] but you have to say, too, from the form there’s nothing you can criticize them [doctors] for, they have to cover themselves too […] so if this is not done she will die, but if it is, she won’t [referring to consent for craniectomy following cerebral hemorrhage]… also, my mother now [says] she’d want to be alive still […] [in the past] she’d have rejected that condition […] she can’t do anything for herself anymore” | ||||
Partly | “In her advance directive she refused life-sustaining measures and certainly didn’t note everything down that specifically […] I talked with my mother and she told me she wouldn’t have wanted it the way it turned out […] I’d have to say now that my mother should have died […] in retrospect I’d say they shouldn’t have done the tracheotomy […] definitely if it had all gone the way the doctor said, that she’d already got better by that point, then it would definitely have been all right and she would have agreed, too. […] it’s been very hard for me too, and I’m not a doctor who has to decide everything. But I must say what nobody really knows before, quality of life didn’t come back, like the doctor said. There’s been no improvement so far, my mother’s in the care home and she still has the tube in her. It didn’t go the way it should have” |
RES: resident; SP: senior physician; REL: relative