Table 2

Remarks about unbearable suffering made by patients who explicitly requested assistance in dying

1.1aIllness-related physical symptoms31I have fecal incontinence. I can no longer swallow and in hot weather I really envy people who can drink
1.1bFatigue12The way to my bed is endless and finally I get there. It takes a lot of energy, but once I'm in bed, it takes an hour just to gather my strength again
1.1cPain28I am in pain all the time, I am in pain at night, I wake up with pain and I go to bed with pain. If they could take away half my pain I wouldn't be thinking about euthanasia
1.2Cognitive symptoms9The past few days even the news doesn't interest me anymore, I have less interest in the outside world. My brain no longer works and to me that is a part of human dignity and of unbearable suffering. I want to function normally and if I can't do that…
1.3Psychiatric symptoms7I suffer so much that I can't recall when life was lovely and happy. My life is hell. My life is inhuman. I have such deep pain inside
1.4Misery due to medical treatment11I was simply nauseous and my energy was just running out. And I said that I wished that, just for a short period of time, I could eat normally and not have to fight to keep it down and that I wanted to have a little more energy. Then I stopped the chemo and indeed I had that improvement
1.5Decline29I can no longer bear the undermining nature of my disease; there are moments when I can't find a single word in my brain
2.1Loss of sense of self13I want to present myself as being as normal as possible, but everybody notices it: I stumble and I am slow and that is just not me because I always was a nimble girl
2.2Negatively coloured feelings17I am tired of life and that has to do with my marriage, which was difficult. Not every day, but regularly and that was not so pleasant. I was going to write it all down, but I am so very tired
2.3Fear of future suffering21Finally the illness that dominates everything will wipe out all life has to offer me, what I feared most is exactly what will happen to me. I won't belong anymore, the emptiness of existence, the lack of independence, being unable to do things myself, being at the mercy of others whom I will have to beg to do the things I need in a way that's suitable for me
2.4Dependency26I can't do anything anymore, they leave me lying here until 10 o'clock and they only wash me when they feel like it
2.5Autonomy27I say: I have made my decision. I don't want you to treat me any longer. Someone says, now you are probably too weak for chemo. I say: if I'm not too weak and they want to give me chemo, I will refuse it, because in the little time that is left to me I want quality of life, not quantity of life. I decided that year ago: if this were to overcome me, then that's what I would choose
2.6Mental exhaustion2Mentally I am completely exhausted. I can't fight it anymore.
3.1Loss of being socially significant3I was a very handy man: there were all kinds of odd jobs to be done in the home for the elderly and I enjoyed doing them. Then I felt useful to this society. I can't do it anymore, I can't do anything anymore, but I lived a worthy life…
3.2Communication problems30When he is with his friends, he can't say anything and that's just the difficulty. He likes me to be there because when he can't manage to communicate he feels so unhappy. The conversation flags and with, um, such a device, most conversation is almost impossible. Just talking to him, I notice that you really must never ask him anything, you must just tell him things and only ask questions that he can answer with yes or no
3.3Discontent about residential circumstances and quality of care24I will decide for myself as long as I can. I don't want to go to a nursing home, we have agreed on that. It would be the end of me
3.4Being a burden28I have become so weak because of the pain. I can't walk anymore, I can't eat anymore. My children have suffered enough. I don't want them to go through this again. Everybody has to lose their parents some day anyway
3.5Loneliness8The home help comes once a month. Even though I look healthy, I have so much grief because I have lost everybody, your parents, your husband and your sisters and my brother was shot dead by the Germans. Everything is gone
3.6Biography10…claustrophobia of my existence. To put it simply, it is insight without perspective. Never in my life have I felt any love. If there had been some warmth and love and safety, I could have grown
4.1Limitation of activities25I can't drive anymore. I loved to paint and draw, but I can't do that either anymore. Everything I enjoyed is gone. And then, my sight became worse…
4.2Hopelessness16You lie in bed and none of the normal functions come back. They will never come back and it will only get worse
4.3Pointlessness5I'm not interested at all anymore, I just lie here and what's the point? There isn't any. I no longer read. Not books, not newspapers. I have CDs and the Walkman right here. Well, I've listened to, um, two CDs and that's enough. And yet I really loved music, but it's all over. I'm just not interested anymore
4.4Being tired of life19I think that my life is absolutely completed. I don't know what else I could want