June 14, 2024

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Patient perspectives on advance euthanasia directives in Huntington’s disease. A qualitative interview study | BMC Medical Ethics

9 min read

Study sample

The demographic details and the number of interviews are shown in Table 2. One participant was interviewed once, two participants were interviewed three times, three participants were interviewed four times, two participants five times and one participant was interviewed six times.

Table 2 Demographic details of the participants

All participants of the current study (n = 9) brought up the topic of euthanasia themselves. Five participants started talking about euthanasia when the opening question (“Do you ever think about the future?”) was asked by the interviewer. Two participants took the initiative in talking about euthanasia later on in the interview, and two even before the opening question was asked.


We identified two themes which reflected the different ways in which the participants spoke about their AED: (1) General character of the AED and (2) Uncertainty around their AED.

1. General character of the AED

The participants differed in the extent to which their AED was specific for them as a person. There was one participant (P6) that had a detailed statement based on what made life worth living specifically for her. She defined what gave her life meaning and derived from this when life would have become meaningless for her.

P6.1: “I am always creative and working with my hands. Suppose that at some point I can’t do that anymore, that could also be a consideration for me, […], to say I’m done. […] Dementia. That’s another thing that makes me think: thanks but no thanks [laughs]. […] Look, if, for example, my mind is still clear, you know, and I can still use my hands, but I would, for example, be fed through a feeding tube, then that wouldn’t be a big problem at all. […] No, if that meant
I could function OK, then I think: fine. […] Look, even if it meant I wouldn’t be able to talk very well, but I could use a computer or something, well, fine. Look, I’d still be able to communicate. But if I can’t do that anymore, so not be able to convey to others what I want, what I mean, and not be able to express myself, I would really hate that.”

Most participants, however, indicated which conditions they no longer wanted to experience, but they did so in such general terms that it could hardly be traced back to specific circumstances or activities that have made life meaningful for them until now. Frequently mentioned issues were: becoming a vegetable, needing a wheelchair, having to go to a nursing home, getting dementia, having an empty look, being dependent on others, and being a burden to others.

P3.2: “That I’m going to end up like a vegetable, that’s not going to happen. And that’s why I have my AED ready.”

P8.1: “Getting dementia. […]. If that happens, then I’m going to stop. I’ve already arranged everything.“.

P9.3: “Well, I still don’t want to go to a nursing home. So if I can’t live here anymore, well, then I’ll just quit.”

There was one participant (P12) who, even though she shared in the interview that she did not want to end up in a nursing home, did not even include this statement in her AED. She downloaded her AED from the internet and did not add any personal remark to it. Therefore it could be applicable to almost everyone.

P12.1: “I got it [AED] somewhere online because it’s hard for me to draw that up. So I got it off the internet.”

So, in most participants we did not see a very person-specific interpretation of the AED.

References to conditions of family members

Participants also differed in the extent to which they were guided by examples of family members with HD in drawing up their AED. For some participants, these experiences played a major role in formulating the conditions for euthanasia. Participants stated that they do not want to experience certain things that they have seen with family members.

P4.1: “In the end my mother was only sleeping, […]. That was difficult. Yes, so then we said, if we become that ill, let it be over soon. We don’t have to become that old with it. Not as old as mother, no.”

P11.1: “At one moment my brother was in a wheelchair and all kinds of things. Then I think: well, I can’t bear the thought of that right now. Yes, you don’t want that.“

P12.1: “Because I don’t want that ending. Like my mother, who was ill. I don’t want that.“

2. Uncertainty around their AED

Participants differed in the extent to which they were uncertain about their AED and were aware that their AED could change over time. Most participants were aware that their AED, as they had described it, might not be carried out.

The first aspect of their doubts concerned participants’ own willingness to initiate the euthanasia request in accordance with their AED. At the time of the interview, the participants thought they knew at what moment they no longer wanted to live, but at the same time they realized that things could come in their path that might make them longer attached to life.

P4.1: “That’s my limit. Then my life may be over, yes. […] My wife sometimes says: suppose you’re still very happy with the grandchildren. Well, then I’ll wait for a while, but I wouldn’t say it will take much longer. I don’t think so. We shouldn’t be too rigid about that either, but then again, if my life isn’t fun anymore, it’s over.”

P6.5: “That would be a reason to consider: do I want to continue living or not. […] It could very.

well be that I have found other things, another hobby or whatever, that I would think: I want to continue for 10 years. I can’t say that ahead of time.”

One participant (P7) was so aware that the AED could change over time, that she was unable to draw up her AED.

P7.1: “Now I have a fairly full life. Not as full as before, by no means, but I’m very happy with it. And the less full it is or the less you can do, if there are just two things I like, say going outside or something like that once a day, or whatever, seeing your kids. I find it very difficult to say which moment. I don’t believe I can already.”

Another expression of doubt about one’s own willingness was the question: will I be able to request euthanasia when the time has come? Participants realized that it would be very difficult to request euthanasia when they would see aspects of their life that would make them still attached to their life, even though the conditions that they no longer wanted to endure were present. They dealt with questions such as: How can I resist the temptation to put it off? Or: How can I force myself to get out in time? Such as P8, who explained that she had to be confronted with other patients to be reminded that she did not want that situation, and P9, who indicated that he could imagine postponing the moment of euthanasia for his daughter.

P8.1: “I also think I have to be faced with the facts regularly to see how sick they are and what you don’t want for yourself, so to speak. I think it’s a good thing that every now and then you see people who are further along than I am, because well, then I’ll know for sure: that is really not what I want.”

P9.4: “For my daughter, I feel a lot of sadness, that I have to miss her. […] That she just won’t have a dad anymore, at that age already. […]. Then I would rather take a little bit longer for her sake, […], for her to find closure as good as possible. […]. Look, if she hadn’t been there, I might have already done euthanasia or something.”

The second aspect that participants could have doubts about was the willingness of others to cooperate in their euthanasia request. These doubts could concern the willingness of a physician or a relative. Not all participants had spoken to their physician about their AED and when they had, it differed whether they only did so when drawing up the AED, or if they discussed it more than once. One participant (P9) initially seemed worried that his future euthanasia request would not be carried out if he had not discussed his AED frequently enough with his general practitioner. In a following interview that doubt no longer existed.

“Well, I also had my AED updated. Because of course I have to have conversations with my new GP, the Supreme Court said so. […]. There has been a ruling about euthanasia cases where people have declared in the past, if I get Parkinson’s or become demented, then I want would like to put an end to it, […]. Then you still really have to discuss this with your GP in the meantime. […] In the city I previously lived in, I had agreed with the GP that we would sit together every four, five months.”

P9.3: “In the city I previously lived in, I had a good GP with whom I had a conversation every 3, 4 months, […]. And then you automatically have confidence in how that will turn out [laughs]. And now, I live here over a year and a half and I have that feeling a bit less. My GP doesn’t really want to meet every 3, 4 months. […]. I just went to her a few more times, of my own accord. Because, of course, I thought: well, I’m going to make sure I follow the rules, myself. So, 2, 3 times or so, I just made another appointment.”

P9.4: “I just wanted to talk with my GP every once in a while, to confirm that I still have HD and still want to die, to put it plainly [laughs]. But she just made it very clear to me, that she supports it 100%. That those kinds of conversations just aren’t necessary. […]. Because euthanasia legislation also has become more flexible. […] As long as you have an AED, you can get euthanasia.”

Another participant (P11) worried that in due course she would be dependent on the willingness of her relatives to have the AED carried out.

P11.1: “I remember that when my brother was here in the nursing home, my mother said to the doctor: you know what’s in the advance directive, don’t you. And the doctor replied with yes. But then at one point in time he got morphine and died within a few days. […] But, look, my husband says, he sees my advance directive of course, […] and he also says: yes, we just have to see how it goes.”

There were two participants (P3 and P12) who had no doubts whatsoever about the tentative character of the AED. Their AED was no longer under discussion and only had to be confirmed annually with their physician or kept on the shelf.

P3.3:“The AED is there and when the time comes it will be granted. I have not discussed it with a doctor, nothing at all.”

Changes in the course of the interviews (longitudinal results)

So, in most participants we saw some awareness of the tentative character of their AED. However, participants did not alter their AED during the follow-up period or changed in their view or attitude on their AED. Even P4, the only participant that reached the previously mentioned boundary of needing help in taking a shower, did not mention that he altered his AED in the process.

P4.2: “I also have an AED. If I’m no longer able to shave and brush my teeth, things like that, then I will quit life. I don’t want any help from home care or anything. […]. Becoming dependent on others, I don’t think so. […]. I’ve been a professional caregiver myself, so I could do all those things. […]. No, that doesn’t seem nice to me.”

P4.6: “I receive home care three times a week, and I like it. Yes, they take good care of me. […]

I: and what is it like for you, to receive home care?

P: Yes, I think that’s fine. I’ve worked in healthcare myself, so I’ve done it quite often, so I don’t mind. […].

I: I can remember from the previous times, you were not so positive about help with showering, for example.

P: yes, I have completely turned around.”


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