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Research ArticleOriginal Research

Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study

Eva Elizabeth Bolt, H. Roeline Pasman and Bregje D. Onwuteaka-Philipsen
The Annals of Family Medicine November 2023, 21 (6) 534-544; DOI: https://doi.org/10.1370/afm.3037
Eva Elizabeth Bolt
Amsterdam UMC, Amsterdam, The Netherlands
MD, PhD
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  • For correspondence: Ee.bolt@amsterdamumc.nl
H. Roeline Pasman
Amsterdam UMC, Amsterdam, The Netherlands
PhD
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Bregje D. Onwuteaka-Philipsen
Amsterdam UMC, Amsterdam, The Netherlands
PhD
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  • Figure 1.
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    Figure 1.

    Narrative descriptions of the 3 groups.

    VSED = voluntary stopping of eating and drinking.

  • Figure 2.
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    Figure 2.

    Optimal case of VSED to remain in control: Mr Jansen, a man in his 90s (case 5).

    VSED = voluntary stopping of eating and drinking.

  • Figure 3.
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    Figure 3.

    Optimal case of VSED to accelerate a natural death: Mrs van Vliet, a woman in her 80s (case 12).

    VSED = voluntary stopping of eating and drinking.

  • Figure 4.
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    Figure 4.

    Optimal case of VSED as a more acceptable suicide: Ms van As, a woman in her 20s (case 3).

    VSED = voluntary stopping of eating and drinking.

Tables

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    Table 1.

    Summary of Patient Characteristics for Each Group (N = 29)

    CharacteristicGroup 1: VSED to Remain in Control (n = 12)Group 2: VSED to Accelerate Natural Death (n = 11)Group 3: VSED as a More Acceptable Suicide (n = 6)
    Age at death/inclusion, median (range), y82 (64-93)92 (78-97)47 (26-82)
    Sex, female, No. (%)5 (41.7)7 (63.6)5 (83.3)
    Requested PAD, No. (%)9 (75.0)7 (63.6)5 (83.3)
    Attempted VSED, No. (%)8 (66.7)10 (90.9)6 (100)
    Died during VSED attempt, No. (%)8 (66.7)9 (81.8)2 (33.3)
    • PAD = physician-assisted dying; VSED = voluntary stopping of eating and drinking.

    • View popup
    Table 2.

    Detailed Patient Characteristics (N = 29)

    Case No.RecruitmentInterview Source(s)Age Decile at Death/Inclusion, ySexTiming of InclusionaRequest for PAD?VSED Attempt?Time Between Attempt and First InterviewDied During Attempt?
    PatientRelativePhysicianNurse
    Group 1: VSED to remain in control (n = 12)
      2NVVEx60sMAfterYesYes3 Months afterYes
      4NVVExx80sMDuringNoYesDay 4 of attemptYes
      5NVVExxx90sMDuringYesYesDay 8 of attemptYes
      6Otherx80sFAfterNoYes2 Years afterYes
      7NVVEx80sMBeforeYesNo…NA
    10NVVEx80sMAfterYesYes1 Year afterYes
    11NVVEx70sFBeforeYesNo…NA
    13NVVEx90sFAfterYesYes2 Years afterYes
    20Otherx70sFAfterYesYes4 Years afterYes
    21Caregiverx70sFBeforeYesYesDay 1 of attemptYesb
    25NVVEx70sMBeforeYesNoc(4 Months before PAD)NA
    27Caregiverx70sMAfterYesYes3 Weeks afterYes
    Group 2: VSED to accelerate natural death (n = 11)
      8NVVEx90sFAfterYesYes8 Months afterYes
      9NVVEx70sFAfterNoYes8 Years afterNo
    12NVVEx80sFAfterYesYes15 Months afterYes
    14Caregiverxxx90sFDuringYesYesDay 1 of attemptYes
    15Internetxx80sFBeforeYesYes4 Months beforeYes
    17NVVEx90sMAfterNoYes10 Months afterYes
    18Caregiverxx90sMAfterNoYes7 Days afterYes
    19Otherx90sFAfterYesYes2 Years afterYes
    24NVVEx80sMBeforeYesNo…NA
    28Internetx90sMAfterYesYes4 Months afterYes
    29Caregiverxxx80sFBeforeNoYesDay 9 of attemptYes
    Group 3: VSED as a more acceptable suicide (n = 6)
      1Caregiverxxx60sFDuringYesYes2 Days beforeYes
      3Otherx20sFAfterYesYes4 Days after ending VSEDNo
    16NVVEx80sMAfterNoYes9 Years afterNob
    22NVVEx30sFBeforeYesNo…NA
    23NVVEx40sFAfterNoYes17 Months afterNo
    26Internetx30sFBeforeYesYes2 Months beforeNo
    • F = female; M = male; NA = not applicable because VSED was not attempted; NVVE = Nederlandse Vereniging voor Vrijwillige Euthanasie (the Dutch Right-to-Die Association); PAD = physician-assisted dying; VSED = voluntary stopping of eating and drinking.

    • ↵a Relative to VSED attempt.

    • ↵b Died by suicide (ingestion of lethal substances).

    • ↵c Died by PAD.

    • View popup
    Table 3.

    Quotes From Participants in Each Group, by Theme

    ThemeGroup 1: VSED to Remain in ControlGroup 2: VSED to Accelerate a Natural DeathGroup 3: VSED as a More Acceptable Suicide
    Background and motive1.1. I’m done with it, I’m throwing in the towel. I’m 73. I’ve had a good life. I don’t really feel like having to spend a few years somewhere sitting and watching the credits to what’s been a beautiful film. (case 25, patient)
    1.2. My life is beautiful. But I’d rather leave. So that my children will remember a father who is still the father they know. Always a strong man who can do everything, instead of someone who is wasting away.... (case 5, patient)
    1.3. During my life, I have always been in control over everything. And that’s exactly what I want at the end of life. (case 11, patient)
    1.4 [It is important to me] to remain the same person, and not to wither away. I’ve seen that happening too many times, and I don’t need that. You wither away and you no longer are allowed to decide whether you want to live or die. (case 21, patient)
    2.1. She can’t do her make-up anymore, she can’t style her hair anymore 舢.that deterioration is awful for her. No longer being able to do anything. She can’t write anymore. She loved shopping but that’s no longer possible, or maybe for a little while every now and then. Other than that, she doesn’t really have anything left. (case 15, relative)
    2.2. For years my mother has been thinking she wouldn’t mind if it was all over tomorrow. Her health is really bad all the time, so much so that we keep thinking it’s over, and every time she still manages to recover. (case 12, daughter)
    3.1. It’s not that I don’t want to live, it’s that I can’t live. (case 3, patient)
    3.2. I haven’t wanted to keep on living for a very long time. Quite a long time, and that thought just became stronger and stronger. (case 23, patient)
    Considerations and preparations1.5. That’s why this method appealed to me: you can do it yourself and aren’t dependent and you don’t have to ask anyone anything. (case 4, patient)
    1.6. I also saw how you could collect medicines, you know, but I find that such a hassle. You’re dependent on having to get them, or should you lie? ... And then I think to myself, [in VSED] I’m completely in control here. (case 11, patient)
    1.7. I feel like stopping eating and drinking gives you the opportunity to work through a process. A winding-down process. Living with the end in sight, in 1 week or 2. And I can’t prove it, because I’ve not yet experienced it, but I think it’s a good thing. (case 7, patient)
    1.8. I can manage that. ... If I’m doing something, then I’ll do it. Then I’m fully behind it. And of course it’s not a spur-of-the-moment thing. (case 25, patient)
    1.9. [What you need is] perseverance. And a few people around them who come and check up on them every now and then. (case 5, patient)
    1.10. He was so adamant about that: It takes 4 days and then it’s over. And by God I don’t know where he got those 4 days from, but it was so forceful that we all, including him, thought “This takes 4 days.” That wasn’t true. ... And I had an image in my head, from the stories about an Indian sitting down leaning against a tree and his soul flying out. I think I had a bit of a romantic image. (case 6, daughter)
    2.3. She wanted euthanasia. But every time the doctor visited her, she didn’t give a clear signal that she was really ready for euthanasia. She always gave the impression that she was enjoying the small things in life. (case 19, relative)
    2.4. He said: “If I don’t get euthanasia, if I don’t get an injection, then this is an option that I still find acceptable and dignified.” (case 28, daughter)
    2.5. Her expectations were, because that is what we read, that after 2 days a moment of happiness would arise, and then you calm down and softly fade into unconsciousness. (case 29, daughter)
    2.6. At that moment, I don’t think she’d thought further about whether she’d be able to stick with it, she just wanted for it to be over, the end. (case 8, relative)
    2.7. She made her announcement very late, so we had to take care of everything in very short order. So yeah, there’s a whole situation first. For us, the hardest thing was that you couldn’t find good home care services at that time. (case 12, daughter)
    3.3. Euthanasia ... in my view that’s still the most humane way. ... I wanted to go back to the end-of-life clinic [for euthanasia], but then I’d have to go back on the waiting list, which is very long. (case 3, patient)
    3.4. (About suicide using medicines): My body gets taken over, there’s a lot of hassle, and the family I have, the police, the nurse who gets a shock when she finds me... I just want to do it properly. (case 1, patient)
    3.5. Because I’m young, and physically there’s nothing really wrong with me, I’m scared it will take too long. Not the usual average of 2 weeks. But I’m also very scared of delirium. (case 3, patient)
    Role of others1.11. [He said,] “I have a plan and this is what I’m going to do and this is what I’m expecting from you and this is how we’ll do it.” And that’s exactly what he did. (case 4, GP)
    1.12. He was very clear, he said there’s no room for discussion. ... “This is my decision.” But he really was willing to explain it to all his children and grandchildren. (case 6, daughter)
    1.13. [We said,] “Why are you doing this? There’s nothing wrong with you, you’re healthy!” You try everything to persuade him. ... There’s nothing that convinced us he had to take this step. At some point, my sister and I resigned ourselves to it, because we were fighting a losing battle. But my brother dug his heels in until the very last moment. (case 5, son)
    2.8. Then the doctor came up with the fact that you can also just stop eating and drinking, because that’s not a bad way to go. (case 15, relative)
    2.9. We told her, “Mom, if this is what you want, we will be there for you. We will get over this, don’t worry about that.” Because she said, “I don’t want to do this alone, I want to do this together with you.” (case 29, daughter)
    2.10. Bizarre. Well, who decides [whether you are eligible for euthanasia]? We were quite annoyed by it. You’ve already been through a lot and then you get that on top of it all. Isn’t it bad enough? Who decides how much someone is suffering and when it’s done? (case 14, daughter)
    3.6. It was around 8 o’clock; he came home and said, “I don’t need dinner, I’m going straight to bed, I’m tired.” For 4 days I didn’t realize that he wasn’t eating or drinking. (case 16, partner)
    3.7. [The carers] were also given the freedom to refuse to be involved, but to the great surprise of the head of care they said unanimously that they refused. (case 1, GP)
    3.8. I thought I’m not going to drag people into this, they’re not going to support me ... no one is going to support me in this. ... Because I’m too young and because they think I’m going to get better. (case 26, patient)
    3.9. The plan was to gradually eat and drink less and lose weight. And then to stop altogether. But the psychiatrist said, if you do that I will have you admitted. So they throw bombs on your plan. (case 22, patient)
    3.10. It’s been a whole process to get to the point where I wasn’t trying to stop him anymore, ... it’s been hard to be able to finally say, “I’m with you from now on.” (case 16, partner)
    Trajectory1.14. December, I didn’t think that was a good month to say goodbye because of the Saint Nicholas festivities. ... So I thought January would be a good month. When I had a business, that was the month for clearing up. (case 4, patient)
    1.15. Now I’m going to take control. But when you have nobody, you have to arrange things very well. But it doesn’t have to be done on the spot either. (case 11, patient)
    2.11. It’s a battle with myself. On the one hand, I think it’s ... well cowardly to end it, and on the other hand there’s that huge pain where you say, well folks, I’m very sorry, but now I’m going to do what’s right for me. It’s a constant dilemma. (case 24, patient)
    2.12. One day, he was sitting at the dinner table, downstairs in the dining hall (of the elderly care home) ..., and he pushed away his plate and said he wanted to go back upstairs. They brought him back to his room and called me [to tell me] that he had stopped eating and drinking. (case 17, relative)
    2.13. To everyone’s surprise, she was doing much better [she recovered from a heart attack] ... R. [patient] then immediately says, “Well, but I want to die, give me a shot or whatever.” “No ma’am, this is a hospital, and we don’t do euthanasia in hospitals.” I understand that R. has had a big discussion with the doctor and the nursing staff, saying she wanted to die. And at some point she said, “Then I’ll stop eating and drinking.” (case 8, relative)
    3.11. I really thought oh, I don’t want to go through another winter. Not another ... well, eventually you just keep going or something. (case 23, patient)
    3.12. That was in a psychiatric crisis. ... I felt a lot of turmoil inside, about wanting to end it all, and I was somehow trying to stay in control, well then I’d do it this way ... so that I can still say goodbye. (case 26, patient)
    3.13. Especially because my GP supports me, my family supports me. Then I don’t really need to commit suicide so to speak. It’s a good source of strength for me. (case 23, patient)
    • GP = general practitioner; PAD = physician-assisted dying; VSED = voluntary stopping of eating and drinking.

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The Annals of Family Medicine: 21 (6)
The Annals of Family Medicine: 21 (6)
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Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study
Eva Elizabeth Bolt, H. Roeline Pasman, Bregje D. Onwuteaka-Philipsen
The Annals of Family Medicine Nov 2023, 21 (6) 534-544; DOI: 10.1370/afm.3037

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Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study
Eva Elizabeth Bolt, H. Roeline Pasman, Bregje D. Onwuteaka-Philipsen
The Annals of Family Medicine Nov 2023, 21 (6) 534-544; DOI: 10.1370/afm.3037
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Subjects

  • Domains of illness & health:
    • Mental health
  • Person groups:
    • Older adults
  • Methods:
    • Qualitative methods
  • Other topics:
    • Complementary / alternative medicine
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    • Patient perspectives

Keywords

  • voluntarily stopping eating and drinking
  • VSED
  • palliative care
  • pain
  • suffering
  • death
  • aged
  • aged, 80 and over
  • elderly
  • geriatrics
  • psychiatric illness
  • end of life
  • physician-assisted suicide
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  • primary care

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