Lemos Dekker, N.

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UvA-DARE is a service provided by the library of the University of Amsterdam (https://dare.uva.nl)UvA-DARE (Digital Academic Repository)“I do want euthanasia, but not now.” Timing a request for euthanasia withdementia in the NetherlandsLemos Dekker, N.Publication date2018LicenseCC BY-NC-SALink to publicationCitation for published version (APA):Lemos Dekker, N. (Author). (2018). “I do want euthanasia, but not now.” Timing a request foreuthanasia with dementia in the Netherlands. Web publication or website, Somatosphere.http://somatosphere.net/2018/09/i-do-want-euthanasia-but-not-now-timing-a-request-for-euthanasia-with-dementia-in-the-netherlands.htmlGeneral rightsIt is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s)and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an opencontent license (like Creative Commons).Disclaimer/Complaints regulationsIf you believe that digital publication of certain material infringes any of your rights or (privacy) interests, pleaselet the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the materialinaccessible and/or remove it from the website. Please Ask the Library: https://uba.uva.nl/en/contact, or a letterto: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. Youwill be contacted as soon as possible.Download date:10 Mar 2023“I do want euthanasia, but not now.” Timing a request for euthanasia with dementia in the Netherlands | Somatospherehttp://somatosphere.net/2018/09/i-do-want-euthanasia-but-not-now-timing-a-request-for-euthanasia-with-dementia-in-the-netherlands.html[29-10-2018 11:58:17]A collaborative websitecovering the intersections ofmedical anthropology,science and technologystudies, cultural psychiatry,psychology and bioethics.HomeAboutMastheadResourcesTagsSelect Tag~Stories about time shifted, folded and shared, the extraordinary ordinary, and keeping separate and being a-part. September 17, 2018“I do want euthanasia, but notnow.” Timing a request foreuthanasia with dementia in theNetherlandsBy Natashe Lemos DekkerSitting on orange seats in the corridor, Ms Verbeek, her niece Hannie and I arewaiting for the general practitioner. Ms Verbeek seems a little restless and isquiet. She is 79 years old and lives by herself in a small town in the south ofthe Netherlands. We have met several times before, sometimes one on one, andsometimes together with Hannie. Those previous meetings had taken place ather home, but this time we are in the nursing home where the doctor has hispractice. He arrives, and after greeting each of us we walk to a small meetingroom. The doctor, Maarten Terbrugge, is a young and jovial man. He iswearing a striped shirt and jeans, and gives an approachable impression thatusually enables him to create open conversations with his patients. Themeeting room is painted white and furnished with a light wooden table and sixchairs. Terbrugge gestures that we should all take a seat. Ms Verbeek andHannie sit next to each other and I take a chair opposite Ms Verbeek.Terbrugge has taken a chair at the head of the table with his back to the clockon the wall. I check to see if he is wearing a watch, but he is not. Terbrugge isnot preoccupied with clock-time. On the table is an entirely differenttemporality: the timeframe of a request for euthanasia.Ms Verbeek has established three written statements: one declaring that shedoes not want to be resuscitated, and two specifically for euthanasia, in whichshe solicits the general practitioner to end her life if and when her sufferingThinking with DementiaEdited by Krause, Kristine;Pols, Jeannette;Driessen, Anneliekeand Yates-Doerr, EmilyContributorsSusanne van den BuuseFrancesco ColonaAnnelieke DriessenAlessandro DurantiSilke HoppeKristine KrauseNatashe Lemos DekkerIngunn MoserElinor OchsJeannette PolsAnnekatrin SkeideLaura VermeulenHenrik VighMaarten van WestenEmily Yates-DoerrOverviewIntroductionTimeDaily lifeParticipationLicense: Log inScience,Medicine, andAnthropologyFollow us:1 CommentAging, Alzheimer, anthropology,Care/caregiving, Death,Dementia, Dying, ethnography,Europe, euthanasia, fieldwork,Future, Memory, Mental health,mortality, nursing home,Suffering, the netherlands, time“I do want euthanasia, but not now.” Timing a request for euthanasia with dementia in the Netherlands | Somatospherehttp://somatosphere.net/2018/09/i-do-want-euthanasia-but-not-now-timing-a-request-for-euthanasia-with-dementia-in-the-netherlands.html[29-10-2018 11:58:17]becomes “unbearable”.Opening the conversation, Terbrugge asks Ms Verbeek how she feels she hasbeen doing since their last meeting.“Oh, I think I’ve been doing reasonably”, she answers. “I am often forgetful,but usually it does come back, you know? It’s not that I cannot function.”“Did you manage to keep track of your diary?”“Yes, I think so. They are not full pages, of course.”“Well, let’s see it then”, says Terbrugge.Hannie bends down to pull the diary from her bag and passes it to Terbrugge.The diary is a simple black pocket-sized agenda, with each day printed on aseparate page. Terbrugge slowly browses through the pages and reads the linesMs Verbeek has written. Most of the pages contain only one or two sentences,written in classic script. On one day she wrote that she had been working in thegarden with Hannie. On another, her godchild had come to visit, who wrotethat they had had a cup of coffee and that it had been very gezellig.[1]“I do very normal things”, Ms Verbeek comments. “So what I write down isvery ordinary. Sometimes I have to search for something I have lost, that drivesme crazy. But usually I find it again. But everyone has that, every now andthen.”“I notice that you record quite well what you have been doing”, saysTerbrugge, who is still browsing through the pages. “And I see that you oftenmention nice things as well. I think that is very good. It indicates that you areenjoying life. But I also see that there is very little about the things that arebecoming more difficult.”“Yes, well, but that does not happen so often. Things of which I would say,‘Oh I can’t do that anymore’, or ‘I find that difficult’, or, I don’t know, that Iforget something.”I notice that Hannie frowns and looks disapproving each time Ms Verbeek saysshe is doing well or that she is not very forgetful.“Well”, Hannie intervenes, “yesterday wasn’t all fun, was it?” Hannie, a sternand tall woman in her late thirties, has not said much up to this point. She talksin an assertive tone.“Yesterday”, she continues, looking at Terbrugge, “I came by and I told herthat we would go to the doctor today, and she became angry with me”.Terbrugge looks at Ms Verbeek, who hesitantly answers, “Yes, I did not likethat”. When Terbrugge asks her if she can explain, she elaborates.“It always makes me a little scared. Not of you, but of what you might say. Iam so afraid to be evicted, to be taken out of my house and moved to a nursinghome. I would find that terrible. Now I still have so much freedom and I canstill do so much. And then I think, what to do?”Terbrugge nods, and asks: “Are you afraid I would bring up that topic?”“I do want euthanasia, but not now.” Timing a request for euthanasia with dementia in the Netherlands | Somatospherehttp://somatosphere.net/2018/09/i-do-want-euthanasia-but-not-now-timing-a-request-for-euthanasia-with-dementia-in-the-netherlands.html[29-10-2018 11:58:17]“Yes. Or that you find things are not going well. That I indeed forget too much.I don’t think I do now, but if that were to happen, I wouldn’t know what to doagainst that, I cannot stop it.”“Well, these things don’t happen overnight”, Terbrugge comforts her.“She keeps asking me why we have to go to the doctor all the time”, Hanniesays. “And when I then talk with her about those things that are not going well,it makes her unhappy. I find it difficult to confront her with that, but I find thatI have to. Otherwise she thinks everything is fine, and it is not.”“I am just afraid I will not be able to live at home anymore”, Ms Verbeekrepeats. I notice her tone of voice has slightly changed. She had been speakingsoftly, as if she had been afraid to talk, and afraid of what might be said. Nowthat the topic of her fear is openly on the table, she seems to become moresteadfast. “It is not that I am sad about it for days, but I think about it often.”“Actually”, she continues, “I wish to stay at home as long as possible, until Ido not know it anymore and I need to move to a nursing home. Then I wanteuthanasia, because I do not want to go to a nursing home”.“Why is having to leave your home a limit for you?” Terbrugge asks MsVerbeek.“Well, that I walk onto the street and don’t find my way back home. You hearthat sometimes, of people who start wandering. I would not want that.”“So for you, admission to a nursing home means you will have degenerated toa point where you think you will be doing things you don’t want to do?”“Yes. Then life has no point anymore, has it? I also don’t think it’s easy foryou, a question like that.”“So what makes that the limit?” Terbrugge repeats his question. “What are youafraid of? Is it the fact that you would have to leave your home, or furtherdegeneration?”“Well, those two come together”, says Ms Verbeek. And, after a short pause,“Both my father and brother lived in a nursing home, so for me that is a limit.Then it is enough. To be closed in in a ward, what kind of life is that? I won’tsay I still do everything right, but I feel I can still stay at home a while longer.This situation will only get worse. I am sometimes a bit forgetful, and then Iwill not be able to discuss it anymore. So I felt I had to start this on time.”Terbrugge takes a deep breath and says, “The point is that when the momentarrives when you would no longer be able to live at home, is often also whenyou will have regressed cognitively to a point where it will be hard to oversee.That you do not see the degeneration yourself. This can become a problemwhen we enter a euthanasia trajectory, and you cannot oversee the trajectoryyourself”.To which Ms Verbeek answers, “Well, I do want euthanasia, but not now”.What can we learn from the need to start ‘on time’, the repetition of statementsand questions, the fear that it will be ‘too late’, and a sense of inevitabilityleading towards an apocalyptic scenario? Thinking through dementia andeuthanasia about temporalities and future-making, I explore a request for“I do want euthanasia, but not now.” Timing a request for euthanasia with dementia in the Netherlands | Somatospherehttp://somatosphere.net/2018/09/i-do-want-euthanasia-but-not-now-timing-a-request-for-euthanasia-with-dementia-in-the-netherlands.html[29-10-2018 11:58:17]euthanasia as an act of responding to, and preparing for, an imagined butunwanted future, and which constitutes an anticipatory practice. In anticipatingthe end of life through euthanasia, the person with dementia searches for anideal moment which should consist of overlapping timeframes wherein she canstill explicate her wish for euthanasia while achieving a point where life isdeemed not worth living anymore. Often, these timeframes exclude oneanother. How then to think about the future, when the only possible dignifiedfuture is to have no future at all?[1] Gezellig has no equivalent in English, but refers to a certain cosy or niceatmosphere.Natashe Lemos Dekker is a PhD candidate in medical anthropology at theUniversity of Amsterdam and a research fellow at the Leiden UniversityMedical Centre. Through ethnographic fieldwork in nursing homes in theNetherlands, her PhD research addresses the social processes and the moralvalues in death and dying with dementia. She assesses the politics of death anddying by questioning normative conditions for the production of lives worthliving. As a research fellow she studies the implementation of palliative care innursing homes through a critical evaluation of palliative care tools forobserving and marking the end of life. The questions raised in the story for theseries Thinking with Dementia form the background of a longer article that sheis currently working on.  Her latest publication “Moral frames for lives worthliving: Managing the end of life with dementia” appeared in Death Studies 42(5), in 2018.[view academic citations]One Response to “I do want euthanasia, but not now.” Timing arequest for euthanasia with dementia in the NetherlandsPingback: Refraction of time | SomatosphereOther stories from Time:The fool with the watering canSix photos of my fatherRe-enacting memoriesFolding timeRefraction of timeLeave a ReplyYour email address will not be published. Required fields are marked *Comment

“I do want euthanasia, but not now.” Timing a request for euthanasia with dementia in the Netherlands

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“I do want euthanasia, but not now.” Timing a request for euthanasia with dementia in the Netherlands

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