Discussion: Later Life Considerations

6. A WINDOW INTO DUTCH LIFE AND DEATH Euthanasia and End-of-Life in the Public-Private Space of Home

Franres Norwood

THIS CIIAPTER EXPWRF.S TRANSITIONS RELATED to space and place as peo­ ple use, manipulate, embrace. and push against physical and societal con­ straints. norms. and policies at the end of Dutch life. With the proliferation of life-saving technologies and medical interventions. hospitals and nurs­ ing homes around the world have come to dorninnte as primary end-of-life settings (Brodwin 2000: Glcckman 2009; Kaufman 2005: Lock, Young. and Carnbrosio 2000). ln the Netherlands. however. home has retained a foothold at the end of life with approximately one quarter of all deaths each year occurring in the home with the aid of an extensive system of home health care and regular house calls by general practitioners (Centraal Bu­ reau voor de Statisliek 2004: Norwood 2009). 1

Home marks a significant place in life and at the end of life in vario us cultural contexts (Birdwell-Pheasant and Lawrence Zuniga 1999; de Cer­ teau, Giyard. and Mayol 1998: Rapoport 1969: Ronald and Alexy 2011; Rowles and Chaudhury 2005: Rybczynski 1986). ln the Netherlands, home is where public and private converge. mediated by the very particu­ lar way Dutch people often use their windows a nd by end-of-life care that enters the home in the form of euthanasia policy and discussions. Dutch homes are unusual in that front windows are prominent and frequently le ft unobstructed. giving the passersby a view into the homes and lives of many Dutch families across the country (Cieraad 1999; RybC’lynski 1986; Vera 1989). In addition. home is where the majority of euthanasia cases occur in lhe country with the longest-standing legal practice of euthanasia (phys ician tcrminaling a lil(· a l lhal person’s explicit request for reasons of lasting and 11nh(‘illc1hlc suffl”ring) and ;1ssislt•d suici<lt- Cphv-;ida 11 provid­ ing ii Jl<Tso11 llw 11wa11s lo 11″1111inate 1hal pt·rso11″s Cl\\ 11 1i1.. li11 11 •o1:-;11 11s of

A WINl>OW INTO Dl•Tl’ll J.ll’ll ANO OllA’IH 93

lastin g and unbearable suffering). This chapter is about how and where individuals may adhere to or break free from constraints imposed by illness. aging. and culture. It is about how Dutch people negotiate end of life in re­ lation to lwo of the major ways that culture enters the home-through the prominent Dutch window and via euthanasia poHcy. Using data gathered during a fifteen-month ethnographic study of death and dying in the home and nursing borne between 1999 and 2001. I explore the intersections of public and private life at the end of life as they converge in the typical Dutch bome. i

To better undersland how a window and a policy impact Dutch life. I borrow Michel de Certeau ‘s concept of “spatial practices.” De Certeau ar­ gues that spatial practices are something that you do not necessarily see. They are “networks of these moving. intersecting writings [which] com­ pose a manifold story that has neither author nor spectator. shaped out of fragments of trajectories and alterations of spaces” (de Certeau 1984: 93). Spatial practices arc those practices in relation to built environments that are both determining (disciplinary space that structures how space is used) and allow for human agency. creativity, and resistancc-transforma­ tive practices that in spite or the structure continue lo elude discipline (de Certcau l 984: 98). De Certeau equates spatial practices with a speech act and suggests that walking is to the structuring city as a speech ace is to language. He writes:

If it is true that a spatial order organizes an ensemble of possibilities (e.g., by a place in which one can move) and interdictions (e.g .. by a wall that pre­ vents one from going further), then the walker actualizes some of these possi­ bilities. rn that way. he makes them exist as well as emerge. But he also moves them about and he Invents others, since the crossing. drifting away, or impro­ visation of walking privilege, transform or abandon spatial elements. Thus Charlie Chaplin multiplies the possibilities of his cane: he does other things with the same thing and he goes beyond the limits that the determinants of the object set on its utilization. In the same way, the walker transforms each spatial signifier into something else. And if on the one hand he actualizes only a few of the possibilities fixed by the constructed order (be goes only here and not there), on the other he Increases the number of possibilities (for ex­ ample, by creating shortcuts and detours) and prohibitions (for example. he forbids himself to take paths generally considered accessible or even obliga­ tory). He thus makes a selection. (de Certeau 1984: 98 )

For the Dutch person who comes home to die, she too Is structured by the spaces In which she Ands herself- a declining body. a home transformed by illness. Bui jusl lil-c de Certcau’s walker. she makes creative choices wilhin the co11slrni11ts of ii dyin!!, hody and a dvin~ spacc. lran:-;formin~ the 1111111­

94 l’RA1’CES l\ORWOOD

ber of possibilities by “creating shortcuts and detours.” Using ethnographic vignettes from my research. I want to highlight some of the more typical transitions and transformations that take place in relation to spatial prac­ tices at the end of Dutch life. Discussion: Later Life Considerations

FIGURE 6. 1 Photo hy Nicole Mctrshall. printed wil h JX’nnissio11.

A WINl>OW INTO DlTTl’H 1.11’1! A1’D DllA’fff 95

Through the W indow: The Public-Private Space of Home

A prominent feature in any city or town in the Netherlands is the broad and open windows of many homes that offer a largely unobstructed view from the street into the front rooms of the house. The window may be framed by lace. adorned with art. or sometimes ornamented with a semi-opaque strip across the bottom part of the window to partially block visual access to the interior. At night when the home is lit up from within, the curtains are left open to clearly display glimpses of Dutch home life to anyone who passes by. Through the meticulously clean window. the public is allowed to en­ ter the Dutch home, creating what researchers call a “semi-public space” within the front interior of the typical Dutch house (Vera 1989: 22 5).

Privacy has not always been associated with the concept of home in Eu­ rope. Medieval homes were often live-work spaces left open to the public on the ground floor. It w·ds not until the seventeenth century that private space came to be a central feature of the Dutch home (Rybczynski 1986: 15-49). While the front of lhe home remained open to the public, at least visually, through the large Dutch windows that dominated the seventeenth-century fac;ade, the hearth at the back of home. the ground floor garden, and the upstairs floors marked the newly privatized space-space that is ollen de­ scribed in Dutch terms as “gezellig” or warm and cozy. Historian Geert Mak writes. “The dual nature of this domesticity was to characterize the city for centuries to come: on the one hand the cordial openness of the merchant who meets his customers in the front house aod will close neither shutters nor curtains at night, on the other, the contained, private life of the inner hearth. that curious atmosphere which the Dutch delineate with the word gezelligheid, the snugness which is soft on the inside and hard on the out­ side” (2000: 29). Discussion: Later Life Considerations

The exact onset of this open window culture, and why it has continued into present day, is less than clear. Some suggest it may be based on a col­ lective ideal that has been linked to the Dutch Reformation of the sixteenth and seventeenth centuries (Horst 2001; Schama 1987: Vera 1989). Soci­ ologist Hernan Vera found indications that open window culture may well have originated with the Reformation and the influx of strict views around predestination linked w ith Protestant Calvinism. By leaving one’s windows with an unobstructed view into the home, Dutch people could display to their neighbors their chosen place in the community. Vera also found refer­ ence to open window culture following World War II. cited as a “collective and protracted reaclion” to the forced covering of windows during the war ( 1989: 219- 20). Social historian Han van derHors t suggests that the prac­ lice of i..1·1·pi11g mw’s horm· life on display may well he ci modcrn-duy c ul­

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I 1

96 FRANCtlS NORWOOD

tural response to social pressures lo act in ways that do not communicate excess or overt individuality. The phrase often heard today is “doe maar ge­ woon. dan doe je al gek genoeg,” wWch is translated to mean. “be normal. that is crazy enough” (Horst 200): 214). It is a phrase invoked when describing what is “typically Dutch” and it serves as a reminder that there is an aspect to Dutch culture that emphasizes conformity to the group standard epito­ mized by this long-standing tradition of an open window culture.

Regardless of the exact origins. at least two consequences have evolved as a result of these curtainless spatial practices. First. there is a space within the typical Dutch home that can be characterized as semi-public. The pub­ lic does not stop at the fa<;adc of the home. the front hall. or the entryway. as it docs in most European homes. Instead, the eyes of the Dutch public enter unannounced through the Dutch window to view their neighbor’s possessions and the flow of home life. Discussion: Later Life Considerations

Once you enter these h omes and live in these open front rooms you quickly come to notice a second important consequence of the Dutch win­ dow-private life as public performance. Just as in Erving Goffman’s ex­ ample of the man who prepares his social face when approaching the front door of a house. I too came to manage my own expression as l approached a Dutch home and as I lived within the semi-public s pace at the front of the house ( L9 59: 8-16). Living and working in Dutch homes. I initi ally had the eerie sensation of knowing my activities were visually on display. Over time, however. I came lo feel comforted and connected somehow. know­ ing that I could be seen and could myself view the street scene outside my window. In the Dutch home. the window mediates the flow of culture from society to family. offering gradations of public and private. Swedish anthro­ pologist Ulf Haonerz writes:

[Dutch windowsj offer the sensation or great openness: culture flows through these windows, as It were, from private to public spaces and vice versa. It may be a conspicuous claim that “I have something to trade,” made by a scantily dressed young woman in a window framed by red neon lights; or. simply and piously, that “we have nothing to hide,” In the instance of the elderly couple glimpsed through the next window. with their backs turned. lace curtains not drawn. Through the window the market displays its goods. and forms of life other than one’s own can be inspected. at least surrcptlliously. ln passing. And this is a two-way flow. for windows also allow you to keep an eye on the street seen e. ( 2 000: 176). Discussion: Later Life Considerations

Clearly. “Dutch private” is not exactly private. Instead it is porous. allow­ ing for gradations of semi-public space that impacts how people use their homes. even within 1hc home. Tht•rc is an aspect of a <‘<>llcctivc ideal that rcrmcales C’V<‘ll l>ul ch priv;il1· Iii(·. impartill!?, many or lhc lr:i11sl(irn1<1tions

A WINDOW INTO DUTCH l.ll’ll AND l>BA’l’H 97

that occur in the home near the end of life. The following is a look at how public and private meet as people age and grow ill in the space of home.

Aging in the Public-Private Space of Home

In a country that Is based on a collective ideal. it is perhaps not surpris­ ing that the Dutch home is permeated by gradations of both public and private. When people become seriously ill in the Netherlands, but not so ill that they must relocate to a nursing home, it is typical for them lo stay on the ground floor in a bed or hospital bed situa ted in the den or sitting room overlooking-lor those who can afford this coveted space-the back garden. Rarely did I ever see seriously ill family members sequestered in the privacy of an upstairs bedroom. Instead, ill family members slept on the ground floor. keeping them central within intimate family space and just beyond the reach of the semi-public front rooms of the home. The follow­

~ ~-~

FIGURE6.2 Photo by Nicole Marshall, printed wil h permission.

98 l!RANCIJS NORWOOD

ing vignette introduces public and semi-public spatial practices around theI i Dutch window. demonstrating how some Dutch people use open window

culture as a spatial practice related to aging and living with chronic illness in the home.

Through the Dutch Window. One moming on a house call with Kees, a home­ care nursing assistant. we visited one of my favorite Dutch families. This family. not exactly typical of many I visited, highlighted in exaggmrtedform several key aspects of famUy life 111 relation to the Dutch window. Myjirst l11dicatio11 Urat this might not be the typical Dutch home a11d family came 011 our bike ride up to the house. Kees tells me as we pull up and park our bicycles that this is one of Ills “zwaar {literally. heavy} addresses.” I co11template what that might mean as we walk up a11d I see a woma11, probably in her fifties, smoking a cigarette outside tire front door. Site lets us In. Mr. cmd Mrs. w111 der Vries, the 111a11 a11d woman of tlte house a11d I.Ire reason for our visit, are sraird wit It family arulfrtends around tlreir dining room table, wlriclr ls situated facing the large front wi11dow of their lrome. Mr. Wiil drr Vrirs, in his nineties, is 110 longer able to mow around on his own. but likes to participate in tire activities of tire home. He has been getti11g pressuri· sores where ltis wherlchair supports his kgs a11d Kt•es is here to clu111{J<‘ Iris lC’g bantlt1g<‘S.1 and drl.’SS his open wounds. Mrs. van der Vrll’S is still mobill’ but has bem gett111y

l some swrl/1119 i11 h<•r legs. We walk up to the dining room table. wltere Mr. a11d Mrs. van der Vries a11d

sewml of tlrrir friends are seated with a direct siylttline of tire street. The Wi11tloiv. I note at tlie time, is almost like a11 interactive television, wltlr moving people a11d Images that the room’sixirtlcipw1ts watch. Every now and t/1e11 tire winclow-tell’vi­ s/011 talks bark as someOlll’ in tire room po/11ts out a neighbor and they <‘Xrlwnae waves just a few yards from each other. medlatt’d only by the glass of the wi11dow. A radio is blaring and Mrs. m11 der Vries is swaying to the music as site rat.cites up 011 the latest gossip with lter frie11cls. Mrs. 1•a11 der Vries asks where I amfrorn as Kees gets to work on Mr. va11 der Vri<‘s ‘ biggest wound. Mr. van der Vrirs says “ow. ow, ow” as Kees rrmoves the bandages and I /rear the• woman who Jet us In call somro11r a “trul {a bitch].” l introdrict’ myself as a researcher from the U.S. and Mr. va11 <Irr Vries says. ‘llh, you arefrom America,”and “that’s good because Americans helped liberate Holla11d after The War.” Another w11ma11 mters from tire street and again I am introduced as the American. Mr. van tier Vries is turning 1ti11ety-two tomorrow a11d tlrey are planning his blrtlrday party. I help Kees measure the size of the pres­ sure sore (it’s 9otte11 bigger). Kres then bandagl’s Mr. van der Vries’ leg and checks the swelllrtfJ 011 Mrs. van rler Vries’ lrgs before we prepare to 90. ‘I’lrl’ radio ls blarl119 and as we leave Mrs. va11 tier Vries raiSC’s a lia11d to wave to a passerby on tl1r othl’r side of the 111i11dom

The van dcr Vries vignette is an exaggerated example of how Dutch people use their windows. Their window behavior was out of the ordinary. not because I hey were using llw window as a means to view and comnwnt on their ncighhors. but lwn111st• llwy made it 11lwio11s whal fhl’V \W11· doing.

/\WINDOW l”ITO DUTl’H LIFTI /\N I> DRATH 99

By arranging their chairs and the dining room table to face the street. they violated the unspoken rule of the Dutch window: to look but not engage (Vera 1989: 223-4). Most elderly people I visited would have their chairs positioned so they were not facing the street, but cattycorner to the window (sideways but facing slightly into the room). thus appearing to visitors and passersby as if they were just going about their own business. Rooms in nursing homes (spaces I came to think of as arranged to re-create the ideal­ ized space of home) were typically decorated with furniture from home and almost always included one or two upholstered chairs situated cattycorner to the large picture window that orten overlooked a canal or pond. When elderly residents were not in bed. this sitting space was often where the doc­ tor and l would find them. But just as the Dutch window allows those out­ side the home to unobtrusively observe within, those outs ide quickly learn that they too are being watched. £ remember one house call. for example. in which the woman we visited pointed out that she had put her teeth in when she saw us come up the walk. indicating to me that our approach to the house bad not gone unobserved .

Looking at window culture as a spatial practice suggests that across the life course the Dutch public is poised to enter the home in various ways. Window culture communicates a collective ideal. where Dutch participants both pul their “private” home life on display for others to witness. and in turn hold their neighbors surreptitiously accountable for their own displays in the public and semi-public space of street and front home. Dutch people m<1y also transform this structuring clement of Dutch life by adapting or re­ sisting window culture. Por some, this means choosing not to participate in open window culture. letting private be private. for others. like the van der Vrieses. this means using window culture for their own altered purposes. Discussion: Later Life Considerations

For persons who are elderly and aging in the Neth erlands, window cul­ ture offers a type of public contact at a time when they may be less able to participate in biking, boodschappm (errands), and other hobbies and activi­ ties outside of the home. While loneliness remains a factor. especially for those who become isolated in nursing homes or from family and friends (Horst 2001: 230). “public” enters the Dutch home not just through the window, but also through a vast system of social welfare and healthcare policies. Thuiszorg, the national Dutch Homecare Agency, offers nursing and personal care in the home up to four times <1 day on a sliding scale fee or free of charge to those who cannot afford it. Homecare services available through Thuiszorg include assistance with medications, meals, wound care, incontinence, self care, home modifications. and housekeep­ ing. Overnight rcspilc. where a pcrsonc1l care attendant slays overnight to giw lht• 1’11111il.v ;i cl1<11H’l’ lo sleq1. is also availahle. In addition to nursing ;111d P<‘l’so11al t·• 111· .i111·111la11ls. ‘””llt’lill prarlilio1wrs lrnvc a long-slanding

100 l’l\ANCES NOHWUOO

tradition of house calls. According to my research, on average seven out of twenty-eight patient visits by Dutch general practitioners each day are house calls to the home or nursing home (Norwood 2009: 131). The Dutch public enters the borne to such an extent in the Netherlands that one of the most frequent complaints I heard from families was of too many “strang­ ers” in the home. referring to the number of visits by home health employ­ ees near the end of life.

Another key way the Dutch public enters the home is via euthanasia policy. The Dutch government legalized euthanasia and assisted suicide by courc decision in 1984 and by law in 2002. Since 1984. Dutch citizens have had access to assistance in dying and the majority of people (87 percent) wbo choose euthanasia receive it in the home or nursing home (Onwu­ teaka-Philpsen et al. 2007: 99; Griffiths. Weyers. and Adams 2008: 16 7). 1

The following section describes what happens when the Dutch public enters the borne in the form of spatial practices around requesls for euthanasia.

FIGURE 6.3 Photo by Thi! Lapikas-van Schothorst. printed wil h pc rill i”sic 111.

A WINllOW INTO llll’l’l’H Llrll AN11 DP.ATll 101

Euthanasia and Dutch Privacy at the End of Lifc

For someone with a serious illness or a terminal prognosis. it is not uncom­ mon for euthanasia to be considered as an end-of-life option. but only rarely does it occur as a life-ending act. In 2001. the final year of my study. nearly 2 5 percent of persons who died initiated euthanasia discussions. yet only one in ten who initiated discussions died by euthanasia or assisted suicide. Compared to the number of people who die each year in the :\etherlands. the percentage of euthanasia deaths is low. In 2001. approximately 2.8 percent of all deaths (3,931 persons) could be attributed to euthanasia or assisted suicide and in 2005 that number dropped to 1.8 percent (or 2,455 persons) (Onwuteaka-Phillpsen et al. 2007: 100). Discussion: Later Life Considerations

What has evolved from end-of-life policies in the Netherlands is a practice that is largely based in talk- a discussion that rarely ends in a euthanasia death. “Euthanasia talk” is frequently invoked at the end of Dutch life, fill­ ing in the spaces left by the lost or diminishing ability people have at the end of life to participate in social life outside of the home. The Dutch home at the end of life Is already full wilh the presence of the Dutch public with home­ carc employees and home visits by general practitioners. But once euthana­ sia talk is invoked. the Dutch public presence in the home increases-with frequent home visits and discussions orchestrated by the general practitio­ ner with patients and their families around a person’s request for euthana­ sia (Norwood 2009: 30).

Euthanasia occurri ng largely as a talk-based practice is not unusual in a country that emphasizes a collec­ tive ideal. The Dutch have a practice that they often use for collective deci­ sion making, called overleg. Overleggen means “to consider. consult. or confer” (Hannay and Schrama 1996: 609), but the literal translation of the word docs not adequately describe the nu­ ance and the prevalence or this prac­ tice in Dutch life. Prom the office lo social groups. overleg is a commonly used practice for consensus building and decision making (Norwood 2009: 42). When euthanasia talk is initiated. the role of the physician increases murk(•dly as physicians use cuthana- Pho10 by Frances sia lall-. f111·sfoiblish wlwllll’ru palit-nf’s Norwood.

102 l’RANCl:.S M>RWOOO

request meets the requirements for due care.4 But in addit ion to its most obvious purpose-planning for an assisted death-patients. families, and physicians a lso use euthanasia talk to negotiate Dutch ways of living in the midst of dying. At the point where most medical interventions stop. eu­ thanasia talk endures. maintaining and extending social connections and social roles even at the end of life. The following vignette shows how the Dutch public enters the home at the end of life in the form of euthanasia talk.

Euthanasia Talk. I met Mrs. de fo11g at tlw begim1ing of my study. She was a11 82-year-old widaw living at home alone with thr help of Thuiszorg and her daugh­ ter and granddaughter who visited frequently. The year before we met, Mrs. de jong had fallen a11d was take11 to the hospital where doctors ding11osed her with cancer of tile lower i11testines amf liver a111l rm arwury.~m (a blockagi’ in her aorta that was growing a11d as it grew pushed 011 her esophagus making it i11creasi11gly difficult to swallow). Her general practitionl’t; Dr. Westerman, explained to me that her can­ cer was inoperable at this point a111l lter a11eur11sm could burst at any time. which woultl probably result In afairly peaceful tleatlr. Uritil tlre11 site would be trc•atedfor increasing pain and discomfort from tire pressure 011 her t•sopha9us and as a result of her cancer. When I met her i11 September 2000, she was i11 some pai11, had not been able to eat or drink for several weeks, and was losing weight. At tJ1at tim1• she asked for eutlw11asla from Dr. Westerman. explaining to us that “t/1ere is11′( auything to be happy about anymore” and that she ;’can’t do anyt11i11g for people auymore. “‘ Her life had become 110 lo11ger meaniugful to hrr and she worrircl about being a burden on her daughter. Sire wns in pai11 a11d she was tired. For three weeks, Dr. Westerman, Mrs. de Jong, and l1<•r adult dauy/1ter talked about /Jrr c•utha11asla request. Mrs. de Jo119 put her request i11 writi119, making a formal t•utha11asia dec­ laration that. like all the other requl’sts I saw. \\'<IS also slg11etl by famllu members. /11 this case, ha daughter. She had to raise tire request several times before her doc­ tor proceeded lo schedull’ an appoi11t1111’11tfor a secorul op/11/011. Thi’ serond tlrJl’tor agreed to tire request and a date for her eut/Jauasiu death was scheduled, but like most eutha11nsia requests the euthanasia death did not happen. On the dau of her srl1eduled death, Mrs. de Jong’s daughter asked lier mother to cancel It, explaining that she was 11ot ready to lose her mother. Mrs. tie jong agreed. Discussion: Later Life Considerations

I visited Mrs. de Jong and her daughter 01•er the course of the year following her canceled euthanasia request. She was able to eat again, but it was dlfficult, and she often complained of palrr (for which shr mc•lved morphine), benauwdheid (a word for both emotional a11xiety and a p/Jyslral tightness of the chrst, for which s/1e received PrOU1c), and of being just plai11 tired (for wliich there was 110 cure). Dr. Westerman and l v/sitetl one day tofind Mrs. de Jong sitting i11 the upholstered cllair in t/11> front window of the hot1s<~; the slldl11g doors to her makeslilft l1edroom overlooking the back garde11 wlil’r<‘ we normally visited her were closed. I lrad 11ever seen Mrs. d<• fo11g sillillff llfJ beforl’, but Dr. \i\tsterman told me afterwards that she

I did tlrat wlft•n slw w11s11’t firl’d. Tlwn• slrr 1wrs with Ira small frame 1wrdwd i11 tlll’ I

clr11i1; lwr li11/1/, ll’iSf’!I 11my h11ir 11111/ .~111mi1111 fol\’/,,, Shi’ imrill’lf 111111/J~1•/1111•f.111111/i1111t

A Wr’lr)(l\V 1”-TO DUTCH l.ll’B 1\NO Dll1\TH 103

smile as she and Dr. Westerman flirted back arid forth over niceties. Dr. Westerman, an older gmtlema11 with a pln!Jful manner. had a great way with many of his pa­ tients and Mrs. cle jong was no exception. “How are you feeling,” Dr. Westerman asks. “I lzave t.errlble benauwdheid.” shr says. and “have been very tired.” /Jr. Westerman wants her to show him how she uses her new inhaler. whidi is sitting next to her pack of Camel cigarettes 011 the table at her side. Sire obediently de111­ 011strates for him liow she uses the inhaler cmd Dr. Westerman shows her how to take deeper breaths with it. He mentions the cigarettes a11d that they arc not good for her: she says. “Yes, I know you have to say that.” She says she just plays with the clgarrtte arrd does11’t really /11/tale. Dr. Westermari SO!JS, “Show me,” a11d she picks one up arrd //girts it like a11 old-time smoker, t<1kl119 one draw, then another. Dr. Westerman says, “You’re inhaling.” “Really?” she asks. Tlie doctor listens to lier lungs with his stetlroscope, then pops a sooepje (candy) inlo his mouchfrom the jar by lier chair and offers one to me. So, you had a question for Mrs. de Jong, he says, turning to me. “Yes,” I say. “I was wondering If you are okay witli your decision not to go througlt witli euthannslai” “Ja.” she says. “I do regret not going tliro11glt willr it, es1><•cinlly at night wl1en I am miserable and wish I were dead. But when my gra11dda119hter and my family visit, it is 1U]Jere11t.” “Then” slie says, “I am IWfJtJ!J wilh my decision.” Discussion: Later Life Considerations

The prctctice of eu thanasia r uns deep at the end of Dutch life and much of what it isl cannot begin to touch on in this short chapter.~ Focusing on euthanasia talk as a spatial praclice, however. I can at least say two things. First. the Dutch have deeply embedded cultural practices for home death. which even in the private spaces in the back of the home arc firmly perme­ ated by the public domain. Dutch people for the most part do not die alone. Prior lo the end of life. Dutch people live with their home lifo on display to the larger community. As people gel sick and approach end of life. how­ ever. they often shifi from the semi-public rooms in the front of the home to the rooms at the back of the home. but they almost always stay on the main Ooor of the home in the center of communal family space. Of all the homes I visited. in only one did I find someone sleeping on the top floor of the home. sequestered in a bedroom away from the daily flow of family life. When euthanasia is invoked, the Dutch public enters the home in the form of the general practitioner, who orchestrates family meetings and repeated doctor-patient discussions around the request for euthanasia. This means that even when planning for an early departure from life. the Dutch have created a practice that emphasizes and maintains social connections and social supports. Discussion: Later Life Considerations

Through euthanasia talk and euthanasia deaths, Dutch people have produced a spatial practice, just like de Certeau’s “walker,” that alters and transforms end of life. For the one in ten each year who request euthanasia and do. in li1d . dit· hv l’uthanasia in tlw Netherlands. ind ividua ls hnvc found a WilY fo ww puhli<‘ 1·11tha11asia policy ;111d pr;1cli(‘(‘S lo :rlhT tlw tirning and

104 ~RANCES NORWOOI>

course of death. Medical sociologist Clive Scale suggests that euthanasia is a social response from dying persons who wish to have the biological deatb of the body more closely coincide with the death of the social being (Seale 1998: 7-8). But the fact that most people experience euthanasia as talk suggests that there is more to euthanasia than simply a realignment of the timing of death for the social and physical bodies.

For Mrs. deJong. like many who engaged in euthanasia talk. her ultimate decision was to live with the understanding that euthanasia remained an option. Por her, the choice to remain living was rooted in her connection to family-her daughter and granddaughter. Yet, through her standing request. she had something she needed-an emotional insurance policy of sorts. an “out” in case the su ffering became too great or her daughter’s stance against her request changed. Discussion: Later Life Considerations

The consequ ence of how euthanasia talk has emerged is powerful. ln 1· spatial practice. euthanasia talk, even when it does not end in euthanasia 1; death. offors dying persons an alternate route through end of life. For the

dying person. euthanasia talk offers a way to emotionally manage fear, un­;: certainty, and isolation caused by the often-chaotic course of an end-of-life illness. It gives all participants (patients. families, and physicians) an active

jl

t\ I role at a time when roles are often at best unclear and at worst diminishing.

Euthanasia talk offers an ideal image of death that can be used by fami­

·’ lies to manage the difficult realities of daily decline and loss and to realfirm family and societal connections. Ultimately, eutha na sia talk ha s emerged as a practice that affirms and maintains social bonds. keeping people con­ nected to Dutch life even as they die at home. From the window to eutha­

I’• nasia policy, the Dutch public enters the home and with these tools. Dutch I people alter, transform, and push against biological and social forms or life l I and death. I This transformation of end-of-life through euthan asia policy serves as a

modern-day response to the intrusion of culture. The act of euthanasia is, in essence. where Dutch society ha s been able to take illness back from cul­ ture to restore some semb lan ce of a “natural” ideal. Working against the preponderance of medical interventions and technologies typical of end of life around the world (Brodwin 2000: Kaufman 2005), Dutch people have been able to reclaim end of life from sterile h ospitals and intrusive medical in terventions. Euthanasia policy in the Netherlands has allowed the Dutch to replace the image of an isolating. highly medicalized trajectory with an ideal image where family members are assembled bedside in the home and the loved one slips painlessly into death with the help of the physician. The fact that euthanasia deaths rarely occur in reality docs not seem to matter. But while this image may be bilsed on a “natural~ idl’al wltn1· rnachi1ws and inll’rwntions do not drnninah’ llw end of lite” 1lw ad 111′ 1·11fh;11wsia

J\ Wll\llOW !fl.TO DUTCH l.ll’ll ANO UliATll 105

clearly ls not natural. It is more than simply unplugging machines and withdrawing interventions; it is replacing one cultural intervention wilh another.

fn the Dutch home. illness, aging, policy. and culture strike a delicate ba l­ ance belweeo public and private. Constraints of chronic illness and disease dictate a transition of individuals from semi-public space in the front of the home to more private space in the back of the home. But for those who die at home in the Netherlands, it is rare for someone to truly die alone. Even at the end of Dutch life. sociality to some degree is maintained and there exist choices even among the constraints imposed by the end of life. Discussion: Later Life Considerations

Acknowledgments

Funding for this research was provided by the University of California­ San Francisco. University of California-Berkeley, the Netherland-Ameri ca Foundation. and the American Association of Netherlan<lic Studies.

Notes

l. In 2003. approximately one third of all persons who died in the Netherlands that year died in the hospital: more than one-quarter died at home and one-fiflh died In either a residenlial/nursing, elder care, or acute care nursing facility (vrrzory­ l11ysl1uis, lx-jaarde11/111is, or i•erpleeglmis). The remaluing died in other locations (CBS 2004). ln contrast. in 200 I. 57 percent of AmcricaJJs died in hospitals. 20 percent died at home. and 17 percent died in nursing homes (Brumley 2002). Discussion: Later Life Considerations

2. This chapter Is the result of a fifteen-month study of euthanasia and home death in the Netherlands between J. 999 and 2001 that included observation and fit:ld­ based interviews with 15 physicians (13 general practitioners and 2 nursing home physicians) and 650 of their general population patients based In Amster­ dam and in a cluster of small towns outside of Amsterdam. Observations with physicians occurred in the physician’s office and on house calls to the home and nursing home. including acute-<:are facilities (verplughuizm). nursing homes (ver­ zor9ingsh11Ize11). elder-care facilities (bejaarde11/mlzr11). and independent living situ­ ations (aa11/euni11gwoni11g). Intensive case study research was conducted with ten general praclltioners and twenty-five of their end-of-Ille patients (fourteen with euthanasia requests and eleven without). Case studies included multiple observa­ tions. interviews (audiotapcd and not taped) with patients. family members. close friends. physicians. and borne care employees over the course of the study. Jn ad­ dition. observation was conducted with Amsterdam Thuiszorg, the national Dutch home care nrµanizalion. and interviews were conducted with more than thirty­ lht• t•x 1x·1 ts in I >111d1 n1lt11n· aml end-of-life care. For more on the origlnal study, Si’\’ N111 ‘ \\01111d >1111•1

106 PRAl\CP.S NORWOOD

~. In 2005. general practitioners carried out 87 percent of all euthanasia deaths in the Netherlands (Oowuteaka-PWlpsen et al. 2007: 99; C:rilliths, Weyers. and Adams 2008: 167). General practitioners work in the home. nursing home (vtr.orgingslruls). elder-care racllity (bejaardn1l111is). and independent living situ­ ations (aanleunl11gwo11i11g). They do noc Cypically work In acute-care facilities (ver11Ieegh11ize11). Discussion: Later Life Considerations

4. According to the 2002 TPrml11alio11 of Lift 011 Request and Assisted Suicide (Review Procedures) Act (Article 29 3. 294. 40). euthanasia and assisted suicide must aJ­ ways be performed by a physician who (a) holds the conviction that the request by the patient was voluntary and well-considered: (b) holds the conviction that the patient’s suffering was lasting and unbearable; (c) has Informed the patient about the situation he was in and about his prospects: (d) the 1>atlent holds the convic­ tion that there was no other reasonable solution for the situation he was In; (e) has consulted at least one other, Independent physician who has seen the patient and has given his written opinion on the requirements of due care. referred to lo parts a-d: and (I) bas terminated a llfo or assisted in a suicide with due care. Discussion: Later Life Considerations

5. Maintaining a meaningful role in life is a key aspect that dominates what patients talk about at the end of life. ror a discussion of bow older adults find meaning and a sense or “mattering” through doing things for others. see also Lynch in this volume.

6. For more on euthanasia and how it is practiced in the Netherlands, see Norwood 2009.

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