Social Science & Medicine 101 (2014) 86e93
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Discussing dying in the diaspora: Attitudes towards advance care planning among ﬁrst generation Dutch and Italian migrants in rural Australia Craig Sinclair a, b, *, Jessica Smith a, b, Yann Toussaint b, Kirsten Auret a, b a b
Rural Clinical School of Western Australia, Australia University of Western Australia, Australia
a r t i c l e i n f o
a b s t r a c t
Article history: Available online 23 November 2013
Western cultural practices and values have largely shaped advance care planning (ACP) policies across the world. Low uptake of ACP among ethnic minority groups in Western countries has been interpreted with reference to cultural differences. This paper adopts a life-history approach to explore attitudes towards ACP among older, ﬁrst-generation Dutch-Australian and Italian-Australian migrants. Thirty people participated in extended ethnographic interviews (N ¼ 17) and group discussions (N ¼ 13) during 2012. Transcripts were thematically analyzed and interpreted using a Foucauldian perspective on knowledge and power. Migration experiences, ongoing contact with the native country and participation in migrant community support networks inﬂuenced attitudes towards ACP. Dutch participants framed ACP discussions with reference to euthanasia, and adopted a more individualist approach to medical decision-making. Italian participants often spoke of familial roles and emphasized a family-based decision making style. The importance of migrant identity has been neglected in previous discussions of cultural factors inﬂuencing ACP uptake among ethnic minority groups. The unique migration experience should be considered alongside culturally appropriate approaches to decision-making, in order to ensure equitable access to ACP among migrant groups. Ó 2013 Elsevier Ltd. All rights reserved.
Keywords: Australia Advance care planning End-of-life Cross-cultural Migration Foucauldian
Introduction Advance care planning (ACP) is a process of ongoing reﬂection and communication between patients, health professionals and family members, aimed at ensuring that medical decisions made on a patient’s behalf are in line with their wishes (Sudore & Fried, 2010). This encompasses both informal discussions about a patient’s values and beliefs, and the use of legally binding advance directive (AD) forms, which document speciﬁc treatment preferences and/or proxy medical decision-makers. These treatment preferences often specify a patient’s desire for withdrawal or withholding of life-sustaining therapies (such as invasive ventilation) in the event of a terminal illness (Nishimura et al., 2007). The process of ACP has been promoted as a means of upholding patient autonomy in end-of-life care (Bito et al., 2007). Western countries in which individual autonomy is highly valued have typically been the ﬁrst to enact legislation supporting a patient’s
* Corresponding author. M701, Rural Clinical School of WA, University of Western Australia (Albany Centre), 35 Stirling Terrace, Albany, WA 6330, Australia. E-mail address: [email protected]
(C. Sinclair). 0277-9536/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.socscimed.2013.11.032
right to use AD forms to request the withdrawal or withholding of medical treatments (Gysels et al., 2012; Johnstone & Kanitsaki, 2009). In the United States the Patient Self Determination Act requires that patients be informed on admission of their right to use ADs and to refuse medical treatment (Galambos, 1998). In Western Australia, legislation supporting ACP was enacted in 2010. The Advance Health Directive (AHD) allows a person to specify their consent or refusal of consent for future medical treatments (Department of Health WA, 2010). The Enduring Power of Guardianship form (EPG) enables a person to nominate a health care proxy to make health and lifestyle decisions on their behalf (Ofﬁce of the Public Advocate WA, 2010). Research has shown that facilitated ACP can improve the quality of end-of-life care, resulting in beneﬁts including improved patient satisfaction and reduced psychological morbidity among bereaved family members, without leading to increased mortality (Detering, Hancock, Reade, & Silvester, 2010). While research suggests the utility of ACP in improving the quality of end-of-life care, consistent ﬁndings from the United States have shown that white Americans express more positive views towards ACP, and are more likely to complete AD forms, than are minority ethnic groups (Blackhall, Murphy, Frank, Michel, &
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Azen, 1995; Morrison, Zayas, Mulvihill, Baskin, & Meier, 1998; Perkins, Geppert, Gonzales, Cortez, & Hazuda, 2002; Werth, Blevins, Toussaint, & Durham, 2002). Comparative research across four European countries has shown lower rates of discussion about treatment preferences between patients and doctors, and lower rates of nominating proxy medical decision-makers, in southernEuropean (Italy, Spain), compared to northern-European (Belgium, Netherlands) countries (Evans et al., 2013). A number of authors have suggested cultural factors in explaining these discrepancies (Searight & Gafford, 2005; Werth et al., 2002). Culture has been deﬁned as “the values, beliefs and behaviors that a people hold in common, transmit across generations, and use to interpret experiences” (Perkins et al., 2002, p. 48). Of particular relevance to the topic of end-of-life care are the cultural constructs of individualism and familism. Individualism has been deﬁned as the “socio-cultural beliefs and practices that encourage and legitimate the autonomy, equality, and dignity of the individual” (Greene, 2008, p. 117). Familism is deﬁned as “a set of cultural values that produce strong feelings of attachment to, and identiﬁcation with, individuals in the nuclear and extended family group” (Benedetti, Cohen, & Taylor, 2013, p. 42); and is characterized by a strong sense of obligation to family members, and deﬁning one’s own identity through relationships with family members (Almeida, Molnar, Kawachi, & Subramanian, 2009; Schwartz et al., 2010). Searight and Gafford (2005) suggest that cultural factors, such as individualism and familism, impact on end-of-life care in three key domains; the communication of bad news, the locus of medical decision-making, and attitudes towards advance directives. Cultures in which individualism is prominent tend to follow an ‘autonomy-control narrative’ (Gordon & Paci, 1997), typically prioritizing ‘truth-telling’ in diagnosis and prognosis (J. A. Low et al., 2009). Full disclosure is seen as a means of enabling informed patients to take a central role in medical decision-making (Gordon & Paci, 1997; Rietjens, van der Heide, OnwuteakaPhilipsen, van der Maas, & van der Wal, 2006). On the other hand, cultures in which familism is more prominent tend to follow a ‘social-embeddedness narrative’, in which autonomy is perceived as a burden (Gordon & Paci, 1997). This perspective emphasizes the potential for ‘truth-telling’ to be harmful to the patient (Blank, 2011), and tends to place a greater emphasis on family-based decision-making (Searight & Gafford, 2005; Werth et al., 2002). Attitudes towards advance directives vary across different countries, ranging from ideological support reﬂected in legislation, to an absence of any formal framework (Blank, 2011; Searight & Gafford, 2005). Support for advance directives is also motivated by different priorities; for example in Australia advance directives are thought to be consistent with the value of patient autonomy (Sinclair, Auret, & Burgess, 2013), while in Japan the beneﬁts of advance directives are framed with reference to their potential to reduce burden on families in end-of-life care (Bito et al., 2007). Cultural factors undoubtedly contribute to attitudes towards ACP. However, it is important to recognize that observed differences in response to ACP between ethnic minorities and the dominant culture will also reﬂect power imbalances between groups. Those who have experienced disadvantage on the basis of their membership of an ethnic group may understandably adopt an attitude of mistrust towards a range of institutions; indeed ethnic minority groups typically report less trust of health services (Johnson, Kuchibhatla, & Tulsky, 2008). Johnstone and Kanitsaki (2009) point out that ACP carries the implicit understanding that the ‘freedom’ allowed to patients is that of forgoing, rather than increasing, medical care. We argue that reactions of mistrust towards ACP do not qualify as cultural traits just because they are associated with membership of a particular ethnic or cultural group. Rather, mistrust of ACP amongst ethnic minorities should be understood within the context of embedded relations of
power and the sensitivities engendered by individual and communal histories of being ‘other’. The work of Michel Foucault, with its emphasis on notions of governmentality, biopower and control, provides a useful frame for analyzing the experiences of ethnic minorities in societies such as Australia. In regards to health (Petersen, 1997), education (Dwyer, 1995) and other institutional power structures, minorities have had to simultaneously accommodate and resist pressures to ﬁt in, to be the ‘docile bodies’ preferred by the modern nation state (Foucault, 1995). Within the health sphere, Foucault’s concept of ‘biopower’ has the greatest relevance to understanding the concerns of migrant communities surrounding ACP. Biopower entails the “explosion of numerous and diverse techniques for achieving the subjugation of bodies and the control of populations” (Foucault, 1998, p. 140), though perhaps it is more usefully understood as the ways in which the nation state co-opts citizens into managing their health, and that of others, in the interest of the state. This is particularly true given the history of migration to Australia, where the medicalization of ethnic difference was entrenched in ofﬁcial discourse. The controversial ‘White Australia’ policy, predicated on the grounds of British physical and mental superiority, and the belief that acceptance of non-British migrants would result in the introduction of disease and, in the event of intermarriage, genetic ‘weakening’ of the Australian population, was only slowly dismantled (Bashford, 2002). Indeed until well after World War II, northern-European migrants were preferred over southern Europeans, who were in turn preferred to migrants of non-European ethnicities (Peters, 2001). For migrants arriving during the immediate post-war period, the legacies of this rhetoric, alongside their knowledge of the monstrous exercise of biopower during the Holocaust and attendant atrocities, had profound implications for trust in government and associated institutions and for their own self-perception (e.g. Hodges & Schmidt, 2009). Today, Australia is a culturally diverse nation, with over seven million migrants, from more than 270 ancestral groups, having arrived since World War II (Australian Multicultural Council, 2013). A signiﬁcant and growing proportion of Australian health service consumers come from culturally and linguistically diverse (CaLD) backgrounds. The growing reliance on internationally trained medical professionals, particularly to service rural areas, has further reduced cultural concordance between patients and doctors (Spike, 2006). It is likely that a growing number of discussions about ACP are taking place in the context of cross-cultural doctor-patient interactions, signaling the need for a coherent body of research, which can guide best practice in this area. Dutch and Italian migrants arrived in Australia in large numbers during the 25 years following World War II (Ugolini, 1992). Many settled in rural areas (Dade-Smith, 2007), and the majority of these ﬁrst generation migrants are now approaching old age (Ofﬁce of Multicultural Interests, 2006). Of the 5.3 million overseas born residents in Australia, just over 1 million are over the age of 65, and of these 3.5% and 10.8% are Dutch and Italian born, respectively (Australian Bureau of Statistics, 2013). Given the marked differences in approaches to end-of-life care across countries in Europe (Evans et al., 2013; Gysels et al., 2012; Menaca et al., 2012), and the lasting inﬂuence of the native culture on migrant attitudes towards ACP (Bito et al., 2007), it is likely that Dutch-Australian and ItalianAustralian migrants will maintain different attitudes to ACP. The Netherlands is characterized by legislation supporting advance directives and euthanasia, suggesting relatively open attitudes regarding patient preferences in end-of-life care (Rietjens et al., 2006). Italy does not have clear policies relating to end-of-life care; ADs and next-of-kin are not legally recognized in the event of a patient’s incompetency (Maggiore & Antonelli, 2005; Menaca et al., 2012; Servillo & Striano, 2008).
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In addition to differing cultural factors, some factors are experienced similarly by migrants from different nationalities, and may impact on attitudes towards ACP. More than a quarter of older migrants from CaLD backgrounds experience language difﬁculties (Orb, 2002). Even among migrants who are proﬁcient Englishspeakers, reversion to the native language associated with aging or dementia is not uncommon (L. -F. Low et al., 2009); this has been speciﬁcally documented among the Italian-Australian migrant population (Benedetti et al., 2013). Language difﬁculties can prevent effective doctor-patient communication (Henderson & Kendall, 2011; Morris, Popper, Rodwell, Brodine, & Brouwer, 2009) and may make ACP difﬁcult. Migration often results in the fracturing of family units; the resulting lack of family support can hamper health service engagement (Scheppers, van Dongen, Dekker, Geertzen, & Dekker, 2006) and may constitute a barrier to ACP (Sinclair et al., 2013). Stories and experiences of ethnic discrimination in health institutions can lead to mistrust (Scheppers et al., 2006) and unwillingness to engage in ACP (Johnstone & Kanitsaki, 2009). A burgeoning literature has documented the continuing globalized context in which aging, and end-of-life care, are experienced (Schwanen, Hardill, & Lucas, 2012). Contrary to the assumption that the ‘spatial worlds’ of the elderly contract and that dying is a local phenomenon, this literature illustrates how global perspectives and ‘trans-national care-giving’ inﬂuence decision-making for elderly migrants (Baldassar, 2007). It may be that the experiences of migration can provide insights that help us understand the approaches to medical decision-making, and attitudes towards ACP, expressed by people from ethnic minority groups. In this study, we investigate the experiences of Dutch-Australian and ItalianAustralian migrants, whose cultural backgrounds have been proposed to emphasize ‘individualism’ and ‘familism’ respectively (Benedetti et al., 2013; Meeussen et al., 2011). We ask how a lifehistory approach can help us understand the interaction between experiences of migration and cultural background, and how this informs present attitudes towards ACP, among older, communitydwelling, ﬁrst-generation Dutch-Australian and Italian-Australian migrants. Method The University of Western Australia Human Research Ethics Committee approved the study protocol. Design Foucauldian perspectives on health, knowledge and power (Foucault, 1973, 1980; Philo, 2000) informed the study design. A life-history approach was employed to explore participants’ cultural backgrounds, experiences of migration and attitudes towards ACP (Hodges & Schmidt, 2009). We initially envisioned a design centered around in-depth ethnographic interviews with individuals. However one group of Dutch migrants associated with a local church group requested participation in a group setting. The data from this group discussion were retained, to reﬂect the perspectives of a well-established ethnic community group, who are prominent within the study region. Sampling Thirty older adults (aged 61e90 years) who migrated to Australia from the Netherlands or Italy between 12 and 64 years ago, consented to participate in the study during 2012. Dutch and Italian community representatives in the study region assisted in identifying eligible participants and introducing the researchers.
On the advice of community representatives, study information was presented in English to the Dutch community, and in both English and Italian for the Italian community. An Italian community representative assisted in contacting potential participants by phone, and explaining the study in Italian where required. Participants were given the option of having a family member and/or trained interpreter present. Four Italian participants requested having an interpreter present. Protocol Before beginning the discussion relating to ACP, the interviewer gave a brief explanation of ACP, and the relevant legislation, answering questions raised by participants. Questionnaire items developed by two of the authors (CS, KA) were used to elicit demographic details (see Table 1) within the context of a broader lifehistory which included open-ended discussion about the time and reasons for migration, and experiences of re-settlement in Australia. A semi-structured discussion guide (Appendix 1) was then used to explore participants’ previous awareness of ACP and attitudes towards ACP, including any factors that might constitute barriers or facilitators, within their cultural context. Interviews ranged from 20 to 65 min in length (M ¼ 41 min). All participants conducted the majority of their interview in English, however an interpreter provided translations where necessary. Digital recordings of the interview and group discussion sessions were transcribed verbatim. The interpreter listened to the recordings from Italian participants and provided verbatim translations of any sections of text spoken in Italian. Analysis The main interviewer (CS) and a research assistant (JS) read and independently coded the transcripts for thematic content, using NVivo, and Microsoft Word software. During early stages of analysis the authors employed a descriptive approach, aiming for close links between the data and the codes used to describe them. Joint discussion of these codes led to consensus on an initial coding framework. Sections of text relating to individual codes were grouped and read horizontally (Gardner & Chapple, 1999) to ensure the integrity of each code; codes were merged or unpacked where necessary, and then categorized into higher order themes. Later stages of analysis adopted a more interpretive approach. The inﬂuence of cultural factors on attitudes to ACP was explored through comparative thematic analysis, examining the transcripts from Dutch and Italian participants separately. The inﬂuence of migration experiences on attitudes to ACP was explored through analysis of the entire set of transcripts. Patterns identiﬁed within the data were reﬁned through explicit searches for disconﬁrming evidence, and interpreted in the context of key Foucauldian concepts, as well
Table 1 Participant characteristics by nationality. Characteristic
Dutch (n ¼ 21)
Italian (n ¼ 9)
Gender (Women:Men) Mean (SD) age Mean (SD) number of years in Australia Mean (SD) number of years speaking English Number (%) who preferred to speak English at home Number (%) reporting religious beliefs Number (%) requiring assistance at home Number (%) with a driving license Number (%) hospitalized in the past year Number (%) with completed ACP documents
12:9 71 (7.6) 52 (13.6) 55 (8.4) 14 (67%)
6:3 74 (7.3) 52 (9.7) 53 (9.6) 3 (33%)
18 (86%) 1 (5%) 20 (95%) 7 (33%) 1 (5%)
9 3 8 4 1
(100%) (33%) (89%) (44%) (11%)
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as broader literature relating to migration, ethnicity and ACP. A community representative from each of the Dutch and Italian communities participated in interpreting the data, as a way of increasing conﬁrmability (Graneheim & Lundman, 2004). Results Table 1 shows key demographic and health-related variables, which characterize the study sample. The majority of participants from both nationalities (N ¼ 20) arrived in Australia prior to 1960. The principal differences between the groups related to language and religion. Dutch participants were more likely to report using English as their preferred language than Italian participants. A majority of Dutch participants (N ¼ 18) reported observance of religious beliefs (Reformed Church). All Italian participants (N ¼ 9) reported religious beliefs (Roman Catholic). In expressing attitudes towards ACP, participants drew on rich life-histories, which included stories of migration, settlement in Australia, comparisons of their native and host societies, and perceptions of their own health and health care. Key themes relating to attitudes towards ACP included ‘individualism and familism’, ‘migration and return’, ‘community support’ and ‘trust and mistrust’. Individualism and familism A number of Dutch participants expressed support for ACP when it assisted them to maintain autonomy in their decisionmaking, reﬂecting a generally individualist approach. “This [ACP] helps people to be a bit more in control about our body, about your health” [65 yr old, male, Dutch participant] Italian participants stressed the importance of family when expressing their views about end-of-life care. Compared to Dutch participants, they were more likely to endorse family members as having complete authority to make medical decisions on their behalf in end-of-life care situations. Well-deﬁned familial roles also provided a basis for adult children to become actively involved in making decisions about the day-to-day care or medical treatment of older family members. In some cases this was due to language difﬁculties experienced by older Italian people, however in other cases this style of organizing the care of the older person was explained with reference to a cultural outlook emphasizing familism. “.some people especially traditional Italians, ‘no I look after my dad, I don’t need to [use nursing home]’.the responsibility is in their [Italian] tradition, they have to look after mum and dad basically.” [85 yr old, male, Italian participant] Italian participants often stated that they thought ACP was redundant, as long as there were family members present to care for them. Strong trust in the integrity of traditional familial roles and connections between extended family members supported this approach.
that family members respect the individual wishes of the dying person. In this context, many saw ACP as a way for a person to clarify their healthcare wishes to other family members. “Because then you’ve got somewhere to go. and to say look mum or dad speciﬁed it like this. So you have your information ready in front of you.” [70 yr old, female, Dutch, group participant] Some Italian participants suggested that familism was particularly strong for migrants from more traditional rural areas of Italy, while those who migrated from the more urbanized north held views that tended towards individualism and placed greater value on personal autonomy. One elderly Italian lady with a chronic heart condition had engaged in a formal ACP process with her doctor, expressing a desire to not be put on life support if she was judged terminally ill. She felt that her desire for autonomy was inﬂuenced by her upbringing in the north of Italy. “.you will ﬁnd a big difference from my answer and the answer of people that come from the south of Italy. two different systems of life. the difference is not so much today probably. but at our time when we grew up a big, big difference in the system of life.” [82 yr old, female, Italian participant] While she had heard other (southern) Italian migrants express their wishes to ‘go quickly’ when it was their time, she was the only one who had talked with her doctor about her end-of-life treatment wishes. She also identiﬁed the stronger observance of traditional Catholicism among older migrants from southern Italy as an intersecting factor. “.it could be coming from you know as a Catholic. so still old fashioned you know what I mean that we are with your idea [of ACP] but only to an extent.” Her strong views about how she wished to be treated led to arguments with her more traditional husband and son. It took the support of her (non-Italian) daughter-in-law to ensure respect for her less traditional views regarding a range of health issues. “.my daughter-in-law took one look at my husband and my son and said ‘if that’s what she wants then that’s what she gets and why not?’ I never heard another word yes or no from that day from my husband or my son.” Migration and return Experiences associated with migration featured strongly in the perspectives of participants from both cultural groups, and in some cases appeared to inﬂuence attitudes towards ACP. Migration to Australia was typically identiﬁed as marking a signiﬁcant life transition, with challenges including learning a new language, developing new work skills, and adjusting to different views. One man, who had migrated relatively recently, spoke of how migration had inﬂuenced his attitudes towards ACP.
“My sister-in-law [lives] here and she got like three kids, nephews, niece you know and I’m sure that. someone will be there. Yeah so I don’t think I need to nominate who.” [73 yr old, female, Italian participant]
“.the people like we are who think twice before we do something and give up our whole life in Holland, after long life and go to another country that’s very precious and a very difﬁcult decision, and when you do that I think it’s already in your genes to cover yourself as good as you can, and I think this [ACP]. is good to have an extra sort of. safety net.” [65 yr old, male, Dutch participant]
Dutch participants also endorsed the important role of the family in end-of-life care decision-making, but expressed the desire
Italian participants spoke of return visits home, and several had undertaken such return visits speciﬁcally to care for elderly
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parents, while ensuring that their children were connected with family and learned Italian language and culture. In addition to the dislocation from family members in the native country, some participants talked of the impacts of migration on their immediate family in Australia, and how this inﬂuenced their attitudes towards ACP. One elderly Dutch lady talked of the ‘mother’s experience of migration’, and her struggle to stay connected with her children, who attended school and learned English quickly. She reﬂected that the combination of her children having more rapidly ‘integrated’ into Australian society, along with a deep understanding with her husband, led to her preference for nominating him as a decision-maker. “You know when the children, changed a lot when they get married. because in-laws come in and they’ve got different views. But like the children of course they know you but they don’t know you, they know you but they too busy.” [80 yr old, female, Dutch participant] While the majority of participants reported feeling settled in Australia, some talked of the possibility of returning home permanently in their later years. One older lady with few close friends and a single daughter for support talked of reuniting with family members in Italy, who she felt would care for her in her old age. One Dutch man told of having a number of illnesses and a strong connection to his native country. He perceived the Australian ACP legislation to be redundant, as it fell short of permitting euthanasia. He felt that he might consider returning to the Netherlands in the future, due to the availability of euthanasia. This intention was speciﬁcally framed as an alternative to staying in Australia and engaging in ACP.
membership was deﬁned along religious, as well as ethnic boundaries, and was also associated with a characteristic moral stance against euthanasia. “.we shouldn’t really have to write this down. Not with the principles that we’ve got. We’ve never done it with our parents that you had these sorts of things [ACP]. your biggest problem of course was with euthanasia, well that for us that’s black and white. You wouldn’t dream of it.” [68 yr old, male, Dutch, group participant]
Trust and mistrust Many participants expressed the idea that ACP required significant trust between the parties involved. For some this meant thinking carefully about which family members would be the most suitable to speak with doctors on their behalf. Notably, a number of participants expressed feelings of mistrust towards institutions, including hospitals and health services. Some participants expressed the fear that their difﬁculties in speaking English might make them vulnerable to mistreatment in hospital. One extreme example of mistrust was derived from knowledge of wartime experiences in Europe, and manifested in fears of profound abuses of power carried out by the state. “.I mean if that Government were to turn around like Adolf Hitler did during the second world war and say everybody over the age of eighty-ﬁve has to die. No matter what you write down in a living will or in an Advance Health Directive or whatever.” [67 yr old, male, Dutch, group participant]
“I must say if my wife would die earlier than I, ah, I would go back to Holland. [because of] the euthanasia thing. In Holland its completely legal and even without any problem you can have it arranged. so that’s why I will never be an Australian citizen. we want to have a little back door so we can always go back if need be.” [65 yr old, male, Dutch participant]
Dutch participants made numerous, unprompted references to the concept of euthanasia, and its legal status in the Netherlands. For participants who expressed negative views towards euthanasia, there were concerns that ACP legislation could be a ‘slippery slope’ towards legalization of euthanasia in Australia, or that ACP might eventually become compulsory.
The desire to return home was not universal. It was associated with enduring connections to the native country, preferences for a particular type of care that was unavailable in the host country, and a lack of family or community support networks in the host country.
“The laws may stipulate that you have a full [AHD] eventually, I reckon that’s the way it will go. It’s like everything else today. Eventually it will come that if you haven’t got a form they will put you in a box and forget about you. these forms, this sort of [thing] this is happening all the time.” [74 yr old male, Dutch, group participant]
Community support For the migrant participants in this study, ethnic communities provided extensive support beyond the immediate process of settlement. One participant reported that dislocation from her immediate family due to migration led to a greater dependence on community support, particularly associated with healthcare. “.my family is not here anymore. They’re all far away. So I have to have someone here to speak for me.” [90 yr old, female, Dutch, group participant] In some cases the support provided by ethnic communities took on a role similar to that provided by family-members. One Dutch group participant who mentioned a shortage of family support was reassured by other participants, who stated ‘we’ll look after you’. Belonging to an established community group led some to conclude that ACP was redundant for them, given their ability to rely on a strong network of support from people sharing similar values. For members of the Reformed Church, this group
Expressions of mistrust were typically associated with trepidation about engaging with ACP. “.but this part [AHD] I don’t want to be in it because I could be wrong but if, if I’m 50% bad and they need it maybe they will say that they can transfer, give that organ to somebody.” [64 yr old, male, Italian participant] Yet for others ACP was seen as a way of ensuring medical treatment preferences would be respected in the event of changing approaches to medical ethics. Thus, while Reformed Church members were generally less supportive of ACP than non-religious participants, mistrust in the changing mores of society led one man to observe “Whereas society changes and. they’ve left the laws of the Lord in such a way that ah, anything goes and doctors will make all kinds of decisions which are not good for you and therefore you are forced now to come and sign these sorts of [ACP] documents.” [74 yr old, male, Dutch, group participant]
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Discussion The older, ﬁrst-generation Dutch and Italian migrants participating in this study expressed diverse views towards ACP, which were informed by their cultural heritage, experiences as migrants and their personal family and health situation. The key themes expressed by participants are interpreted with reference to the documented cultural differences in their respective native countries, and literature relating to the experiences of migrants and ethnic minority groups. Dutch participants framed ACP discussions with reference to euthanasia, and adopted a more individualist approach to medical decision-making, which privileged personal autonomy. Previous research has suggested that individualism is associated with support for ACP (Menaca et al., 2012; Rietjens et al., 2006), while autonomy and self-determination are recognized as characteristics associated with Dutch culture (Cohen et al., 2006; Meeussen et al., 2011). The association between ACP and euthanasia may stem from the fact that many ADs in the Netherlands specify euthanasia (Rurup, Onwuteaka-Philipsen, van der Heide, van der Wal, & Deeg, 2006). Comparative research across Europe has shown a more permissive attitude towards end-of-life care discussions and acceptance of euthanasia in the Netherlands (Gysels et al., 2012), perhaps associated with a desire to discuss and regulate controversial practices (Rietjens et al., 2006). It has also been suggested that the Dutch medical system operates with a relatively equal power distribution between doctor and patient, in which discussion and deliberation is encouraged (Norwood, 2007). Italian participants spoke of familial roles and emphasized a family-based decision-making style, which often contributed to the perception that ACP was redundant. Our data suggest that ItalianAustralian migrants experience an enduring preference for traditional, home-based approaches to caring for older, dependent family members. Previous research has explained this ﬁnding with reference to core cultural values of familism among the ItalianAustralian community (Benedetti et al., 2013), along with the belief that ‘only people with no family go into care’ (Baldassar, 2007). Similarly, research among ﬁrst-generation Korean-American migrants corresponds to our observation of a negative association between familism and support for ACP (Kim & Foreman, 2011). In this context it is interesting to consider recent literature, exploring the continuing trends towards individualism in Western societies, along with the gradual move away from traditional familial roles among second- and third-generation migrants. It may be that elderly ﬁrst-generation migrants face a situation in which end-of-life care is increasingly ‘negotiable’, rather than prescribed by a sense of familial obligation (Broom & Kirby, 2013; Donovan, Williams, Stajduhar, Brazil, & Marshall, 2011). The relevance of this trend to use of ACP is unclear, and requires further research. However it may be that support for ACP is motivated, in part, by a broader desire to assert control over an increasingly uncertain familial and healthcare landscape. As one participant stated in response to his perception of changing societal values: ‘now you are forced to come and sign these sort of [ACP] documents’. Religious observance was typically associated with a moral opposition to euthanasia, and for some a tendency to question the appropriateness of using ACP to inﬂuence a future already ‘predetermined’ by an omnipotent God (Cohen, McCannon, EdgmanLevitan, & Kormos, 2010). Research in the Netherlands has shown a negative relationship between religiosity and ACP (Rurup et al., 2006), perhaps due to the association between ACP and euthanasia. On the other hand, some studies have shown a positive association between religiosity and attitudes towards ACP; thought to be grounded in a decreased desire for life-sustaining treatment at
the end-of-life, and openness to discussing end-of-life issues among people from religious backgrounds (Alano et al., 2010; Moore & Sherman, 1999). Participants received signiﬁcant support from ethnic community networks, which sometimes appeared to take on characteristics normally associated with close family. Previous research has shown that ethnic community networks may form to serve instrumental purposes, for example coping with language difﬁculties (Manderson & Allotey, 2003). Our study suggests that the presence of community support from others with similar moral values and cultural backgrounds was typically associated with a sense that ACP was redundant. The phenomenon of the ‘return home’ has been described as a deﬁning experience in the migrant’s life course, for ItalianAustralian migrants central to their conception of self as both Italian and Australian (Wilding & Baldassar, 2009). Such experiences are signiﬁcant in shaping migrants’ own ideas about how and where they wish to spend their old age. The potential to ‘return home’ in later life, to reunify with family and receive culturally appropriate care, was particularly signiﬁcant for some participants. Baldassar (2007) has previously referred to ‘trans-national caregiving’ among Italian migrants to Australia; we suggest that some of our participants contemplated a type of ‘trans-national careseeking’, as an alternative to ACP. For the older participants in this study, ‘trans-national care-seeking’ was seen as a one-way journey, to a destination in which family and cultural supports were present. Thus, it can be differentiated from the concept of ‘medical tourism’, which is typically undertaken by residents of afﬂuent nations, who seek medical care in other countries to avoid costs, or reduce waiting times (e.g. Ramirez de Arellano, 2007), though it perhaps has some similarities to ‘death tourism’, which is typically undertaken to evade laws prohibiting euthanasia in the resident’s own country (Miller & Gonzalez, 2013). More broadly, we argue that contemplation of trans-national care-seeking illustrates how goals for future treatment can be shaped by migration experiences, and how autonomy can be expressed in diverse ways. Further research is required to understand the factors associated with trans-national care-seeking, and their implications for migrant communities and care-providers. In some cases, pre- and post-migration experiences contributed to a sense of mistrust in governments and health services. In the Australian context, migrants were surveyed and classiﬁed under a ‘White Australia’ policy, which gave preferential entry to certain groups and promoted discourses around risks of infection or ‘genetic weakening’ associated with non-preferred groups. During World War II, suspicion that migrants were assisting the Fascist agenda led to wide scale internment, which lives on in the collective memory among the Italian community in Western Australia (Bosworth, 1992). Such concerns recall Foucault’s insights into the socially constructed nature of health and illness, and its intersection with the institutional practices and cultural assumptions of those in power. The narratives described above also speak strongly of migrants’ fears of surveillance and of seeking to avoid situations in which they cede control of their health to institutions. Limitations The combination of data from a group discussion with that from individual interviews added a layer of complexity to the analysis. The group setting was less able to elicit individual narratives, and the presence of fellow congregation members may have led to group participants censoring views opposing the dominant moral stance against euthanasia; these may have emerged more freely in individual interviews. However there was consistency between the responses of church members in individual and group settings.
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Implications Health care professionals may beneﬁt from understanding the cultural factors that inﬂuence attitudes towards ACP among people from ethnic minority groups. Approaching ACP discussions in culturally appropriate ways (e.g. a family-centered approach) and alleviating speciﬁc concerns (e.g. clarifying terms such as ‘euthanasia’) may be helpful. However, it is also important to recognize the ways that power is distributed between members of different groups, and how this can inﬂuence health care interactions. Previous research has suggested that language difﬁculties experienced by migrants can impact on doctor-patient communication and health service engagement (Scheppers et al., 2006). However this in itself does not constitute an unassailable barrier to ACP. We found that the use of appropriate translation services alleviated language concerns, allowing participants to engage openly in discussions about ACP. Conclusions While research supports the utility of ACP in improving end-oflife care, it is vital that robust debate continues to focus on the culturally derived system of bioethics which underpins this emerging movement (Bowman, 2004), as well as its methods of evaluation. Within culturally diverse societies, research can easily revert to serving the interests and priorities of the dominant majority (Van Hear, 2012). Research in end-of-life care must appreciate the diverse value systems of ethnic minority groups, and understand how unexamined cultural assumptions by health professionals can underpin judgments of the quality and appropriateness of care. This study suggests that the cultural constructs of individualism and familism are associated with attitudes towards ACP, among an elderly migrant sample. We also suggest that a previously neglected area of study, the experience of migration, is important in understanding the issues faced by ethnic minority groups in engaging with ACP, and health services in general. Acknowledgments We would like to acknowledge the research participants, for their time and candor, the community representatives who assisted in the study, and Ms Sara Lembo, for translation and interpreting assistance. Appendix 1. Advance care planning discussion guide Provide information about the process of advance care planning, and the relevant legal forms (Advance Health Directive and Enduring Power of Guardianship). Answer initial questions from the group/interviewee about advance care planning and the legal forms. 1. Have you ever had talks with your family or doctor about your wishes for future medical treatment? 2. Before today, were you aware of the Advance Health Directive? a. How did you ﬁnd out about it? b. What did you know about it? 3. Do you think that the Advance Health Directive is a good idea? a. Will it be helpful for people to write an Advance Health Directive? b. Do you think you might consider writing an Advance Health Directive in the future? c. Is there anything that would encourage you to write one? d. Is there anything that would stop you from writing one?
4. If you were seriously ill and unable to talk to the doctor to tell them what you would want, is there someone who would talk with the doctor for you? 5. Before our talk today, were you aware of the Enduring Power of Guardianship form? a. How did you ﬁnd out about it? b. What did you know about it? 6. Do you think that the Enduring Power of Guardianship is a good idea? a. Will it be helpful for people to nominate a guardian? b. Do you think you might consider nominating a guardian in the future? c. Is there anything that would encourage you to write one? d. Is there anything that would stop you from writing one?
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