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Undocumented Migrants and Healthcare

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Marianne Jossen

7. Healthcare for undocumented migrants

Texte intégral

Dynamics of inclusion and exclusion

1The preceding chapters have outlined three core moments of inclusion in healthcare that can be experienced by undocumented migrants, along with their preconditions and consequences. This section reviews those moments, preconditions and consequences, and then contrasts them with situations in which patients remain excluded from communication related to or directly concerning healthcare.

2Firstly, as we have seen with Suzanne’s story, settling in is an important moment of inclusion. However, it is contingent upon preconditions, which typically include knowing somebody in the country of arrival and having migrated in order to seek a different life or work, rather than out of sheer personal distress or danger caused by sickness, war or torture, as was the case for Jonathan or Maria.

3Having contacts within a diaspora community who can assist a new arrival to find housing and work is a great advantage, enabling an undocumented migrant to build a life that they find relatively satisfying and healthy, even if certain issues continue to weigh on them. Opportunities to be proactive about one’s own situation allow one to address minor health issues and soothe some of the difficulties of an undocumented life. As we have seen, these difficulties are first and foremost due to undocumented status itself, which makes both work and family life insecure and brings with it a fear of discovery (see also Wysmüller & Efionayi-Mäder 2011:44; Biswas et al. 2011; Achermann et al. 2006). The importance of good health in maintaining a decent quality of life in such a stressful situation, and the fragility of this kind of inclusion, are in turn demonstrated by cases in which serious health issues arose and difficult social situations had an impact on a person’s health and healthcare.

4The second important moment of inclusion is the point of initial contact with the NGO and its network. However, some social connections with a diaspora community, with social workers or with other NGOs are necessary to discover it, as we have seen with Jonathan and Fanny for example. Informal knowledge is thus essential, as also described by Huschke (2014) in reference to Berlin and Devillanova (2008) in relation to Milan.

5Enabling inclusion in healthcare in specific ways is a core competency of the NGO, making it an important actor in this respect. Administrative processes are tailored as much as possible to fit the specific situations of undocumented migrants, as illustrated by Béatrice’s account. Furthermore, the NGO helps migrants to bear the burden of particular difficulties with inclusion that result from ideological, administrative and financial dependence on medical and insurance professionals, with the result that the NGO is, to a certain extent, involved in these difficulties itself. If needed, the NGO not only provides a space in which patients can receive healthcare, but also offers them opportunities to address the health issues of their families back home and to discuss the difficulties of an undocumented life, as Peter’s account has shown.

6One consequence of being included in healthcare at the NGO and its network is that migrants can receive at least some care at a reduced cost, or acquire treatment for conditions that had remained undiagnosed in the mainstream system. However, the undocumented migrants also become dependent on a charitable organization. Inclusion is therefore organized in the separate framework of a parallel healthcare system, one that necessarily lags behind the mainstream structure that is accessible to legal residents. When undocumented migrants who have not discovered the NGO experience health issues, they sometimes try to ignore the problem for as long as possible, as Maria’s story demonstrated (see also Biswas et al. 2011 and Wolff et al. 2008). Finally, in order to receive some sort of assistance with their health, they may seek to be included in the healthcare system in ways that are marginalizing and risky, such as telling lies in order to receive medication. They sometimes turn to futile and even perilous asylum procedures, like Jonathan and Fanny, and are likely to engage in practices that actually harm their health (for other examples of such strategies see also Achermann et al. 2006:147ff; Huschke 2014; Roura et al. 2015). Inclusion in the emergency services is typically only sought after a trusted person has reassured the patient that they can use these services safely. In contrast to the professionals’ view (confirmed by Dauvin et al. 2012) that even without insurance, inclusion at emergency units is possible, undocumented migrants are often excluded in practice by their fear of incurring costs they will not be able to pay, and chiefly by the dread of their status being exposed, as Nicolas’ account has shown. Legal entitlement does not equate to actual inclusion into healthcare. In some countries (Poduval et al. 2015; and to a certain extent Biswas et al. 2011), patients seem to have a better understanding of the healthcare services they are entitled to access. This finding strengthens the idea that inclusion is as contingent on the circumstances and actions of the patient as on the actions of the professionals concerned. Inclusion is indeed a social relation and not an individual feature or a property of organizations.

7A third key moment of inclusion in healthcare is acquiring insurance. This allows access to more expensive and longer-term treatments. More than that, insurance can give the undocumented migrant a sense of having an active role in achieving their inclusion in healthcare, and the ability to interact (in certain cases quite autonomously) with the different actors related to their care. As Laranché explains in her study, and has we have seen in Fanny’s story, the knowledge that one has a right to healthcare, and being entitled to this right by contract, can be a ‘means of becoming recognized as existing’ (Laranché 2012:862).

8But again, support from an NGO or a person who possesses specialised knowledge, such as a social worker, is essential to be able to take out insurance. To hold insurance, one again needs to be settled, to have the help of trusted people and above all to have some money on hand.

9Acquiring insurance, as a single moment and as a lasting relationship of inclusion, can result in patients being forced into a position of financial dependence on family, friends, acquaintances, clients or employers, as Maria’s and Nicolas’ stories demonstrated. The financial demands and related stresses involved with maintaining insurance payments can in themselves pose a substantial threat to good health. As Fleischmann puts it, financial pressures ‘perpetuate the cycle of harsh work conditions and deteriorating health’ (2012:93). To be involved in the official labour market, or to have access to the welfare state via citizenship, prove to be—frequently unspoken—prerequisites to obtaining healthcare. And yet, having taken out insurance, patients are still at risk of being excluded from healthcare facilities, unless they have people to accompany them or organizations to advocate for them. Underuse of medical services is therefore not only, as Hügli & Rüfli (2011:39) state, due to patients not daring to use services, but also due to some services excluding patients. As Dauvin et al. (2012) have asserted in the context of the British healthcare system, this makes it difficult for professionals to refer patients to other healthcare facilities, if the patients plan to attend those facilities on their own. Biswas et al. (2011) confirm the importance of knowing citizens in order to obtain healthcare in Denmark.

10However, a lack of insurance can also be a serious impediment to health, tying patients to the limited possibilities of paying for care themselves or forcing them to rely on the restricted financial resources of a charitable organization.

11All these moments of inclusion in healthcare function to improve the life and health of patients, in contrast to those situations in which patients are only able to achieve partial inclusion or are even excluded completely from healthcare. Such situations exacerbate bad health or cause patients to seek out marginalizing and risky ways of obtaining healthcare.

12Furthermore, in all these moments of inclusion, certain preconditions have to be fulfilled, such as knowing someone in the country of arrival, being able to work and having the opportunities to work. It is necessary to have local connections to get to the NGO and to take out insurance. Regarding insurance, having enough paid work is an indispensable prerequisite. Inclusion in healthcare thus requires inclusion in the social systems of diaspora communities and inclusion in an economic system.

  • 1 ‘korrupte lokale strukturelle Kopplungen’.

13Finally, whatever steps patients and professionals undertake, there are significant limitations on the inclusion of undocumented migrants in healthcare. If patients are uninsured, diagnosis and treatment are limited to the strictly necessary, unless professionals are willing to give more time out of the goodness of their hearts. Important health problems sometimes simply cannot be addressed, as we have seen in Maria’s case. When patients have insurance, inclusion is still not available at the same level as for Swiss citizens, as advocacy is still needed. Furthermore, to achieve inclusion, patients are frequently forced to accept occupational health risks at disproportionate levels compared to Swiss citizens. Exclusion from the nation state and systems of citizenship therefore causes exclusion or precarity of inclusion in healthcare: exclusions foster further exclusions. Thus, our research confirms the idea that being undocumented is a social determinant of health on its own (Martinez et al. 2015; Castaneda 2009, Affronti et al. 2013; Kuehne et al. 2015, Fleischmann 2012). In a systems theory approach this ‘spillover’ between systems—the determination of healthcare and health by legal status—is seen as a contradiction, given that the systems see themselves as autonomous and independent from each other. For instance, in Switzerland, access to healthcare is (as we have seen in Chapter Two) decoupled from citizenship in the system’s own formal description. In practice however, in the operative enactment of communication, this is not the case. Stichweh refers to such effects as ‘corrupt local structural coupling’1 between systems (2005:175f). As a consequence, patients are often pushed into a parallel healthcare system, such as that offered by the NGO and its network. Integrative inclusion seems to be much less common than separating inclusion, to lean once again on Stichweh’s (2007) terminology.

Contexts and dimensions of inclusion and exclusion

14As may be increasingly apparent to the reader, all these moments can lead to inclusion or exclusion in various social contexts. Three main contexts have appeared in the material gathered:

  1. the economic context, concerning financial aspects,
  2. the organizational/administrative context,
  3. the treatment context.

15Financial aspects are tied to inclusion in the economy as a functional system: work brings with it the ability to mediate social relations through monetary payment. Organizational and administrative contexts refer to an individual’s inclusion in organizations, be they insurance or healthcare organizations. Lastly, contexts of treatment concern inclusion in the system of healthcare as a functional social system.

16When discussing these three contexts, three important dimensions of inclusion and exclusion become evident. These dimensions point towards a shared culture and shared values between both undocumented migrants and the professionals caring for them. The three dimensions concern:

  1. the question of whether inclusion can only be achieved in the short term, or whether it can be stabilized for a longer period;
  2. the question of how much dependence inclusion brings with it, or of how much independence and self-determination it allows;
  3. the question of whether inclusion leads to the recognition and addressing of the specific conditions in which undocumented migrants live, or not.

17Each context mentioned above can be related to these dimensions of inclusion and exclusion. For example, financial inclusion can be said to be achieved over a longer or shorter period; it can make dependence greater or smaller; it can take into account or ignore the situation of undocumented migrants. The same holds true for the other two contexts.

18While going through these contexts and dimensions, it will once again become evident how tightly they are interlinked and how they are also tied to legal status and thus to policies concerning undocumented migration and healthcare. It would be interesting to compare these findings with stories of other vulnerable populations and see where similarities and differences appear. It is striking that, while the interviewed patients had very diverse migration backgrounds and origins that were widely spread across the globe, it is still possible to identify common dimensions concerning inclusion and exclusion. Much more than any regional culture, it seems to be the fact of being undocumented itself that creates a specific environment and culture and brings forward specific needs (for a similar insight in quantitative studies concerning migrants in general see Arevalo et al. 2015 and Ikram et al. 2015).

19Firstly, financial inclusion is affected by the fact that undocumented migrants are frequently employed on the black market, leading to very low and irregular incomes. The consequent lack of any employment protection leaves them with little leverage when it comes to negotiating for salaries, notice periods, or protection in case of accident, sickness or maternity. While financial instability is certainly also an issue among poorer Swiss citizens, being undocumented exacerbates these problems, as has been proposed by Fleischmann et al. (2015). All care, be it paid out of pocket or covered by insurance, is constantly threatened by the potential interruption of payment due to loss of work, sickness or inadequate wages.

20Paying for care out of pocket or paying for insurance both result in dependence. As previously stated, undocumented migrants are likely to be pushed into jobs that are dangerous to their health due to financial pressures arising from the high cost of healthcare. They are either vulnerable to exploitation by unscrupulous employers or acquaintances, or forced to rely on charity. Furthermore, in social systems theory, money is conceived as a medium of communication in the economic system (Luhmann 1997). As such, money facilitates communication, which in the economic system consists mostly of financial exchanges. It seems that in the absence of such a medium, emotions, pity and personal concern are used as a substitute. Patients, as well as NGOs, end up begging for treatment at reduced prices. The system gives no consideration to the circumstances of migrants’ lives, as they strive to achieve financial inclusion in healthcare.

21Switzerland is one of the European countries with the highest out-of-pocket contribution rate when it comes to healthcare (De Pietro et al. 2015:229ff). In the cases examined in this study, the effect that being undocumented has on a person’s healthcare—this ‘corrupt local coupling’—is strongly linked to the financial context. However, Swiss policies regarding healthcare for undocumented migrants widely ignore this fact; despite reduced insurance premiums, patients often face insurmountably high costs, and an approach that takes this into account is currently only being realized in Lausanne and Geneva. In an interesting article, Britz and McKee (2015) investigate the consequences of charging migrants for healthcare in the UK. Experts feared that such a practice would exacerbate existing barriers and generate increased costs. The present study has revealed real-life examples of what it means for undocumented migrants to be charged financially for healthcare; even in the absence of a full economic evaluation, the results, to put it mildly, do not suggest that imitation of this model is to be encouraged.

22Secondly, administrative inclusion is affected by the difficulty of providing proof of residency, lack of registration, the need for compliance with special data protection rules, and practical issues such as the requirement to attend appointments at the allocated time, which is often unworkable for people leading a precarious existence. Even in emergency situations, inclusion in healthcare is threatened by administrative exclusion, such as insurance companies failing to issue cards to undocumented migrants. As Laranché (2012) shows in France, Fleischmann (2015:92) in Israel, and as the present study has shown in Switzerland, such administrative exclusion is mentioned repeatedly in the statements of undocumented migrants, who think they are not entitled to emergency care.

23These administrative aspects of inclusion are also affected by financial aspects. As we have seen, insurance companies practice exclusion via risk selection, or else find legal loopholes to avoid covering costs and thereby financially exclude patients before their treatment can begin. We have encountered hospitals that are driven to be financially profitable and have therefore chosen to operate along managerial lines and require their staff to react with suspicion and block procedures if in doubt about coverage of costs. An interesting question for further research could be to ask, again following Laranché’s (2012) approach, how discourses and politico-legal structures that relate to undocumented migrants in Switzerland shape such organizational arrangements and practices of inclusion and exclusion.

24As we have seen, it is possible to set up administrative inclusion in a way that makes it responsive to the situations and specific needs of undocumented migrants. However, as things stand, patients are reliant on special knowledge that they are unable to access without outside help. NGOs, having such knowledge at their disposal, navigate grey areas where official procedures are replaced by personal connections, goodwill and special arrangements.

25Administrative exclusion is thus a concern for both uninsured and insured undocumented migrants. The exclusion of the latter is especially questionable in terms of the ethics of equality. Indeed, undocumented migrants who become insured have to put in a much greater effort than legal residents, as illustrated by numerous examples in this study. They are also the ones who continue to need informal help in order to claim the rights they pay for so dearly.

26Thirdly, when we consider healthcare as the interaction between medical professionals and patients, we have seen that continuity is possible if trust can be built up and administrative and financial inclusion achieved. Sometimes, especially if the health issue is physical and can be cured quite straightforwardly with the appropriate treatment, inclusion need not be tailored to the particular situation of undocumented migrants—in other words, it can be the same as the care provided to all other patients. One possible exception is that additional explanations about treatments might be needed, taking into account differing conditions in migrants’ countries of origin. It is clear that health issues that are more closely linked to the legal status of undocumented migrants need to be addressed in a specific way that goes beyond what healthcare in a narrower sense might encompass, as is already the case in some instances, notably at the NGO (see Baldassar et al. 2016 for care in transnational families). For professionals who lack sensitivity to such issues, the provision of healthcare to undocumented migrants might, at times, become a difficult task. Confirming this finding, Duvin et al. (2012) state that ‘communication barriers’ were reported to be a more significant obstacle to obtaining primary healthcare than for emergency services.

27It must be said again that, even with all the efforts made by patients and healthcare professionals, the fundamental problem, the lack of documentation, cannot be resolved in most cases. If it is resolved, this is accomplished only after long years of unnecessary difficulties and suffering.

28These tightly interlocking factors that influence inclusion support the argument that inclusion is a multidimensional process. It means much more than simply being given the chance to interact with medical staff. In this regard, research should focus not only on medical personnel, but also on those who hold administrative and managerial roles. As we have seen, these gatekeepers prove to be, in some circumstances at least, as important for inclusion in healthcare as nurses and doctors. Administrative staff might need to have even more sensitivity to specific conditions and circumstances than medical staff.

29Comparisons with other patient groups may show important differences in the mechanisms of inclusion. That said, it could be interesting not only to advocate a ‘patient centred’ approach to the access and use of healthcare (Levesque et al. 2013), but to take the idea even further, with a ‘patient informed’ approach to inclusion into the social systems related to healthcare.

Legal status, healthcare and health

30Summing up the moments, preconditions, and consequences of healthcare inclusion and exclusion, we can see that: Addressing financial aspects of inclusion, be it by paying out of pocket, by bargaining with a restricted and dependent NGO, or by buying insurance, is always difficult in the long term. These strategies often pose a threat to the patients’ health, and only in rare cases operate as a boost to self-esteem. Patients can be included financially—but at a very high cost to their financial and social circumstances, and even their health.

31Adapting administrative aspects of inclusion to the needs of undocumented migrants is possible. However, such adaptations are only rarely made by health insurers and care facilities. The situation is similarly unsatisfactory for both uninsured undocumented migrants in need of emergency care and insured undocumented migrants in need of regular healthcare. This leaves patients dependent for administrative inclusion on charitable organizations and trusted individuals.

32Finally, in order to give treatment to undocumented migrants, it is not always mandatory, but sometimes desirable, to adapt the process so that it addresses at least some of the specific health issues that affect them. This task is mostly left to specialized charitable organizations and their volunteer networks.

33The inclusion of undocumented migrants in healthcare in Switzerland remains partial and precarious. Exclusion is a reality and an ever-present threat, even while both patients and professionals are making every possible effort to achieve inclusion. Undocumented migrants are included in some aspects of healthcare, but only by paying a high price. Their inclusion is partial and they are excluded from some aspects of care, notwithstanding entitlements such as insurance. The health and healthcare of undocumented migrants are therefore deeply affected by their legal status. A discussion about whether this makes sense in political, economic and ethical terms is urgently needed in Switzerland—and beyond.

Notes

1 ‘korrupte lokale strukturelle Kopplungen’.