© 2018 Marianne Jossen, CC BY 4.0 https://doi.org/10.11647/OBP.0139.05
In this chapter, we will encounter patients who, unlike Suzanne, have experienced more serious health issues and for whom the NGO and its network have proved to be important for their inclusion in healthcare as well as for maintaining their general health.
About a third of the patients attend the NGO regularly and another third use the service sporadically. While Béatrice, whom we will encounter first, probably belongs to the latter category, Peter, Maria and Jonathan are long-term regular patients. During their stay in Switzerland, they have also experienced periods of partial or total exclusion from healthcare. Their experiences during these times may well reflect those of patients who have some health issues, but do not know about the NGO.
As in the previous chapter, a very important factor that enables inclusion in healthcare‒insurance‒is not an active part of these stories. In the case of Béatrice, the dental care she needs is not covered by insurance. Furthermore, her story is the first to reveal that the emergency services are another potential point of inclusion that is often bypassed. Béatrice’s statements will be complemented by the perspectives of Andrew, an administrative employee, and a doctor, Carl, who work in the emergency service of a public hospital. Béatrice’s story offers more information about the interactions of both the individual patient and the NGO with professionals in the NGO’s network.
For Peter and Jonathan, insurance is a background issue. They have insurance, but only because others have taken on the entire administrative and financial burden of obtaining it for them. Again, the NGO and its network are their most important points of reference. Jonathan’s story highlights, for the first time, the role the NGO plays in taking out insurance for a patient. We will also see what this process involves from the perspective of an insurance employee, Patricia. Furthermore, through an interview with Caroline, a diabetes counsellor within the NGO’s network, we will examine in more detail how the professionals in this network contribute to Jonathan’s inclusion in healthcare. Finally, for Maria it is the care at the NGO and within its network that proved to be her most important moment of inclusion, because for her, insurance is financially out of reach.
Concerning uninsured patients, it is important to note that, as Julia puts it, the NGO has a ‘relationship of dependency’with the professionals in its network. Indeed, they often work extra hours of their own accord and for reduced pay. It is not easy to build up such a network and all the volunteers have particular motivations for their work. For example, David, the general practitioner volunteering at the NGO, states that he has often worked with socially vulnerable patients in the past. The gynaecologist and the ultrasound expert whom we met during Suzanne’s story have both worked in hospitals in so-called developing countries. The head of the NGO describes her work with the network as time-consuming. She always needs to arrange
very binding deals, but with individuals, because we don’t really have any [formal] agreements.
This is echoed by Melanie, the other nurse working at the NGO:
We’re always dependent on there being people with a good heart, or someone who feels, yes, we really must help these people.
Béatrice is a woman in her thirties, who has been living in Switzerland for about four years. She initially portrays her life as an ‘adventure’, but a few moments later, she starts to muse that God keeps undocumented migrants healthy because they ‘already have to bear all the weight of the adventure’. Her ‘adventure’ should therefore not be misunderstood as a purely hedonistic undertaking. The ‘weight’ is always present and, as with Suzanne, causes problems both physically and mentally:
So if one has […] a headache, it’s perhaps because from time to time one is in a state of depression when thinking about the family. […] Because I spent the whole night thinking, thinking about my people, thinking about my family.
Again, similarly to Suzanne, Béatrice gets to know about the NGO early when she arrives in Switzerland, through the local diaspora. The community also provides her with housing and some child-minding jobs. As she says:
Some people already know how to get things done, as we are in an irregular situation, and also we don’t have any work so we can’t take out any health insurance. So, this way we are informed.
Béatrice is registered at the NGO with her name and date of birth. A short while later, she has a toothache that becomes so painful she needs treatment:
I needed to be given care immediately. Because there were already infections.
She decides to call Julia, the head of the NGO. Béatrice then describes in great detail, with precise reference to the specific days and hours, how Julia organizes a same-day after-hours dental appointment, accompanies her there because she does not know the city yet, and provides translation. Julia then sets up an urgent appointment for Béatrice with a surgeon at the dental surgery at seven o’clock the next morning. For Béatrice this non-bureaucratic and speedy treatment is a core moment of inclusion. This is confirmed at the end of the interview when, asked what she would like to add, she says:
That in Switzerland, at the NGO there are wonderful people who don’t defer until tomorrow the things they can do today. Because it was an emergency. So, they always find a solution when facing an emergency.
This moment is the beginning of a lengthier period of treatment for Béatrice in the NGO’s dentistry network, this moment of inclusion thus securing her stable dental care. As she explains, the surgeon, showing professional interest, found out that she has a tendency to lose teeth easily. There also seemed to be some teeth that had grown in the wrong direction, due to a specific morphology of her jaw. After having several teeth removed by the surgeon and consequently losing her ability to chew food, she needs an implant. Julia, having obtained the x-rays showing the state of her jaw after surgery, organizes a series of appointments with another dentist recommended by the surgeon. Asked more closely about these appointments, Béatrice says they were all set up by Julia. However, she stresses having gone there ‘on my own and they would tell her [Julia] what had been done’. Again, Béatrice emphasises the importance of the professional’s interest:
In the beginning […] it was a bit difficult. Because when she saw the state of my mouth […] ‘Why is it like this? What can we do?’ But because she was good at her job, she found a solution. And for her, it was also a challenge.
The dentist’s view of Béatrice›s morphology as a challenge and an opportunity to stretch her professional practice plays an important part in Béatrice’s lasting inclusion in healthcare, in Béatrice’s view. She reports that the shape of her face changed during treatment and she had some issues accepting it, but states that she is very happy with it now. She still visits the dentist who did the implants for check-ups.
One question that comes to mind is why Béatrice never considered attending an emergency unit despite having such urgent problems with her teeth. Her response:
Well, the first thing they ask for is your identity card and you don’t have any documents on you.
According to the hospital staff, Béatrice’s fear of being asked for an identity document is groundless. Andrew, the administrative employee, says: ‘We couldn’t care less about the legal status’. The doctor, Carl, agrees:
I don’t really get told about it [whether a patient is an undocumented migrant]. Most of all, I don’t know […] what an undocumented migrant looks like, right? […] We are not trained for that, and […] I mean, it wouldn’t change anything.
Still, the fear of being exposed and subsequently deported when attending emergency care becomes clear when Béatrice tells of an acquaintance who had an ectopic pregnancy. The undocumented migrants whom she knew brought her to a hospital at the last minute, when she was already having convulsions and her limbs were going cold. They did not call an ambulance. Before driving, they called an NGO and asked what they could do. Béatrice knows that no one who needs emergency care will be left to die and that, in life-threatening circumstances, care will be given first before payment is considered. Still, she assumes that inquiries about identity will be made:
They will first take care of you before asking you where you are from, what’s your country of origin.
But, and this is the other side of her story, Béatrice is amazed at how well her acquaintance was taken care of:
If you consider our hospitals, many would already be dead, but in Switzerland, people […] give their time for others. And, if I may say so, almost for free. For free. That’s a great thing. It’s great. Because [at home] for everything that is done you need to offer an incentive. But that’s not the case here.
Béatrice compares and contrasts her country of origin with Switzerland and highlights that, in Switzerland, delivery of care is independent of financial exchange or bribery. As we progress, we will encounter other examples of patients who value the predictability of a system free of corruption.
With this in mind, it must be said that Béatrice is right when she says that the care in such an urgent case is ‘almost’ for free. David, the general practitioner volunteering at the NGO, says:
Even when we send someone to an emergency department, they immediately check: is he able to pay?
Indeed, as Andrew confirms, if they can talk to a patient before care is given and the administration becomes aware that costs are not covered by insurance, staff try to obtain a deposit of CHF 500. If this is not possible, care is given anyway, as Andrew explains:
We do inform the doctor that the patient can’t pay the deposit. And then the doctor simply takes the history, carries out diagnosis and provides treatment. But he also assesses, well, whether things can be postponed until the finances are sorted. Or whether we have to [do something immediately], in which case we do it.
If patients provide an address, however, they are pursued for payment. An undocumented migrant would therefore either have to pay for the care, give a false address, or deal with being pursued, risking exposure once again. Andrew explains that the hospital’s canton does not refund costs for the treatments of patients without insurance.
If a patient admits to not having insurance but lives in the hospital’s canton, the administrative staff will make them sign a form that is sent to the canton’s officials who are responsible for mandatory social insurances, such as health insurance. These officials will then enroll the patient in an insurance scheme. The patient on the other hand, then has to pay the monthly premium However, the head of the NGO knows that in these situations, undocumented migrants will sometimes give the wrong address, resulting in a futile administrative process.
Returning then to the NGO, we have seen that it plays a key role in migrants’ ongoing inclusion in healthcare. To some extent this role continues throughout the entire process, with Julia receiving medical reports and organizing all the appointments. Migrants therefore depend on the NGO and its network of volunteers for healthcare even after their transformative moment of inclusion. The NGO, however, depends on its professionals, although it is difficult to find dentists willing to work extra hours and for reduced fees. Béatrice says that both of the dentists caring for her had previously worked in areas that were riven by civil war, and also in developing countries, and Julia adds that she has found it easier to motivate dentists to help if they are or have been migrants themselves. Again, personal engagement and goodwill is needed. The resulting lack of formal agreements and the high cost of treatment prompt the NGO to closely monitor professionals’ interactions with patients, so that they can mediate quickly in case of difficulties. Undocumented migrants are sometime unreliable at keeping appointments, which can be a source of problems. As Julia says:
Especially with the dentists I’m really pedantic, I accompany almost every single person. Only when I see that people are really reliable […], only then do I tell them they can go on their own.
As the nurse, Melanie, says, at the NGO itself, flexibility is needed:
Overall, I had to learn to deal with that, people either attend or they don’t. For whatever reasons, maybe they are working, or they forgot, or they couldn’t afford the train fare. […] You know, we’re not like in a hospital, where you then go, well they didn’t attend this time, we may as well not take them next time. That’s not how it is here. We say hey, we are here for these people and if they don’t attend, they will have their reasons.
For instance, Béatrice says that she might not always be reachable, as, when child-minding, she sometimes stays in another city for several weeks and cannot leave during that time. Certainly, the professionals in the NGO’s network are not always willing or able to offer such flexibility.
Until she is prompted, Béatrice doesn’t address the financial aspect of her treatment. Asked about her contribution to costs, she says she can make it up with her little jobs and again mentions Julia as her first point of contact for these issues.
The NGO has a fixed budget of CHF 500 per patient per year. The primary strategy to counter this financial precarity is to require patients to contribute towards the costs of their treatment. But there is no clear procedure for the personnel of the NGO to assess a patient’s financial capacity. As Julia says:
I have to negotiate with them each time. And there is nothing I can refer to.
Julia describes how she has developed ‘a feeling’ for these things, and attempts to ‘take people at their word’. She wants them to understand that ‘everything is not for free’. In the case of dental care, patients are asked to pay at least one quarter of the total costs in instalments. Sometimes, money can also be reallocated from patients who have not incurred high costs. Sometimes, patients defraud their way into care, as Melanie explains:
Well, I have also been tricked by some, in that I sent them to the dentist and they never returned. [laughs] Yeah, of course, that money, I never saw it again.
As we will see later on, for various reasons patients sometimes obtain healthcare through fraud and lies. Such means are judged by society to be morally wrong or even illegal, so these attempts at inclusion further marginalize undocumented migrants.
Béatrice’s story confirms what we heard in Suzanne’s account: inclusion in healthcare requires inclusion in a community and in a system of paid work, in order to establish a good living situation and to contribute towards the costs of care.
For Béatrice, inclusion in healthcare at the NGO and its network has very positive consequences, as it enables stable and lasting care for her dental problem. Furthermore, the unexpectedly quick and non-bureaucratic provision of appointments proved to be very important for Béatrice’s lasting inclusion in a programme of treatment. More negative associations with healthcare are revealed when Béatrice is talking about emergency care. Here she conflates the idea of exclusion from healthcare with administrative exclusion due to her lack of legal status. Therefore, the condition of being ‘undocumented’ in itself excludes people from emergency care. Furthermore, the financial responsibilities of inclusion are also difficult to undertake and may put undocumented migrants at risk of deportation, should they be pursued for costs. Financial difficulties therefore increase the likelihood of patients being excluded from healthcare.
Listening to the two nurses working at the NGO, the reader can also start to see that such quick and non-bureaucratic aid and professional engagement stem from an ongoing effort by professionals. This involves the establishment of stable agreements, in a situation where goodwill, personal engagement and organizational flexibility are particularly necessary. In addition, financial insecurity, which brings with it the risk of exclusion from healthcare, is partly transferred from patients to the NGO, thus intensifying the organization’s dependence on the goodwill of the individuals in its network.
The engagement and interest shown by the professionals whom she encountered were important conditions for inclusion for Béatrice. Such qualities would probably also be identified as significant by patients belonging to the wider population, demonstrating that inclusion in healthcare need not, in Béatrice’s case, be determined solely by factors that relate to her legal status. Another important aspect of her inclusion is more specific to Béatrice’s situation: the NGO’s dependence on the professionals in its network requires a certain passivity from her. However, her statements show that she values the act of attending appointments on her own, so it is important for her to maintain a degree of autonomy whilst achieving inclusion.
In 2016, 13,526 people were denied asylum or temporary admission in Switzerland, corresponding to 51% of all asylum claims (Staatssekretariat für Migration 2017:16). Some failed asylum seekers appeal to the administrative court, while others leave the country or go into hiding. Still others live on so called ‘emergency assistance’ organized by the state; despite this state support, they are undocumented migrants insofar as they have no right to stay in the country. If not housed by friends, they live in emergency accommodation where they also receive food. Some of them are given about CHF 60 a week, others are handed vouchers. Failed asylum seekers do have access to a health insurance policy, provided by a special scheme, which is also given to asylum seekers while the assessment process is still underway. Healthcare can then be accessed via the asylum centre’s staff and is covered by the insurance. Failed asylum seekers sometimes live in this situation for years and are under the constant threat of being deported.
Peter, a man in his thirties, is one of these failed asylum seekers. In addition to the rejection of his application for asylum, his identity documents were confiscated during the assessment process. He consequently has no documents at all relating to his identity.
At the start of the interview, he explains that he left his country after having been tortured during an eight-month imprisonment. His journey to Switzerland included a difficult stay of several months in Greece, from where he finally, with some additional financial help from his family, reached Switzerland in a truck. Arriving in an asylum camp about mid-2011, he told the staff there that
I have health problems. When I [was] in [my home country] they […] tortured me too much. […] And sometimes I feel very bad. I […] think that maybe tomorrow I’ll die.
After he was moved to a transit centre and thereafter to a cantonal centre, he again told staff about his health issues, but he was still not given any care in this respect. During this time, Peter also had difficult experiences with a general practitioner:
[I said] ‘I have a problem’. He asked ‘why do you come here so often?’ [I came] two or three times during one week because […] my health was very bad. When I go [again he asked] ‘why are you here?’ I say ‘you don’t know anything’.
The same doctor diagnosed Peter with a stomach problem and subsequently sent him for surgery at a hospital. But apparently he did not recognize, or could not adequately respond to, Peter’s mental health problems. Peter’s inclusion in healthcare remained partial.
Again, his interactions with healthcare staff in the hospital and the surgery itself were good experiences, and Peter reports having been well informed and treated. During the interview, he explains in detail how the endoscopy was explained to him. He reports feeling afraid:
You know, in my land, sometimes some people who are having an endoscopy, […] they have much pain […] and then they say, ‘ah you may change completely […] it’s not good’.
Laughing, he says that after the surgery,
when I woke up, they said ‘ok it’s finished’. I thought that maybe they start now. They say ‘it’s finished’. I say ‘What? Ah, it’s finished’.
Still, his mental health problems remained untreated as his application for asylum was rejected and he was transferred once again. For Peter, every transfer meant an unannounced and unexpected disruption that was difficult to understand. Throughout the interview it was not easy to follow with precision all of the different places he was transferred to. The hospital’s doctor, Carl, confirms that this is also a difficulty for healthcare professionals: ‘In Switzerland you don’t know how the patient did at his last placement’. At his next placement, in emergency accommodation, Peter’s mental health problems are still not adequately treated:
They gave us too much medicine. ‘You use this one, this is very good, you use this one this is very good’. […] But I think […] I have another problem. And they gave me another medicine, because ‘ah, we have a sample here’.
Adding to his difficulties, there is the insecurity associated with life as an undocumented migrant, at the constant mercy of the authorities. This is well illustrated by Peter’s account of an encounter with police at a time when he was already receiving treatment in the NGO’s network:
We [Peter and a friend] were in a car and police came and they [stopped] us and they said: ‘What is this?’, and I say: ‘No no no’ and then they caught me and one night I was [in prison]. I told them that I […] have a doctor. They say no. The next day a translator came and they say: ‘Why you are not going back to your country?’ I say that I have problems there. They said: ‘It’s better for you to go back’. The next day, another of these guys came with me to a big police station. […] They took my fingerprints again and then they said: ‘Now you are released’. And every time, when you see the police you are afraid. If they catch you or if they [stop] you then you have problems again.
As the police do not take Peter’s reference to his treatment within the NGO’s network into consideration, he is left with no other option than to try and explain why he does not want to go back to his home country. He is therefore reduced once more to his status as failed asylum seeker, once again having to undergo the typical steps of the asylum procedure, such as providing his fingerprints. The way Peter relates this episode shows how helpless he feels during the interaction with police. He concludes:
You know I left [my country] to feel safe […] but here it’s the same situation. Every time I’m afraid […] when police [stop] me.
Peter is put in touch with the NGO at the beginning of 2013, one and a half years after his arrival in Switzerland, via a counselling service for undocumented migrants:
First, when I was here, when I slept, I saw everything that happened to me in my land. And I could not sleep well and I could not eat and everything was very bad, and then I came here and then they gave me treatment and slowly, slowly I am feeling better.
Inclusion at the NGO is a turning point for Peter twice over. First, he is referred from the NGO to outpatient psychiatric care. This therapy, he says, is doing him a lot of good. Again, he stresses the importance of continuity of treatment:
Because, [the psychiatrist] knows me very well […] and he knows my situation he treated me very slowly, slowly.
Peter’s ‘slowly, slowly’ marks a contrast to the haste and disruption he describes in his life as a failed asylum seeker. In addition, the NGO is an important place to help him address some of the problems his legal status is causing him. Echoing Suzanne and Béatrice, he talks about the difficulties he experiences because he is unable to help his family. He becomes very sad at this point of the interview, but at the same time he relates how the NGO addresses this issue:
I cannot do anything for my family. […] And I am very thankful to [Julia] because […] she asked me: ‘Why are you worried?’ I said ‘my mother is very sick’. And she said ‘ok don’t worry. You bring me all the reports’. […] And she looked at it and also discussed it with doctors and she gave me medicine I’m sending to my mother.
In this instance, the NGO gives Peter the ability to act upon a health issue he would not otherwise be able to address. A bit later, he says about the NGO:
You know now these people are like my family. Because, I don’t have another family. But I’ve spent a long time with these guys and […] when I have any problem, then I discuss [it] with these people and sometimes I feel happiness and I discuss it with these guys.
We can see here that for Peter, the role of the NGO and the meaning of inclusion in healthcare are quite broad. The NGO’s professionals are described as a family, essential to Peter’s health and wellbeing. This statement at once expresses the immense benefit that both the NGO and psychiatric treatment have provided but also the loss of social ties and securities that Peter has experienced. This account also shows that, for Peter, inclusion in healthcare cannot be seen as tied to one locality or person. His health is embedded in a wider context, encompassing family left behind and new connections built up in the context of immigration.
For the NGO’s professionals, these challenging situations are a vital part of their motivation. Julia emphasises her interest in transcultural care and sees her work as being at the nexus between culture and health. For her, this means identifying a patient’s needs and his or her way of communicating them. This begins with listening to patients:
it’s almost as if you use [their concrete health problem] as a stepping stone to gently approach the much more complicated problem, that of their legal status.
Melanie, the nurse, again contrasts the NGO with ordinary care organizations:
It’s not at all like care as you know it from a hospital, or an old age home, or home care services. […] They come here with everything and they bring along the most complex stories. Not all of them, but things become quite complex very quickly when their health is impaired in some way.
A further important quality of inclusion as far as the professionals are concerned is to build up trust with the patients. As David states: ‘Even as an NGO, you don’t just have their trust’. Melanie echoes this sentiment:
When I work as a nurse in hospital, and I enter the room in my white uniform, people […] assume my good intentions. Here, it’s not like that.
This again essentially means that there is a need to take time to get to know patients better, as she describes:
I think our advantage here is that we can take our time in most cases, or we invite someone to come in a second time. And I think for our patients that’s extremely important. They feel taken seriously, they feel respected.
Certainly, the biggest issue that still affects Peter’s health is the threat caused by his immigration status, which excludes him from most parts of civil life. Living for much of the time at a friend’s place, he remains uncertain that he won’t be transferred again, or even deported. His inclusion in healthcare thus remains precarious, while he has developed some problems with his blood pressure and heart. For instance, at the last centre where he stayed, he could go to a general practitioner who ‘treated me very well and regularly and also he’s very nice, a very, very nice guy’. But after his most recent transfer, he doesn’t know, yet again, which doctor he is allowed to visit.
Peter’s story shows the difficulties that undocumented migrants can have when it comes to inclusion in healthcare for certain conditions, even if they are insured. Accessing the NGO is the most important moment for inclusion, not only because it leads, finally, to addressing Peter’s condition through adequate therapy, but also because it provides an opportunity to talk about the problems that stem directly from his legal status. We have seen with Béatrice’s story that the administrative aspects of inclusion sometimes have to be adapted to the specific circumstances of undocumented migrants. With Peter’s story, we begin to see that in some cases the care process itself has to take specific needs into account. Peter needs to talk about his lack of perspective, fear of deportation, or issues such as caring for a family left behind. This in turn enables the patient to confront health issues and to take an active part in his own care.
On the other hand, for specific physical conditions and the treatments they require, inclusion in healthcare can be quite unproblematic and the interaction between medical personnel and patient does not require special measures. In this respect Peter’s statement echoes the stories of Suzanne and Béatrice.
Importantly though, Peter’s account shows how difficult it can be to provide continuous inclusion both during and after the asylum assessment process. Being moved from one centre to the next not only contributes to the insecurity of the patients, but also cuts existing ties to healthcare professionals who consequently cannot get to know their patients and, instead of coming to recognize more hidden health issues as a result of increased patient familiarity, end up being overstretched themselves, adding to patient exclusion from healthcare.
At the NGO, about 90% of the patients do not have health insurance. As already discussed in the last chapter, for the general population of undocumented migrants in Switzerland, this percentage is estimated to be close to 80%-90%. It is unknown how many undocumented migrants have conditions that require medical treatment, though, given these numbers, features of the case we are about to discuss might well be common to at least some of them. Other patients without insurance who manage to access the NGO and get treatment through its networks might also share Maria’s experiences.
Maria, a woman in her late thirties, fled political upheavals in her country of origin. She was imprisoned and gave birth to her son during migration. Arriving in Switzerland in 1997, she was treated in a psychiatric hospital for about two or three years. Though her memory of the time has become blurry, she does her best to explain her condition:
It was like I was dying. There was no life in me, I just knew that I was still living. For years […] I had a stiff neck.
Upon her release from the hospital sometime between 1999 and 2000, her request for asylum was turned down. But because she had just married a man with a Swiss residency permit, she was allowed to stay. Her son was naturalized. However, because she and her son were ill-treated by her husband, she decided to get a divorce even though that meant losing her right to remain in Switzerland. As she did not dare work on the black market, she also lost her health insurance.
Some time passed and she became engaged to a new partner around 2008. But this marriage is not recognized by the authorities. The procedures to legalize her stay are still ongoing, and have, in her view, taken on Kafkaesque dimensions:
I had to appeal to the state. The state refused. Then my lawyer said there’s another option, it’s called federal [court]. Then they refuse. […] So, I appealed to the [state secretary for] immigration, the state [court] and the federal [court] three times. So I do the appeal nine times. So it cost my husband more than 20,000 Swiss Francs.
She reports that the immigration authorities tried to deport her several times but could not execute the deportation order. She describes the fear this has caused her:
If they want to deport you, they will come to your house early in the morning. So then after they attempted and they couldn’t succeed, I became afraid. Even in the night […] if I should hear a car, I would get out of bed to go and see if it’s the police. […] So it was really a terrible experience.
She highlights another important aspect of her situation, which also impacts other undocumented migrants’ health, as we will see later:
I’m ashamed to tell people my story. […] Because people sometimes they will laugh at you when you tell them you have a problem. I always keep everything inside, keep everything inside.
Finally, she directly connects some of her health problems to her legal status: ‘I develop [problems with my] blood pressure because of this paper problem’. But the situation is such that she cannot address these issues. She understands that with all the money her husband is putting into the legal process, he cannot afford health insurance for her on top of that.
With her legal situation remaining unresolved, Maria’s health goes from bad to worse during a period of seven years from 2005 onwards: ‘So my blood pressure was high, I was sick, you know it started slowly slowly’. A whole cluster of symptoms built up in severity during this time:
That tiredness. […] I cannot describe it. […] if I should raise my hand […] it’s a big job for me. My heart is beating fast [because of a] small thing. I don’t enjoy anything, I don’t enjoy my body, I don’t enjoy anything. Just to sleep and cover myself. Two weeks before my menstruation, I’m in another world. Two weeks after my menstruation is like war for me. I cannot even describe the pain. The pain is even more than punishment.
She knows there is medication that would help address her blood pressure, but it requires a prescription. Fraud becomes seemingly her only option:
Sometimes I just have to go and lie to the pharmacy because I don’t have insurance. [I say] that I want to send this to […] my mom.
In this way, Maria sometimes obtains medication to treat her high blood pressure. At other times she is not so lucky and is only given herbal remedies. Later in the interview, she explains how her success at obtaining effective medication is dependent upon the pharmacy’s staff:
Because they used to have different people at the pharmacy. So there’s a man [who] would always sell it to me. But if it’s just this lady, she will tell me ‘ah no’.
Again, the patient must depend on goodwill, but also on the professional’s willingness to bend the rules. Her attempts at inclusion therefore marginalize her and also impose a potential risk on the professional involved. To treat her many other problems, Maria’s only option is Dafalgan, a brand of paracetamol: ‘I’m taking Dafalgan like fruit’.
Maria contacted the NGO in 2012 through the same organization as Peter. From there, she was first referred to be examined at a lab and by a gynaecologist in the network. At both places, but especially at the gynaecologist, Maria reports that she received very good and humane treatment. ‘I even didn’t have to pay’. Again, the fact that there was no immediate need to pay in order to receive care is surprising and contributes to a positive experience. Maria is diagnosed with a fibroid in her breast and uterus, the latter causing heavy menstruation. She is also diagnosed with iron deficiency anaemia, high blood pressure, and depression.
She is given a prescription for blood pressure medicine at the NGO, her low iron is treated at the lab, and her depression is also addressed. As a result, after over seven years, she regains an awareness of the difference between good and bad health. It is her most important moment of inclusion in healthcare:
You know after a while you don’t know what’s normal and what’s not normal. Yeah. You see before, when I woke up with this headache, after some time, my body was like ah, it’s normal life, to get up with a headache. But like three months after the treatment I started to feel good in my body. Then I started to say ‘oh God, so this is how I am supposed to live’. So it is like, before I was in bondage but I didn’t know. I knew but I didn’t really know that I can be free. So I didn’t know that this suffering could be avoided. I thought ah, that is how I will live. That is how it is. But the day that I started to get better, it’s like my eyes opened and I’m in another world.
At one point, Maria addresses the recorder directly, as if willing it to pass a message to an audience:
I thank [the NGO] one million times. […] Because maybe I could have been a stroke patient. […] I appreciate their good work. If God blesses me in life and gives me a job I will join to support them. They see illegal people as human beings.
Maria’s statement honours the work of the NGO and echoes Peter’s sentiments, but, at the same time, it highlights Maria’s dependence on the charitable organization.
Importantly, the fibroid causing her heavy menstruation requires surgical intervention. Unfortunately, such a procedure is impossible to finance without insurance. Maria is resigned:
It will take a miracle. […] But I just pray that the immigration [office] should answer me. Quick. So that I can get a job.
Thus, even though Maria has been freed from the ‘bondage’ she did not know she was suffering, she is still far from freedom. The fibroid, but also her difficulties concerning her legal status, have now been weighing on her for a very long time.
Theoretically, she and her partner could choose to cease their legal efforts and use the money to pay for insurance instead, but that would terminate any hope of regularizing her legal status, of living a life without fear, and of gaining legal employment. As Julia puts it, ‘we are all born with this insurance’. Indeed, Swiss citizens are included into healthcare from birth by virtue of their citizenship and later thanks to their employment which allows them to pay for their insurance policy. Furthermore, if Swiss residents cannot afford health insurance, they can rely on social welfare. In Maria’s case however we are for the first time confronted with a situation in which the lack of work and the absence of citizenship directly prevent a patient from undergoing treatment, something that goes against the common perception that in Switzerland healthcare is within everybody’s reach.
As in the case of Béatrice, professionals work under constant financial pressure in the background to provide even the partial and precarious inclusion afforded to undocumented migrants. To send uninsured patients for additional care outside the NGO is, according to David,
always problematic. Well, I should say, almost always. […] It’s immediately a question of money. […] In my surgery I was used to being generous, like [for example] everything that was a potential diagnosis was checked in the lab. Here, we can’t do that. So I have to restrict myself to what is really important to know. […] It’s a constant balancing act. How much risk can we shoulder ourselves, and when has the line been reached where […] a more detailed examination or a specialist or the like is indispensable.
Maria adds to the doctor’s statement when she recounts her first visit to the lab:
I think at the lab they made a mistake. […] The doctor here said I should do like two or three tests. So they did like ten tests for me [laughs] by mistake. So […] they find out that I have anaemia.
For Maria, this was a lucky accident. For the NGO though, such mistakes can rapidly turn into financial problems, as David explains:
A young woman had a broken finger, and I wasn’t sure whether it was broken or just badly bruised. So I sent her to [a hospital] with a referral for an x-ray. But there, she was seen by an orthopaedic surgeon, who then immediately operated on her. From a medical perspective, perfect. But in terms of cost, something like six or seven thousand Swiss francs. And then, afterwards, the discussion: ‘Hey, we’d only asked for an x-ray’. That got very complicated.
The NGO’s close monitoring of the interactions between its patients and the healthcare professionals in its network, which we encountered in Béatrice’s story, is undertaken partly in order to avoid situations like these.
Again, for the professionals of the NGO, the patients’ financial difficulties are mirrored by their own restrictions. Asked about how well they think the Swiss healthcare system functions with regard to care for undocumented migrants, David says: ‘What seems very problematic to me, is how much of it is tied to money’. Melanie wonders why most healthcare for undocumented migrants is provided by NGOs. For her, it would be best to
incorporate this into a regular structure as with other things in a canton. Because then we would have funding and also some structures.
In Béatrice and Suzanne’s accounts, settling in helped with their inclusion into healthcare. Maria’s story illustrates just how difficult acquiring insurance and healthcare can be when the person involved has no income because she has no access to either the legal or the illegal labor market. In order to keep a very small amount of control over one’s healthcare and health, engaging in fraud while depending upon someone’s complicity is an option. Marginalization is the consequence. Another aspect of the situation is that a sense of what it feels like to be healthy is lost over time. This is clearly demonstrated by the contrast Maria describes between her state before and after her inclusion at the NGO and in its network.
If we combine these accounts with Peter’s story, we are building a clearer sense of the mental pressures that weigh on undocumented migrants living at the mercy of the immigration authorities. At the same time, we see the importance of inclusion in addressing these specific issues and giving the patient room to talk about what otherwise must remain in shadow. We also see once more the extent to which the undocumented migrants are dependent on the NGO for inclusion in healthcare, and overall we have a clearer picture of how financial restrictions and dependence on the goodwill of others are common to both patients and the NGO.
Finally, a further interesting aspect of Maria’s story is the paradoxical ‘choice’ by which aiming for inclusion in healthcare involves taking actions that could harm one’s health. Inclusion in an official economy, a job market, and a system of social welfare are unspoken prerequisites for inclusion in healthcare. As these are lacking, Maria’s only feasible strategies for inclusion worsen her health at the same time. If she decides to take out insurance, she has to give up her efforts to legalize her stay. This worsens her health by completely eliminating the hope that she will ever escape her situation of being undocumented. Conversely, if Maria decides to continue her efforts to legalize her stay, she worsens her health by leaving her fibroid untreated. Maria’s will not be the only case that results in this unpalatable choice. To a certain extent, such paradoxical consequences might also exist for citizens in precarious financial situations, but they appear here with a force and brutality hardly imaginable for people who, in the end, can still rely upon social welfare.
The Swiss law on asylum states that ‘asylum seekers must state any serious health problems of relevance’ (AsylG Art. 26 al. 1) during the asylum process. Usually, requests for asylum on purely medical grounds are quickly turned down. However, in some cases asylum seekers are granted a residency of one year with a permit, because in the country they have left behind
a necessary treatment is not granted or not granted sufficiently and the return would result in a rapid and life-threatening deterioration of health. (Der Schweizerische Bundesrat 2016)1
In 2015, 201 people were granted a temporary residency exclusively for health reasons. This amounts to 4% of the one-year permits granted that year (Der Schweizerische Bundesrat 2016).
It is 2016 and Jonathan has been granted a one-year permit for medical reasons only weeks before his interview with me takes place. Had the interview happened later, he would probably have cited this as his most important moment of inclusion in healthcare. But as the event is so recent, and he has already been in Switzerland for eight years, Jonathan concentrates on the time before the permit was granted.
Jonathan’s story starts with the deaths of his two brothers; like him, both suffered from a mixed form of type I and type II diabetes. His sister advised him to leave his home country and the family started selling its cows so that Jonathan could afford a safe trip to Switzerland in 2008. However, on his journey he had no means to care for his diabetes. At the time of his arrival in Switzerland, he was immediately hospitalized:
The doctor checked my sugar and it was, oh, very, very, very serious. So, immediately they took me to the hospital. I stayed there maybe one or two weeks […] because the diabetes was very, oh, no insulin […] you know.
From this time onwards, Jonathan enrolled in the asylum process. His request was rejected by the authorities because — according to the officials — diabetes can be treated in Jonathan’s home country. In 2010 Jonathan decided to go into hiding. Other than Béatrice, Maria and Suzanne, he did not have any contacts in Switzerland. Trying to get work, especially while suffering from untreated diabetes, did not even seem to be worth considering, so Jonathan adopted strategies to take care of his health that harmed him further:
I eat everything, which is not allowed you know. But I don’t have no choice.
With no access to insulin, he took up walking in an attempt, as he says, ‘to get the sugar down’ and states that this caused a lesion on his foot that did not heal. For Jonathan, this wound presented a severe physical problem, and, in light of the circumstances of his brothers’ deaths, was also a source of a very profound fear for his life:
The foot was also a very big problem for me because my brother had it in my country and he couldn’t make it.
After some months, Jonathan’s next attempt to be included in healthcare was to file for asylum a second time:
It was very, very difficult for me; I didn’t have medicaments, so I was sick. So people advised me: ‘You have to make another asylum [claim] because you are sick’. And this was very dangerous.
We will see later, when discussing Fanny’s story, that in certain very serious and urgent circumstances, undocumented migrants may engage in the asylum process for purely medical reasons, which also means facing an increased risk of deportation. Jonathan, however, did not see any other possibility to handle his rapidly worsening diabetes and he says that he was again sent to hospital immediately. At the end of the treatment he reports that he was discharged with ‘a lot of medicine’.
During the previous and the subsequent stage, the conditions for Jonathan in Switzerland were similar to those in his home country. He finds it very hard to understand why, in a country with such a good healthcare system, he was not given care during these periods:
It was even a surprise for me, you know. I said wow, I am here but I have no help. Yeah, I always think about this, you know. I said, never mind the paper; I am a human being. The paper they can forget about it, but for my life, you know. […] I was thinking that maybe if I came here, it would be better. But […] [it was] not like that, ah. Not like that.
Finally, some months later in 2011, an acquaintance told him about the NGO. When Jonathan attended for the first time, he travelled there by public transport without a valid ticket and risked being caught by the conductor and thus discovered. Given Jonathan’s state at that moment in time, it is easily understandable that the care provided at the NGO and through its network was a turning point in his story:
This means that if I don’t […] see these people so quickly, then it would have been too late.
Like Peter, he describes a slow process of building relationships, of getting to know and trust others: ‘We started, you know, not very quickly, but slowly, slowly, knowing each other’. This process resulted in decisive moments that shaped Jonathan’s inclusion in healthcare. Given his very precarious social situation, the NGO made an exception and financed his insurance itself and therefore, for Jonathan, the insurance itself was a less decisive or visible factor, and he only mentions it at the very end of the interview.
Much more important for him is the fact that he is taken care of by a diabetes counsellor within the NGO’s network. She became an important person for Jonathan, opening up other possibilities for inclusion, and thus substantially contributing to his health.
But inclusion is still sometimes difficult. For instance, due to medical complications, Jonathan sometimes needs to access emergency services. One night, when he was still homeless, he had a very bad stomach ache:
So I don’t know what to do […] I have no money to call the taxi. I don’t […] contact the ambulance because if […] I contact the ambulance what can I do? I have no papers, I have no insurance card, nothing. So, I said, these people in the hospital know me […] I have to go by myself. So that night I walk to the hospital from [a place about one hour away on foot]. […] I have to walk tall [holding himself upright], because of the police. When I walk I have to sit, I walk, I sit, oh, […] that day I was thinking that I’m going to die.
The lack of a document to show to the ambulance drivers is here contrasted with the advantage of knowing people in the hospital. This emphasises again the importance of, and dependence on, personal relationships when it comes to inclusion in healthcare. The emergency unit itself will take care of him as he has insurance, something that at this point in time Jonathan has no doubt about. But because he lacks an insurance card he walks for an hour to the next hospital, late at night and in a critical state of health. Fear of being stopped by the police accompanies him all the way.
In a non life-threatening situation if a patient does not have an insurance card, this can raise professionals’ suspicions about coverage of costs and thus foster exclusion. Jonathan reports that he had to remind doctors that they would be paid to treat him, as, despite being an undocumented migrant, he did have insurance. Only the reference to the NGO made them ‘relax’ according to Jonathan. As he saw it, he had to handle the professionals’ fear of unpaid costs, even though he was the one in need of help and support. He contrasts this with the situation at the NGO where ‘people […] don’t care if I have paper or not’. As the diabetes counsellor, Caroline, says about Jonathan:
He has always received treatment because he had insurance, and then it depended a bit on the individual people.
She states that sometimes there were ‘reservations’ or language problems, but on other occasions people took extra care because they knew the patient was an undocumented migrant.
Certainly, receiving care and being able to obtain it on his own at times was a big step forward for Jonathan. Still, bringing us back to his social situation, he says of the NGO:
I give them a tough time you know. Because [laughing] I have no choice you know. When I knock the door and this lady opened the door and saw me she said ‘oh my God [laughing] it’s him again’. Yeah, because she knew that at the moment I get inside I just start to complain. You know, I was a headache. I had no place to go, no place to go.
With regard to the social situation of undocumented migrants, Jonathan presents a paradigmatic case of what happens when inclusion in healthcare remains very haphazard due to a combination of multiple exclusions.
We can elaborate upon this point by returning to the professionals’ point of view. Jonathan’s diabetes counsellor, Caroline, says that with the insurance, she was able to prescribe insulin, needles, and syringes for him, ‘just like for a Swiss patient’. But it was difficult for the homeless Jonathan to store the insulin. He says that he sometimes kept it in a little stream where he could cool it. Sometimes he also stored the insulin with some colleagues who lived in a nearby centre for asylum seekers. He is proud that he found ways to help himself even in difficult situations. But in the end, the insulin ‘didn’t help him much because he had nothing to eat’, as Caroline explains. She also reports that she has not been able to properly adjust Jonathan’s medication because he was always afraid he might become hypoglycaemic in public and then be found out by the police.
Caroline reports that she and a doctor at her hospital did a lot of ‘social work’ to improve Jonathan’s situation. She mentions the following activities: organizing housing, organizing money for podiatry, accompanying Jonathan to show him the place where he could obtain orthopaedic shoes, forwarding bills to the NGO, giving financial guarantees, acting as a contact person for other hospitals and informing them about Jonathan’s health status and medication, informing Jonathan about appointments, organizing surgery for his foot and eyes, and providing Jonathan with her private phone number. However, even Caroline’s resources are not limitless. For instance, when her colleagues from the hospital call her to inform her that Jonathan has nowhere to go after he wakes up from anaesthesia, she cannot help either. Together with the hospital doctor and the head of the NGO, Caroline always tried to find a way to maintain ‘a small pot of petty cash’ reserved to help Jonathan. She concludes:
We can do an amazing job. […] Yet, I’ve never gone home with a clear conscience because you just know everything else doesn’t work, and then the best healthcare is useless.
For the professionals, this creates a paradoxical situation, as Caroline explains:
Sometimes we were almost happy when he had another episode. Then he could go back to hospital for three or four days, and he had something to eat, a shower, a warm bed.
Carl, who is a doctor in the emergency unit of a hospital, confirms this by saying that patients sometimes attend the unit in the winter because they have no place to sleep:
I don’t think our hospital is set up for this. […] There are no real [associated] social services as there are in other countries.
The asylum process enabled Jonathan to access healthcare at the beginning of his story, and now healthcare organizations help him to obtain some minimal social inclusion. This in turn makes healthcare interventions more effective.
Jonathan’s social situation and his ability to look after his own health and healthcare improved only when he was granted a one-year permit. NGO employees and healthcare professionals helped him to file the application this time. It was accepted because the immigration authorities recognized that, unlike the diabetes itself, the long-term effects of Jonathan’s illness cannot be treated in his home country. It was thus the restricted nature of Jonathan’s inclusion in healthcare in Switzerland, particularly during the early stages of his time in the country, that finally ensured the success of the application for the temporary permit. Exclusion from healthcare therefore made possible Jonathan’s political inclusion, and thus his ultimate inclusion in healthcare beyond the charitable support of the NGO.
Given his very precarious social situation, it is not surprising that Jonathan does not spend a lot of time thinking about how his insurance is organized and paid for. Still, in the background, numerous institutional and organizational arrangements between the NGO and insurance companies have to be made in order to insure undocumented migrants.
In Jonathan’s case, the NGO first provides an address for all correspondence with the insurance company. The NGO also finds a person with a Swiss residency permit in order for the relevant financial transactions to take place via a Swiss bank account. However, the insurance company also has to make special arrangements. Patricia’s employers have created a special department that deals exclusively with asylum seekers and undocumented migrants. As Patricia explains, the employees in this department
deal with the more delicate cases […] and nobody else does, because only very few have that level of training.
The training and sensitivity is mainly required for the process of verifying that the applicant indeed has his or her residency in the country. Insurance employees must not contact the municipality for this verification. Furthermore, it is important that the staff of the insurance company know how to react to inquiries by municipalities, as Patricia points out:
When someone calls from the municipality and makes enquiries about somebody, then we ask them why they’re calling and we tell them that we’re not permitted to give any information. In those moments, we’re very unapologetic and very unrelenting because they’re just determined to get their hands on this data by all means necessary.
Once all the prerequisites have been arranged by the NGO and the insurance company, Patricia explains that the application for insurance has to be filed in a rather unusual way:
[A regular application] is seen by umpteen people, from the scanning centre to the internal mail clerk, everybody can look at it because the document is open. And later we also scan it into the system, electronically. And we aim to avoid all of that by saying that [you have to send it directly] to our department [using] a code number indicating that it’s about an undocumented migrant. With those [NGOs] that we have [this] agreement with, that works. And also, [using this system] no applications are lost. [You see], that is the risk when someone just applies [by themselves], there’s a real risk that the application ends up just anywhere.
Not all insurers are trusted by the NGO to guarantee this level of data protection and exactitude. Once more, undocumented migrants are included in healthcare thanks to specific arrangements and personal contacts that build a relationship of trust, this time between organizations. The personal investment and understanding of the insurance employees is also needed, as Patricia describes:
What I personally think is very important is the personal [attitude] and awareness that these people really have nothing here, they didn’t choose this situation.
From a patient’s perspective, all these special arrangements and the need to use someone else’s address and bank account details make them heavily dependent on others for their inclusion in healthcare.
Finally, we must explain why Jonathan has no insurance card. This is quite a common problem for undocumented migrants. We have already encountered it in the story about Nicolas’ hospital visit in Chapter One. In order to issue an insurance card to an undocumented migrant, the insurance company has to put in a request for an ‘Alters und Hinterlassenenversicherung’ (AHV) number, the Swiss social security number. This procedure is required for foreign diplomatic staff, for example. But as Patricia states:
Insurers tend to be reluctant to issue [insurance] cards, especially for undocumented migrants, because one doesn’t know what they want to use it for, are they going to get medicine and so on. That said, I must say our insurance is not like that.
The suspicion that the card will be misused is the difference between the case of diplomatic dignitaries and that of undocumented migrants, and as a result insurers do not issue cards to undocumented migrants, or do so very unwillingly. For the patients though, the card may be very important in order to be included in healthcare. From the perspective of the administrative staff of the organizations that deliver healthcare, the absence of the card can create suspicion about the availability of financial coverage, as Patricia explains:
You try going to the pharmacy with just your insurance policy document in hand and try to get medication. In the best case, they [the pharmacy staff] feel suspicious and so they just refuse the customer. As a rule, they always want the number of the insurance card so they can validate it electronically.
The insurance card is needed to validate the patient’s claim that they have an insurance policy. The hospital’s administrative employee, Andrew, mentions this too. He says that if a patient has an AHV number, he can check it and he can also confirm whether patients are registered with a specific insurance company. The problem when a patient arrives with neither a card nor an AHV number is that:
We don’t find these people in our searches. And then it gets difficult. Because we know he’s insured but we can’t verify it. And as part of our processes, well, we verify that kind of thing.
The NGO sometimes provides a letter of guarantee to reassure the healthcare organizations’ administrative employees that the costs are indeed covered. The NGO’s remit may go even further to include ‘advocacy’, as the nurse, Melanie, explains, ‘to speak for a patient, to protect him, or to elicit the best possible outcome for him or her’. At the same time, and stressing again the agency of undocumented migrants, she adds:
We only advocate when necessary. I mean, our people are extremely resourceful and most of them are good at getting what they need. I think it’s important that we’re here and that we help them. But you also need to let go. I mean, you don’t want to make them dependent on you. […] We don’t want to see our patients as victims. Of course, they are to a certain extent but if you see people only as victims you lose sight of what they are actually capable of. It’s kind of a fine line.
Jonathan’s story offers numerous insights into the question of how undocumented migrants are excluded from and included in communication related to their healthcare. First, it demonstrates the nature of the strategies for inclusion that are adopted by migrants when their chronic conditions worsen and they do not have the support of the NGO. Self-care strategies that threaten their health can be adopted. Inclusion is not sought via emergency care but via a risky and often futile asylum process that enables inclusion for a short period only. Still, these strategies also show a will to stay proactive when it comes to one’s health. In addition, the brief inclusion in healthcare provided by the asylum application process is again contrasted with the description of care at the NGO and in its network, which offers a more lasting option.
At the turning point of Jonathan’s story, we see again that administrative aspects of inclusion in healthcare, like taking out insurance, need specific arrangements. Patients are again dependent on the financial support and specialist knowledge of an NGO and a willing insurer. Jonathan’s story also shows us how inclusion can remain difficult, even once a patient is insured. The problems that stem from the lack of an insurance card highlight again the importance of administration, even for such a basic need as an undocumented migrant’s ability to call for an ambulance. Jonathan’s story also vividly reveals that prejudice against undocumented migrants on the insurer’s side, and the suspicion of administrative and medical personnel regarding uncovered costs, are tightly tangled and create difficulties that can hamper a patient’s inclusion in healthcare. As in Maria’s case, we can see that inclusion is dependent upon the goodwill of professionals, even if the NGO can be relied on to facilitate interactions. Still, we can see that not only the patients themselves, but also the NGO’s healthcare professionals, stress the importance of giving patients the space to be agents of their own inclusion.
Jonathan’s story also provides evidence to support the idea that the inclusion of undocumented migrants in healthcare must take their specific needs into account. The importance of handling the scheduling of appointments, taking care of family members, and making space to talk about problems otherwise well-hidden has been revealed in the stories of Béatrice, Peter and Maria. Jonathan’s narrative takes these aspects to their extremes, showing the limits of the capacities of professionals to balance the consequences of a patient’s exclusion from citizenship.
Finally, as in Maria’s story, we see again that the need to be included in healthcare and the act of causing harm to one’s health can come together in paradoxical ways. Ironically, getting the papers to legalize Jonathan’s stay is only possible because of his exclusion from healthcare, which had physically damaged him to the point where deportation could not be carried out. Jonathan had to literally become sick enough for his status to be legalized and his healthcare financed by the state. As we already saw in Maria’s story, Swiss healthcare requires a certain level of inclusion in economic or welfare systems as a prerequisite. Inclusion and exclusion start to operate paradoxically when these prerequisites are not met. In the case of undocumented migrants, these paradoxes result in lasting scars on human bodies.
1 ‘wenn eine notwendige Behandlung im Heimat- oder Herkunftsstaat gar nicht oder nicht ausreichend zur Verfügung steht und die Rückkehr zu einer raschen und lebensgefährdenden Beeinträchtigung des Gesundheitszustandes führt’.