This article is part of a wider research project concerned with how healthcare workers and undocumented migrants manage dilemmas related to accessing healthcare services in Belgium. Belgium has a federal legal framework covering who should account for the provision of medical services to undocumented migrants. They can obtain a medical card, i.e. a three month permit to access regular public healthcare services, after undertaking a parallel administrative procedure via a physician and the Public Social Welfare Office (PSWO) in the municipality where they live. Once they have received a medical card, medical costs are covered. However, research has shown this legislation to be poorly implemented, evinced, amongst others, by the utilization rate, and the per capita expenditure, being considerably lower than Belgian residents (1).
The data presented in this article are based on focused, multi-site ethnographic observations and on 45 semi-structured, in-depth interviews with healthcare workers in urban areas in Belgium. The observations informing this article were conducted by the author between September 2016 and September 2018 in two different sites where access to healthcare services was negotiated, notably in the emergency department in a Brussels hospital and in a reception centre that provides legal advice, day-shelter, and assistance to undocumented migrants. The level of participation during the observations varied according to the setting. Participants for the interviews were recruited by means of a purposive sampling technique in Brussels in order to represent different clinical professions (nurse, GP and specialist) and institutional settings (NGO-clinic, GP-practice, community health centre and hospital). All participants were health professionals who were frequently consulted by undocumented migrants. They are not necessarily representative of those working in the healthcare services as a whole. Healthcare workers participating in the study provided their informed consent with the understanding that their identities would remain confidential. Accordingly, all names are pseudonyms for reasons of anonymity. The research design was approved by the relevant medical ethics committee.
During the interviews and observations, we explored how healthcare workers adapted or changed their care practices as a consequence of state-imposed categorizations, distinguishing between documented and undocumented patients. We focused on which pragmatic approaches they developed and how these were limited by institutional policies, administrative requirements and professional guidelines. We asked them to explain how they evaluate their own approach and what meaning they ascribe to these care practices.
These data were analyzed using the qualitative software NVIVO 11. Coding was carried out in the language of the interview by the author. The quotes have been translated from the original language into English for this publication. To analyze the data, we distinguished the practices of responsibility of healthcare workers in different concrete relationships when they encounter obstacles to access healthcare for undocumented migrants. We analyzed how health care workers accept, assign and deflect responsibility for specific demands of care, and how this responsibility is negotiated with undocumented patients, colleagues and healthcare workers in other institutions. For the analysis informing this article, we specifically focused on how healthcare workers described these practices in relation to themselves. In other words, in this paper we do not focus on visible practices of dissent that are system-oriented, nor on practices that are aimed at changing other’s behavior, but on less visible practices in which healthcare workers describe a relation to themselves. This analysis was guided by Foucault’s concept of “care of the self”, as a range of practices and techniques to act upon oneself and to steer how one wants to become. Broad themes were initially derived deductively based on this concept. During the coding, subthemes were generated inductively as the coding progressed. Along the coding process both the overarching themes and subthemes were continuously reworked until a satisfactory understanding of the “practices of the self” was reached.
Practices of the self
In this section, we describe different ways in which healthcare workers adapted or changed their own practices when facing supposedly inadequate forms of care in relation to undocumented migrants. It consists of the different techniques that healthcare workers develop and impose on themselves in their search for better ways of caring. Together, these elements provide a detailed description of care of the self in a context of barriers to healthcare.
Avoiding and controlling affective responses
Many respondents mentioned that, during consultations, they were not aware about the undocumented status of their patients. On further probing, it turned out this was not because the information was not available. Francine[1], an experienced doctor at an emergency department of a public hospital, says:
Francine: “But I prefer not to know it at first. It's an advantage for me not to know, I think.”
Interviewer: “Okay. So it's an advantage...”
Francine: “Just... For me, it doesn't matter at the start, it will matter at some point, but at the start... If someone says it [that the patient is undocumented] to me, ok, then I know. But if I don't know, that won't change much. It is true that if I look at the file that I receive from the administrative reception, I can see if indeed they have a mutuality number... I think the advantage of not knowing is that we do not have any a priori. We see the patient without judging too much. So it is important to know that he is in a precarious situation, when it is necessary to make [a treatment], to be more attentive to certain things. But for me, it does not have any disadvantage of not knowing it.” [2]
Francine mentions preferring not knowing about the residence status of the patient at the start of the consultation. She argues that knowing the residence status will affect her a priori judgement. She is aware that information about residence status is collected at the reception, but deliberately avoids knowing this information, and waits for the patient to talk about his residence status, when this interferes with the treatment plan or costs. This practice of actively trying not to know about residence status was mentioned repeatedly among clinicians, both in publics sector and humanitarian settings.
Géraldine, a general practitioner (GP) volunteering in a medical humanitarian non-governmental organization (NGO) in Brussels, in addition to working as a self-employed GP in a rural community, nuances this in the following quote:
“Some (undocumented migrants) do not have access to healthcare, well they do not have the card for urgent medical aid. They do not have access to care whether for reason X, Y or Z, you know. So... I don’t do that anymore, I can't even say if they have papers or not. I don't see them like that. I see that they do not have access to care and that we are trying to put them back into the care system. But I am unable to say if the one who is there, he has his papers or not. Well, you don't see it, it’s just that you have plenty here who have papers but who are... They also dropped out, homeless people, who fell off the public healthcare system.“
Just as Francine, Géraldine is unable to say whether patients have a residence permit (‘papers’) or not. She describes this as something she actively (does not) do anymore. A way of seeing she avoids. However, instead of using the notion of undocumentedness, she uses a different categorization. Together with homeless people, undocumented migrants are seen as people who do not have access to healthcare. Another respondent said: “All these people, are patients I call ‘precarious’.” In other words, deliberately avoiding the categorization of undocumented migrants means using another categorization.
In addition to not wanting to see patients in a certain way, Géraldine also refers to a more sensorial notion of seeing. She mentions the lack of visible, embodied features of undocumented migrants. Luc, a middle-aged GP in a community health center in the public healthcare system, also mentions the role of this visual experience of difference:
Luc: “We treat them [undocumented migrants]. During the wars, doctors, they treat both parties. On battlefields, there are reds and blues, they will treat the reds and blues, that's the ethics of medicine.”
Interviewer: “I see, but on the other hand... in practice... for example, in practice, we see that it is easier to access healthcare as an undocumented child than as an undocumented adult with the same problem.”
Luc: “It's bad. [...] We must protect patients. The human mind notices the differences first. So if I put a white man and a black man next to each other, I notice: ‘Ah, you are white.’ And then black people, we have trouble distinguishing between black people, well, one needs to get used to distinguish their faces, we have all that. And so, you have to rework yourself [Fr: retravailler sur soi], to say: ‘Yes, I see the difference, but is it relevant?’ It is not relevant. And as the difference catches the eye, the first judgement we have, is the difference. So everyone has to say themselves ‘What do I do with this notion that I have about difference?’”
Undocumented migrants are initially described as one of two parties in a conflict. Luc refers to a notion of neutrality – a deontological ethics – to explain why he treats undocumented migrants. However, on further probing, a different response is given. Undocumented migration – a state-imposed administrative status – is now described in racialized terms, and with visual metaphors. He describes the experience of difference as something out of his control, it catches his eye; and something universal, we all have that. He describes how to protect the patient, he has actively to reflect on his notion of difference. In order to see the face beyond the difference, he has to rework himself. He explains this as a practice of talking or saying a specific phrase to himself. Reworking himself is described as a process, a way of seeing one has to get used to.
Reworking one’s position in the web of relationships
In several interviews, healthcare workers describe self-awareness of their own position in relation to their patients, and within the wider context of the healthcare system. A second practice of “care of the self” consists in efforts to transform this position.
Marie, a young doctor, working as an employee in the medical humanitarian NGO mentions that the role of her organization is “to provide healthcare to people who are not included, but only for a short period. In fact our role is really secondary.” She mentions that she works “in an organization that actually should not exist as the public system should provide healthcare for everybody.” She explains how she and some of her colleagues adjusted their clinical practice to this:
“So we focus on the most vulnerable people and it is for them, primarily, that we try to achieve access to [public] healthcare. And so we really try, we have to insist on that, that we are there just to try to put them back into healthcare, so we are just covering this time when they are without access to care and... I really see it like that. But this is something that we really have to be firm about with ourselves [Lit: we have to hammer it into ourselves. Fr: on doit nous matraquer] because very quickly, you tend to become a general practitioner of people, their treating doctor. We are there for them during a time when they do not have access to healthcare [...] We made a chart where you see, right now this and that is care in Belgium, and urgent medical aid, and then you have that way, there you have [Name first line services], you have the [Name outreach] and all that. And you have the [Name NGO] and we are just a link to getting there. And so there, we redid this, it's very recent, we redid this map, so the doctor... I always have it in front of me. As a doctor, it’s spontaneous, taking care of them and continuing doing so, you quickly take on a role of general practitioner, you know, you will treat, you take blood tests, he comes back for the result. Well, you quickly put yourself in a... we also tell people. They stay, we tell them: ‘we are helping you, we're just here to help you get urgent medical help and have access to a health centre, have your own doctor, have... being taken care of properly.’”
Marie describes a strong inclination to continue taking care of an undocumented patient in the NGO, once the care relationship has been started. This is true for herself and for her patients. She is aware that this inclination is not in line with her conviction that undocumented migrants should be cared for within the public health care system. Therefore, she tries to bring her clinical practice in line with the intentions of the NGO to include the patients into the public healthcare system as quickly as possible. To make sure this happens, she makes conscious efforts to avoid to become the patient’s treating doctor. She and her colleagues adjust the way they get attached to patients in order to achieve their moral goal of having patient cared for in the public healthcare access. Marie and her colleagues have repeatedly created a sheet to remind themselves of their position in the health system and to retrain the way they practice medicine.
Leen, a social worker in a hospital in Brussels, mentions a different kind of effort to consciously reposition herself when seeing admitted undocumented patients. In the hospital, social workers from the hospital collaborate with social workers from the Public Social Welfare Office (PSWO). Yet, they have different roles: “The PSWO revolves around the financial. Are they authorized to pay the hospital costs? Are they authorized to give those persons a medical card? While we here, a social worker in the hospital, we don't care about that. Our interests are to ensure that that person is given good aftercare and that he is well cared for within the hospital.” She says about this:
“ I personally have a bit of a problem with that, because I don't want to be associated... Well, I don't want to be directly associated with the PSWO. I am a social worker here at the hospital, and I do what I have to do within the hospital, and she is a social worker at the PSWO. [...] They also have a much more direct way of interviewing the patient. They really insist, while for us it is not necessary to have such a thorough... Their revenues, for example... If people don't tell me how much they earn or whether they work informally, I don’t mind. While they have to go into all the details for their social inquiry. It disturbs me. I try to avoid going to the patient together. I prefer to go alone and they go alone afterwards.”
Leen initially did the interviews together with the social workers from PSWO. However, she started seeing patients alone following several experiences where undocumented patients became afraid, even removing their intravenous line to leave the hospital, after having been interviewed for the social enquiry. She adds that, during that transition, she also started to perform her work with “an attitude that tries to put them at ease.” In order to care for undocumented patients in accordance to her personal norms about care and her institutional role, she had to create a physical distance from colleagues with the same professional background, yet who embodied another, more intrusive way of caring. She also actively aligned her bodily appearance with her caring disposition.
Cultivating minimalistic medicine, cultivating a different equality
During his ethnographic observations, the author regularly observed healthcare workers experiencing financial and administrative barriers when caring for undocumented migrants. This induced limitations in the available treatment options, the referral options, or access to the most convenient technical investigations. However, to his initial surprise they often did not complain about it. Sometimes healthcare workers even seemed to perk up in such situations. This occurred both in public healthcare services and humanitarian settings, although the limitations were different. During a long interview with one of the doctors who the author got to know well during the field work, she revealed:
“I limit myself [Fr. Autolimite], so to speak. By thinking more [...] So the difference, in fact, because it is a philosophy of [name senior colleague], which he is trying to instill, is to say: ‘for this type of patient for whom technical acts will not be paid, will not be billed, and therefore will be paid by the hospital, so by us; it asks us to do the right thing but to think about what is necessary.’ And that is to say... From time to time there’s a tendency in the current teaching of medicine, young doctors, often they make the prescription for the laboratory and they have not yet seen the patient, that's it. Sometimes even a prescription for a scan. And I do the opposite, that is to say to first examine the patient and say to myself: ‘Ok, what is necessary, for this patient? What is really going to change our care? What will guide the diagnosis?’ By trying to practice good medicine without overconsumption, in fact, that's it... in fact, we should do it systematically, there is no reason to do it only for those patients. But unfortunately, right now, and at all levels, it's not just in hospitals... in medicine, they have so much work that it goes faster to prescribe a scan than to to put a hand on the belly of a patient.”
The doctor is limiting the amount of technical investigations she does for undocumented migrants in case of financial implications. To the reader, this may initially appear as if she has internalized a notion of substandard healthcare and has surrendered to institutional pressures. However, she describes this as practicing good medicine. She implicitly describes the healthcare she provides to undocumented migrants as a traditional approach to medicine and contrasts it with a more recent approach. This current approach is referred to negatively in terms of overconsumption, brief patient contacts, high workload, and high technicality. She expresses nostalgia back to a more hands-on medicine where there is more room for patient contact and clinical examination. For Caroline, healthcare delivery to undocumented migrants creates a situation where she can practice this more traditional kind of medicine. It creates a situation where there is room for diagnostic thinking, priority setting, and efficient use of medical means. She experiences a certain pleasure in the limits she encounters, and in the way she deals with these limitations. It increases the role of her professional judgement and paradoxically she experiences more professional autonomy or freedom to think when being confronted with limitations in healthcare access for undocumented migrants. Put differently, it provides her with an intellectual challenge where she can practice and refresh her professional skills. Later in the same interview, she elaborates further on this:
“This might sound like a very cynical remark, but for the clinician or the professional, they are fascinating patients because they have pathologies that are much more marked. They consult later and therefore, from a professional point of view, it is extremely exciting. But that is very cynical as an answer. Also, obviously we feel much more useful in caring for someone, [...], I think it is much more rewarding but also, yes, rewarding for oneself to treat someone who is in need, who has a big pathology, that nobody else is going to treat in fact, and that we will really help, at least we will try to help, we must remain humble.”
Caroline describes that for her, treating undocumented patients is more exciting, because they present with more severe illnesses (in a context where the available resources are limited) which offers more opportunity to practice one’s skills as a professional. Simultaneously, she expresses awareness that fascination with illness, just as finding professional satisfaction in the ill health of others, is socially not desirable. However, she describes this satisfaction not in relation with others, but in relation to oneself. It transforms the way she feels in her care work. She feels more useful. This experience is not just situated in being competent in the clinical practice, it is also emotionally rewarding; it enables the practice of a virtuous deed, notably helping somebody that nobody else helps.
Géraldine describes a similar active relationship to the self, in order to aspire certain values, when being confronted with limitations in healthcare access, yet she formulates this quite differently:
“We were trained by a doctor who was here before, [name], who stayed four, five years anyway. And somewhere... medicine, he told us to do it the same way, you see really to treat people the same way. And to react as with someone who has access to care, you see, so as not to really make a difference and to ... And that is something that I keep reminding myself. So it is certainly so that there may be some difference, but basically I feel that the quality of the treatments we give them is really equivalent. Well, sometimes we will wait longer for a radiology or for certain things, but basically, you get almost the same thing.”
Similarly to Caroline, she refers to a senior colleague, a role model, who inspired her to practice the way she currently does. Caroline refers to the image of instilling to describe this pedagogic process. Géraldine talks about how she keeps reminding herself of a specific thought to transform the way she acts or reacts. Later in the interview, Géraldine verbalizes this thought as follows: “you have to act as if it’s your own patient”. This thought (similar to a mantra) contains a particular paradox; a paradox that is also present in her previous quote. Both quotes simultaneously contain notions of equality and difference. Géraldine expresses aiming for the same outcome, to practice the same way, despite sometimes following a different approach. The use of the infix as if suggest awareness of difference and distance and, simultaneously, the mantra urges her to act in an egalitarian way.