Self-selective mechanisms: the institutional patient paths in the treatment of arterial diseases (arteriosclerosis obliterans) – the case of the Roma (HU)
Written by Attila Dobos
Text reference: László Antal Z. (2004) A „kisebbségi” és a „többségi” betegutak sajátos vonásai. (Antal Z. Specific features of “minority” and “majority” patient paths) in: Társadalomkutatás 22 (2–3) p.335–366
Introduction
This study deals with the characteristics of the relationship between Roma patients (here referred to as the “minority”) and the service providers coming from the “majority” population in the institutions of health care in Hungary. The emphasis has been put on the cultural elements of these characteristics. This study is based on a study realised originally in 1984 by the same author. For the study he and his colleagues developed a special “patient path analysing inquiry” with his colleagues in the Centre for Social Sciences of the Hungarian Academy of Sciences.[1] Since then, this method has become widely accepted for better understanding healthcare service delivery. One of the key components of this method is to study the path of patients with identical diseases from the first contact made between the patient and the doctor by means of in-depth interviews. The research included aortic stenosis (arteriosclerosis obliterans), a typical arterial disease in the population that could be lethal.
This present study would have liked to, but could not follow the same method as the former one in 1984 for numerous reasons explained in the paper. However, during the preparatory phase of the research, the author could gather relevant information through interviews in hospitals, visits in wards treating arterial diseases, and fieldwork in Szabolcs-Szatmár-Bereg County, one of the most underprivileged areas in eastern Hungary, to proceed further with the analysis.
The Starting Point
The original intention of this research was to repeat the first investigation after more than 20 years to see where the first results evolved to and to gain a new picture of the situation. The initial questions were: how can the patients find their way to recovery in the maze of the principally free and equal healthcare system run by the state? Are there any other possibilities from the side of the healthcare system to improve the health status of the population apart from promoting changes in lifestyle? Based on the “patient path analysing” method requirements, aortic stenosis was chosen, as 1) it could be identified unequivocally; 2) there are different treatment opportunities; 3) most patients go through all three levels of healthcare: family doctor, outpatient care, hospital. Hence, the research hoped to get an insight into the factors that have an impact on patient paths apart from the disease itself. The most important results of this study were: there were very limited opportunities for high-standard treatments and only those patients managed to get them in time who successfully recognised the hidden “traffic rules” and understood how to navigate the system. These rules were built out of social and monetary capital. Here we had very strong selective mechanisms under the veil of “free and fair” service, so the focus of this recent study was set on these selective mechanisms among the minority group, i.e. Roma communities.
Changes in the last twenty years
What has changed in the last two decades that has made the iteration of the study impossible? The reasons can be identified in two segments: related to the field of health care and to the question of ethnicity. Firstly, within the domain of health – in relation to aortic stenosis – the possible patient paths have changed radically: both doctors and patients can recognise this disease much faster now, so long lasting detours will not occur frequently. Secondly, due to technological advancements in medicine there are more tools, treatments and possibilities available to cure patients even within state-run hospitals. Additionally, with the massive appearance of private service providers, these possibilities have increased drastically, including the reappearance of formerly prohibited procedures of complementary / alternative medicine. Thirdly, the financial structure has changed radically with the implementation of the DRG (Diagnosis Related Groups) approach, which link the funding of a hospital to its performance. In the literature of medical sociology and health economics, the impact of such a system on the hospitals and its doctors is well-known now. Accordingly, it urges hospitals to treat more people, possibly with severe diseases, within their institution to get more funds. As a consequence of this impact, it increases the overall health expenditure in the country and more importantly it does not always serve the interests of the patients: while 20 years ago it was evidently the success of a patient to reach the vascular surgery ward, it is not as clear now. With the appearance of this open selection mechanism, even the accuracy and rightness of a given therapy (and patient path) is not clear-cut anymore. Drawing from these, the net of patient paths and its traffic rules have become much more complex and difficult to explore both for patients and for researchers.
Even more serious difficulties have emerged in the domain of ethnicity. The detailed analysis of ethnic differences was not in the focus of interest at all at the time of the first study. The iteration of the first research was motivated mostly by the increased attention dedicated to the ethnic aspects of healthcare service provision. Paradoxically, as ethnic issues have come to the fore, it has become more and more difficult to make inquiries into and grasp ethnic differences. Principally, the vast amount of literature and research in the field of Roma studies makes it hard to find a general framework. Moreover, due to the heavy and often emotional debates between different schools and approaches of this field, political considerations have come to complicate the picture. Practically, this question has become quite sensitive as different scandals have received publicity in public hospitals, e.g. segregated maternity wards.
All in all, these changes in the last 20 years made it impossible for the author to conduct the same research in the very same way. However, the historical comparison was of great use to analyse further the selective mechanisms.
On the changing patient paths of arterial disease
As mentioned above, medical advancements and changes in the financial support system are the two main sources of change in patient paths as well. The latter one resulted in the altered system of interests and stakes of doctors and their relation to their patients, while the former one involves the enlargement of possibilities of curing this disease.
Extended possibilities
One of the most important developments in state-run healthcare (along with five other institutionalised ones) was the widespread implementation of the so-called “Dotter technique” in vascular radiology, which can be used as a one-day surgery in outpatient service to clean out the arteries, instead of having serious and much more demanding inpatient surgeries. But this is only a small thing, compared to the achievements available in private and complementary / alternative medicine: approximately twenty ‘new’ treatments are accessible for aortic stenosis.
One of the most important consequences of this change is to find the answer to the question: “who gets what kind of treatment”, while previously the question was restricted to “who succeeded in getting the appropriate treatment”. Obviously, there are considerable differences among the available procedures in terms of 1) how demanding is it for the patient? 2) what side-effects are predicted? 3) how much does it cost? and finally 4) how effective is the treatment? According to the author, these extended opportunities make it possible to see more clearly the new selective mechanisms. Thera are no ready-made maps for the patients to make their way easier, and additionally it is difficult to get reliable information about the effectiveness of the given treatment. This is what can be regarded as intensified social embeddedness of healing. All the massive changes that took place in society generally have a great impact on the patient paths of this single disease. Just to mention a few: more opportunities to travel and seek a solution outside the borders of Hungary; more knowledge available for the public about health literacy, improving the usage of alternative procedures as well; the medical worldview has also opened up towards treatments other than surgery, i.e. complementary / alternative medicine.
DRG financial system
The financial system has significant impact on how wide those patient paths could be, defining the traffic on them[2]. One of the most important results of this DRG-based change is the possibility of having competing and conflicting interests within public healthcare, which often hurts the patients’ interests. After reviewing the new therapies and giving some basic epidemiological data on this disease, the author reveals two instances of the above mentioned phenomena. Fibrinolysis is a preventive technique of breaking down blood clots, but could gain much less ‘reward’ and funding for the hospital than amputation, driving the system toward amputations. Moreover, although there is significant clinical evidence that shin (lower limb) amputations have a much lower mortality rate than thigh amputations (upper limb), due to the longer after care period it has less funding than the “competing” procedure, driving hospitals towards the less rewarding therapy for the patients. So to speak: they may sacrifice the interest of the patient for the sake of the hospital. Because of the financial difficulties of the state-run public healthcare system, it loses more and more patients whose level of demand exceeds what it can offer, hence strengthening its fall-back.
The case of the Roma
Unfortunately, there are only a handful of studies that have dedicated attention to the sensitive situations in healthcare institutions regarding the treatment of Roma patients. Right after conducting some interviews with patients from this group, it became clear to the author that there are remarkable differences in the culture of the majority and minority populations, quite often leading to tension. This segment of the research focused on the questions 1) why this tension takes shape so often, and 2) what solutions have been developed by the different parties to dissolve this tension.
After studying the literature on Roma culture, the author summarises the most important characteristics he found in relation to the problems occurring in the world of healthcare institutions. In the very first instance he makes his point in the well-known debate: is there any Roma culture or is it the culture of poverty and very low socio-economic standards we are talking about? He stresses along with many famous scholars in the field that yes, without any doubt, there is such a thing as “Roma culture”, which helped this population to survive through centuries. The most important findings are:
Perhaps the most essential feature of a “minority culture” comes exactly from being in a minority position: very strong group cohesion had to be developed in order to fight for survival against the majority claims. Every piece of knowledge, experience that makes the living of the offspring easier had to be equipped by the force of a law. These inner “laws” often contradicted the majority population’s laws, therefore the group could only survive by evading those laws, further strengthening in-group social ties.
Another important element could be identified within the ruling values of life resulting in a different mentality: less aspiration for goods like tools and symbols of comfort, such as better cars, nicer houses, etc. and more inspiration to live their lives simply with full impulses of joy and sadness following traditions of their own. This attitude of “just live simply” often contradicts with the healthcare professionals’ way of living.
However, in this regard the central feature of the Roma culture is certainly the continuous feeling of being threatened by the majority population. There are clear-cut traces of this feeling of threat in their folklore, just as it has been quite widely identified by cultural anthropologists during their fieldwork in Roma communities. Most likely coming from the travellers’ lifestyles, yet the fear has remained after settlement. As a well-known Belgian anthropologist, Luc de Heusch, put it: it is as if they were under a “state of siege” continuously and would develop an approach toward the outer world accordingly.[3] In the institutional situations of healthcare, one key element of success is the trust between the service provider and the patient. Therefore, this particular aspect represents a clear difficulty during the therapy of the Roma people.
Roma patients in healthcare
Following on from the above mentioned arguments, it is understandable why the Roma believe that healthcare institutions are “dangerous places”. The healing procedure is in itself a precarious action due to the dependency of a suffering patient in need on the doctor who has the possibility of offering solutions. Additionally, it is all going to happen in an institution of the dreadful majority, where their rules are dominant. Moreover, there is simply a lack of control over the things they are in touch with, so no-one can be sure what is polluted by the “Gadjo” and what is safe to touch. Hospitals are especially risky places where dying and birth take place – two dangerous, contaminating actions, according to their worldviews.
The research revealed an interesting fact: the prevalence of aortic stenosis is quite rare and those that end in limb amputation are even less among the Roma population (despite the high ratio of smoking), compared to that of the majority population. There are several explanatory attempts for this fact: the “always on the move” and “walking lifestyle” has preventive effects; poverty could be related to a lower cholesterol level; co-morbidity of lung and throat cancer has a distorting effect on this data. Another explanation seeks the answer for ‘why they ignore amputation as a treatment’ in the roots of Roma culture itself. It may also be related to the general late attendance at the doctor.
Selective mechanisms
Social differences are clearly present in the “equal” healthcare system. Those who are better off can make their way in recovery much faster and in a much better quality. The question here relates to those who are on a fairly similar socioeconomic level: the poor from the majority and those from the Roma population. Former studies claimed that there is no characteristic difference in their health status even if the situation of the Roma people is special. For instance, the delay in visiting the doctor clearly relates to the extent of pain in both groups: only huge suffering can overcome the social distance. Or, it may come from the lack of knowledge about the consequences of late treatments. However, there is a clear disadvantage for the minority group, which works as a selective mechanism here: family doctors often refuse to visit Roma people in their homes. Nevertheless, those who have good personal relations and contacts at the hospital level will find their way to better institutions and treatments, mostly in large centres.
The weakness of the minority position can be slightly compensated for by the family and community cohesion, in forms of information sharing and emotional backing. People with the same socioeconomic level from the majority population cannot enjoy this support, so in this regard they might be in the worst situation.
Summary
The biggest difficulty in institutional interaction between the Roma patient and the service providers is the mutual fear of each other. It comes from the minority position and affects the behaviour of health professionals. Especially family doctors, nurses and paramedics reported angst in these situations. This partially leads to the decay of the prestige of these professions, which again narrows the path for the patients of low socioeconomic status. Other factors, such as out-of-pocket payments, health literacy – although these were not a direct subject of this study – also represent strong selective mechanisms in their care.
[1] László Antal Z. (1988): Beteg-utak [Patient-paths]. In: Medvetánc. Magyar gazdaság és szociológia a 80-as években. Budapest, Minerva, 265–291
[2] Traffic on patient paths = how many patients get treatment on a particular way
[3] de Heusch, A la découverte des Tsiganes: une expedition de réconnaissance. Bruxelles: Ed. de L’Institut de Sociologie. de L’Université Libre (1966: 34-49)