Abstract
When a disease turns terminal, end-of-life care replaces questions of cure and healing. Patients and relatives face the transition from health care to end-of-life care and the decision for a type of care (family, hospital, hospice). When people with a specific cultural background tend not to use available institutional support, the question of barriers and their location should be raised. In a study, patients, relatives, and service providers were asked about such barriers in the access of palliative care for Russian-speaking immigrants in Germany. Barriers in the health care system and in the possible clients’ individual or cultural backgrounds and their diverging or overlapping perceptions as well as interpretive patterns of using hospices could be identified. This article demonstrates for what we need data in analyzing cultural and individual decision dilemmas in Neo-Liberal Times in the encounter of diverse cultural values for improving service situations.
Introduction
The question, whether the chances for access to services and professional support is distributed unequally can be raised in many areas. A number of factors can be identified, which have an impact on these chances. Lower social status or differences between rural and urban areas are among them. Differences exist between States and in between countries as well as cultural differences in understanding and evaluating specific problems and the role of professional support in managing these problems. Such differences may become more important, the stronger the role of the individual becomes in managing problems and in finding the adequate support in Neo-Liberal Times. The question for qualitative inquiry in general can be, then, whether such differences can be identified and how the processes of access and support on one hand and of failing in finding both on the other hand are experienced. Who plays a role in such processes and how—the professionals offering institutional support and the possible clients seeking help and orientation? Which is the role of cultural backgrounds in finding help and assistance in case of problems we all face sooner or later? Such questions may be discussed very generally, but answers to them become more relevant, if they are based on data that allow to analyze the perspectives of the people and groups involved in such processes. In this article, we take the case of palliative care as an example for understanding how help seeking is influenced by cultural backgrounds. For answering this question, we studied Russian-speaking immigrants in Germany facing the end of life (their own or that of a relative, friend, etc.). The more concrete case is whether members of this target group experience the need of professional (palliative) support, whether they maybe neglect it or not, and whether they find it once they look for it, and which factors and circumstances facilitate or impede the success in finding and using professional end-of-life care for this target group.
Practitioners’ reports show that use of palliative home care services and hospices by Russian-speaking immigrants is lower than could be expected. A reason for this could be barriers that prevent them from finding the adequate support and services at the end of life. Immigrants from the Russian language area are one of the largest immigrant groups and communities in Germany. These groups mainly consist of late repatriates or Jewish immigrants from the countries of the former Soviet Union. After the collapse of the Soviet Union, in Germany, the legal conditions for a wider immigration of Jewish people were improved in 1991 also with the aim of strengthening the Jewish communities in the reunited Germany. Studies by Schenk (2011) and Vogel (2012) showed for their situation in health care that similar to the Russian late repatriates, the family and in particular female relatives have a key function for any kind of nursing among the Jewish immigrants, which includes palliative nursing as well. They show also a high risk of distrust against public services and professionals the clients are not familiar with. Thus, a main challenge is to build up trust and relations for a good care. Other challenges are how to take religious prescriptions such as kosher nutrition and access to native language services into account.
The group of the late repatriates has often a double experience of exclusion: After they were discriminated in the Soviet Union because of their German descent, they are now perceived as Russians by the indigenous population in Germany (Schönhuth & Kaiser, 2015). Because of their mostly secular socialization of the Jewish immigrants, their integration occurred in a tension between the majority society and the Jewish communities on one hand and the immigrants’ individual definitions of being Jewish on the other hand. The immigrants saw themselves confronted with the expectation to profess their Jewish culture and religion, although the foundation of both was unfamiliar to them (Körber, 2009). The few studies addressing this target group from a health care angle show how a family orientation and traces of a collectivist attitude of values impede a more individualist active use of health care services (e.g., Schenk, 2011). This may explain that our target group has more trouble in finding, accessing, and using services than the German majority population.
At the Threshold to End-of-Life Care: Theoretical Concepts
Illness and frailty can confront us in two basic modes: as a momentary and peripheral phenomenon, which is part of our everyday life for some time and leaves it again, once the symptoms and problems have been cured. However, illness can become a permanent and inevitable part of our future everyday life when it is a chronic disease. This inevitability is even more the case if the illness is or becomes a terminal disease, so that neither curing nor a continuous life with the disease are to be expected. In this case, the patients and their relatives often are on the threshold to a new situation, experience, and new needs for care. The aim of such care is no longer to make the patient healthy again but to make the remaining time and the process of dying as comfortable as possible. Institutions such as hospices, palliative wards, palliative home-care nursing, and palliative home-care doctors offer professional support in this situation but sometimes confront the patients and their relatives with the inevitability of end life. This also means that the patients and/or relatives are on the threshold to a (for them) new, or different, system (and type) of support. For describing such thresholds and the related experiences of illness, a number of concepts could be used.
Biographical Disruption
Sociological studies about the patients’ understanding of chronic illness often refer to the serious turning point in their former life routines and in this context to the resulting biographical disruption (Bury, 1982). As a consequence, the habitual everyday life routines and major schemes of orientation and practices are in question as are individual ideas about one’s own future. Patients are confronted with numerous uncertainties as symptoms of the diseases are ambiguous and its progression is unpredictable (Bury, 1982; Charmaz, 2010). As this comes along with pain and/or other unpleasant symptoms, chronic diseases shatter beliefs of one’s own invulnerability and lead to an awareness of life’s limitedness (Bury, 1982).
However, studies in this context also demonstrate that chronic illness is not necessarily experienced as disruption. Its meaning should be seen in the context of the patient’s entire biography (Williams, 2000) and is subject to various influences such as the patient’s age and illness knowledge, earlier illness, and socioeconomic and cultural factors (Faircloth, Boylstein, Rittman, Young, & Gubrium, 2004; Williams, 2000). Studies about older people’s illness experiences show that they often normalize their physical health determents (Llewellyn et al., 2014; Pound, Gompertz, & Ebrahim, 1998). This describes a process in which the patients try to see symptoms or limitations as normal (Charmaz, 2010). Chronic diseases appear as an inherent element of becoming old, which is natural and unavoidable.
An already existing illness can be another reason that a “new” chronic illness is not seen as a biographic disruption. Rather, the new illness is seen as a normal part of life—as a biographical flow (Faircloth et al., 2004), as something that happens while the usual everyday life continues. Mostly, the patients have accustomed to the restricting consequences of diseases and organized their lives around such consequences. Symptoms such as being tired or pain are no longer perceived or ascribed to “new” chronic diseases but to the pre-existing illness, which often seems to be the much worse one (Faircloth et al., 2004; Llewellyn et al., 2014).
Furthermore, life under economically precarious circumstances often has the effect that chronic diseases are perceived as relatively unspectacular and become secondary compared to everyday social and practical problems. Because people from lower social classes often have limited expectations concerning their health, they are more likely to accept their chronic illness (Pound et al., 1998). Often people in precarious situations see illness as a biographical continuity, whereas relatively privileged middle-class people tend to see their diseases as biographical disruptions (Williams, 2000).
These examples show that Bury’s concept of “biographical disruption” in its original context is not really covering the variety of experiences on the threshold from acute to chronic illness. This also suggests not to use this concept for the threshold experiences from acute (and maybe chronic) to terminal disease and from curing to palliative care. Here again, we need not only a more open concept, which allows to include experience of disruption when a disease turns out to be terminal, but also more open and maybe more active ways of approaching this new situation.
Status Passage
Glaser and Strauss (1971) introduced a second prominent concept in this context. They discuss “status passages” in various contexts, where people move from one situation to another or from one institution to a different one. The authors outline several features of status passages as they see them: (a) their relatively scheduled character; (b) fairly clear rules concerning when the change of status should be made, by whom, and by whose agency; (c) prescribed sequences of steps the person must go through; (d) regularized actions that must be carried out; (e) scheduling, regularization, and prescription are integral to so many status passages (1971, p. 3). They even used their concept for describing death and dying, but not for the passage from curative treatment and hope for recovery to end-of-life care and accepting the terminality of a disease. For the context of our problem, the concept of status passage is not very well fitting for several reasons already mentioned in the earlier description: It is very much oriented on several steps of status that are or can be reached for completing a passage. There is a strong focus on plans and rules that are to be kept and are transformed into rituals for establishing status, changes, and steps. All this understands passage and status more as events that occur and the people who are concerned of these events as more or less passive or adaptive participants in a process with its own dynamics.
Transitions
Glaser and Strauss have developed their concept referring to an earlier suggestion by van Gennep (1908/1960) who was interested very much in passages but also in the ritual side of such passages and the steps between them. This earlier suggestion is taken up in current German discussions in education about how to conceive and study transitions (“Übergänge”—Schröer, Stauber, Walther, Böhnisch, & Lenz, 2013) in general and into, within, and through the educational system. This perspective of transitions seems more open and adequate for describing what happens at the threshold between the curative system of health services to the palliative part of the health care system on one hand and from family care to professional palliative care on the other hand.
The interest in transitions has been additionally fuelled by the changing circumstances. In the 1970s and early 1980s, discussions were interested in the institutionalization of the life course (Kohli, 1985). Such discussions were more focused on the de-standardization of life courses and the pluralization and individualization of life courses (Beck, 1992) from the late 1980s onward. This turn put the individuals as planning offices of their own life and life course into the focus. The idea of transitions in this process (from one developmental stage, one situation, or one institution to the next) made issues such as transition management (Oehme, 2013) relevant. Transitions become interesting as a heuristic concept also with the focus on how people cope with necessary, successful, or failing transitions. In contexts where institutions are (or could be) involved, are available and used (or not), we can ask a number of central questions (see Flick, 2015 for this perspective on doing for social work):
Which role do the institutions play in the system of transitions (e.g., in the health care system for people who should move on into the palliative part of the system), which expectations are linked to them, which task do they take over, and how are they interlinked to other institutions
How do the institutions (and in particular the professionals working in them) construct their target groups—who is included, who is ignored, what should “good” clients bring to be successful in being accepted by the institution, and so on.
How is the helping relation working, what is important in it, what is impeding, and how are the other people involved seen by the participants?
How is the social problems work (see Flick, 2015; Holstein & Miller, 2003) developed in the specific context and institutions?
What happens if the “average” target group has to be extended, for example, in the context of migration and of immigrants using (or not using) specific services?
Analyzing Transitions at the Threshold to End-of-Life Care: Research Design
Research Questions
The aforementioned set of questions is an orientation for a project that addressed palliative quality of life and more concretely the use of services by Russian-speaking immigrants in Germany. We received funding from the German Ministry for Education and Research (2013-2017) and aim at providing results for improving the practices in health services by pursuing the following research questions:
For answering these questions, we triangulated two approaches: interviews with patients and relatives (palliative cases) and expert interviews with service providers in various institutions of palliative care for including a complimentary perspective.
Target Group and Sampling: Palliative Cases
The principal target group was people with a migration background from the former Soviet Union, living in Germany as first-, second- or third-generation immigrants, including (late) repatriates and contingent refugees with a Russian language background. Following Ewers (2005), who asks how and how much relatives can be involved in end-of-life care, of which resources they dispose, and which support they need, the sample was oriented on patients at the end of life as well as on (their) relatives. The sampling procedure focused on palliative cases: either cases of a patient currently or recently in need of palliative care. As it was not always possible for ethical and other reasons to interview the patients themselves, we focused here on cases including the patients and their relatives (spouses, partners, parents, children etc.). The sample includes cases of various religious affiliations. The cases were addressed via homecare physicians, home care nursing services, palliative stations in hospitals, and in hospitals without specialized palliative stations. The sampling took the age of the patient as an orientation also on the following backgrounds: In the literature, we find observations that immigrants tend to be more ready to use palliative services and hospices if the patients are children than in cases with adult patients (Grammatico, 2008) and that second-generation repatriates tend to be better informed about nursing services than first-generation repatriates (Schnepp, Duijnstee, & Grypdonck, 2005). We took these two differentiations as starting points for defining three patient-related age groups (palliative cases “under 20,” “from 20 to 65,” and “over 65 years”), which we included with an equal share of both genders. The sample aimed at including 30 palliative cases. Access to the participants was organized via palliative institutions and their staff or self-help groups for Russian-speaking immigrants in general or such groups in the context of palliative care. Social media were also used for getting in touch. However, it proved difficult to include patients in the sample for several reasons: First, and not surprising given the practitioners’ reports we took as a starting point, there were not very many cases with a migration background from Russian-speaking countries in palliative treatment during the period of data collection. Another reason was the reluctance of palliative staff to support contact to patients—mainly with the argument that interviews would over-challenge patients. Finally, some of the patients we contacted refused to take part in the study. One potential interviewee died before being interviewed. In other cases, relatives withdrew their agreement of participation for the patients shortly before the interviews. In the end, this means that we have reached the intended sample of 29 palliative cases of Russian-speaking immigrants but mainly consisting of interviews with (27) relatives and only some interviews with (four) patients
We could include 29 palliative cases in the study, 14 female and 15 male patients in palliative care (see Table 1 for the age and gender structure in the palliative cases). In two cases, we conducted two interviews concerning one patient (see Table 2).
Sample of Palliative Cases.
Design and Methods.
Service Providers
On the complimentary side of service providers, we did 61 expert interviews (see Bogner, Littig, & Menz, 2018) with various professions working in hospices and palliative care. Here, the sample includes,
Professionals in this context (currently) with or without migration background and working with Russian-speaking immigrants specifically,
Staff from palliative and nursing care in general, and
A number of professionals working in these fields in Russia (see Table 2).
Data Collection
We applied episodic interviews (Flick, 2014, 2018) with the patients and the relatives. This type of interview is based on the basic assumption that life experiences are stored and retrieved either as semantic knowledge (e.g., concepts like the meaning of family care) or as narrative-episodic knowledge (e.g., concrete situations and descriptions of how family care is provided). Targeted, direct questions were formulated to elicit semantic knowledge or relations between concepts (e.g., “What helped you decide to use palliative care services?” or “Which palliative services have helped you the most?”). Questions aiming at episodic knowledge were formulated as narrative stimuli to encourage respondents to elaborate upon their experiences (e.g., “Can you tell me more about the role of the family in caring for the terminally ill patient? How did you help the patient? Can you give me an example?”). The interview schedule covered several topical areas:
Access to the palliative care system and hospices in Germany and experiences with it,
Needs and expectations regarding the quality of life,
The role of the family,
Coping with fears, and
Representations of good care at the end of life.
Interviewees could decide whether to be interviewed in German or Russian. Most participants preferred to be interviewed in Russian (see also Flick & Röhnsch, 2014 about issues related to language use in interviews). The participants could also choose the place of the interview (e.g., at home, in a café, the palliative station, etc.).
The expert interviews with the service providers covered several topical areas:
Paths of access and barriers to hospice and palliative care,
Estimations about the utilization and care situation concerning needs-based services,
Concepts of quality of life at the end of life,
Needs and expectations of patients and relatives and toward them,
Collaboration with relatives, and
Collaboration with other institutions.
This study is based on a triangulation of perspectives (those of clients with those of professionals—See Flick, 2018) on the level data triangulation resulting from triangulating several methodological approaches in a comprehensive comparative design (see Table 2).
Data Analysis
The data were analyzed by applying thematic coding (see Flick, 2014) in a multistage fashion. First, interviews were addressed as a series of case studies. A short description was produced for each case (i.e., each interviewee). This description comprised a motto of the case (a typical statement), demographic information about the interviewees and central topics mentioned in the interview. Statements were initially open-coded concerning a selected thematic field (i.e., caregiving representations) for each individual case (i.e., each interview). Second, a thematic structure of the interviews was developed, which comprised the topics of the interviews across the cases. Comparative dimensions were identified across cases and used as a starting point to elaborating common aspects and differences. For example, dimensions of comparison included how relatives perceived and negotiated their role during the caregiving process. Such dimensions were used to classify cases and to identify interpretative patterns as specific combinations of features.
Barriers at the Threshold to Palliative Care
In what follows, we will take up the issue of how the transition to palliative care occurs if the patients come into this situation with a specific cultural background (here migration from Russia to Germany). The transition is twofold—on one hand from everyday life before and on the other hand from the curative, healing part of the health care system during the disease to an end-of-life perspective palliative care. We will focus here on the barriers against a (successful) transition that have been mentioned in the interviews by the two sides involved: The clients (patients or relatives) and the service providers in palliative care. We will concentrate here on two levels of barriers. First, we will look at barriers on the level of health care—how they are perceived and understood by both sides and how far a cultural difference is perceived as relevant in this context. Second, we will take a perspective on the clients’ behaviors and practices as a perceived barrier against using palliative support from both sides.
Barriers on the Level of Health Care Seen by Experts
The German service providers refer to very heterogenic experiences and knowledge about the care for Russian speaking patients. Already when looking for participants (institutions and staff), we were often told that the providers had no experience at all with this target group and, thus, would not be available for being interviewed. Some of the staff we interviewed refer to very few service experiences with Russian-speaking patients and present common sense knowledge and other colleagues’ experiences. Others refer to experiences based on their own migration backgrounds. The access to palliative services was described as an institutionalized process in close cooperation with transferring institutions. This process consists often of more or less standardized routines but open for all people in the same way. Nevertheless almost all service providers estimate the share of Russian-speaking patients using their services as very small. For analyzing the data, we focused on questions such as, “How do staff members see the accessibility for people with a Russian-speaking migration background in particular?” “Under which circumstances do they see hospice and palliative services as being used or patients being referred to them?” and “Which challenges have to be overcome in the transition from curative to palliative care?”
As a major issue on the level of the health care system, the experts see insufficient resources such as lack of staff, and beds/places in the institutions. Independent of patients’ migration backgrounds, it is seen as more difficult in general to find access to palliative services for very old or nononcologic patients:
Take a non-oncologic disease, . . . a severe disease of lung and heart, that can take up to one year and a half. But that is a long way of suffering . . . . But that is not expected. Well you get enquiries by the insurances: Is it already palliative? (Nurse 1)
Depending on the profession and the setting of care, a lack of staff or available beds can occur at in-patient services. In the home-care area, a lack of (native-language) psycho-oncologists, qualified palliative nurses, and a high occupancy rate of palliative physicians are mentioned, so that an acceptance or refusal depends in the single case on “how the capacity situation is” (Doctor 3). Even if the situation improves because of the extension of the service structures, in particular, the in-patient services usually work with waiting lists.
And . . . once they realize: OK, alright, now the symptoms are in the foreground and everything else does not work any longer, they are signed up here (palliative ward). And then they are put on a waiting list first. And then they are—depending on the availability of beds—called in. (Nurse 8)
In hospices, often a “list of interest” (in the sense of an early forethought) and an “urgency list” are distinguished. The latter includes patients who can prove—according to the criteria of hospice and palliative care—a special need and a medical estimate of a limited life expectancy (of 6 months maximum). Such lists allow an objective allocation, for which the moment of registration is the main criterion. Sometimes they are also used as a ranking of needs:
Well all hospices have a waiting list. . . . And of course I also look in the single case, or my colleague does: What are the special reasons? You can not only proceed in strict chronological way, but have to consider if someone maybe is completely solitary, is the partner maybe also in need of care? . . . There are always individual reasons that you have to look at again: Why should I prefer him or her? (Social Worker 2)
A second topic in this context is the (too) late referral of patients in the health care system. Access to palliative care is mainly characterized by the end of a curative treatment. According to the service providers we interviewed, the transition should not occur in an abrupt way, but, ideally, in a phase of transition, a parallel palliative treatment should begin. However, according to their experiences, the colleagues in curative institutions manage a transfer in time for such a parallel treatment only in exceptions. That is problematic in particular in the light of the limited resources of space and time. (Too) late information is another problem, which is caused by service providers who are not part of hospice or palliative care.
Specialized out-patient palliative care is something very specific. As I said, the majority of physicians in private practice do not know this at all. . . . Every family doctor can apply for this for the patient from the health insurance, but most of the family doctors don’t know about this at all. And then even more so the patients and the relatives don’t. (Doctor 4)
Intelligible information is seen as important for improving the visibility of palliative services in other areas of health care and for avoiding the misunderstanding, “that palliative is rather a medicine of dying is rather obstructive” (Doctor 6) in the future.
Even if this is not a migration-specific problem, the information material in native languages for the immigrants is lacking in particular. This could prevent misunderstandings about the definition and of certain treatments in hospice and palliative services.
Well the information about the service structures . . . Don’t know if there is much. . . . That you say more purposefully in their own language: What does exist? What is a hospice? What is a palliative ward? What is palliative home-care nursing, what does a palliative home-care doctor? I think this would make sense. (Doctor 8)
Another topic in this context is sometimes a lack of problem awareness. In particular, in the field of hospices, the information of the patients is seen as relevant for the access for having a basis for an informed consent or for further decisions in the treatment. Some palliative staff members express their regret that their colleagues in the acute area leave “right information of patients” to the palliative doctors.
. . . because the biggest obstacle is of course that someone who moves into a hospice has to be clear about his or her situation as far as possible. Well provided that he or she still can think and take part in decisions and that the decisions are not taken by the relatives or caretakers. (Doctor 7)
Against this background a lack of understandable information or of a state of clearing intensifies the danger that patients do not use palliative services, although service providers mention that this is not a migration-specific problem, because immigrant patients “are equally well or equally bad informed as other” possible patients (Doctor 8). Nevertheless, the service providers are prepared to inform patients about and introduce to the palliative care situation, because patients differ in the time they need for digesting information about diagnosis and maybe prognosis.
The service providers mention several risks of exclusion from palliative care for Russian immigrants. The first is the selection of patients. The waiting lists mentioned earlier allow the institutions to set priorities in selecting patients. Sometimes we find a certain “snobbism” in these selections (Nurse 7). For patients from ethnic minorities with whom bad experiences have been made, access seems to be less self-evident. This is only seldom mentioned in the interviews as explicitly as in the following example:
Seen from a professional point of view, I know that a fear comes up in team rather fast that it could become complicated, could become more complicated than with someone who comes from Germany, who was born here, hum? That I could imagine that in some cases it happens naturally that you will decide for the other one, I think that that may happen. (Nurse 2)
Unclear needs are also an issue. The palliative staff is often not really aware of the immigrants’ need for nursing support. They rather assume that familial care or the access to Russian-speaking nursing services is ensured in this “community” and that a comprehensive palliative support is not needed. Interviewees also mention a limited communication due to the lack of native-speaking staff and of professional interpreters. It is also balanced how far a needs-oriented support can be guaranteed if Russian-speaking staff are not available in the institution. Then, often, the admittance of Russian-speaking clients is called into question.
The expert interviews reveal some rather specific barriers for Russian-speaking clients in the health care system preventing them from access, such as language barriers in information material and in services. The service providers mention more general issues such as waiting lists, which have a stronger selection effect for “non-average” patients such as our target group. And they mention a number of general barriers as the lack of cooperation and in-transparency between the other parts of the system and the palliative branch, which are also relevant for Russian-speaking immigrants. How do potential clients experience such barriers in the system?
Clients’ Views on Barriers on the Level of Health Care
Different from the service providers, relatives and patients experience access to palliative care less as a standardized process but as a surprising occurrence in most cases. To have found a place in a hospice was luck of the draw or valuable contacts were necessary. In cases where a service of hospice and palliative care was used, it is mentioned as a problem that because of limited capacities in palliative wards, for example, very quickly a decision for a hospice had to be taken. Not always is it possible to arrange the access with the relatives’ help if the patients could not be sufficiently involved in the conversations. Thus, insufficient resources (staff, beds) are an issue for the clients as well. Same is the case for limited communication due to the lack of native speaking staff and of professional interpreters. Several relatives among the interviewees mention as an additional challenge unclear information about existing services and sometimes language barriers for the dying relative. This means in many cases that the interviewees had to take on the role of translator for the patient. Because of the lack of Russian speaking staff, the relatives see themselves made responsible for the transfer of information. Although the relatives see themselves in charge of translating, not everyone among them is ready to convey bad news.
They say, “You are in charge of telling him that . . ., so that he knows, that it already, . . . virtually . . . .” I tell them: “I cannot say something like this.” They say, “But you are in charge.” (Relative 5, partner)
Another issue for the clients we interviewed is not to be involved in decisions that are taken. Some of the relatives talk about how they were not involved in decisions enough for collaborating in a needs-oriented treatment. They or their sick relatives did not receive sufficient information about what kinds of services were available, which kinds of professional support were possible. Instead, they were only informed about the termination of a curing treatment.
And then she was told, it would make no sense and she would not need it to be admitted to a hospital for stationary treatment. But nothing was explained to her. (Relative 3, friend)
Because of the missing conversations at eye level, the relatives sometimes do not feel being taken seriously or confronted with wrong expectations about their own possibilities of providing family support.
Unintelligible information about therapy or palliative treatment was also an issue for the relatives and patients we interviewed.
This first kind of barriers becomes evident in the interviews on both sides (professionals and clients). These barriers are located on the levels of the health care system, of the collaboration, and of transparency. They also refer to frictions between the system’s various sub-systems (curative and palliative care for example). They become relevant in our context as the consequences or such frictions, for example, have consequences for the orientation and the transparency for the clients (patients and relatives) on the threshold between the subsystems. Their transition from one to the other area is influenced, complicated, and obstructed in many cases. Several of these issues are not specific for possible clients with a migration background. The lack of knowledge about palliative institutions on the side of family doctors, for example, is a problem in general for patients potentially on the threshold to palliative care. The lack of information can be relevant for clients with a German origin as well. The problem of waiting lists can reduce the chances of people in need of palliative care in general. But as these short excerpts from the data reveal, these problems are intensified for immigrants from the former Soviet Union in need of palliative care because of the cultural background and difference: The described lack of knowledge is intensified in its effects, when a lack of knowledge about the clients’ cultural backgrounds, preferences, and problems becomes relevant on the side of the curative and even more on the side of the palliative institutions and their staff. The lack of information becomes more relevant if the (limited) information is not available in Russian language, for example. The issue of the waiting list becomes more dramatic if implicit and explicit institutional preferences reduce their chances to be accepted. Table 3 summarizes the barriers discussed so far and shows which of them is more a topic for the experts, which more for the clients, and which are relevant for both sides.
Barriers on the Level of Health Care.
The barriers mentioned so far are in the health care system and concentrating on them alone could give the impression that clients (with or without migration backgrounds) are some kind of victim or object of specific circumstances. However, in the interviews, we find many examples in which not only the experts but also the relatives and patients talk about circumstances located on the potential clients’ side, which complicate the access to palliative support for our target group. In the next step, we address such circumstance again from the experts’ views and then from those of the clients.
Barriers on the Clients’ Sides: Perspective of Experts
A first issue mentioned by the experts is the clients’ lack of knowledge. These concern the entitlements for using palliative services, the idea of hospices, concepts of palliative care (what is it about), and the heterogeneity of services in the field. For a more informed access to the services, it would be helpful if the patients had the relevant information and could understand them. For this lack of knowledge on the side of the clients, a number of reasons are mentioned: language barriers but also the state of education, the age of potential clients, the access to media, and information in general. Lacking or limited language skills are rather relevant for the older generation of immigrants, or in-law family members of Russian-Germans make information in Russian language necessary:
Well people with migration background, it is mainly the older generation, who suffers from these diseases. And there is very clearly a language barrier. But I would not refer this only to Eastern European immigrants. (Doctor 3)
Knowledge deficits are not only seen as a result of the target group’s language problems or age but also of their educational background and access to media. Whether this becomes a barrier depends on the concrete situation.
Well education of course because, but that has nothing to do with migration but in general. People who are—let’s say are less educated, less intellectual and thus have less access to media, they do not have the access to the information about what is possible. (Doctor 7)
Thus, a migration background is for some of the service providers a problem intensified by generational problems in general.
Another issue in this context is the lack of communication about diagnosis and prognosis. To give information is often not possible or only in a limited way on the personal level. In particular, the relatives’ wish to conceal the diagnosis to the severely ill family member is a problem for the service providers. They are often confronted with it and see its source in the families’ origin in Russian-speaking countries, where keeping a diagnosis as a secret was usual for protecting the patients.
. . . that often the relatives express the wish and say: “Well we don’t need to talk about this now. And please don’t say ‘cancer’. Or: ‘Don’t talk about hospice or so.’” (Doctor 8)
In addition, language barriers on the patients’ sides make only the relatives available for the service providers for talking about diagnosis and prognosis. The relatives often insist on consenting and influencing decisions about treatment and transfers. Their decisions often determine the further development of care.
Despite available information, rejection of palliative support by Russian-speaking immigrants can occur for which various reasons are seen.
Several service providers highlight that a direct, open, and adequate verbal communication does not yet guarantee the perception and processing of what has been said on the patients’ or relatives’ side. Strategies of suppression delay the perception of their own need of help. Services then can be not used in time or in the sense of palliative care. A lack of acceptance and of the readiness for reflecting one’s own mortality intensifies this danger. This lack is seen as bigger for people with migration background.
I believe that among patients with a migration background, there are rarely people who search the contact to palliative medicine proactively, because that means to reflect about one’s own death und that you know what is coming. For patients with a migration background it is often the case that they do not grapple with that because they cannot accept that the normal medicine . . . has come to its limits, that there is no healing, and that it very clearly goes in the direction of dying. Such a grappling is not wished. (Doctor 1)
For Russian-speaking families, the service providers link the rejection of palliative support with the relatives’ wish not to take away the (inadequate) hope for healing to avoid mental suffering for the patients. Maybe caused by the multiple therapies and by the retention of colleagues in curative field against transferring patients to palliative institutions, often patients’ wishes for a maximal exhaustion of therapeutic options are perceived by the service providers. These wishes are often linked to wishes of care and dying in hospitals and makes patients and relatives unable to decide to move to the palliative services.
The patients orient themselves, . . . many are very strongly believing in doctors and oriented on mainstream medicine oriented and stay of course rather long with oncologists, surgeons and internists, who do the therapies and are rather lately transferred to palliative medicine or palliative medicine is involved rather lately. (Doctor 6)
For Russian-speaking patients, the long deference of a doctor’s decision is linked to a certain incapability to take their own and autonomous decisions for their situation:
Russian speaking immigrants, . . . because of their history in the Soviet Union, are used to manage this differently. It is simply—they always want all to be stipulated how to do it and they have to learn that they also can decide something for themselves. (Nurse 1)
Conflicting with the service providers’ understanding is the patients’ or relatives’ assumption that only a curative treatment until the last moment guarantees that all has been done for saving or extending the patients’ lives.
But relatives, in particular Russian immigrants, cannot accept that people can die at home, because the acceptance of death is not given. They always hope that you still can do something and still something and still something. But that is not the case. (Nurse 1)
The wish for more and more life-prolonging interventions is less astonishing for the service providers if the patients’ ignorance about their bad prognosis is maintained in the process of the treatment. Other experts underline that this wish can also express mistrust against the German doctors and the health care system in Germany, once curative therapies are terminated. A reason for this mistrust is seen in experiences in the former Soviet Union, where reasons for terminating a treatment often were not medical but financial ones or lack of treatments.
Barriers on the Clients’ Sides: Perspective of the Clients
About a third of the relatives we interviewed have not reported negative experiences for their own situation of care in the access to palliative support. They emphasize that their dying relatives as well as they have the knowledge about the German health care system and about hospices and palliative services. Language barriers are for them not an issue in finding access. They compare concealing of a severe diagnosis, which is described as common in Russia, with the advantages of open information about the situation, which they prefer. Wishes and needs are openly communicated in the family and with service providers. Thus, services are used on the basis of recommendations and referral. Positive experiences are dominating.
However, many refuse or are at least ambivalent about open information, as they see additional (mainly mental) stress resulting for the patient.
As I said, if the person understands too much about medicine, he looks so much, researches, starts to . . . And if the person understands a bit, researches in the computer, barges in, then it becomes more and more cruel for him . . . . (Relative 10, wife)
Many of the interviewees search for a compromise between consideration for the patients’ attitudes, their own attitudes as relatives, and the demands and conceptual expectations of the institutional palliative care.
He was a very strong man, but I remember when I came to him that day, he said everything was over. I asked him what he meant with this. Well he had cancer. And then it was an enormous job, that we had to run through for convincing him that cancer does not always mean a death sentence, that you can also heal this disease today. (Relative 10, wife)
According to many relatives, the patients suppress their diagnosis and their desperate situation for preventing their relatives any suffering, for not becoming a burden to them, or for not showing any weakness. Thus, we find the complex of lack of communication about diagnosis and prognosis and suppression also on the clients’ side as a topic.
If language barriers exist on the patients’ side which make translations by relatives necessary, many relatives find it adequate, for example, not to translate all information for patients in detail for maintaining the agreement of silence in the family.
No. He did not understand everything. First this had to do with the language, and second, I can tell you honestly, when I was busy with that already, I did not nearly tell him everything, as I saw that he was always devastated afterwards. He could hardly stand the whole truth and therefore he never knew the whole truth. (Relative 25, daughter and friend)
Some relatives describe their own uncertainty about reasons for medical decisions, which makes them distrustful. Thus, it is unclear for some of them, whether their ill relatives are not provided with certain services and treatments only because of their status as immigrants. They also cast interventions of which they cannot see a benefit or have fears about an insufficient care. Thus, mistrusting the health care system is an issue here as well, which is not only but also linked to being an immigrant. Table 4 summarizes the barriers on the clients’ side as seen by experts and clients and the reasons for possible clients’ rejection of professional palliative care as seen from each perspective.
Barriers on the Clients’ Sides.
So far, we have focused on two sorts of barriers against using palliative services in general—rooted in the health care system or in the clients’ background—from two angles—clients’ and professionals’ views. In the next step, we focus on the representations of hospices as another kind of specific barriers against their use.
In considerations about the place of death, dying in a hospice takes a special position. Almost all interviewees demonstrate that the institution “hospice” according to the Western standards and the conceptual understanding of end-of-life care in hospices was and sometimes has remained unknown to them. Many patients’ and relatives’ representations of hospices are explicitly or implicitly linked to experiences, images, and current discourses in their countries of origin. In these representations, hospices are “locations of dread,” of hopelessness, and of death for sure. Such representations make it unthinkable to use a hospice or to reflect about end-of-life care in a hospice ore to expect one’s relatives to think about this. “There you even smell death. There is no other smell there at all” (Relative 7, wife). Negative effects on the illness process and on the patients’ minds are linked to them as well.
I never was in a hospice, I don’t know what that is, I only know that a hospice is a place for the dying and to look at all of this, I believe that makes you even sicker, also mentally. (Relative 20, daughter)
In other cases, the incompatibility with personal values is highlighted. To “send a patient in a hospice contradicts for several interviewees their understanding of family care and is related to fears of a familial or societal isolation when mutual commitments are not fulfilled”:
I don’t want him to be brought somewhere, that strangers care for him. We are not used to that because we . . . yes we come from Russia and are used to care an ill person with one’s own love and one’s whole soul. (Relative 21, sister)
Several other aspects are mentioned by the interviewees that are important for reflecting one’s own finitude and for coping with a life-threatening disease: “He was at home until the end . . . . Yes, the hospice did not come into question, not even close to” (Relative 20, daughter). This includes, for example, the “hope for healing until the end,” which can extend the lifetime or “fighting against the illness for more lifetime” linked to the “belief in physical strength”:
And that was so some kind of rebellion immediately. She has simply run away home. And then continued to fight and to look for doctors who can suggest something new. Well. She wanted to live very strongly. (Relative 26, granddaughter and daughter)
These aspects are not explicitly put in a religious or spiritual context. Rather they are linked to social and familial attitudes or outlined as a coping strategy, which describe them as “typical Russian mentality.” If the principles of “hope and fight until the last moment” or fears of becoming addicted to drugs and of losing consciousness, hospices and palliative support are rejected at least for the moment.
. . . You begin with taking opiates, as I understand it, and then follows-, what is available else? Well, all that, that whole crap. (Relative 3, friend)
In these examples, an incompatibility of cultural values becomes evident: Admitting the patient to a hospice would conflict with principles of familial care and might lead to the danger of social exclusion. The imperative and duty for the relatives and patients often is to fight until the end and the use of opiates, pain medication, or drugs is seen as weakness. In such cases where this kind of interpretive pattern is given, the rejection of using hospices is the consequence.
Conclusion
What Do We Find in This Material?
In these excerpts from our interviews, we find various perspectives on the transition from health care (treatment, cure, and hope for healing) to palliative care (end-of-life care, palliative home care service, hospice) in the case of immigrants. We see clients’ and experts’ views of barriers in the health care system, which are specific for Russian speaking or other or immigrants or are stronger for these groups compared with other target groups. We see the challenges both sides face in the process of transition to this new field of experience (facing end of life in a professional context). We see in many examples clashes between cultural values around the family and its obligation to take care until the end and the connotations of doing so or of including a professional support such as a hospice. The concrete challenges of adapting to this new experience and situation is embedded in transitions on various levels: The transition from family care to professional care also at the end of life; the transition from hospital care (including the aims of healing and health) to end-of-life care (in a specific place for supporting the phase before and of dying); the transition from a different cultural context (Russia to Germany) and the specific values there to the differences in the new context. This transition is also a transition from a rather regulated and determining system to a situation of Neo-Liberal release from structures, which make individuals some kind of planning offices of their biographies (Beck, 1992). The consequence is in many cases that the options and needs of decision for specific kinds of treatment and support open new freedom of selecting the “right” one. But at the same time, this can lead to a specific kind of over-challenge in selecting the “right” and (culturally) acceptable solution.
For What Do We Need Data in This Example?
That immigrants from Russia have trouble using palliative care services in Germany had been reported by practitioners prior to the study. However, a more detailed analysis of how this occurs, and of the contribution of service providers, institutions, cultural backgrounds, values, and practices of the potential clients, was missing. To work with the data and to work with triangulation of perspectives (see Flick, 2018) in this context allows making several contributions in the field (see also Migala & Flick, 2018):
Contributions to understanding how such a field works and why it does not,
Reflection of practices in the field,
Reflection of adequate methods for studying them,
Try to develop suggestions for how to change the policies in this field,
Contribute to improving chances for service use,
Go back to patients’ organizations and representatives to provide more information about adequate services, and
Go to practitioners for providing more culture-sensitive services in this field.
In these contexts, data are our way of communicating our contribution to understanding and changing routines and social problems. Data result from communication with and in the field. With such a study, we want to give voice to the people in fields where they are disadvantaged in finding the professional support they need because of social reasons such as their migration background. Then our data and their analysis can become a means of making such a situation public–which is a need in particular in Neo-Liberal Times.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this study was obtained from the German Ministry of Research and Education (Funding Reference 01GY1312).