Between Two Worlds at the End of Life
Researchers at Freie Universität are studying why Russian-speaking immigrants seldom make use of the services offered by Germany’s palliative care system.
Mar 30, 2016
There are about four million immigrants from Russian-speaking countries living in Germany. “They make use of palliative care institutions, such as hospices or specialized outpatient services, less often than the majority of German society – although they die, too, of course, and could use the care,” says Uwe Flick, an education scholar at Freie Universität. He is the head of the PALQUALSUM: Palliative Quality of Life – Service Utilization by Migrants from Russian Speaking Countries project, which is supported by the German Federal Ministry of Education and Research (BMBF).
The aim of the study is to clarify what keeps Russian-speaking immigrants from seeking help. To that end, the researchers are taking a two-pronged approach. First, they are studying the wishes of the terminally ill for the end of life and how family members cope with caring for these patients. Second, they are also collecting information on the issues faced by professionals involved in care and using this information to determine how the German palliative care system needs to change in order to provide optimum support to families from immigrant backgrounds.
A Heterogeneous Group
Flick quells any hope of simple solutions. As he says, “Russian-speaking immigrants are a highly heterogeneous group. That’s partly because they come from different countries in the former Soviet Union as well as being due to the specific situations of the many ethnic Germans who lived in Russia and Jewish immigrants. Under the circumstances, cultural differences also come into play.”
Doctors and other healthcare professionals cannot assume that a certain intercultural communication set will work simply because a patient speaks Russian. With this in mind, the scholars plan to develop a manual for palliative care experts in order to sensitize them to cultural particularities – without creating or reinforcing stereotypes. To do this, they have surveyed 52 physicians, psychologists, nurses, social workers, ministers, and volunteers about their experiences.
Socialization Plays a Role in Dealing with Illness, as Elsewhere
“In Germany, it is a big problem for doctors if they cannot explain the treatment to patients directly, openly, and without intermediaries. Especially if they have the feeling that the patient is not deciding on the next steps with self-determination,” says Silke Migala, who works on the project. Language barriers are not the only factor making communication more difficult. When family members translate for the patient, she says, they often tell the doctors that they do not want the patient to receive information, and that they will not pass it along, saying that they will be the ones to decide.
From discussions with ten physicians and psychologists in Russia, the researchers learned that the customary practice there is to provide family members with more information than the patient him- or herself. At the same time, many immigrants expect a certain level of almost familial intimacy with the doctor. Some experts describe the challenge as needing to become a temporary family member in order to keep communications running more smoothly.
Family Is Key
The crucial role played by the family may also be what keeps many family members from seeking help, even when they are obviously overwhelmed. “Families emphasize over and over again that they will not give anyone up, neither to a home nor to a hospice,” Migala says.
Finally, when caring for someone in a family setting becomes impossible, Russian-speaking immigrants can really benefit from “rooming-in” options at hospices and additional beds in palliative care units. But many of them are not even aware that these options exist, Migala says. “They picture hospices as places of horror, and then they are very surprised to find nice, welcoming rooms where the staff has much more time than the staff at a normal hospital and families can even be there 24 hours a day.”
Differences between Generations
The scholars interviewed 31 Russian-speaking patients and their family members. The subjects told them about very different life circumstances and needs. “Younger people in particular are increasingly questioning certain ideas, such as the traditional role of the family,” Migala says. But there are some commonalities nonetheless. Russian-speaking immigrants are generally ambivalent toward the idea of open explanation and provision of information, and they stress how important it is to them that patients not be deprived of hope. This is often accompanied by the desire for measures to prolong life.
The researchers have found that the immigrants view doctors with a certain mistrust dating back to their time in Russia, where the reason to stop treatment is often not a medical one, but simple lack of resources or lack of private assets to finance the treatment. Migala says, “They hope that every possible option will be exhausted right up to the end.” Some patients refuse medication for severe pain, however. “They often say that they want to keep their mind clear. Opiates have a negative image because they dull the patient’s awareness or are associated with dependency problems,” she explains.
Maintaining a Russian Day-to-day Life
Maintaining some aspects of everyday life is important to many patients: watching Russian movies, listening to Russian music, getting Russian food. Flick says, “There are serious deficits in this regard. Especially in inpatient units, many people feel that they have been torn from their former life. They feel completely isolated.”
The study raises the issue of the extent to which specific care options are needed for immigrants, perhaps even in their native language. In Berlin, there is one hospice service, at least, that offers Russian-language support from volunteers. Establishing and strengthening the use of cultural intermediaries and linguists could be another step. It is especially important to sensitize the institutions and to work toward increasing communication and interconnectivity between palliative care services and advice and information structures geared specifically toward immigrants as well as social, cultural, and religious communities and institutions.
The study is scheduled to be completed by the end of the year. Flick’s team plans to compile and prepare the results for doctors, nursing staff, and other caregivers and use them to help with continuing education and training for volunteers, for example. They also plan to develop informational materials for Russian-speaking immigrants in order to explain what palliative care in Germany means and what services are available, in order to offer them the same opportunities to say goodbye with dignity.
Prof. Dr. Uwe Flick, Department of Education and Psychology, Qualitative Social and Education Research, Email: firstname.lastname@example.org