Background
Aim
Methods
Expert identification
Gender | Female | 7 |
Male | 6 | |
Migration background | Yes | 6 |
No | 7 | |
Field of expertise | Palliative care, physician (Adults) | 1 |
Palliative care, nurse (children) | 1 | |
Outpatient and inpatient hospice care | 2 | |
Diversity management in institutions for old people | 1 | |
Diversity management in hospital | 1 | |
Transcultural psychiatry | 1 | |
Outpatient nursing care | 1 | |
Training of transcultural competence | 1 | |
Research (migration, diversity, religion and health) | 4 |
Data collection
Data analysis
Results
Participants
Categories and themes
Access barriers to palliative care
Health care system
Access may depend on regional demographics (high rate of migrant population), which may influence how important the development of strategies is perceived. Also, local service organization may influence access. An integration of specialized palliative care into curative care, e.g. may ease transitions to palliative care structures.“(That they) don’t get to the care structures they need, because information happened with an attitude of exclusion rather than inclusion (…) implicitly suggesting: ‘Better not come to us’, and the group of older immigrants just didn’t know what they needed, where to go (…) in this tangled mess of offers.” (Interviewee 3, health care professional, non-palliative care)
Users
“Taboos are strengthened because the older generation longs for the younger ones to care for them at the end of life. But they can’t, and it’s a taboo to talk about this. Because what they think about nursing homes and end of life-care is shaped by institutional realities in the country of origin, and those are mostly bad examples.” (Interviewee 6, migration research)
“(…) for those affected, this ‚nothing can be done‘ (in terms of curative options, AN) is a death sentence, and they try to dive back into the old system of family and extended family support. (…) Then the memory of collective identity regarding social values subconsciously kicks in (…) that the family has to step in, even though they are all exorbitantly overburdened (…).” (Interviewee 7, health care professional, non-palliative care)
Socio-political aspects
Institutions or individuals in institutions that aim to strengthen diversity perceive these processes as laborious and time consuming. Also, specialized palliative care itself has only developed in recent years, and experts stated low awareness of specialized palliative care in the general public, which extends to the migrant population, and may be intensified by language barriers.“(…) it is like an encounter with biomedicine from the 1960s. And if you look around, how much has not been communicated, how much effort oncology has put into ending this pseudo-protection of patients, how much has been worked on shared-decision-making, work with the relatives in the past 30 years, that has all passed those people (older migrants, AN) by.” (Interviewee 7, health care professional, non-palliative care)
Challenges in care
Adaptation of health care structures to patients’ needs
“What we often experience is that patients who are labelled difficult, and this is often migrants, because of language barriers, because of cultural differences, because of different expectations towards the hospital, that they are sent from A to B, and that they often have experienced an odyssey without receiving proper care. And if they knew that there is another possibility of care, I believe this would be much more comfortable for the patients, and they would come to us sooner” (Interviewee 2, health care professional, palliative care)
Patients’ preferences and risk of culturalisation
“My experience is that patients, especially from the Middle East, that they very often want a strict directive from their physicians with clear statements: ‘This is the situation, and this is how it is going to be.’ That is contrary to how we prefer to deal with (…) patients.” (Interviewee 2, health care professional, palliative care)
While experts mentioned possible differences in patient preferences, they also noted that migrant groups are as heterogeneous as non-migrants. They observed that issues in care for migrants were often attributed primarily to patients’ culture, and other factors (e.g. age, education, societal factors as discussed above) were not considered, leading to a risk to culturalize conflicts.“(…) it is hard to accept that the patient is shielded from information, (…) we’re so used to holding up patient autonomy (…). I sometimes have problems to realize this myself, because it is the patient I treat. I have taken to ask the patient in private, if possible: (…) is it okay with you that your relative makes decisions for you? Or do you want to be involved in everything? (…) I document that, and then I can be sure it is okay with the patient.” (Interviewee 2, health care professional, palliative care)
Communication and language barriers
“I (…) had a patient (…) with a brain tumor, who felt very isolated in medical care (…), not regarding the medical situation, but in a psychosocial manner. She had plenty of visitors. (…) but on the ward, they didn’t engage with her enough. (…) because they knew she didn’t speak German, they just put her food there, (…), and she would have wished they spoke to her. When there’s a note saying “doesn’t speak German” in the patient record, communication on our behalf may be terminated, and sometimes even non-verbal communication will be discontinued (…)” (Interviewee 7, health care professional, non-palliative care)
Health care institutions often employ (non-medical) staff members as interpreters. These interpreter services may overburden staff members regarding both work load and emotion.“They (health care professionals, AN) should ask themselves, could they tell their father how the situation is, could they [tell] their spouse, when they only comprehend half of the words spoken, because they are in grief, if they could do so.” (Interviewee 8, health care professional, palliative care)
Strategies to overcome problems
Overcoming access barriers
Also, updating information on service provision regarding language as well as appropriateness, and disseminating information on specialized palliative care through appropriate channels (e.g. media in native language) were deemed helpful.“I think it is easier to win over people from the community, who speak the language and to train them as multipliers (…) as intermediaries with regard to hospice and palliative care. To try to win people from the communities, and give them information they can disseminate” (Interviewee 9, migration research)
Use of interpreters
“(...) I get calls, and they say: ‚Do you have someone in your team who speaks, for example, Turkish? It’s very important, because it’s not possible to speak with the patient.’ Then I come and realize: It is possible to speak with the patient, you need to speak slowly and clearly, and take your time, and I think a lot of services don’t have that time (…)” (Interviewee 4, health care professional, palliative care).
Training cultural competence
Experts on the other hand stressed the importance of training competence in action, e.g. by role play of uncomfortable situations, to reduce reservations and fear of breaking perceived taboos. The concept underlying those trainings should be “transcultural”, i.e. a reflexive concept of culture which takes socio-economical, gender and political factors into account.“I don’t give them recipes – this is how you behave with someone from Turkey or from Afghanistan – but to approach them [patients, AN] with an open mind. (..) to tell them, when you’re insecure, or when you don’t understand something, to ask them. And also to explain yourself, what you’re doing and why.” (Interviewee 4, health care professional, palliative care).
Intercultural teamwork
“On one hand, diversity management has to be implemented and practiced, and on the other hand, key positions should not only be filled with Germans.” (Interviewee 12, health care professional, non-palliative care)