All a question of trust: Florian Bernhardt is working on a study of the access which Muslims have to palliative care

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Florian Bernhardt is working on a study of the access which Muslims have to palliative care

Dr. Ferya Banaz-Yasar, Coordinator for Palliative Medicine at Essen University H
Dr. Ferya Banaz-Yasar, Coordinator for Palliative Medicine at Essen University Hospital, PhD candidate Florian Behrendt and Prof. Philipp Lenz, Director of Palliative Medicine at Münster University Hospital (left to right) discuss the results of the study. © UKM - Marcus Heine

Palliative medicine has been establishing itself in Germany for some years now, and today caring for terminally ill people at the end of their lives is no longer conceivable without it. In such situations, it ensures that control of symptoms and, in consequence, the quality of life are both improved. One problem, however, is that individual groups of patients such as immigrants are underrepresented in the field of palliative care. Florian Bernhardt, a doctoral candidate of medicine, and Prof. Philipp Lenz, the medical director of the Central Institute of Palliative Medicine at Münster University Hospital, carried out over 30 interviews with Muslims in order to hear their opinions, concerns and expectations on the subject. Bernhardt’s study, funded by the Schober Foundation, bears the rather complicated title of -Access to Palliative Care for Muslim Immigrants and their Direct Dependents in Germany - Possibilities, Barriers, Reservations (-ZuPaMEN- for short).

The study is being carried out in four so-called arms: with a) patients who are already receiving palliative care, or b) would be entitled to it, with c) these patients- immediate family members, and, lastly, with d) experts such as imams or doctors. -In the process,- says Bernhardt, -we are interviewing not only as many people as possible, but also those with maximum differences - for example, with or without experience as refugees, or with a lower or higher level of education. So far, those responsible for the study have questioned Sunni, Shi-ite and Alevi Muslims from seven different countries whose mother tongue is Turkish, Arabic and Albanian. Whenever necessary, interpreters were enlisted to help.

As regards palliative care, the study shows that many Muslims have no understanding at all of what it involves. -They have rarely made a conscious decision in favour of palliative medicine,- Bernhardt explains, -but in most cases they are very pleased with the care.- Some Muslim patients speak little or no German, he adds, or do not understand medical terminology - which means that non-verbal communication is all the more important, although doctors often take only very little time for this. -The big question is: To what extent is the situation a certain patient is in really recognised?- he continues, adding that things are made more difficult by the fact that the word -palliative- does not exist in many languages.

For many Muslims, the family is extremely important, and in many cases there is the expectation that families will look after patients until they die. -This expectation people have of themselves - that they should be responsible for care - exerts an enormous amount of pressure on family members, and here in Germany, where many secondor third-generation Muslims are in full-time jobs, this is often simply not feasible,- says Bernhardt. Also, he adds, many people are not aware of the support that is available. What patients and families wish for is someone in regular contact who is also knowledgeable. This would help those families who can no longer cope with the situation by themselves, and it would also make emergency referrals unnecessary. -We need recommendations for the future on how to act in order to comply with these wishes.-

Bernhardt also calls for palliative structures to be integrated into the course of an illness as early as possible. As a result, he says, it could be made clear to patients that, in the case of palliative care being undertaken, absolutely no one would be trying to get them out of the way or give them up - but that palliative care could do a lot of good, also over a longer period of time. -In the end,- he concludes, -it all depends on how much trust the patient and the family have in the team caring for them.-

This is something which Prof. Mouhanad Khorchide, the Director of the Centre for Islamic Theology (ZIT) at Münster University, also confirms. -There is hardly any pastoral care in hospitals in the Islamic world,- he explains. -In the recorded hadith, there are appeals to family members to visit the sick. Looking after them is seen as an Islamic virtue and is a matter for the family.- However, the fact that one should care for older people is, he says, a cultural development and a legacy from pre-Islamic tribal structures, and not a religious duty in the narrower sense. -Women are often the ones who have to carry the burden resulting from this attitude because they have to care for family members at home, round the clock. As a result there are, increasingly, conflicts with younger generations,- says Khorchide.

However, he adds, it is not - in contrast to what some imams and hodjas often claim - a sin to delegate the care of family members to doctors. A similar case is the view that people who are terminally ill must be provided with the maximum possible care, as only Allah can give or take away life. -Family members want to ease their conscience by ensuring that they do everything they possible can for someone who is terminally ill.- The main problem, he explains, is the lack of transparency, and such fundamental ethical issues should therefore be a part of education in schools and should be discussed openly and honestly within families. -Death is often a taboo subject among Muslims,- says Khorchide. -Removing the taboo would help everyone concerned.-