Hospice care adapts to a multicultural Germany

Hussam Khoder, who has volunteered with the ambulatory care services at the Lazarus Hospice Berlin for seven years, will never forget the day in 2019 when a man from Iraq turned to him for help after checking his 7-year-old into a hospital. The man and his son had arrived in Germany after an arduous journey that involved crossing the Mediterranean Sea in the hopes of finding quality care for the boy's cancer. "The father carried his son to Germany on his back," Khoder said. 

Born to Palestinian parents in Lebanon, Khoder arrived in Germany when he was 20 years old and was able to communicate with the man in Arabic and translate for doctors and caregivers who only spoke German. Khoder found a place in a palliative care home for the boy and read to the father and son from the Koran. "In the beginning, I would chat with the boy and play with him," said Khoder, who is 48. But the child grew weaker, and  Khoder, who has two children of his own, then focused on assisting the father. 

The doctors tried chemotherapy on the boy without success. As it became clear that the child had only weeks to live, Khoder and his agency succeeded in getting a permit for his mother to fly in from northern Iraq. After the boy passed away, she returned to Iraq with his body. "We consoled each other," Khoder said.   

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Khoder is a laboratory assistant by training and began his work in palliative care in 2013, when he found a leaflet at a Berlin mosque. Helping appealed to him, and he discussed the matter with his imam. Khoder contacted Lazarus and began training to give palliative care. Islam places great value on people who tend to the sick, Khoder said, and Muslim families have increasingly sought inpatient and outpatient palliative care despite interpretations of the Quran that have led some to believe that sick people should be cared for by relatives in their homes.

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Hospice's 'backbone': Volunteers 

About 30,000 people a year spend the last weeks or months of their lives in Germany's palliative care homes, according to the Federal Statistical Office. Now, the German Hospice and Palliative Care Foundation has highlighted the importance of making volunteers aware of cultural differences when tending to the terminally ill. 

Run by the Hoffnungstaler foundation in Lobetal, Lazarus is one of several palliative care providers that specialize in tending to people from different cultural backgrounds. German health care insurers cover 95% of the costs for terminally ill patients at hospices, which fund the remaining 5% through donations. To be admitted, patients must submit a hospice referral from a doctor and prove that they have health insurance. 

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Elizabeth Schmidt-Pabst, a 43-year-old nurse from the United States who has lived in Berlin for over 20 years, manages volunteers for Lazarus. The agency runs a program for people who may require care attuned to their cultural needs. The website offers information in German, Turkish, Polish, Arabic and English, and volunteers tend to Berlin's diverse communities in languages that patients can understand — from Vietnamese to Romani.   

"We often receive calls when people are on their own and in need of someone who speaks their mother language," Schmidt-Pabst said. She added that the ability to communicate with caregivers is often more important to patients than receiving assistance specific to their religions. Schmidt-Pabst said many patients from abroad had arrived to Germany with high expectations of health care in this country. Though doctors in Germany do their best for patients, she said, sometimes nothing helps. In such cases, patients will receive the best possible palliative care to treat the pain and other symptoms rather than attempt in vain to cure them. Schmidt-Pabst said communicating the hospice's approach to patients, could sometimes prove complicated.  

Lazarus tends to about 150 patients per year, Schmidt-Pabst said, about one in four of whom were born abroad or had a parent or grandparent who was. Outpatient palliative care is free for patients. This service generally includes counseling, assistance and referrals to different doctors. German hospitals partially fund these services. Yet "volunteers from the backbone of outpatient hospice care," Schmidt-Pabst said. "We are always looking for volunteers to join, like all palliative care agencies."

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Growing demand 

It has been a busy decade for advances in palliative care in Germany. A decade ago, about 50 palliative care agencies wrote and signed a charter on caring for gravely and terminally ill patients in Germany. The document emphasizes that every patient holds unique value. In 2017, the Family Affairs, Senior Citizens, Women and Youth Ministry for  convened a panel on the intercultural aspects of palliative care. In 2019, a group of medical researchers from Göttingen university published a comprehensive report on intercultural hospice and palliative care. They concluded that people who were boprn abroad or have at least one parent or grandparent who was tend to use hospice and palliative services less than other Germans. The researchers urged a greater focus on ensuring that medical staff and caregivers possess the relevant language skills, cultural sensitivity and awareness to engage with diverse communities. 

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In 2018, Rabia Bechari, a Muslim nurse and emergency caregiver who began her career in Germany's Christianity-based medical organizations, co-founded an organization focused on intercultural and religious awareness in palliative care in the western city of Offenbach. "We trained up 15 volunteers until March," Bechari said. "But then the coronavirus pandemic hit." 

Bechari said there was great need for Muslims in hospice and palliative care in Germany. "It is overdue that we provide this service," she said.