Continuing our series about palliative care in the context of humanitarian crisis. We look at the implications of providing palliative care and bereavement care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.
Sonja Owusu-Boakye, Christian Banse and Friedemann Nauck, Clinic of Palliative Medicine, University Medical Center Göttingen, Göttingen, Germany, describe their research and interview study with patients and relatives with migratory backgrounds and professionals in the oncology/palliative care sector.
In our research, we learned that (specialist) palliative care of refugees can present particular challenges to all healthcare providers. In interviews, providers told us about patients who had embarked on their journey to Germany with very advanced diseases. The humanitarian situation in their home country was so intolerable that adequate health care could no longer be provided. Some patients were forced to leave their families behind. Often there was only enough money for one person to flee.
We observed a difference between migrants with a secure (usually unlimited) residency status and refugees who are still in the asylum process, or who are threatened with deportation. Seriously ill refugees can be affected by various factors.
These factors can have several consequences for the physician-patient interaction:
- Language can play a role in treatment communication: How is the patient processing the diagnosis? What are his/her needs? Is it possible to speak about imminent death? Was the patient previously aware that he/she was severely ill?
- Traumata experienced in the country of origin and during flight may still be very present: What has the patient experienced? Is there a need for psychotherapeutic care?
- Social welfare payments: Social welfare law in Germany stipulates that each council must pay for the health care of refugees. But how is the provision of payments organised? Which treatment measures are covered, and how quickly? What formalities must be met?
- Life circumstances and acute crises of the patient: Has residency been regulated? Is the patient or his/her family threatened with deportation? What is the accommodation like? Are there family or friends who can support the patient?
In Germany, there is currently no uniform procedure for financing health care for refugees. Instead, there are different solutions at state level, for example, the electronic Health Card (Bremer/Hamburger Model). Therefore, healthcare provision to refugees differs greatly in Germany. On the institutional side, we also observe a lack of guidelines and networks with, for example, local relief agencies to ensure appropriate care to refugees. We have found that refugees with severe diseases require not only health care, but also often have a substantial need for psychosocial care.
Our study has shown that people who have come to Germany encounter many helpful people who allow them to die with dignity. This is precisely why it is important to create better political and institutional conditions for care – and thus enable supporters to provide appropriate help.
You are welcome to contact us by leaving a comment at the end of this article or by emailing us at: Sonja Owusu, Christian Banse or Friedemann Nauck.
Links and further reading
- Learn more about our research project on our website (available only in German).
- PALCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies). For more information please email Joan Marston.
- New PALCHASE Survey on palliative care in humanitarian contexts – interested in joining a community of practice? Read more about the survey and take part here.
- If you’ve worked in humanitarian health care in the last two years, please complete this survey and add your voice to a global discussion on current practices and needs related to non-curative health care in humanitarian emergencies.
- Palliative care in humanitarian crises: Always something to offer. The Lancet Online, 15 April 2017.
Follow the EAPC Blog for more stories in this series. We would be delighted to receive more contributions about palliative care in humanitarian crises. Please contact Avril Jackson if you would like to contribute.