Palliative care: telling everything is not always the best

In palliative care for Turkish and Moroccan patients, care providers have to balance between their own professional values and the values of patients and their family. Open and direct information as we are used to in the Netherlands, can destroy all hope and can be perceived as rather harsh, as a NIVEL study shows, on which subject Fuusje de Graaff obtained her doctorate on February the 23rd at Amsterdam University.
 

To care providers who would like to speak openly with patients about the diagnosis ‘not to be cured’ and the prognosis, the principle of direct information is more important than patients’ wish not to be informed about everything, as Fuusje de Graaff states in her thesis. One of the key messages of her study is the discrepancy between the Dutch ideas about palliative care and that of many Turkish and Moroccan families. They expect a doctor to try to cure a patient and to continue to give hope up to the last minute, even with patients who cannot be cured.

Family business
Mostly, the illness is a family matter and a member of the family is an intermediary between patient and care providers. The family is bothered about the medical judgement ‘not to be cured’ and will often not tell the patient this verdict because they want to protect him or her and do not want to shatter hope. “For Dutch care providers quality of life is the most important thing. Therefore, when doctors expect that a patient will die soon, care providers judge that preventing or controlling pain and discomfort is more important than to lengthen the patient’s life. Turkish and Moroccan patients and their family are not likely to accept this. They think that the moment of dying is in God’s hands and not to be decided by doctors. Also, they are afraid that a pain-relieving treatment makes a patient drowsy and one should present oneself to Allah with a clear mind.”

Decision making
Fuusje de Graaff studied how palliative care to patients of Turkish and Moroccan origin is provided in the Netherlands. She studied especially the communication and the decision-making in the contacts of doctors and nurses with the incurable patients and their family. “In joint decision-making lies the key to the best possible care. Care providers have to find a way in the triangle care provider, patient, family. Older, more experienced doctors and nurses seem to be more inclined to take the wishes of several family members into account. They explain how it works in the Netherlands, and they ask the patient what he wants to know and what his wishes are. It is very important to connect with the patient and the family.”

Interdisciplinary cooperation
Additionally, progress can be made by improving the interdisciplinary cooperation, states De Graaff. “The family often has higher expectations of the hospital than of the GP and in case of problems the family prefers to appeal to the hospital. Therefore, specialist and GP need to be in tune with each other. Also, the link between informal care, home care and GP can be better. So far, Turkish and Moroccan families do not use home care very often. Employing home care – in addition to the care by the family – is advisable, because home care staff notices changes quickly and can communicate these to the GP. The professional care can then react quicker to a change in needs.”
Fuusje de Graaff describes her findings in detail and stresses that many findings are also applicable to many Dutch people and that migrants too are not all the same. The study results in useful insights to deliver customized palliative care.

Funding
- ZonMw

Cooperating partners
- University of Amsterdam
- Pharos