Tuesday, December 13, 2011

Palliative Care in Jordan: Culturally Sensitive Practice

Mohammad Bushnaq, M.D.
Dear Editor:
At the King Hussein Cancer Center in Jordan, we have been working since 2000 to implement palliative care for patients with cancer. We have been taught using materials from the EPEC Project, the ELNEC Project, and onsite teaching by teams of physicians and nurses from the United States as well as training at San Diego Hospice and the Institute for Palliative Medicine. As part of our implementation, an important question arose. How do we apply what we learned in palliative care in harmony with our culture? Let me illustrate with a recent case. A 52-year-old man presented with pallor, fatigue, and jaundice due to pancreatic cancer metastatic to the liver. He was married and had three daughters. He was a devout Muslim. After investigation, the oncologist decided there were no curative measures and he referred the patient to palliative care. At the time the palliative care team arrived in the patient’s room, many family members were waiting outside the room with many questions. They said they hoped they will find a treatment somewhere else. They asked that the patient not know anything about his disease to keep up his morale and spirit. The atmosphere was tense. We asked the close family for a “family meeting,” in which we listened to them talking about the disease progression, their feelings, hopes, and their expectations from us. Then we shared the disease condition and prognosis. In Jordan, based in the Islamic religion and cultural norms, people believe that no matter what you do, when your time comes to die, it is God’s wish and your destiny. Therefore, it was easy for the family to accept a do-not-resuscitate concept.
And in the same way, they accepted the fact that it is the right of the patient to at least have some sense that his death is near, so that he could finish “unfinished business,”
in particular moral and religious duties, so that he may meet his lord free of sins.
Then, we asked the family to join us to see the patient together. We talked about his cancer, emphasizing that the goal now will be for symptom control and quality of life. He listened carefully and then he asked: how much time do I have? We answered, “We don’t have a definite answer, but we do recommend you balance things. At the same time you have hope to survive for a long time, you really need to get prepared. In other words, hope for the best and prepare for the worst.” The patient and the family were satisfied with this open discussion, and the patient was discharged home with our home palliative care service. Three weeks later the patient died at home peacefully.
This case illustrates that approaches developed in Europe and the United States can be integrated into traditional Arab culture. We think its clear that values and principles of palliative care are the same everywhere, but the way we apply it needs to be tailored to local culture and norms. In this example,
in response to his question, “How long have I got?”
we did not answer with the phrase, “Weeks to months’ as we might if we had been practicing in California. We have the following advice for those working in Arab and Muslim culture.
• The family system is strong. Parents, spouses, and elder children are involved in making decisions. They need to be assured that we respect their opinion and input.
• Traditional Muslims believe the patient must attend to some moral and religious obligations before death.
• When facing suffering and illness, a traditional Muslim accepts suffering as a way of atonement of one’s sins. This doesn’t conflict with giving all efforts to relieve suffering. This way of handling suffering helps the Muslim cope with the illness and to die in peace with self, God, and others.
• When we ask patients if they want to hear the truth when we are “breaking bad news,” most of the people say yes. But, we subsequently discover that they wish they did not ask. We discovered most are seeking reassurance and empathy rather than information, even though they answer “yes.” Our approach now is to respond to the patient’s question with a more oblique answer. We try to switch their focus toward quality of life and comfort, without offering false hope. In rare occasions, when the patient insists to know, we give the answer following the six steps of breaking bad news advocated by Robert Buckman.
• When asked about prognosis, in our experience, traditional Muslims respond well to euphemisms. Instead of giving answers in terms of time, we say that he/she is really in a critical condition, and it is the right time for him to meet his family and to prepare for the hereafter in case he/she deteriorates. This prompts the family to move into their traditional role, sometimes with our help, to stay at the bedside, reading a chapter from Noble Qur’an and to prompt gently that the patient speak the shahadah; (bearing witness that there is no true God but Allah and Mohammad is verily his servant and his messenger).

Letters to the Editor
• We do not present do-not-resuscitate status as a choice. Patients and families tell us it is a big burden for them to choose, and many family members said they would feel guilty if they make that decision. Instead, we rely on our legal and religious background, and inform the family this is a medical decision so they only need to be informed, not to decide.
• Muslim people are not familiar with “chaplain,” since in Islam you can talk directly to God, and you do not need anybody to help you pray. On the other hand, we found that it is very useful to have somebody who has the skills to address spiritual needs with the patients at this stage of their life.
Address reprint requests to:
Mohammad Bushnaq, M.D.
Hospice and Palliative Care Consultant

 
Dr. Mohammad Bushnaq
General Manager
Dr. Mohammad Bushnaq is an internist with international fellowship in Palliative Care and Pain Management from USA. He is the Chairman of Jordan Palliative Care Society.
He worked at King Hussein Cancer Center, and he is currently associate instructor at Hashimate University. He is a temporary advisor for WHO, regional office for palliative care and pain management.
He has a long experience in pain management, wellness, burnout and self care. He participated by presentations and scientific papers at local and international levels.

Jordan - Amman 
Phone/ fax: 009626 5679099
 Mobile:  00962 79 6924688
                00962 79 567700           
Email:      info@drbushnaq.com
                 drbushnaq@yahoo.com

No comments:

Post a Comment