One of the hardest tasks an oncologist faces is telling children with cancer and their families that there is no longer hope of a cure and that the time has come to discuss end-of-life care. For Dr. Myriam Weyl Ben-Arush, head of the Pediatric Hematology Oncology Department at Rambam Medical Center in Haifa, Israel, this task is complicated by the fact that her young patients may be Israeli or Palestinian; Jewish, Muslim, Christian, or Druze; religious or nonreligious.
Working effectively in cross-cultural situations such as this is known as cultural competence. In medicine, cultural competence means providing health care services that are respectful of and responsive to the health beliefs, practices, and cultural and linguistic needs of diverse patients.
What Is Palliative Care?
Palliative care improves the quality of life for patients who have a serious or life-threatening disease. The approach is not exclusively for patients who are dying but rather is meant to prevent or treat symptoms of a disease, side effects caused by the treatment of a disease, and psychological, social, and spiritual problems related to the disease or its treatment. Palliative care is more effective when it is provided early.
Read more about palliative care in a themed issue of the NCI Cancer Bulletin from earlier this year.
“In the area of palliative care , culture comes into it in a big way,” said Dr. Joe Harford, director of NCI’s Office of International Affairs . “Different cultures have different views of life, death, [and] pain, and those need to be appreciated.” He noted that because of the cultural diversity found in the United States, sensitivity to these views is an important consideration for palliative care in this country, as well.
Dr. Harford’s office oversees the Middle East Cancer Consortium (MECC), a partnership between the United States and the health ministries of Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. In 2005, MECC launched a project to build capacity for palliative care and related research in the region. “The project was established to raise awareness of the palliative care problems shared by all MECC members,” said MECC Executive Director Dr. Michael Silbermann, of Haifa, Israel. “It is based on identifying common ground across cultures and relying on their shared interest in establishing palliative care services, as a basis for developing dialogue and cooperation on sustainable cancer care in both hospitals and the communities.”
As part of this effort, MECC has conducted workshops and training for nurses, physicians, and social workers, and provided opportunities to observe successful palliative care services in the United States. One of the consortium’s goals is overcoming the fear of opioids , sometimes called “opiophobia,” that is widespread in the Middle East and is a major barrier to providing adequate pain management for cancer patients.
“Palliative care is much more than pain relief,” stressed Dr. Harford, “but at least three-quarters of cancer patients experience more than just moderate pain. For this reason, MECC has made training related to pain relief a high priority.”
Because children make up a large proportion of the population in the Middle East, 2 years ago MECC formed a pediatric palliative care strategy group chaired by Dr. Aziza Shad, director of the Division of Pediatric Hematology/Oncology, Blood and Marrow Transplantation at Georgetown University Hospital in Washington, DC. “No matter what culture you come from, death is the same for everyone. What is important is how you accept it and deal with it,” said Dr. Shad, who has taught palliative care in several developing nations. “The differences lie in how the family hierarchy works, and who decides how much information on prognosis or end-of-life should or should not be given to the family members or the dying child.”
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Dr. Joe Harford, director of NCI’s Office of International Affairs, talks about the importance of cultural sensitivity when providing palliative care to cancer patients in member countries of the Middle East Cancer Consortium. (Video produced and edited by Sarah Curry)
Overcoming Cultural Taboos
Much of the initial focus in the MECC palliative care project has been on end-of-life care , because that’s where the need is greatest. But discussions of death and dying, and even the mention of cancer, are still taboo in many countries in the Middle East. And, noted Dr. Harford, “the taboos against telling a child that he or she is dying are even stronger than about talking to an older person who is dying.”
Despite the taboos, people are receptive to ideas about improving end-of-life care for their loved ones. “Oftentimes it’s not really a cultural barrier, it’s simply a barrier of education and understanding,” Dr. Harford explained.
Indeed, said Dr. Silbermann, the key lies in education at all levels, including families as well as health care professionals, imams and rabbis, and politicians and ministers of health. Dr. Silbermann emphasized the importance of including the family in the discussion. “We have to educate the parents as well as the kids…don’t lie, be honest,” he said. “This multilevel education is an ongoing process and a very difficult process because this is a new idea for societies in the Middle East.”
If caregivers don’t tell the truth, Dr. Ben-Arush explained, “the child will lose his belief in the staff, and he won’t cooperate any more…and he will suffer much more, because we need the child [to] explain to us how we can help him.” Furthermore, she said, “I am convinced that most of the children know that they are dying, [and] without the support of the psychosocial staff, as well as the nurses, the physician won’t find the way to help the children have a peaceful end of life.”
To help care for patients from diverse cultures, Dr. Ben-Arush’s staff includes Arabic-speaking nurses and social workers, as well as those who speak Hebrew. “We are lucky because we have one social worker [specifically] for the Palestinian children. I found donations to pay her salary,” she said. “And for each Palestinian child she is so involved.”
Dr. Ben-Arush noted that it’s somewhat easier to talk about death with a Druze family that believes in reincarnation or an Arab Christian family whose child believes in Heaven. By contrast, she said, “it is much more difficult for Jewish families to accept that there is no more treatment.” They are more likely to ask for experimental therapies for their child and less likely to sign a do-not-resuscitate order.
Taking spiritual beliefs into account is critical when discussing palliative care or developing an infrastructure for such care. These beliefs may influence factors such as whether patients prefer to die at home or in the hospital. Including clergy in the palliative care team is a relatively new approach but one that’s been shown to improve the quality of life of terminally ill cancer patients, “thus increasing the utilization of more ‘personal’ and less aggressive care at the end of life,” said Dr. Silbermann.
Another factor to consider in the Middle East and many developing nations, said Dr. Shad, is that strong family support systems are part of the culture of these nations. As a result, she said, there isn’t always a need for psychologists, psychiatrists, and social workers, and “you learn not to push social work and psychiatry on them, because they get it in a different form.” Rather, one should “understand what they have, and then try to fill in the holes.”
Bridging the Divide
MECC leaders are now working to introduce basic guidelines for palliative care in the Middle East. After 5 years of effort, the project is starting to bear fruit, said Dr. Silbermann. “It will be slow, because palliative care has a very profound cultural [and] religious element, and we have to take that into consideration.”
Approaching people in developing countries with a sense of humility and willingness to learn from them, as well as teach them, is critical for success, said Dr. Shad. “The [palliative care] initiative that MECC has undertaken is going to be a rewarding one, because, while you start with the Middle East, you can take that information and knowledge on how you did it to other developing countries as well.”
Lessons learned from other cultures can also be applied at home. “In spite of all the medical miracles that we can perform here, death still happens,” said Dr. Shad. “And maybe the understanding of that would help us face it better and deal with it better. There are some very simple things that could be done to improve a patient’s life. Things like spending time with them, making sure that there’s company around them, rather than relying exclusively on medication. We rely a lot on medication in the United States; there are many, many things in addition to medication that you can do to improve a patient’s quality of life.”