Considering Culture When Providing Cancer Care

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 NCIs 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. Harfords 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 consortiums 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.

Overcoming Cultural Taboos

Much of the initial focus in the MECC palliative care project has been on end-of-life care,
because thats 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 its not really a cultural barrier, its 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 kidsdont 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 dont tell the truth, Dr. Ben-Arush explained, the child will lose his belief in the
staff, and he wont cooperate any moreand 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 wont find the way to help the children have a peaceful end of
life.
To help care for patients from diverse cultures, Dr. Ben-Arushs 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 its 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 thats 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
isnt 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 patients life. Things like spending time with them,
making sure that theres 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 patients quality of life.
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http://www.cancer.gov/ncicancerbulletin/113010/page6