Peter Yu, MD
27 May 2012 6:15 PM
The human aspects of cancer care and the belief that it is within our power to alleviate suffering and provide succor, while advancing towards a cure, is what drives us each day to do what needs to be done. It is the connection to humanity that transcends and transforms health information technology.
Recently, Eric Vinson, a Cherokee Indian working at the Northwest Tribal Comprehensive Cancer Program, contacted me to learn what resources the American Society of Clinical Oncology Health Information Technology Work Group had to support cancer survivors among the American Indian and Alaskan Native populations. It brought back to me the experiences I had in medical school when I worked for a month at a remote Indian Health Service site in the Four Corners region of Arizona that cared for the Hopi Tribe and Navajo Nation. One night a pregnant woman in labor was showing signs of fetal distress. A decision was made to risk an emergency flight to the regional hospital in Tuba City and the pilot was called out. We took off in darkness from a dirt airfield in a propeller plane and when we landed it was the opening scene from MASH, with nurses running out onto the tarmac with a gurney. The baby delivered about 60 seconds after landing. One can see how Native Americans who receive their care at a cancer center far from their home will have difficulty obtaining survivorship care when they return home.
Discussing this with Eric, I became aware of the semantic meaning of the word “cancer” in the Navajo language:
“Beginning in the Fall of 2006, Navajo Cancer Glossary 'working group' meetings were held on nearly a monthly basis at the Shiprock, New Mexico, campus of Diné College. The original thinking was that this resource would be focused for use among the Navajo public, but participating Navajo professionals advocated that a resource of this nature was also critically needed by clinicians and educators due to the facts that: (a) there had never been a standardization and codification of cancer terminology in the Navajo language, and further that (b) existing commonly used translations in the Navajo language, which had become entrenched after decades of use, were both inaccurate and misleading. The most notable example is that the most commonly used translation in Navajo for “cancer” is [óód doo nádziihii or “the sore that does not heal.” This is not only technically inaccurate but it also tends to defeat the goals of screening and early detection and treatment, and tends to foster a fatalistic attitude that nothing can be done for the Navajo patient diagnosed with cancer."
The power of language is a skill we believe unique to humans and is culturally embedded with meaning that reflects societal concepts and values. Somehow, that richness needs to be preserved when we transform language into digital code.
Last week, I had the opportunity to speak with a group of Chinese volunteers for the American Cancer Society (ACS) Chinese Unit. These volunteers form a unique unit within ACS, the only one dedicated to an ethnic community, as opposed to a community defined by geography. The vegetarian lunch was provided by the Tzu Chi Foundation, a Buddhist organization dedicated to health care, charity, education, and respect for culture. Curious about this group, I went to their website to learn more about them and found the following parable about why bad things such as cancer happen to good people.
During the Tang Dynasty (618-907 AD), a monk named Zhixuan came upon an older monk covered with non-healing sores and with compassion, attended to him until he recovered. The ill monk, actually a deity in disguise, instructed Zhixaun to visit him on Jiulong Mountain should he ever need help. Zhixuan went on to become a monk so renown for his virtue that the Emperor Yizong proclaimed him the Imperial Dhama Master Wu-Da and presented him with a magnificent sandalwood throne. At that moment, Zhixuan experienced the arrogance of pride and stumbling against the throne, he developed a non-healing sore that inflicted great pain. Curiously, the sore was shaped like a human face. Traveling to Juilong Mountain, he was received by the monk he had helped many years earlier and was given treatment with healing waters. But before the sore was healed, it spoke explaining that the wound was retribution for a sin committed 10 lives earlier but not evoked until Zhixuan became vulnerable by lapsing into a non-virtuous state. Anticipating this day, the deity had intervened.
Today is Pentecost Sunday in the Christian faith, the end of the Easter Season and 50 days after Passover. On this day the Holy Spirit gave the Apostles the gift of tongues, enabling them to speak such that all heard in their native languages and understood.
The semantic meaning of cancer—sores that do not heal and sores that speak to reveal truths—and the power of communication across languages and cultural barriers—these cultural beliefs that span centuries and oceans—tell us something about the human side of communication and its primal importance to us.
So how do I connect this to health care and informatics? Of the five overarching goals of Meaningful Use, the most transformative is the Engagement of Patients and Families. Communication in a culturally sensitive manner that respects patient preferences and values forms the basis for a cancer journey that follows the best possible trajectory. The proposed Stage 2 Meaningful Use criteria includes one that requires 10% of patients to use the electronic health record to review test results or to communicate with their provider. Yet most of organized medicine has written to CMS asking to have this criteria removed on the grounds that physicians and other providers should not be made responsible for the actions or lack thereof of their patients. If we once again fail to accept our role as leaders, teachers and guides to our patients, we once again relinquish a piece of our moral high ground for the sake of short-term advantage. It is shortsighted to oppose this; 10% is a low bar to jump over. Meaningful Use is not a meaningless government mandate without purpose. We risk ending up where we will not want to be if we fail to keep focus on where our destination lies.]