Your life should not depend on your ability to understand the doctor's written instructions.
For the 21,375 Hispanics in this country on the organ transplant waiting list, the language and cultural barriers to staying alive appear insurmountable. Every 10 minutes a new patient is added to the waiting list in this country.
Simply not having a Spanish-speaking health care provider answering critical care questions can mean a patient will suffer and likely die. This is a problem getting bigger every day.
While April is National Donate Life Month, and many are dedicated to raising awareness, the problem is ongoing for many Hispanic patients every month of the year.
According to a Centers for Disease Control report earlier this year, Hispanics are 1.5 times as likely as non-Hispanic whites to develop end stage renal disease. Based on the 2013 annual data report of the United States Renal Data system, the growth of new Hispanic patients with end stage renal disease between 1996 and 2011 was 95 percent, compared to 45 percent in non-Hispanics in the same period of time.
The alarming problem of end stage renal disease in Hispanics is dramatically increasing because they are more frequently affected by diabetes and high blood pressure, the leading causes of chronic kidney disease. And chronic kidney disease may necessitate a kidney transplant.
The largest percentage, or nearly 86 percent, of Hispanics on the transplant waiting list are waiting for a kidney donation, according to The Office of Minority Health at the Dept. of Health and Human Services. Of the 121,179 people in the United States on the waiting list for organ donation, nearly 20 percent are Hispanic/Latino.
Health care is a priority for President Barack Obama, as he reasserted in his recent State of The Union address, highlighting his conviction that equal access to health care is a right and a necessity for all Americans. But unfortunately, health care access and outcomes are not equal for all Americans.
It is important to keep in mind that Hispanics are the largest minority with the fastest growth in United States -- 43 percent compared to 4.9 percent of non-Hispanics between 2000 and 2010, based on the 2010 U.S. Census Bureau data. The 2012 census data shows that there are 53 million Hispanics in this country, making it the country's largest ethnic minority.
My colleagues at Northwestern recently announced new strategies at the American Association for the Advancement of Science conference to increase organ availability by addressing the disparities across geography of organ distribution. These new tools are extraordinarily helpful. Still, the cultural and language gaps remain for Hispanics in need of organ transplantation.
For those individuals, and for those who are not yet in the organ transplant waiting list, simple and life-threatening linguistic and cultural differences have not been properly addressed for most of the transplant programs in this country. What it could mean is many people may die as a result of a problem that can easily be remedied.
More than three-fourths of Hispanics prefer to speak Spanish at home and likely would prefer to talk in Spanish when there are life-threatening situations such as a chronic kidney failure for themselves or a family member.
English-speaking, non-Hispanic whites probably do not realize how stressful the language barrier could be when you do not understand medical issues. This is not only because of the medical jargon but also because of the low English proficiency. Together those factors could exponentially increase the anxiety and fear of this life-threatening and frightening medical condition.
The traditional standard of care probably in most institutions is to provide medical care in English. To remedy the lack of culturally sensitive health providers; they use Spanish interpreters for Hispanic patients with low English proficiency. A language interpreter is not necessarily the best alternative for an optimal patient physician communication.
In the end, this can affect the medical outcome. It is not uncommon to find in the medical literature comments related to how Hispanics do not follow medical recommendations. The fact is the patient probably did not understand the medical provider due to the language and cultural barriers.
"M.D." means "medical doctor" in English, but sometimes for Spanish-speaking Hispanic patients, "M.D." could mean "Medio Dios," or half-god. Hispanics respect deeply the physician recommendations and probably will follow the doctor's medical advice -- if only they understood him or her.
I understand very well the cultural and linguistic barriers that a non-English-speaking or low-proficient English-speaking Hispanic may suffer when facing the American medical environment. I am an Hispanic surgeon from Colombia, South America who came to the United States to get the best possible transplant surgery training. I was lucky enough to be accepted to the Northwestern University Comprehensive Transplant Center -- one of the best transplant programs in the country.
However, I experienced all the difficulties related to differences in language and culture when I started my training. I saw also how Hispanics patients were suffering due to the lack of culturally and linguistically tailored medical care. I completed a comprehensive training in adult /pediatric transplant surgery including a thorough training in living kidney and liver donor surgery. I perform kidney, pancreas, liver, intestine transplant and minimally invasive kidney and liver donor surgeries.
As director of the first comprehensive Hispanic transplant program in the country, most of our 20 health care providers on our team are bilingual (speaking Spanish/English) and bicultural (most are Hispanics who understand the American culture).
Part of our experience and research has shown how Hispanics prefer to receive their medical care in Spanish, and prefer to receive the medical education from physicians in a group format. For Hispanic patients, this creates a better, more relaxed and trustworthy environment for them compared to the one-on-one education provided by non-physicians. Also, Hispanics prefer to be with their families (including elders) to help them with health care decision-making and support during their medical care.
As they have big families, there could be more potential donors and they will be more likely to move forward if they receive the blessing of their older relatives who may have faith concerns. These patients and family members need to know that most religions (including the Catholic Church) are in favor of organ donation.
Some people may think that those cultural differences in preferences can constitute disadvantages for Hispanics. But in fact these differences may become strong advantages when you approach Hispanics regarding living kidney donation. These cultural factors may actually increase living kidney donation in Hispanics if the programs approach them in a culturally sensitive manner.
Hispanics have lower living kidney donation compared with non-Hispanics whites in the United States. Living donor kidney transplantation is the best option of treatment for patients with end stage renal disease and provides the best patient survival associated with the best quality of life compare to patients staying on dialysis.
There are multiple possible explanations for this, including but not limited to less knowledge and a negative attitude toward living donation, donation myths, fear of donation process and coverage issues.
We have seen how addressing the cultural and linguistic Hispanic differences has afforded a positive increase in the number and proportion of living donor kidney transplantation in Hispanics in our center.
Now the proportion of Hispanics receiving a living donor kidney transplant is larger than non-Hispanic whites, Asian and African-Americans. The growth of the Hispanic Transplant Program at Northwestern Memorial Hospital has been instrumental in making the living donor kidney transplant program one of the two largest in the country.
Although there is limited research in this field, more is needed to decrease the gap between Hispanics and non-Hispanic whites regarding living kidney donation.
It would be ideal to have more cultural-competent kidney transplant programs in the country. A scarcity of information is available online. Some kidney transplant programs do not provide much information available for Hispanic patients searching for help online. Based on our research, we have seen how the quality of the information on the Internet regarding living kidney donation is suboptimal. More reliable online information is needed targeting Hispanics.
After a Web search recently of the 52 biggest kidney transplant centers (centers performing more than 100 kidney transplant in 2012), 73 percent of them have at least one Spanish speaking, bilingual transplant surgeon or nephrologist. Fifty-six percent of those centers have at least one bilingual, bicultural, Hispanic transplant physician.
This type of culturally and linguistically tailored kidney transplant program is possible to develop and expand in this country. At these kidney transplant centers, it would be noteworthy if a culturally sensitive approach can nationally increase living kidney donation and help and save more Hispanics with end stage renal disease.
After all, saving lives and improving outcomes means success in any language.