Cultural barriers: the cause of lower donor rates in the u.s.a. among minorities

When I was 12 years old, I found myself standing in the ICU of Stanford Medical Center. My father, the man who had always been the picture of health, was lying in a hospital bed, frail, bony, a shell of his former self. Within 5 months he had gone from perfectly healthy to suffering from viral idiopathic cardiomyopathy and was in desperate need of a new heart. Miraculously, one week after being put on the transplant list, he received the gift of life—a new heart—and made a speedy recovery. However, very few people are as lucky as my father. Tragically, “ more than 123, 000 men, women, and children currently need lifesaving organ transplants” and “ an average of 21 people die each day because the organs they need are not donated in time” (Donate Life America).

As the granddaughter of Chinese immigrants, if you were to ask me about my feelings on organ donation, I would be undoubtedly supportive and I have even acted as an organ donation educator and advocate in the past. However, my views are not necessarily representative of the Chinese American population as a whole. Minority groups in the United States, in particular, Asian Americans are reluctant to consent to organ donation. In a study performed by the Agency for Healthcare Research and Quality, consent was significantly more likely to be obtained from white patients (77. 0 percent), compared to Hispanics (67. 5 percent), “ other races” (59. 0 percent), blacks (54. 9 percent), and Asians (48. 1 percent). This is most unfortunate as it is well established that “ cadaveric kidney survival is improved when the donor and recipient are of the same race” (Cheung 3609). In a random sample of 2, 000 households in an urban county of a Western state in the United States, only 2. 8% of Asian Americans saw lack of organ donation knowledge as a major obstacle to donation (Cheung 3609). *Note: I would like to insert a quote from Deanna Santana at Sierra Donor Services that speaks to how Asian Americans and Chinese Americans receive a similar organ donation education, but our interview will be happening later on this week.* As it appears that organ donation education is similar amongst all segments of the American population, regardless of racial status, it is plausible that cultural beliefs are the main obstacles to Chinese Americans in deciding whether or not to donate their organs.

Traditional Chinese thought based on Confucianism holds that “ body, hair, and skin are gifts from parents, let no one damage them” (Tai 453). In other words, Confucian teaching maintains that one is born with a complete body and should arrive at death, in the same way, with a complete body. This view was repeatedly expressed when I interviewed first generation Chinese immigrant grandparents (Lau, Stephen Tso). During these interviews, participants noted that while they believed organ donation was a noble thing to do, which aligns with the Confucian teaching: “ the man of Jen is one who desiring to sustain himself, sustain others,” respect and duty to one’s parents to keep the body in one piece is of primary concern. The argument goes that a person who mutilates the body given to him by his parents is not seen as “ a man of humanity” would “ never seek to live at the expense of injuring humanity,” as a man who disrespects his parents is seen as one who disrespects humanity as a whole (Tai 454). Tending to be more allocentric, Asian Americans may focus more on helping people within their families and less comfortable with donating organs to the general public. In contrast, relatively more idiocentric, white Americans may focus more on obligations to the community as a whole and therefore may be more comfortable with organ donation to the general public (which is reflected in their high donation rate) (Alden, Cheung 297). In a 2006 study conducted among Chinese University students, 47. 4% of the people who objected to organ donation listed their primary concern as “ maintain[ing] body integrity” and 28. 2% listed their primary concern as “ no permission from family” (Chen, Zhang, Lim, Wu, Lei, Yeong, Xia 2763).

Taoism, another central belief system for traditional Chinese, also argues against organ donation. According to the concept of wu-wei, one should not do anything that is contrary to spontaneous flow of nature and if dying is a natural process, a practice that reverses the course of dying, which is natural and nonspontaneous in itself, should not be supported (Tai 454). More importantly, Taoism is a religion that believes the afterlife is another form of life in which food, drink, clothing, and money are needed. For instance, traditionally when a Chinese family pays respect to passed loved ones, they burn paper clothes and money, as well as leave pastries and tea out because their ancestors need these things to “ survive” in the afterlife (Kinson Tso, Victoria Tso). As expressed by first generation immigrants and their children who were interviewed, many Chinese believe that any damage to the body during life on earth will impede the body’s ability to function in the afterlife (Elaine Lau, Eugene Lau, Stephen Tso, Victoria Tso). On the other hand, although this argument is not often made among the Chinese, Taoism could also hold donating organs as a natural and spontaneous phenomenon. If love is a natural expression of life, donating one’s organ for the sake of sustaining another life should not be opposed. However, one is likely to love their family members the most. And with the Chinese belief that duty to family trumps duty to oneself, it is plausible that many Chinese Americans are not opposed to the idea of donating an organ to save a loved one, regardless of how this affects their being in the afterlife. *Note: I would like to include further research on how Chinese Americans view donating organs to their family members. Also rework the following statistic: In a study performed in Hong Kong, the gamma coefficient of people who were not willing to donate organs to a stranger was -. 665 (Yeung, Hong, Lee 1650).*

Finally, Buddhism is the last major religion that influences Chinese thought. The first of the Four Noble Truths is that “ all life is suffering.” Therefore, prolonging someone’s life through organ transplantation is pointless as this continuation of life is just continuation of suffering. One cannot conquer death through organ transplantation, but only by reaching a spiritual enlightenment called nirvana (Tai 455). It is interesting to note that interviewees whose parents were immigrants, still retained some Buddhist beliefs of rebirth and karma. However, this philosophy was also blended with western ideals of the soul and body being separate entities.

It is most interesting to note that people from the following groups were interviewed: Chinese immigrants to the United States about 70 years of age, first generation children of immigrants from 40 to 50 years of age who think of themselves as both Chinese and American, and lastly, 18 and 19 year old students who consider themselves both Chinese and American.

The sentiments seemed to be similar within each group, with oldest people holding the most orthodox of Chinese Confucius, Taoist, and Buddhist beliefs; the middle-aged people feeling conflicted over the traditional Chinese beliefs pushed on them by their parents and by feelings of tradition and the western, traditionally Christian values that American society pushed on them; and the youngest generation whether from China or born in the United States, most likely to think of the body and soul as separate entities.

There is a Buddhist legend that tells the story of a man who encounters two ghosts, one ghost who likes him and another who does not. The ghost who does not like him tears him apart limb by limb, but the ghost that likes him puts in back together using pieces from a dead body. The man then looks at his newly constructed body and says “ Who am I? Many of my bodies are from someone else, am I still whom I was?” (Tai 453). This tale poses the interesting question: Did the person who received a transplanted heart, liver, or kidney remain the same person as before? According to interviewees of an older generation, the answer is no. If your body is made up of gifts given to you by your parents are your identity is built upon familial ties, you are giving up a part of your identity as you give up part of your body. *Note: Should I add a statistic that shows how more percentage of Chinese are willing to accept an organ if they needed it than those who would donate an organ?*

Another reason for such low organ donation rates among Chinese Americans includes the lack of conversation on the matter. As displayed by the hesitancy of the interviewees to speak on the topic of death and beliefs on the afterlife, death is simply a taboo conversation. Many people simply do not have conversations with their families about donating their organs should they ever be pronounced braindead. This also serves as an obstacle to the organ donation process as the decision to donate organs from those who are pronounced braindead but have registered goes to the immediate family members.

The role of acculturation was obvious was conducting this mini-ethnography. For instance, the 18 to 19 year-old Chinese Americans interviewed were more likely to think of the body and soul as a dual system. It was clear how western Christian ideals had largely taken the place of the traditional Chinese beliefs of their parents and grandparents. This younger generation seems to believe that the body will simply decay upon burial and that what happens to one’s body on earth does not affects one’s situation in the afterlife; the soul simply goes to heaven, hell, or purgatory and can do without the vehicular earthly body (Hong, Lin, Wang).

The children of Chinese immigrants in the age group 40 to 50 years of age were more likely to hold hybrid Chinese-American beliefs. Multiple interviewees admitted that while donation was “ noble,” they still were not still were not sure if they would donate themselves or if they approve of their children donating. However, they struggled, having been brought up with both western and Chinese ideals in telling me if they believed that what happens to the body during one’s life on earth affects one’s being in the afterlife. They tended to lean towards believing that body and soul were separate entities and that the body was a vehicle for the soul—a very western, Christianized ideal. Some interviewees of this age group echoed their immigrant parents: their body would not be complete in the afterlife if their bodies were not complete during their time on earth. *Note: may want to include current westernized views of young adults directly from China and how their views are different from their grandparents.*

Increasing minority donor rates is of utmost important to organ donation advocates. As organ donation among racial groups is generally uniform, cultural differences may be the cause of the lower donor rates among minorities, in particular Chinese Americans. Organ donation advocates ask the question: how do we maneuver around these Chinese cultural barriers? To be frank, the answer might be nothing. The young, more Americanized generation of Chinese Americans appear to be very supportive of organ donation as a modern feat of medicine that saves lives and contributes to the public good (Hong, Lin, Wang). As the process of acculturation takes it natural course, it is likely that organ donation will gain more popularity among Chinese Americans.