By Daniel Waters
Part Three of the Ethical and Religious Directives states that medical professionals and patients “enter into a relationship that requires, among other things, mutual respect, trust, honesty, and appropriate confidentiality. The resulting free exchange of information must avoid manipulation, intimidation, or condescension.”
Unfortunately, the medical establishment in the U.S. has a long history of the opposite of that relationship with African-Americans. As slaves, African-Americans were regularly subjected to medical uses of their bodies without consent. This included dead black bodies being robbed from graves for medical experimentation. In the Tuskegee syphilis experiment from 1932 to 1972, 399 African-American men were misled about their treatment for this awful disease. Henrietta Lacks was an African-American woman who was the source of an immortalized cell line used for research without her knowledge or consent.
For many in the African-American community, these stories are not simply history – they are the stories of today. The urgent presence of this discrimination leads to a fear that if an African-American is an organ donor, medical personnel will not try to save one’s life but will do nothing in an emergency, in order to “get another donor.” Although this may be true for anyone, the deep mistrust of the medical community heightens the fear around this issue.
There is a widespread thought that “my religion” will not allow organ donation. Tied in with this is that fear that if one donates an organ it will affect one’s status in the afterlife, i.e. if I do not leave this world “whole” I will never be “whole” for eternity. The reality is that most major religions either support organ donation as an unselfish act of supreme charity or that it is the decision of the individual and the denominational stance is completely neutral. Other troublesome myths are that the donation will go to white, wealthy or famous patients; that the donation will be sold; or that the donor will have to pay for the process.
Many in the African-American community experience mistrust, disrespect and lack of honesty with the medical community in general, including organ donation. As a white male blessed with an interracial marriage for almost 38 years (my wife is African-American), I have experienced positive attitudes toward the medical community in general and organ donation specifically from my parents and sibling. But I encounter the attitude described above from my in-laws and my wife’s siblings. My brother-in-law battled diabetes and kidney issues but adamantly refused any discussion of a kidney transplant. He refused an amputation when these issues worsened. He eventually agreed to an amputation, but only with my wife’s intervention. At the time of his death, one of the first questions his daughter asked was if the amputated part would be buried with him.
Research studies in 2001 and 2003 clearly indicate that traditional promotion campaigns will do little or nothing to increase organ donation in the African-American community. However, there are indications that a consistent supportive message from religious leaders can make a difference in participation. There is a high degree of trust in one’s religious leader. African-American physicians and educators who are willing to take the responsibility of dispelling fears seem to be able to make a difference in these numbers as well. The 2007 research article “Understanding the Role of Clergy in African American Organ and Tissue Donation Decision-Making” discusses the challenges and benefits of reaching out to religious leaders.
The need for organ donors remains high, and the need is often higher in the African-American population. An appeal to altruism from trusted sources can begin a slow but necessary process of change.
Daniel Waters, BCC, is manager of mission and spiritual care at Bon Secours Mercy Health St. Charles Hospital in Oregon, OH.
