Friday, November 27, 2009

Organ Donation and the Black Community.

I was at the most luscious Thanksgiving dinner last eve with some wonderful friends, old and new. At one point I was talking about my two book projects: a book about death in America; and a literary memoir about death grief and travel. Regarding the first, which I've only begun - and begun discussing - I received a comment I didn't expect from an African American lawyer in our company: the black community has long been wary of organ snatching from otherwise viable patients.

Wesley J. Smith, that font of pseudo-ethical "pro-life" banter, has been harping on the invasion of the organ snatchers for some time regarding end of life care and aid in dying. I've always poo-poohed it as hokum. Turns out the issue has legs, or shall I say guts, depending on who you're talking to. (I never cease to be amazed by the fears my white privilege has shielded me from!)

Today I've dug up a couple of interesting facts and studies regarding blacks and minorities and their views of medicine and organ donation. It seems that Smith, the evil genius, may have found yet another thread of fear in society on which to prey.

Here are some spooky myths, debunked by the Life Goes On Organ and Tissue Donation group in Illinois:

Myths About Organ Donation

MYTH: If I am in an accident and the hospital knows that I want to be a donor, the doctors will let me die.

FACT: Donation is not considered until all efforts to save a person have failed. Additionally, transplant surgeons and their staff are, by law, forbidden from taking part in a patient's care prior to organ donation. They only become involved after the person is declared dead and permission has been given by the family for organ donation.

MYTH: Whites are helped more than blacks.

FACT: Absolutely not. In fact, nine out of ten African-Americans who undergo organ transplant surgery receive an organ from a Caucasian donor. In addition, a computer system fairly matches organs with recipients' based on the recipients' time on an organ waiting list, the severity of the recipients' condition, blood type, size of the donated organ and, in some cases, the donor's genetic make-up.

MYTH: Wealthy and famous people are able to buy their way to a higher spot on waiting lists. Take Mickey Mantle for example. A match was found for him within days of being put on the waiting list.

FACT: Anyone who needs an organ transplant is eligible for one, but you cannot buy a higher spot on waiting lists. Mickey Mantle got his transplant so quickly because his blood type was the most common and because he was among the sickest patients waiting in his area.

MYTH: As African-American organ donors, our organs will go to white folks and never other African-Americans.

FACT: If you donate an organ, such as a kidney, for which genetic make-up is a critical factor in transplantation, then it is probable, though not guaranteed, that your organ will go to another African-American. In addition, African-Americans make up 36 percent of those on organ waiting lists in Illinois. Therefore, even if you don't donate an organ that needs to be genetically matched, the recipient may still be an African-American.

MYTH: African-American organ donors aren't necessarily needed.

FACT: African-Americans make up 36 percent of those on waiting lists in Illinois. Everyone on the waiting lists can benefit from more organ donors. However, African-Americans on waiting lists for kidneys will most likely benefit from African-American donors, because transplantation often is enhanced by matching organs between members of the same ethnic and racial groups.

In our recent survey, we found that white persons were significantly more likely than African- American persons to be unequivocally willing to donate their own organs (69.7% compared with 56.3%) and a relative’s organs (43.5% compared with 33.9%). To a surprising degree, this difference reflected concerns of African-American persons about knowing a relative’s wishes before agreeing to donation. Fully 36.3% of African-American persons would agree to donate a relative’s organs if they knew the relative’s wishes beforehand. In fact, if we combine those persons who would be willing to donate unequivocally with those who would do so if that were their family member’s wish, we find that the differences between white and African-American respondents nearly disappear; 73.7% of white re- spondents and 70.2% of African-American respon- dents would donate. Finally, this study found that African-American persons were less likely than white persons to have discussed their wishes about donation with their families (42.4% compared with 58.2%). This may partly explain lower rates of con- sent to donation by African-American families (Siminoff LA. African American perspectives on or- gan donation [Presented paper]. Fourth Interna- tional Society for Organ Donation Congress. 11 July 1997; Washington, DC). The current campaign to encourage persons to talk with their families about organ donation will probably be especially effective.

Or not, depending on the nature of the campaign.

Third, we believe that the negative opinions of African-American persons about cadaveric organ donation reflect a deeper distrust of the medical system. These perceptions are not directed specifi- cally at organ donation and transplantation; rather, they must be seen as part of the distrust that de- velops among persons who have been subjected to institutionalized racism and to a system that may unconsciously continue to reify the racism of the larger society—for example, the African-American experience as medical subjects in the antebellum South and in the Tuskegee Syphilis Study and as victims of exploitation after the Civil War. More- over, a growing number of recent studies have shown that African-American persons are still less likely to receive the full benefits of the health care system (16).

From another study in 2007:

Having been skeptical about organ donation in the past, I was riveted by the original communica- tion entitled “Many Facets of Reluctance: African Americans and the Decision (Not) to Donate Organs.”1 The study participants were 310 adult members of a New Jersey chapter of the NAACP. The results suggested that a decreased knowledge base about lung trans- plantation, a desire to maintain the integrity of the body, lack of trust of the medical community, and spiri- tuality all played a role in the deci- sion to donate organs.

And from the Mayo Clinic regarding the lack of matching donated organs among minority groups:

Being an organ donor can make a big difference, and not just to one person. By donating your organs after you die, you can save or improve as many as 50 lives. And many families who have lost a loved one who became an organ donor say that knowing their loved one helped save other lives helps them cope with their loss.

It's especially important to consider becoming an organ donor if you belong to an ethnic minority. Minorities including African-Americans, Asians and Pacific Islanders, Native Americans and Hispanics are more likely than whites to have certain chronic conditions that affect the kidney, heart, lung, pancreas and liver. Certain blood types are more prevalent in ethnic minority populations. Because matching blood type is necessary for transplants, the need for minority donor organs is especially high.

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