I don't post very much here, only when something really bothers me. This particular case has bothered me from the start, not only because it is very emotional (what's not emotional about a 13 year old girl unexpectedly dying after surgery?) but because so much invective has been hurled from both sides, much of it by people who have little information or who have axes to grind, some of it by people with serious agendas (the religious vs. the atheists, the fat-shamers, the outright racists, etc.), and much of it by people who have never been placed in anything like the position Jahi McMath's family was put in.
I am fairly recently retired from a career in nursing, much of it spent in the critical care area, either ICU or stepdown. I have cared for patients whose surgeries have gone wrong; I have cared for patients who are being kept alive only by machines, some of whom are to be organ donors; I have cared for patients whose families insist that "everything" should be done even in the face of facts that nothing will help, and patents whose families know when death is no longer an enemy. BUT…..even though I have cared for patients of many races, I had never thought of this until I read this piece today. I realize it is one person's opinion, but that person speaks from the perspective of another race and culture that I am not part of. Because of copyright, I cannot reproduce the entire article, however will link to it and probably quote briefly from it.
I did not personally realize the extent to which African-Americans perceive end of life care differently from white Americans, and it seems it is tied to the historical treatment, or lack of same, by the medical community. Quoting from the article:
"The reality is that African-Americans are aware of the often limited value of black life in the United States, Roberts said. In early America, the value of African-American life was typically defined by what sort of loss their death or injury would cause a slave owner, said Roberts, who studies race and bioethics.
"Some of the country's earliest human experiments were conducted on enslaved black women. Beginning in the 1930s, government-funded researchers withheld treatment from patients suffering from syphilis to study the disease's effects. And until the 1970s, several states maintained programs that forced poor, disabled and African-American women to undergo sterilizations.
"In 2002 the Institute of Medicine found that African-American patients are more likely to receive undesirable medical treatments, such as lower-limb amputations, and less likely to receive lifesaving cardiac bypass treatment, dialysis and other treatments than white patients with the same health challenges, insurance status, income and age.
"Typically juries award smaller amounts of money to families of black victims in wrongful death and other injury claims, Roberts said, as if a black life has less value.
"And a study published in the journal Pediatrics late last year found that black and Hispanic children were substantially less likely to receive medication to relieve pain than white children who came to the hospital in serious distress. The study reviewed records detailing the treatment received by nearly 2,300 young patients."
When you look at that sort of history, it might be a little easier to understand where Jahi's family is coming from. That's a little more realistic than automatically branding their position, as so many have, as being (again quoting) "connected to scientific ignorance, irrational combativeness and superstition."
When I have discussed this story with others, I have from the beginning argued on the side of compassion and understanding for the family. Most generally my argument fell on deaf ears. Sometimes i got blasted. I was arguing from the nurse's side. Here's an argument from another side. Make of it what you will.
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