<p>zoosermom, That’s an interesting commentary and I can understand the families’ initial possible mistrust. That does not account for the lawyer though and really also does not account for the uncle at this point (who has had access to very detailed info documenting clear deterioration). I truly don’t know what the answer is if there is such a level of distrust that a family does not believe the scientific evidence presented. And the evidence here is extremely compelling.</p>
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I wasn’t trying to account for anything, but a co-worker sent that to me and I thought folks here would be interested.</p>
<p>I don’t (obviously) know where other people live/work, but my office is pretty diverse and the conversation among my black co-workers has been very, very interesting to hear. I do think that sometimes there is a cultural component to an issue that may not be readily apparent.</p>
<p>I wasn’t suggesting you needed to account for anything. I do understand there can be cultural differences with things. No easy answers and as I said I truly don’t know what else can be done here or in future situations.</p>
<p>I can’t even begin to imagine what can be done to resolve this one. It’s like a horror movie.</p>
<p>But if we are going to talk about end of life issues, we should definitely consider cultural context.</p>
<p>For the medical people here, do you get much diversity training in dealing with patients of different races, ethnicities, gender, cultures? My husband is an engineer, not a medical person, but his workplace routinely holds diversity training . I’m guessing hospitals have regular training in diversity issues, communicating with families, etc?</p>
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This is pretty much what I think about this as well. Another way of putting this would be: “How long must a hospital maintain life support for a patient declared brain dead if the family insists?” It seems to me that it is reasonable to require the hospital to do so long enough to get an independent opinion on brain death. After that, I think it should be some very limited amount of time to allow the family to transfer the person to another facility at its own expense–and the family should also have to post a bond for the cost of the care until transfer.</p>
<p>I also think there may be cases in which it may be more reasonable to do everything possible to keep a brain dead person “alive” for as long as possible–although the only situation I can think of is when everybody agrees to do so in the case of a pregnant women when the fetus may survive if she’s kept going long enough. I don’t know too much about it, but my understanding is that this takes Herculean efforts–which I’m pretty sure were not taken for Jahi by the hospital already.</p>
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I agree with that. As part of this public conversation, I think that such a time period should be determinated and communicated. In NY State, the regulations call for “reasonable accommodation” of religious and moral considerations. In my opinion, that is too broad and in a contested situation would lead right back to the court.</p>
<p>On Piers Morgan, the ethicist made a point of saying that you cannot start letting families decide whether or not a family member is dead. It is a medical and legal determination. He said something to the effect that families cannot be objective when it comes to death and you would have many people who just would not let go if they were the ones to be allowed to make the determination.</p>
<p>As for medical training and diversity issues: I personally trained in a large inner city major metropolitan area so needless to say, the patient population was extremely diverse. I do not recall any particular training, but hands on learning from exposure to long time experienced nurses, translators etc. was invaluable. There is no question that cultural background has to be taken into account; all should be treated with utmost respect and compassion, but the actual approach, vocab used, demonstrating with diagrams if necessary, showing xray/lab results etc. can be quite valuable.</p>
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<p>Which raises an interesting question: if it’s up to the family to decide when the patient is dead, what happens when the family insists Aunt Aggie, who’s had a stroke, is dead and should have her oxygen removed despite assurances from medical professionals that she’s aware of her surrounding but simply can’t show it through movement?</p>
<p>On Piers Morgan last night the uncle was asked why they believed she was still alive. He replied, “The most compelling evidence is that she is moving more.” What? Compelling evidence is not the wording one would expect from a grieving uncle. He also cried on cue after a day of doing the talk show circuit. Interesting.</p>
<p>Do you all remember how Elle Woods won the case in Legally Blonde. All of the lead lawyers were hung up on details when she got the alleged lover to admit he was gay by wearing designer shoes. He commented on her footwear. Case closed.</p>
<p>Sometimes it’s the little things. No disrespect intended. Back to work.</p>
<p>Of course cultural background has to be taken into account, but a lot of this dialogue sounds like - well, if CHO had only used smaller words and given the family more hugs, they would have understood the medical implications better and the whole mess averted. As someone said upthread, other low-information people have been treated at this hospital and some of those low-information people have died, and their families at least understood that what the doctors were saying was the truth, no matter how heart-wrenching. This is a family that didn’t want to understand, that chose not to believe. You can’t reason with someone who doesn’t want to be reasoned with.</p>
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<p>You can all google Lazarus sign as well as I can. This is precisely what I mean by low-information. A gaggle of neurologists could stand in front of this guy and say - I know it looks as though she’s moving and it makes you think that “she’s in there” deliberately wiggling her limbs, but in point of fact it’s just a reflex – here, here’s some video of patients in similar circumstances who are quite dead but appear to be moving. He won’t care. No nuance, no willingness to accept that there are areas in which the experts know more than you.</p>
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That’s not what I’m saying at all. I’m not even talking about the family here, specifically. I’m saying that I think this is a national conversation we should be having, including being open about how the nation’s past history has influenced current perceptions. To avoid this in the future. Having medical and legal experts who don’t understand the people they are dealing with isn’t a recipe for good legislation. I think the surveys referenced in the opinion piece I posted were very enlightening and brought light to an important issue.</p>
<p>I wonder if this whole situation may have been sparked by somebody mentioning organ donation to the family. It may not have been “the hospital” (or hospital policy) but some particular person who wasn’t as sensitive as he or she might have been.</p>
<p>Or it could have been someone who was appropriately sensitive. (“I know that Jahi’s passing is very difficult for you right now; it’s understandable that you are completely devastated. Some other parents who have been in your shoes have gotten great comfort from knowing that their child’s organs might help another child to live, and in that way her spirit can live on. Is that something of interest to you?”) And the family still could have reacted that way. I keep feeling that we’re trying to come up with “if only these magic words had been spoken” and I keep feeling that this family was going to react the way they were no matter how culturally sensitive or kind anyone was.</p>
<p>If there is any truth to the family’s story that the bleeding crisis occurred and help wasn’t immediately available, that could have done it.</p>
<p>Also, my husband is fat and my best friend was 400 pounds at one time. I have seen all sorts of examples of disrespect directed at them and other fat people pretty regularly. If for any reason the family felt disrespected (and my point was that it does happen a lot), then they weren’t necessarily going to be open to reasonable communication. As I said earler and I adamantly stand by this, it is not uncommon for very well educated, affluent people to be condescending to and dimissive of people who have less education and resources.</p>
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But it is still a much bigger issue than just this family and the Pew numbers show that. It is also not just a matter of cultural sensitivity, either, it’s an important matter of making laws and regulations crystal clear.</p>
<p>But the laws re: brain death ARE already crystal clear. The family (and their lawyer) just refuse to accept it.</p>
<p>I don’t understand how you get mad at a hospital whatever mean things someone in there says to offend you. I have had relatives the hospital in near death situations and I don’t remember one doctor or nurse. They were a blur of people in white coats who I hoped wouldn’t be delivering bad news. There was nothing personal. There was no relationship. My focus was entirely on my loved one. They could have started calling me names and it would have gone in one ear and out the other. No, understanding this is getting to be impossible.</p>