1. That “families” can (and should) define death, not doctors
2. That brain death is just another kind of brain damage, and is like a deep coma
3. That brain death is not true death, and there is reasonable hope for the brain to “recover” as long as the heart beats
4. That families have the “right” to determine if or when somatic support can be withdrawn
5. That families can recruit the public for the purpose of protesting and civil disobedience over the diagnosis of death, and can coerce the courts into making exceptions to well established law
6. That families may lawfully engage in harassment of medical professionals
7. That families may recruit others to engage in harassment and interference with the function of a hospital, and the rights of other families and patients
8. That it is “okay”, and even commendable, to act on personally held beliefs that are in direct opposition to laws.
Basically, this case has demonstrated, and continues to demonstrate to the public, that it is okay to disregard established law regarding when and how someone is declared dead. And that public protests and disruptions in and on the grounds of a hospital, and targeted and recruited harassment of the staff, produce an atmosphere designed to force exceptions to law and procedures. This family has been “rewarded” with donations, given an “award” for their behavior, been given numerous exceptions not available to other families, and have publicity and pseudo celebrity status.
That may sound harsh, but the compassion that was extended to them by the judge, hospital, and doctors has now created an example others will likely emulate. Consider the implications of that. If you don’t like a diagnosis, just march, protest, harass, coerce, and threaten until you get “your” way. That’s how I see this unfolding, and my colleagues do as well. Granted, as health professionals we have a unique perspective.
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If Jahi had been removed from the ventilator in early December, like any other brain dead patient, NW would be home and available to parent her living children, helping them cope with the loss of their sister. Not carrying out a months- long, sad and angry vigil sitting next to her daughter’s brain dead body, desperately clinging to false hope. And worried about nail polish and hair styles for her daughter’s body. Those public comments, IMO, indicate how deep her denial is. She is in serious need of intense psychiatric care, IMO.
I agree that cases like this are very dangerous in terms of calling attention to exactly the wrong issues and baiting public outrage based on ignorance. But I also don't think it is settled that families don't have the right to do some of these things. I may strongly dislike the fact that they do, but it's such a new issue that it really is not settled, and honestly the law is never settled.
I was reading a case for work the other day involving a man who had a massive stroke - he was not brain dead, but he had lost all cognition and a lot of his brain was destroyed. His wife wanted to remove his feeding tube, so it was like Terri Schiavo, except he had even less "activity" than she did, and there wasn't a big fight going on - his relatives agreed.
The doctors refused, and the court allowed the wife to remove him to a hospital that was willing. This was one of the first such cases in the 1990s in my state. The judges clearly felt it was cruel to prolong it, and he had expressed a desire not to be kept alive through extraordinary means (which is what creates the feeding tube issue - not extraordinary, necessarily). They found a way to justify it even though there wasn't much law in their favor.
There were a few dissents, and I was shocked by how much things have changed in that time. Several judges were going on and on about religion and how wrong suicide and euthanasia are and how disgusting this was and how it went against all the established values of human history and morality. Today, such a dissent would be shocking, but these judges felt quite strongly about it. I'm not saying they were wrong, but their justifications were coming from a totally different legal and social era, and so their reasoning is quite offputting now. They basically thought everyone was a monster for wanting to stop the feeding tube, whereas I feel most people today would think it was cruel to keep it going.
1. That “families” can (and should) define death, not doctors
Agreed that this is problematic medically, but people do have a right to have their own beliefs on what constitutes death, and there have been times where social pressure did contribute to some medical improvements (or what some would consider improvements), even though it's a dangerous line. Doctors used to classify all sorts of things as mental illness and commit people with relatively minor disabilities to mental hospitals for life - they used to offer lobotomies - it's not always good to let doctors say what is best. They are human and some of these issues are complicated and it's not clear what is best. Sometimes non-doctors are needed for another perspective.
2. That brain death is just another kind of brain damage, and is like a deep coma.
Agreed that this is a ridiculous belief, but people do have a right to be stupid about medical issues, and most are.
3. That brain death is not true death, and there is reasonable hope for the brain to “recover” as long as the heart beats
Same as my last answer - ridiculous, but many people believe in miracles in all sorts of ridiculous situations and that is their right.
4. That families have the “right” to determine if or when somatic support can be withdrawn
I don't know that this is settled - I actually was not aware until this case that doctors generally made this call. I know they decide brain death, but I thought it was up to the family to pull life support, if the hospital was being paid. I guess as we know more about brain death, it does start to become a "do no harm" issue, and the doctors should have more control.
5. That families can recruit the public for the purpose of protesting and civil disobedience over the diagnosis of death, and can coerce the courts into making exceptions to well established law
Families are allowed to recruit the public to create false outrage all the time and regularly do. It's become crazily overdone and is irresponsible. But they do have the right, and I disagree it is well-established. And courts are not supposed to be coerced by this - of course, they sometimes are,
but that's true of every legal issue - if the courts didn't change their minds due to public pressure, think of what some of our laws would still be like.
6. That families may lawfully engage in harassment of medical professionals
They do have the right to do this, although obviously some forms of harassment are criminal. But I think everything they have done is completely acceptable under well-established law. You are allowed to bash people in the media pretty much as much you want, unless it veers into defamation territory, and that is hard to prove. We can't have it be against the law to question the judgements of those in power.
7. That families may recruit others to engage in harassment and interference with the function of a hospital, and the rights of other families and patients
Same as above.
8. That it is “okay”, and even commendable, to act on personally held beliefs that are in direct opposition to laws.
This is a pretty commonly held belief. Some laws need to be questioned. It is recognized as commendable by many people, but obviously the situations in which people support it vary. If you directly break the law, I think you should face the consequences, but to simply keep going on about how you think the law is wrong and you know better is a pretty common thing.
I really don't like what the family has done, but I also recognize the importance of allowing unpopular and ridiculous opinions to be expressed, because everyone has a different idea of what that is. I hate how the media covers these stories. It is disgusting, and the public should be ashamed for falling for it and not doing their own research. But it is legal, and forcing silence doesn't really solve these problems - it creates more ill-informed people who believe in a conspiracy.
Also, I don't think this is going to end well for Jahi, not that it ever could have, and will have more of a deterrent effect than an encouraging one. It will show that there is no hope. Most people are not inspired by this story, and the ones that are would probably have been idiotic regardless.
I also can't criticize the judge until I read more about it - sometimes there are reasons for rulings that aren't related to what the judge wants to happen.
And, I don't know what would have happened if Jahi had been forced off life support a while ago. Maybe her mom would have adjusted, but it's also possible she would have totally snapped due to her belief she was forced to betray her daughter and become more dedicated to a crazy cause. That happens quite a bit. That's why I believe in allowing these opinions to be expressed rather than forcing compliance in some situations - the person doesn't always realize it's right, and often gets more devoted to the craziness, and creates a community of supporters.
And I know this post is going on forever, but I was shocked at how the hospital's attorney behaved. I support the hospital's decision, but it's clear the family is not getting it and it's not pure malice for no reason. The statements seemed to keep disparaging the family, instead of defending the hospital's decision. There was just no reason to drop to that level - the appropriate thing to do was repeatedly say "we understand how difficult this can be to accept and how desperate the family is, but she is brain dead and it is not in her interest or feasible to continue life support - she cannot recover and it must be withdrawn - she is legally dead. We express our sorrow to the family and hope they can find peace." Even if the family was being awful to them, a hospital should never get into those squabbles. I was not impressed by what the hospital put forth, but of course I'm sure the individual doctors did everything they could and have nothing to do with writing statements.