by Dominic Wilkinson @Neonatalethics
In California, in the last week, there have been further motions in a long running lawsuit relating to a brain-dead child. Oakland teenager Jahi McMath died after a tonsillectomy in December 2013. However, her parents rejected the medical diagnosis of brain death, and despite a Californian court providing judicial backing for doctors’ determination, organized for her to have a tracheostomy and be transferred to another medical facility. More than 18 months later it appears that Jahi’s heart is still beating and she is still connected to a breathing machine somewhere in New Jersey.
There are a host of challenging ethical questions in this case. One of these is raised by a curious inconsistency in US law around brain death. It isn’t a coincidence that this is where Jahi now resides. In New Jersey, statute specifically allows a religious exemption to the process of determining brain death that applies everywhere else in the US
“The death of an individual shall not be declared upon the basis of neurological criteria … when the licensed physician authorized to declare death, has reason to believe, … that such a declaration would violate the personal religious beliefs of the individual. In these cases, death shall be declared, and the time of death fixed, solely upon the basis of cardio-respiratory criteria ….”
The justification for this exemption is that some members of the New Jersey community reject the concept of brain death. Although all major religions accept brain death, some subgroups (for example some Orthodox Jews) do not.
One practical challenge of the New Jersey exemption is that it could appear to make death a contingent matter of location. Did Jahi McMath come back to life when she crossed the New Jersey state border?*
More broadly, although New Jersey is a particularly striking example, there are differences in the criteria used for defining death even where brain death is accepted (see here, and here) both within countries and between countries. So the problem of cross border reincarnation* or at least cross border inconsistency is not restricted to the East coast of the US.
However, there is a further problem in relation to the New Jersey statute, in that it specifies exemption for religious objections to the concept of brain death. But while one reason for the law is a concern to avoid discriminating against those who hold particular religious views on death, this very clearly discriminates against those who share those views on non-religious grounds. (Although rare, there are secular opponents of brain death). It may or may not be justified to allow people to opt out of a concept of death that is endorsed by the majority. However, it appears problematic to confine that to those who have a religious reason.**
This is an example of a wider issue. There are a range of situations where states may be tempted to grant a religious exemption to a norm. For example, perhaps we think that believers should be exempted from performing abortions, working on a religious festival, being conscripted to military service etc. In a medical context, believers may be given access to expensive medicines that reduce the need for a blood transfusion, or medications that are not derived from pork. However, whenever such exemptions or special treatment are warranted, they should apply equally to those with religious or non-religious reasons to desire different treatment.
It is possible that actual reincarnation, and eternal life is confined only to believers of a particular religious tradition. However, down here on Earth, we have the option of being more impartial. Cross-border reincarnation, and eternal ‘life’ on a ventilator, should be open to all, or to none.
*This is not strictly speaking correct, since the NJ statute only refers to the ‘declaration of death’. Had Jahi had her surgery in New Jersey she could not have been declared dead. However, having been declared deceased elsewhere there is nothing in the NJ statute to undo the previous determination.
**One possible reason to confine exemptions to members of a particular religion is because of a desire to reduce the total number of exemptions (where these are particularly costly). For example, since continued mechanical ventilation in intensive care is very expensive, states may have a desire to reduce the number of individuals who claim an exemption to brain death and request continued treatment. However, where limited resources provide a reason to discourage or prevent some individuals from demanding expensive treatment, this should apply equally to those with religious or non-religious reasons underlying their demand.
I’m sorry, but you are off on a couple of things. jahi did not just have a tonsillectomy, she had three procedures done at once. Also, her heart is not beating on its on as you make it sound. A ventilator is making the heart beat. Without the vent running, her heart would not beat.
“Had Jahi had her surgery in New Jersey she could not have been declared dead. ”
This is most likely incorrect. Jahi’s parents’ “religious objections” to the use of brain death as a determinate of death did not occur until several days after Jahi was already determined to be dead (by the same basic medical standards in CA that are used in NJ for brain death). Their “religious” objection appeared to be the result of their lawyer suggesting an argument to be tried in CA court (it failed in CA and likely would have been too late to be successful in NJ as well). To use the NJ alternative death statute, one has to tell the doctors, before testing, that brain death is not considered death for religious reasons.
Therefore, Jahi is not legally considered alive in NJ. Her death certificate is just as complete and legally binding in NJ as in CA. There has been no legal determination of non-death of Jahi in either NJ or CA.
So, simply moving across NJ border will not bring one back to life from brain death – you have come into NJ alive and then refuse brain death testing if you want a ventilated body (with a dead brain) not to be legally considered a corpse.
Thank you so much for these comments, Dominic. This post is not really about any particular patient. Nor is it really about brain death. It is about justice, or in more common parlance – fairness. The notion of providing rights based upon some beliefs and not others. Rights and privileges based upon beliefs (religious, personal, secular…) must be granted in all cases or none. It is arbitrary that religious rights are given preference in the law. This must be addressed in serious dialogue. Good luck with that as religious groups vote and laws are written by elected officials. Perhaps this dialogue can begin to catalyze those who prefer justice for all to show our voices at the polls. As I observe progress around reducing vaccine exemptions, here too – religious objections remain when other objections are eliminated. I look forward to further discourse on the issue (and removal of all non-medical objections to vaccines in public school children!).
I basically agree with Barrie.
Providing exceptions to public policies based on religious beliefs (which, by definition, are not based on facts, evidence, or reason) is certainly unfair and results in public policies being based on religion – or lack of reason (sometimes also considered stupidity or insanity).
Can you imagine the idiocy that would ensue if “anyone” could declare that their beliefs trump reason – and society had to honor all “beliefs”?
The only reason the the current “religious exemption claims” are not simply disregarded as being irrational is that (historically) most religious belief exemptions requested are mostly harmless or the harm is limited to the ones claiming exemption – and so the level of idiocy has been manageable (for now – Sharia law anyone?)
To take the argument one step further: if our society wants to allow exemptions from laws for “sincerely held religious belief”, then the impact of those beliefs should not affect society at large. Afterall, religious belief is a choice. People adopt religious beliefs and abandon or change them all the time. Even major organized religions ocassionally change their stances on certain issues. A religious belief your neighbor holds should not entitle them to any special priviliges that may require me to “accommodate” them. If families wish to deny the accepted medical determination of death, then they should be required to foot the bill. By requiring the “state” to pay for continued extraordinarily expensive maintenance of a body is to simply force other people who may not share that belief to pay for it. This calls to mind the Blue Laws some states had which were arbitrary and capricious and denied the right to purchase necessary items simply because someone else had a religious exemption to them. As long as laws don’t target certain religious groups in an effort to discriminate against them, there is nothing unconstitutional about not forcing others to accommodate them. An example of this contrast would be the recent Hobby Lobby and Abercrombie & Fitch rulings. In the A&F ruling, the employee was targeted since there is no legitimate reason to deny her request since no one was required to wear a scarf to accommodate her. In the Hobby Lobby case, employees were denied benefits due to the religious views of the owners, causing harm to the employees.
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