The state intervenes... too much

The Alfie Evans scandal didn't get a lot of news site attention from the MSM, but it did in the conservative media. A bit of background if you don't know the story (which means that you follow the MSM and thus miss some news stories):

Alfie was born in Britain about 23 months ago. About 6 months after his birth, his health was declining and he was found to have some unknown wasting disease that was shrinking his brain. He's been on life-support since December 2016. The doctors decided treatment was futile, and removed life support. A hospital in Italy offered to take him, which the parents wanted, but this was blocked by the British courts, who also posted guards to prevent his parents from removing him from the hospital. He died at the hospital on 4/28/18 approximately 5 days after being removed from a ventilator.

Superficial review and reaction

Initially I viewed this case of one of people blindly holding on to hope, screaming for everything possible to be done, and ignoring the evidence that it was hopeless. I think most of the news stories played out this way, along with most of the comments. So my initial reaction was to back up the scientific findings and stress the reality of the situation. Alfie was not going to recover. He was not conscious at all, and would never become conscious. He had no prospect in life except being connected to life support and having seizures as they gave him therapy in trying to keep him alive. That was the hard truth that so many people seemed unable to accept.

I agreed that hospital was right to declare treatment futile. I disagreed with the British court preventing the parents from taking Alfie to Italy. There seemed (to me) little chance of significant harm to Alfie. But the judge was overly concerned that he'd die in transit, and that seemed appalling to the judge. I disagree, but at least I understood the rationale, and I didn't think the judge was a monster. Many others did.

The public outrage at the hospital and the British courts was huge, which I didn't understand. Now I do.

When should courts overrule parents?

If you look at the story through the lens of what was good for Alfie and what was medically possible, the parents seem out of touch, and the hospital and courts seem sane, realistic, and reasonably kind.

However, if you look at the story through the eyes of Alfie's parents, it appears very different. They want to do whatever they can for their son. The hospital says they can't do anymore. The parents are distraught, seek other opinions, but are legally and physically blocked from taking their son to another location for treatment.

This is the outrage. They love their son, want to care for him, have never been abusive to him, but their rights as parents were shut down in favor of the court's opinion. I felt this was wrong, but at first I didn't feel the outrage of it.

The mistake of the court was to take away the rights of the parents to decide the child's treatment. Almost all parents will consider carefully, help, nurture, notice how the child responds, comfort, and minimize suffering. Most parents can do this better than a judge can because they are intimately connected to the child.

Not all parents are like this, however. Some are abusive or negligent. For those parents, it makes sense for the courts to intervene. However, Alfie's parents were neither abusive nor negligent. They cared more than anyone else. But at the end, these parents, who dearly loved him, were barred by police from caring for their son in the way they desperately hoped to.

That was the wrong. Not against Alfie, but against his parents. And it was a fairly grievous wrong, to take the decision away from them in such desperate circumstances.

Media focus

Media tended to focus on how it wasn't certain what caused Alfie's decline, and how his last hope relied on getting care elsewhere. Some attacked the British National Health Service (NHS) for its policy to withdraw life support. Some didn't attack the NHS, but faulted the courts for siding with the NHS against the parents and the child's 'last hope.' It became a cause within Britain, but perhaps even more among American conservatives. Their spin, motivated by animus against socialized medicine such as the NHS, regularly contained lies and didn't accurately report the reality of Alfie's condition. The media regularly used words like 'murder' and conservative commenters copied that. Very few gave consideration to the personal, ethical, moral, and financial issues in giving life support for extended periods.

The American Conservative is typically a more thoughtful source of the conservative perspective. But even here, Dreher puts his thumb on the scale. When the NHS wants to end artificial life support, it's described as "forcibly euthanizing the disabled." But should his parents make the decision, it's letting "Alfie die a natural death." Interesting difference in wording considering the actions are the same.

The American Spectator is probably more typical in its invective. The doctors are incompetent and the state is tyrannical. This isn't measured analysis, it's war against tyranny. It's no wonder so many echo these arguments when they're not presented with any counterarguments. Just one side of the story. If you're not practiced in questioning, it's not going to happen.

Luckily, the comments section for the Dreher argument had other thoughtful alternatives. Another columnist for the American Conservative focused more on the parents, and was also fair to the doctors. In the comments section for the American Spectator, anyone dissenting was blasted. Well, that's just another week in the culture war. I wonder what this week will bring?

Alfie on a ventilator, with his dad

Image: dailyrecord.co.uk

How accurate is brain death?

This post will for those who share my scientific curiosity about the issues involved in the current case of Jahi McMath, the 13-year-old declared brain dead from complications after an operation. The hospital has declared her brain dead, and refuses to fit her with a tracheostomy or feeding tube into her stomach (G-tube). She's currently on a respirator.

These kinds of issues have come up before, including whether Terri Schiavo's G-tube could be disconnected so she would no longer passively receive nutrition and water. Terri Schiavo was in a persistent vegetative state where she could breathe on her own but she didn't have voluntary movement. According to the hospital, Jahi requires a respirator and would cease breathing and all signs of life if detached from it.

Jahi is categorized as "brain dead," a new category that allows someone to be considered dead and have their organs removed by doctors for transplantation. Without this category, all breathing and circulation would have to cease before the organs could be taken and they would be in a degraded condition.

The medical profession has established criteria for brain death including the total absence of response in all cranial nerves. Furthermore, it can be confirmed by studies of blood flow in the brain, which have ceased in a brain dead patient, though this is not 100% accurate in confirming brain death.

It's questionable whether the criteria for declaring brain death are as rigorous as they should be or are followed rigorously. Several supposedly brain dead people have revived, but isn't supposed to be possible. Here's a case from Oklahoma of a man declared brain dead after an accident. His body was being prepared for organ removal when relatives noticed something and subsequent tests showed reflexes indicating greater than expected nerve response. He came out of coma 5 days later (with all his organs) and recovered much of his function. There was a similar case in Britain. This site lists several other cases.

One problem is that doctors are too hasty in declaring brain death after accidents. When there is injury to the head, the brain can swell to the point that most blood flow stops, causing deep coma and looking like brain death. However, in some people the swelling diminishes and the person lives, though with varying degrees of brain damage. Care must also be taken after drowning, exposure to cold, and drug overdose.

Jahi's case doesn't fit into this category, however. She suffered from blood loss, cessation of her heartbeat, and no oxygen to her brain. It doesn't seem to me that swelling was involved. None of the recovery cases occurred to someone in a situation similar to Jahi's.

Of course I don't have inside information about how long Jahi wasn't breathing, test results for brain function, or her response (or lack of response) to trial cessation of her respirator. There's a very good chance that she is indeed brain dead, especially since it's been over three weeks since she had any signs of neural function. However, the eagerness of some doctors to harvest organs for transplant has corrupted the practice of declaring brain death, at least to some extent. It is horrific that doctors should be so eager to take organs that they'd sacrifice lives in the process.

One of many complications

Image: papermasters.com

Update 1/7/14. She will probably die, or finish dying, soon.

Update 5/6/18. Here's a case of a boy with a head injury so severe that he was thought to be brain dead. He regained consciousness and is speaking. The article isn't clear, but it seems that he was in a coma for less than a month. This is quite different from someone in a long-term coma. Jahi is still alive with the support of a ventilator and all the other types of life support. That doesn't mean she isn't brain dead. It could be that our medical systems are excellent at maintaining bodily functions.