The first two stories this week have brief summaries of two different court orders: you might utter a distressed “You can’t be serious!” on one. The other could be described with the same words, but with an opposite emotion.
Fight the System or Die Trying
A 19-year-old teen identified only by the initials “ST” is dying from mitochondrial depletion syndrome — a genetic, degenerative disease that has been destroying every part of her body: sight, hearing, muscles, bones, kidneys, and lungs. But it doesn’t affect her brain, and she’s asked to travel from the United Kingdom to Canada, where a medical trial has a very slim chance of saving her life. “This is my wish,” she said. “I want to die trying to live. We have to try everything.” Two hospital psychiatrists determined she has the mental capacity to make her own decisions, but the British National Health System — and a judge — disagree. “I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position … is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain,” the judge said. The decision is the first step in approving the NHS Trust’s request to move ST into palliative care, which among other things would remove her from dialysis — ensuring her death from kidney failure in a few days. Also, she’s known as “ST” because of a standing court order for her to remain anonymous. “We are not allowed to ask people for prayers or for help which she desperately needs,” ST’s family said in a statement. “It is a matter of life and death for our daughter to raise money for treatment in Canada, so these arbitrary reporting restrictions are literally killing her. We are shocked to be told by the judge that our daughter does not have capacity to make decisions for herself after all the experts have said that she does.” (MS/London Telegraph) …When she said “die trying” she probably didn’t think it would be in court.
True contributor Mike Straw, who wrote this story, was not aware when he wrote it that ST has died. Her family issued a statement via Christian Concern that “On Tuesday evening [Sept. 12] we lost our beautiful and courageous daughter, known to the world as ST. To us she has a real name. Even now, in the hour of our grief, we continue to be gagged by the court order from saying her name aloud.”
They note that “ST was a committed Christian and firmly believed that life is the most precious gift we have from God. Every family faced with such a challenge and tragedy should have the opportunity to leave no stone unturned when trying to save the life of their child.”
Christian or atheist, it’s hard to argue otherwise, yet Britain’s National Health Service did just that.
The NHS is not just a conglomerate of government-funded hospitals and clinics, it’s essentially what Americans would call a “health insurance” company or, more accurately, an HMO. So another way to look at this is that the insurance company not only wants to “pull the plug” to save money, but it asks a court to shield it from disclosure of what hospital, what doctors, and even the patient’s and family’s very names. That meant the family had significant barriers to, say, create a GoFundMe page to help collect money to pay for the young woman’s treatments abroad.
The web site notes that on Sept. 22, the family will “appear at a hearing in the Court of Protection to ask for the reporting restrictions to be discharged and for them to be given a right to tell their story.” It seems reprehensible to have made the order; it would be more so to not grant that request.
Once I saw Mike’s story last night, I alerted him that I’d be blogging about it (and the other court decision, following), and asked if he had anything he’d like to add. He certainly did:
Mike Straw’s Comments
This story hit me differently compared to most of the stories I write for True. Like many people, I feel a lot of anger about the whole situation, but that anger is broadly focused and tempered with the understanding that comes with personal experiences.
My wife, Deanna, has an uncanny ability to understand the end-of-life process differently from most people. As clergy, her favorite thing to do is funerals — we often joke that she puts the “fun” in “funeral.” Recently she started volunteering at a local hospice, so the idea of allowing someone to die at their time in the way they desire is on our minds a lot lately.
I’ve also learned more about that process having her around, including deeply personal experiences when my uncle and her mother died while under hospice care. She was able to explain what was going to happen and shed light on things that had happened, including our grieving processes. Death affects everyone in very powerful ways, and that power can be seen in how different people are processing the then-future and now-past death of this one young woman.
This article takes the positives of hospice, palliative care, and end-of-life decisions and flips them on their head. And it does that because of the one thing these all need: the recognized humanity and autonomy of the person who’s dying.
I get most angry at this particular sentence from the judge: “In my judgment, and based upon the evidence which is now before the court, I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”
Modern psychology has come to understand that we are not persuaded by facts, but by emotions and subconscious biases. It’s only after our subconscious minds have made a decision that our conscious minds find the facts to boost what we’ve already decided, and discard facts that contradict it.
(For some great plain-English explorations of this idea, I found the book The Righteous Mind: Why Good People Are Divided by Politics and Religion by Jonathan Haidt, and David McCraney’s You Are Not So Smart podcast, to be very helpful.)
You can see that here: the judge seems to have some strong biases for removing life-saving care when it’s no longer likely to help. That bias may be financially motivated (as the NHS is incurring significant costs keeping her alive), or it may be motivated by compassion and not wanting to see ST continue to suffer unnecessarily, or it may be a combination of these and other motivations. Whatever the motive, the fact that “my judgement” that is “based upon the evidence” is so contrary to the evidence shows that there is definitely a bias there.
This question was very complex, and there was never a “good” answer, but like so many other things in this world the “best” answer would have been to respect ST’s wishes and grant her the right to choose how she dealt with her own mortality and how much she chose to fight it.
ST never seemed to have misunderstood the facts of her horrible disease or have any illusions about how likely it was that the treatments would work. She just wanted to make a final stand against the disease and either win or go down fighting. This isn’t delusional or a sign of “an impairment of, or a disturbance in the functioning of, her mind or brain.” It’s a sign of someone wanting to have some control over how she went out.
We had some confusion in our home for a bit about the use of the term “palliative care”. The way it’s used in this case is different from Deanna’s understanding. It wasn’t until I saw a bit in the Wikipedia article on palliative care that I understood why. In the United States, palliative care and hospice care are different.
Deanna said, “Hospice is enabling the patient to have a choice in the way in which they receive end of life treatment. Its root is important because we keep the patient as comfortable as possible, giving them all choices within their control. If they wish to get treatment to make them ‘better’ they are discharged from hospice and receive palliative care.” But as Wikipedia points out: “In the common vernacular outside the United States, hospice care and palliative care are synonymous and are not contingent on different avenues of funding.”
I think the way we define palliative care in the U.S. would have been perfect for ST.[End of Mike’s comments]
Alexander Cohen’s Comments
Alexander is the other True contributor. He didn’t write this one up for True, but he did for his own publication on Substack. See She wants “to die trying to live.” on Substack.
Download the Court Decision
This one is fairly dense compared to the other case below, but I want it to be available so those who want the best chance of understanding the decision can read the judge’s words directly and fully. I’ve only had time to read the first few pages, and barely skim the rest.
Juan Valenzuela, a prison security guard in Colorado, went through security at Denver International Airport in February 2017. He presented his I.D. — an expired California Identification Card — but the TSA agent thought it was suspicious. Valenzuela explained it had been damaged by a trip through a washing machine and provided more I.D., including his Social Security card, his government-issued work photo I.D., and his firearms certification card, which also bore his photo. But the TSA agent summoned Denver police, who arrested Valenzuela for “forging” a government document, a felony. A prosecutor “took one look” at the case, noting the washed card still had its security features intact, and dismissed the charge. That took several months, and Valenzuela was struggling to pay rent and feed his family after being fired from his job. He eventually got his job back, and not surprisingly, he sued. In 2022 a federal court awarded Valenzuela $200,000 in compensation plus $300,000 in punitive damages against Karl Coleman. Coleman is the Denver police officer who swore out the complaint even after doing a records search and finding Valenzuela had a valid California driver’s license bearing the same number as the I.D. card. The court found his actions “reprehensible,” and also ordered the Defendant to pay Valenzuela’s lawyer’s $485,200 legal bill. Still, there were apparently unsettled issues, perhaps including that DPD officer Ligela Craven had called Valenzuela’s boss at the prison, who confirmed Valenzuela’s identity, but went ahead with the arrest anyway. Last week, the Denver City Attorney recommended the city settle the remainder of the case and award Valenzuela an additional $825,000. (RC/Denver Post) …Also reprehensible: that it takes more than six years to settle such an open-and-shut case.
To get this out of the way first: I can’t help but wonder if Hispanic security guard Juan Valenzuela had been an executive-level white guy with a name like, say, Gordon Studebaker III, would he still go to jail for a washing machine-damaged I.D. card backed up by other officially-issued photo I.D.s?
Let’s just say I doubt it.
It’s bullying and outrageous (“reprehensible”) conduct, and the police must be slapped again and again and again if necessary to get it through their skulls that their job is “to protect and to serve” with discretion and intelligence, not to beat on people — literally or figuratively — because they are brown. The sad part is, taxpayers have to pay for such settlements, so we all really need to work to demand better from the governments we pay for.
Download the Court Decision
Anyway, what’s of most interest to me is the final court order from 2022, the facts from which were used by the reporters of the source stories I used to briefly tell you what happened. The defendant(s?) had made several post-trial motions trying to squelch punitive damages, trying to not pay Valenzuela’s lawyer fees, trying again to claim immunity, etc. In her Order, the judge analyzed each point and shot them down beautifully, one by one. I, at least, found it very interesting reading.
ST 23 September Update
The gag order was lifted on 22 September, and it was revealed that “ST” is Sudiksha Thirumalesh. Victoria Butler-Cole KC, the lawyer for the NHS Trust involved, said the Trust had “no objection” to the now-dead 19-year-old to be named. But which NHS Trust was involved in fighting all of this? That is still part of the gag order!
“This profoundly disturbing case has demonstrated the urgent need for an overhaul into how end-of-life decisions are made in the NHS and the courts,” said Christian Legal Centre CEO Andrea Williams.
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