Another Heartbreaking Case from Texas

Health care is a very touchy subject under the best of circumstances - ask any politician who's had to vote on giving or taking away any kind of health care itself, or, more often, giving or taking away health insurance. Ask a judge who has to rule on any case related to either health care or health insurance - there's no fun there, as we've seen. 

For folks in Texas, though, the issue seems even more fraught than usual - again. Here's some history on the twisting, turning journey that can be health care in the Lone Star State. 

In April of last year, I posted about the host of bills before the Texas legislature that would allow people with deeply held beliefs to not provide care to LGBTQ Texans. Here's a snippet.

...would allow state-licensed professionals to refuse to serve LGBTQ people if they cite their religion has advanced out of committee in the Texas senate.  Senate Bill 17 would prevent state licensing agencies from denying or revoking licenses from professionals - including doctors, lawyers, pharmacists, and even barbers - if they claim to be following a "sincerely held religious belief."

I noted that, while the bill protected some folks from having to violate their beliefs, that protection didn't extend to everyone.

It's OK though - apparently law enforcement officers have to keep their religious beliefs in check, and even doctors will have to set their beliefs aside for "life-or-death" situations.

And remember, the same Texas that wants to make all of these discriminatory protections for some of their residents and against others, is the Texas that already discriminates against the moral convictions of people, based I guess on the deeply held beliefs of the state, not even the beliefs of an actual person.

That's right: Texas already discriminates against people who want to control health care decisions for family members - but they can't do that if the patient is pregnant. Here's a snippet from my post in 2014 on the horrific case of the Munoz family. 

Marlise Munoz, a mother in her 30's and an EMT, was found unresponsive by her husband Erick, who's also an EMT. He did what he could to try and revive her, as did folks at the hospital, but ultimately the were unsuccessful and Marlise has been on life support since November 26^th, after suffering what doctors believe was a pulmonary embolism. She's being kept alive mechanically, even though her husband has indicated that he and his wife had specifically discussed not wanting to be kept alive on machines; her parents agree. 

And yet, there she lies, brainwaves flat, machine-supported. 

Why? Because Mrs. Munoz was pregnant – 14 weeks at the time of her collapse, now nineteen weeks or so - and under Texas law, life support cannot be withdrawn from a pregnant person. 

That case was the subject of a documentary, 62 Days, covering the family's fight to change the laws that were used to wreak havoc on them. 

And now we have another Texas case full of conflict. I can't decide if this one's worse than the Munoz case, or if it's merely just as horrifying. Here's some info from the WaPo article that brought this one to my attention, about a child named Tinslee Lewis.

Inside a Texas children’s hospital, an 11-month-old girl lies paralyzed and in constant pain. She can breathe only with a ventilator. A suite of medications keeps her alive. 

Tinslee’s condition, doctors say, will never improve. 

The article also notes that every medical procedure performed "causes more suffering," even changing her diaper - and, perhaps most horrifying,

Tinslee also experiences "dying events" that require aggressive intervention two or three times per day. 

The hospital has tried to find another facility that will take her, but so far more than 20 have refused, saying they couldn't correct her condition; the hospital now wants to end life support. A judge has refused to approve an injunction  to continue her care, a decision the baby's mom, Trinity Lewis, is planning to appeal. 

The article points out that this case, like the others, goes beyond what's legal and into what's ethical - something that we - regular folks, politicians, and activists on both sides of the 'life' issue - apparently don't agree on.

Texas AG Ken Paxton argued in a letter to the court that "the Texas law that allows doctors to discontinue treatment violates patients’ constitutional right to due process." On the other hand, though, "The Texas Catholic Conference of Bishops and the Coalition of Texans With Disabilities, among other groups, are backing the hospital." There's also some disagreement on the part of the anti-abortion folks. 

While Texas Right to Life took Lewis’s side, the Texas Alliance for Life and the Texans for Life Coalition have said they agree with the doctors. 

Even folks in the medical ethics field are not aligned, it seems. There's a conflict between what doctors say - and how they say it - and what parents hear from the doctors, see in their child, or what they want to hear and see. The first comment below is from Charlie Camosy, a theology professor at Fordham. The second is from Ann Mongoven, associate director of the Markkula Center for Applied Ethics at Santa Clara University., again from the same article.

Two things get conflated here: One is the medical expertise of the doctors, in which case, they do know best. But determining whether this baby has a life that's worth living have very little to do with your medical expertise. It's an ethical question.  

They're not saying that [Tinslee's] life isn't worth living. What they're saying is, 'I am making her suffering worse, and my job is supposed to be the opposite.'

Professor Camosy leans towards letting the patient or their surrogate make the decision, rather than letting it fall to the medical experts. Mongoven pointed out that "the heart of the matter" gets obscured, no matter who makes the decision, and that

These cases get framed as political battles, when in fact there's a tragedy at the heart of the case that could pull people together. 

The tragedy would be there whether Texas had laws on the books for cases like this one, or the Munoz case from a few years ago, or that allow a practitioner to withhold services from a patient based on a 'deeply held belief'.'  The ethical questions would also be there, with or without any related laws.

But the question is, do the laws help in any way, or do they only make these situations worse? 

Family Over Hospital, Parents Over Government

Two interesting medical/ethical stories are playing out now, one getting a lot of attention and the other less so.

The one you've probably heard more about is the very sad case of Jahi McMath, the California teenager who was declared brain dead on December 12, 2013 after suffering complications following surgical procedures to help relieve her sleep apnea. The determination of brain death has been confirmed not only by doctors at the hospital but also by some who examined her on behalf of her family, and others who were called in on behalf of the courts, according to multiple reports. 

Jahi’s family, not accepting that she’s deceased, has succeeded in obtaining a court order extending 'life support', if that's the proper term, until January 7^th and have been looking for a facility that can take the the girl, keep her comfortable and/or provide some kind of innovative treatment, in hopes that she might recover. A brain trauma center in New York is supposedly willing to take her, although there have been some questions on how to transport her, what level of care would be needed during the relocation, and (somewhat indelicately, I know) how any care would be paid for. 

Much of this is playing out in court, with the hospital on one side and, I would say not surprisingly, the Terri Schiavo Life and Hope Network and the family on the other side. A decision was announced this past Friday that Jahi can be moved from her current location, Children's Hospital Oakland; the logistics of that, and how or if life support will be maintained at that time, still seems to be up in the air. 

It was reported today that Jahi has been released from Children's Hospital and sent to an undisclosed facility (in part for security reasons), according to the family attorney Chris Dolan. He also noted that

She's where she's going to be for a while. She needs to be medically stabilized, medically treated. 

I'm sure that last statement will be examined by experts from many fields for some time. 

The other case you’ve probably heard much less about is an equally sad situation in Texas.

Marlise Munoz, a mother in her 30's and an EMT, was found unresponsive by her husband Erick, who's also an EMT. He did what he could to try and revive her, as did folks at the hospital, but ultimately they were unsuccessful and Marlise has been on life support since November 26^th, after suffering what doctors believe was a pulmonary embolism. She's being kept alive mechanically, even though her husband has indicated that he and his wife had specifically discussed not wanting to be kept alive on machines; her parents agree. 

And yet, there she lies, brainwaves flat, machine-supported. 

Why? Because Mrs. Munoz was pregnant – 14 weeks at the time of her collapse, now nineteen weeks or so - and under Texas law, life support cannot be withdrawn from a pregnant person. 

There are some who think that the hospital is misinterpreting the statute and could end the family's nightmare, but the facility, John Peter Smith Hospital in Ft. Worth, is holding firm, noting that it was not a difficult decision for them to uphold the law and refuse to end the mechanical means of support. And, the doctors have been able to detect a fetal heartbeat, and they check regularly for it.  

What they don't know, and won't know for several more weeks, is what amount of damage may have occurred during the time Marlise was not breathing, had no pulse, and underwent the all-too-familiar efforts we regularly see on TV when actors playing doctors try and resuscitate someone. Was the fetus also oxygen-deprived during that time? Did the drugs pass through the mom to the baby? What are the effects from the repeated electric shocks?  Is the baby healthy, beyond just having a heartbeat?  Erick Munoz, the devastated husband and now single parent to the couple's first child, expressed hopes that if nothing else, this case will educate others, and perhaps lead to the law being changed.

So. Two cases one where the hospital says no, we won't continue life support even when the family wants us to; the other hospital continuing life support even when the family does not want it. Needless to say, folks from all sides have been chiming in on these cases, including Mike Huckabee, a minister, former Arkansas politician, and political commentator. He has made his opinion on the Jahi McMath case very well known, speaking about it on his Fox TV show this past Saturday and posting similar comments on his Facebook page as well. Here's what he said:

Every life has value and worth. There is no such person who is disposable, one whose live has been deemed by others to be less than others and therefore expendable, I can't share that.

He added 

The road that starts that way in deciding that some lives have less value and are unworthy of protection, that leads to a culture that tolerates the undeserved killing of over 55 million unborn children in this country. It leads to China's birth policy that limits the number of children for a family and enforces forced abortion if they deviate from the state-determined ideal. 

And finally, he noted:

It's also that culture that allowed the Nazis to hideously justify the savage slaughter of millions of Jews, disabled people, old people and those with mental illness. Let's hope and pray that the courts continue to do what every court should do, respect parents over government, family over hospitals, and above all, protect Jahi from them all. 

Let's hope and pray that the courts can continue to do what every court should do, respect parents over government, family over hospitals.... above all, protect Jahi from them all. 

Should the Munoz family be allowed to put the name of their beloved Marlise in that statement above, in place of Jahi McMath's name, and be allowed to make their own decisions, family over hospital, parents over government? 

I think yes.