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? 

The Doctor-Politician-Patient Relationship

What is it with politicians, that they simply can't seem to keep themselves from getting in the way of things that really should be up to individuals to decide?

We've heard for years about how the government doesn't belong in the middle of the doctor-patient relationship, at least not as far as anything related to the Affordable Care Act is concerned, right? Except, of course, when we need the government to get in the way, we're led to believe.

We've gone through the battle on paying for contraception, even making legitimate allowances for actual religious organizations such as churches and their affiliates to not have to directly provide and pay for contraception, but leaving that up to insurance companies. And that hasn't been good enough.

And we've had the fight to make sure that companies that sell picture frames and baskets and similar decorative items also don't have to provide the full array of contraceptive methods to their employees because, well, because Republicans. And because corporations are people too, of course. We mustn't forget that.

The reason we have had the latter battles, the ones over contraception, are clear. Well, kind of,  Then-Representative (now House Speaker). Paul Ryan said back in 2012 that, when it comes to Catholics at least, what's constitutional is not up for discussion by mere mortals in the executive, legislative and judicial branches of our government - someone else owns that decision. Here's Ryan talking about covering contraception under the Affordable Care Act,after the religious opt-out was implemented:

The question is, can the government mandate that people violate their religious teaching, their conscience, their freedom of religion. Look, I can tell you as a Catholic the charities, and the hospitals, they don't enforce doctrine, they don't interpret it. It's the bishops and they're very clear in saying this is a violation of our constitutional rights. So it's an issue of constitutional rights and the government having the kind of power to trump them.

Seems we need the government to get in the way when the religious leaders tell us to, I guess, to help us understand what our constitution means. Except, of course, when the religious leaders say things that the politicians don't like, then all bets are off.

We've had the battle over paying for discussions about end-of-life care decisions - you know, health care proxies, DNRs, living wills, and MOLST and POLST forms, and things like that. We've learned how those critical documents, designed to ensure that a person has the right to define their own wishes and courses of treatment - and that others must honor those wishes - became death panels.

And we need a government to insert itself between patient and doctor in other cases too, such as keeping a person on life support - or taking them off - against medical advice or against patient and family wishes.

In this post from January 2014, we have both sides of that coin. On the one hand, we have a woman who was kept on life support against her wishes, because she was pregnant and in Texas. Because in Texas, where everything is bigger including their smaller government, it's illegal to remove life support from a pregnant woman, no matter the circumstances. The courts eventually ordered life support to end, after what I would only describe as eight weeks of torture for the family. I later found out that it's not just Texas where this type of 'pregnancy' exclusion applies.

On the other hand, we have a teenager who suffered complications during surgery to help relieve her sleep apnea, and was declared dead with no brain activity. In this case, the family believed their child was not dead, even though a host of medical professionals hired by the hospital, the family and the courts concluded she was. The court eventually allowed the family to move their daughter to a facility in another state where she could be 'treated', if that's the right word. Today, she is still 'alive' on machines. Legal actions drag on.

And now, it seems, we need a government to interject itself between the doctor and patient again, specifically when we're talking about a different type of end-of-life care.

Washington DC passed a bill allowing assisted suicide, the Death with Dignity Act. Under the rules, Congress has 30 days to overturn anything DC passes, but it was unable to get the overturn votes and a Trump signature in time. The DC bill survives -- for now -- as do bills in a handful of states that have made assisted suicide legal, allowing patients to truly and finally control their own destiny.

I can't help thinking we won't have to wait long belong before the next time the politicians will come into the examining room with us again. Because, as I noted above, they simply can't help themselves.

Yes, I'd Be Happy To Serve You

But first, can I ask you a few questions?

1. Are you single or married?
2. If you're single, why aren't you married? 
3. If you're married, are you married to a man or a woman? Are you of the same race or different races?
4. If you're not married, please describe your living arrangements. Do you live alone? With a roommate? A friend? A friend with benefits? Life partner? Other? Is the roommate/friend/friend with benefits/life partner a man or a woman? If Other, please describe.
5. Do you have any children? If yes, how many and what are their ages? If you do not have any children, why not?
6. Are you employed? If yes, please provide verification of employment. If not employed, what do you do all day? 
7. Have you ever had sexual intercourse for non-procreative purposes? Please describe.
8. Did you vote in the last election? Do you typically vote Republican? Democratic?
9. Are you currently wearing makeup?  If yes, why? 
10. Have you ever had a surgical procedure? Was the procedure elective? Was the procedure cosmetic?
11. Do you believe in vaccinating children?
12. Please describe your views on abortion. In detail. Include specifics about vaginal ultrasound procedures, how long the grass can be at an abortion clinic, parental notification, how high a bounty should be offered to people who identify women seeking an abortion after a specific time period has passed since her last period, the number of abortionists that can be allowed within a 100-square mile area, the number of protesters that can be allowed within six inches of a prospective abortion patient, how many visits a prospective abortion patient must have before having the procedure, and so on. Leave no stone unturned on this one.
13. Do you believe that infertility treatment is medically necessary? How about erectile dysfunction drugs? Do you believe in contraception?
14. Do you believe the government has the right to order parents or guardians to obtain medical treatment in any circumstance? If yes, please describe.
15. Do you believe that the government can order a patient to be placed on artificial life support, for any reason, against the expressed wishes of the patient and/or the patient's family?
16. Do you believe that the government can order artificial life support to be removed from a brain-dead patient, against the expressed wishes of the patient/patient's family, for any reason, under any circumstances?
17. Do you believe the government can prevent parents from getting medical treatment for their children?
18. Do you own any guns? How many? What kind? For how long? Have you had a background check? If yes, when? Do you have a concealed carry permit?  Are you carrying now? Have you ever fired your gun? If yes, when? What training did you receive on how to use your weapon? When was the training? Who provided it?
19. When was the last time you attended worship services? Where? Describe your religion in 140 characters or less.
20. If your faith includes confession, what was the last sin you confessed, and when?
21. Have you ever received food stamps, welfare, housing assistance, childcare assistance, energy assistance, Medicaid, or any other unearned governmental benefit? Please explain. 
22. Do you believe that women are subservient to men? Explain.
23. Do you believe the government should subsidize faith-based schools directly or through tax credits to parents of children attending the schools? If yes, at what grade level would this be appropriate?
24. Do you believe that only a creche and a Christmas tree should be displayed on government property, and that Christmas is the only legitimate holiday celebrated in December?
25. Do you believe in the spiritual benefits of psychotropic drugs such as marijuana, peyote, psilocybin, and related substances? Have you ever used any such drug for spiritual or other purposes? Explain. 
26. Do you believe in capital punishment? If yes, under what circumstances? If not, why not?

Please feel free to browse the store while I review your responses. Assuming all goes well,  I should be right with you. Oh wait, you have some questions for me before you decide if you want to do business with me?  Well, I guess that would be OK...

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I'm not trying to make a mockery of anyone's religion or deeply held beliefs; I'm making a mockery of government-supported discrimination.  I'm making a mockery of laws like SB 1062 in Arizona, which is pending a signature or a veto from Governor Jan Brewer. I'm making a mockery of politicians like Steve Pierce, who voted for the bill before calling for a veto or repeal, because, like so many Republicans who denounce equality, he noted

I have friends that are gay, and I wouldn't do anything to hurt them.

This bill and others like it are being tagged with the rainbow flag, but they would allow anyone to discriminate against anyone else for any reason they could describe as a deeply held religious belief.  Wiccans could discriminate against Jews who could discriminate against Catholics who could discriminate against Baptists who could discriminate against Mormons who could discriminate against Christian Scientists who could discriminate against atheists who could discriminate against Lutherans who could discriminate against deists, any of who could discriminate against me for living in sin with My Sweet Baboo, if they so chose, or against him for being divorced, if they so chose, or for whatever reason they chose.

This fight is not about gays; it's about PEOPLE.

It's about not making laws that say it's OK to discriminate against people, whether they're in a protected class or not.

It's about remembering that we had government-sanctioned discrimination before we had protected classes.

It's about remembering that those days were not our brightest, shiniest moments.

It's about not going backward in the name of freedom.

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.