Hey there, Legal Tea Listeners –This is your host, Jenny Rozelle. Welcome back for another episode today – episode 167! Today is a “current trends” topic where we talk about things going on currently that are relevant and pertinent to my estate and elder law world, and/or maybe things I’ve seen on the news or stumbled across on social media. Last week, I mentioned maybe doing an episode inspired by the show, Jane the Virgin, and there was some episode on it about a couple doing their estate planning. Well, I went digging to watch the episode and found out I needed Hulu or one of those platforms to watch it … and naturally, it’s one I don’t pay for … and out of principle, kind of like how I’ve been whey they put sports and games on Peacock, which I also don’t have … I’m refusing to buy a subscription.
Maybe I’ll cave eventually, but NOT TODAY! So, the Jane the Virgin episode was thrown out the window … so all of that, to say, on today’s “current trends” episode, we’re going to talk about Terri Schiavo. Now, if you recognize, her name, you’re probably thinking, “Well that’s not new, Jenny!” I recently gave a presentation to a pretty large crowd and as usual, when I talk about living will declarations and advance directives, I said, “Raise your hand if you’ve heard of the name Terri Schiavo.” About ½ the room raised their hands. Now, it’s a strange observation, but it feels like less and less people know about Terri’s case – and the lessons her case taught us, especially from an estate planning perspective, are so invaluable.
On this topic, at the very beginning of Legal Tea, way back in Episode 10, I talked about a modern day Terri Schiavo named Josh Barras – so today’s episode is going to be about Terri’s case a little bit, an update on the case about Josh’s case, and honestly my goal is to just bring this topic of living will declarations and advance directives back to people’s attention! So, let’s first start with Josh’s case … I actually discovered Josh’s case through social media. Now, Josh has or had (I’m not sure what word to use, which will make sense eventually) a wife named Maegan. Before I really dive in, remember this is a real-life case … Josh and Meagan are real people. And their story is very sad. All around. So, if you’ve had a cruddy day, I’d consider pausing the episode and picking back up another day.
Alright, so according to an article in The Advocate, in November 2018, Josh, after an attempted suicide, survived but suffered from extreme brain damage. That resulted in Josh being in a vegetative state and on a feeding tube in a nursing home. In June 2019, a Judge in Lafayette, Louisiana granted Maegan her request to be the “tutor” over her husband and Josh’s mother, Kelly, as the “undertutor.” Before I go into more detail, Louisiana’s legal system has much French-influence. When I say “tutor” and “undertutor” – Louisiana refers to “tutorship” as other states would refer to as guardianship and conservatorship. So we have wife, Maegan, as the “tutor” of Josh and his mother, Kelly, as the “under-tutor.”
According to the website, Exceptional Lives, a “tutor” is much like what we would say is a Guardian – they’re the decision-maker. So, Maegan is the decision-maker for Josh. “Under-tutor” is unique-to-Louisiana in that their purpose is to ensure the “tutor” is operating in the person’s best interest. So, Kelly’s role is to make sure Maegan is operating in Josh’s best interest. What’s strange about this is that tutorships are reserved for minors – and Josh was not a minor at this point in time. I was unable to find if this was a mistake in the Court filing – or a mistake by an attorney – or what. Nonetheless, things got cleaned up in May 2020, according to The Advocate article, when Maegan was designated as the curator (which is a tutor/guardian for ADULTS), but Kelly, Josh’s mother, was not designated as under-curator.
So, according to The Advocate, the “conflict (between Maegan and Kelly) appears to be between a wife who is ready to let go and a mother who refuses to give up hope.” Maegan wanted to move Josh home from the nursing home and let him pass away – while Kelly wants to keep him alive. In March 2021, Kelly, through her attorney, filed a Motion with the Court to restrict Maegan from “taking any actions that would end Josh’s life.” In response, according to The Advocate article, the Judge granted a temporary restraining order to prevent Maegan from accelerating Josh’s death – meaning she couldn’t take him out of the nursing home he is in, couldn’t remove his feeding tube, etc.
Josh and Maegan’s story (well and Kelly) made such a splash in social media – much due to Maegan highlighting things on TikTok– that Dr. Phil caught wind of it. In March 2021, Maegan and Kelly appeared on Dr. Phil to explain both their sides. I highly recommend watching the episode – I think it does a great job at summarizing what’s transpired, puts a face to everyone’s names, and even brings on a Doctor to give his opinion. On their episode, according to The Advocate article, Kelly believes that Maegan is exploiting the situation for money – Kelly said, “Just putting this out on social media, she’s had a venue where she could raise money. … His care is completely paid for through Medicaid. There’s really nothing that we need to purchase.”
Now, when I did an episode on their story way back on Episode 10, that’s really where things stood. Though, SO MUCH has happened, that I wanted to do this follow-up episode … So, fast forward time to more current, like 2022 and 2023, Maegan ended up getting disqualified as Josh’s curator – primarily, according to The Advocate, for using donated funds (to and for Josh) on gambling. The Judge then appointed Josh’s sister, Robyn Well, as curator with his mother, Kelly, as under-curator – which shifted legal decisions from Maegan to Robyn and Kelly. Today, in the fall of 2024, Josh is still living and his family, specifically sister and mother, are in charge of his decisions.
You know, this story reminds me of the name, the woman – Terri Schiavo. A name some may remember – I bring her name up in client meetings often, and most remember Terri’s name, but not my younger clients. According to Wikipedia, Terri had gone into cardiac arrest at the young age of 26 and as a byproduct of that, she suffered from massive brain damage due to lack of oxygen to her brain. Much like Josh, Terri ended up in a persistent vegetative state. Terri’s husband, Michael, wanted Terri’s feeding tube removed – and Terri’s parents, Robert and Mary Schindler, wanted the feeding tube left in. Michael ended up petitioning the Sixth Circuit Court in Florida to remove her feeding tube, and Robert and Mary opposed the petition.
Terri’s case bounced around the legal system – 14 appeals, 5 district court proceedings, much intervention by politicians such as Jeb Bush and President George W. Bush, and 4 attempts to be at the US Supreme Court level – I mean, honestly too many motions, petitions, hearings, etc. to name and go into… At one point in the Court saga, Terri’s feeding tube was removed (in 2001) and was re-inserted days later due to the Court proceedings. Then, in 2005, the feeding tube was removed yet again (and stayed removed) and Terri died about 2 weeks later on March 31, 2005.
When I talk about Terri in client meetings, I often say, “You know … we knew what her husband wanted, her parents wanted … we heard from various Courts … we heard from various politicians … we heard from many news anchors … but whose opinion were we missing? Terri’s.” And THAT is the lesson that Terri’s story and Josh’s story teaches us – that we sure have a lot of opinions of a lot of people, but most importantly, we don’t have their opinions on whether they would want to be kept alive in this manner. So, THIS is exactly why you do estate planning – you do documents like a Health Care Proxy, Living Will, Advance Directives to provide what YOUR medical and healthcare wishes are if something happens. That way, people don’t have to guess what you wish would have been.
Okay, let’s wrap this episode up, shall we? That was a bit of a heavy episode, huh! Alrighty … Next week, we’re back to the “celebrity estate planning” type of episode – and during those types of episodes, we dive into a celebrity or “big name” person that has passed away and how their estate looked from an estate planning perspective. Next week’s episode is about Frank Gifford, some may know or remember him from being a professional football player for the Giants and/ or some may know or remember him from being Kathie Lee Gifford’s husband. So, tune in to that next week, Legal Tea Listeners, talk to you then and stay well!
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