Teen with terminal illness decides to refuse life support

This column appeared in the Express News on July 27, 2016.

2016-07-27Dear Mr. Premack: I read the article on MySA.com last week about Jerika Bolen, the 14-year-old Wisconsin girl with a terminal illness. The report says that she has decided to go off her ventilator later in August to end her suffering, with support from her family and community. They even held a dance to honor her. If she were in Texas, would she have this same option to end her life? – WR

According to the article in MySA, Jerika Bolen lives in Appleton, Wisconsin and suffers from type 2 spinal muscular atrophy, a painful and terminal condition. She has indeed decided to turn off her ventilator so she can die peacefully at home with her family. The story is heart-rending, and sadly not unique.

Avoiding life-sustaining treatments, which will result in natural death, is very different than ending a life via assisted suicide. Jerika is not seeking assisted suicide, which is not allowed under either Wisconsin or Texas law. Assisted suicide is more gently referred to as Death with Dignity (DwD). It is legal only for competent adults with terminal illnesses in Oregon, Washington, California, Vermont and Montana.

Montana allows DwD under a court ruling (Baxter v. Montana) in which its Supreme Court ruled that DwD was required under the Montana constitution (although for liability reasons, DwD is not actively used in Montana). Conversely, the New Mexico Supreme Court ruled in June 2016 that there is no fundamental right to physician assisted death with dignity under its state constitution.

The New Mexico Supreme Court sympathetically stated that while the state “does not have a legitimate interest in preserving a painful and debilitating life that will imminently come to an end, [it] does have a legitimate interest in providing positive protections to ensure that a terminally ill patient’s end-of-life decision is informed, independent, and procedurally safe.” In other words, if the people of New Mexico (or, for that matter, of Texas) demand new laws and their legislatures change the statutes, DwD would become legal in those states.

All individuals have the legal right to refuse medical care, even life-saving medical care. The interesting twist with Jerika is that she is a minor, and so must have complete support in her decision from her parents and physicians. Without following proper procedures, it is possible that her parents could face charges of criminal negligence when medical care is withdrawn. That does not seem to be an issue here, so Jerika’s decision must be properly supported.

If she was in Texas, her parents would be able to sign a Directive to Physicians on her behalf. The Directive would allow her to refuse the life sustaining treatments that are keeping her alive.

Paul Premack is a Certified Elder Law Attorney is the author of Thinking Beyond Tomorrow, Organizing, Planning & Settling Your Estate, 8th Edition. View past legal columns or submit free questions on legal issues via www.TexasEstateandProbate.com or www.Premack.com.

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