Imagine this nightmare scenario. Your 18-month-old baby is critically ill with pulmonary hypertension and heart disease. She has spent most of her life in the hospital and is currently on life support. She has had several near-death events. The stress never ends.
Then, doctors tell you that keeping your beloved baby alive causes her “unnecessary suffering.” They urge you to cease life support.
You refuse. You believe there are reasons for hope. You want to struggle on.
But the doctors won’t take “no” for an answer. They call a meeting of the hospital bioethics committee seeking its consent to turn off your baby’s life support.
In a closed-door meeting, the committee approves. You are given a mere 10 days to find another hospital or they pull the plug. Talk about a classic death panel!
Now, add another insidious twist. Your baby can’t leave the hospital unless she receives a tracheostomy. You ask the hospital’s doctors to perform the surgery. They refuse unless you can guarantee another facility will take over the case. But no facility will make that assurance until the surgery results are in.
How’s that for a classic Catch-22? You can’t take your baby out of the hospital because the necessary surgical predicate can’t be done, but if you don’t take the baby out of the hospital, her life support will be removed and she will die.
Lest you think this is an alarmist hypothetical case study, that exact circumstance currently confronts Trinity Lewis. Her daughter Tinslee is hospitalized at Cook Children’s Medical Center in Fort Worth, Texas, where its bioethics committee ordered Tinslee’s life support withdrawn under a “futile care” law that allows hospitals to refuse wanted life-sustaining treatment over the objections of patients and families.
And it’s all legal under the Texas Advance Directive Act (TADA). The idea behind the law goes something like this:
- In order to honor autonomy, a patient’s refusal of life-sustaining treatment is considered sacrosanct—even if it means they will die. Fine by me. People should have the right to say no to unwanted medical interventions.
- But patients don’t have the concomitant right to say yes. Even if a patient signed an advance medical directive instructing care to continue, even if their family wants the fight for life to go on—indeed, even if the patient can communicate that he or she wants life-sustaining treatment—doctors can refuse if the hospital ethics committee believes the poor quality of the patient’s life renders it not worth living.
Making matters even more unjust, committee hearings allow few due process rights for patients/families. The meeting is held behind closed doors. There is no formal recording of who said what. And there is no legally guaranteed right of appeal.
This raises an important question. What, exactly, qualifies as “futile care?” Contrary to its plain meaning, it isn’t about refusing interventions that provide no medical benefit. To use a wild example, if a patient demanded that a doctor provide chemotherapy for an ulcer, it would be the doctor’s ethical duty to refuse, since chemo wouldn’t be efficacious, i.e., it would not treat the ulcer.
But such “physiological futility” (as it is known in bioethics) isn’t what is going on in TADA futile care disputes. Rather, treatment is withdrawn because it is working—i.e., keeping the patient alive—which the doctors think is wrong. In other words, futile care disputes involve conflicts over value judgments, not medical determinations.
But if patient autonomy is to mean anything, surely the intimate decision of whether to pull the plug should be made by the ill person or family based on their values. In Tinslee’s case, the time to say “enough” should be up to Trinity—not doctors or strangers on a bioethics committee. She is her baby, after all.
Opponents of TADA have tried to convince the legislature to repeal TADA’s futile care provisions for many years. (I testified in support of such moves.) So far, to no avail.
Lawsuits also went nowhere—until now. With the help of Texas Right to Life and Protect TX Fragile Kids—which describes itself as “committed to be a voice for our most vulnerable citizens”—Trinity sued to prevent Tinslee from being forced off life support.
A trial court refused, but unlike previous cases attacking Texas’s futile care law, this time, the Texas Court of Appeals issued a temporary injunction against removing Tinslee’s life support pending trial.
The ruling takes up 150 pages. (No one ever claimed judges are short-winded.) The essence of the decision states that while a terminally ill patient’s “individual autonomy” grants her a “right to voluntarily refuse life-sustaining treatment,” there “is simply no constitutional equivalent for involuntarily depriving a terminally ill patient of her life against her wishes.”
In other words, the right to say yes to care should count as much as the right to say no.
But it’s still a very tough slog. Powerful institutional forces in Texas support futile care (including, astoundingly, the Texas Conference of Catholic Bishops).
And no doubt, it must be emotionally excruciating to care for critically ill patients such as Tinslee. But, not coincidentally, they are also often the most expensive to treat. Accordingly, Cook’s lawyers petitioned the Texas Supreme Court to have the injunction overturned.
Thankfully, the high court declined to take the case, meaning Cook must continue Tinslee’s care pending trial. Hallelujah. A blow against TADA’s medical authoritarianism, at last!
Tinslee isn’t out of the futile care woods yet. The case still must be adjudicated. And the tracheostomy conundrum remains. (Let us hope for the baby’s sake that the parties can reach a settlement.)
But finally—thanks to a courageous and intrepid mother—backed by nonprofit advocates and committed lawyers—Texas’s futile care law’s days may be numbered, an outcome that should also have the salubrious benefit of forestalling TADA’s futile care authoritarianism from metastasizing to other states.
Award-winning author Wesley J. Smith is chairman of the Discovery Institute’s Center on Human Exceptionalism and a consultant to the Patients Rights Council.
Views expressed in this article are the opinions of the author and do not necessarily reflect the views of The Epoch Times.