By Wesley J. Smith
Editor’s note. The following is excerpted from Wesley’s testimony before the Texas Senate Committee on Health and Human Services in favor of legislation to change the state’s 10-Day Rule, which allows hospitals to remove a patient’s life support against their or their family’s will. You can watch the beginning of his testimony here.
I appear today to urge this committee to support SB 2089 and SB2189. It is my understanding that the primary purposes of the bills are to improve Texas’s (terrible, from my perspective) medical futility provisions in the Texas Advance Directives Act (TADA) to make end-of-life healthcare disputes between providers, patients and their families conciliatory and cooperative, rather than coercive as is the current case.
“MEDICAL FUTILITY” DETERMINATIONS INVOLVE SUBJECTIVE VALUES RATHER THAN OBJECTIVE MEDICAL DETERMINATIONS
To understand why it is important to the liberty interests of Texas patients to repeal TADA’s “futile care” provisions we must explore the bioethics principle of “medical futility” or “inappropriate care.” As a matter of respecting patient autonomy, patients or their surrogates have a right to refuse any medical treatment—even treatment in an ICU during a terminal illness if it means they are likely to die. Thus, no one should be “hooked up to tubes” against their will, as the saying goes.
But what if a patient wants such life-extending treatment—which, remember, is non-elective care, meaning that without it the patient is likely to die? In Texas, patient autonomy is essentially a one-way street. Here, if a doctor disagrees with the patient’s decision to maintain life—and the patient or family refuses to permit the life-extending treatment to be withdrawn—the doctor can take the controversy to the hospital bioethics committee for a quasi-judicial hearing and binding ultimate ruling.
If the committee agrees with the doctor, the patient or family has only 10-days within which to find an alternative source of treatment and arrange a transfer. If they can’t, the life-extending treatment can be terminated over the patient or surrogate’s objection—meaning the patient will be forced into a death at a time when life could have been maintained.
To fully comprehend the unjust nature of Texas law in this regard, realize that these “futile care” or “inappropriate care” decisions do not terminate treatment because it won’t work, but because it does. It is keeping the patient alive when the doctor/bioethics committee thinks the patient should die.
This isn’t an objective medical determination, but a subjective value judgment. And given the subjective nature of such decision making—which involves the question of whether the among of suffering the intervention may cause outweighs the desire to maintain life—the law should give the ultimate power to decide such questions to patients, families, and duly appointed surrogates who know the patient most intimately, not to bioethics committee members who are strangers to the patient.
THE TEXAS APPROACH IS INHERENTLY UNFAIR
It is worth noting that Texas Attorney General Ken Paxton has filed an amicus legal brief in the case of Kelly v. Houston Methodist Hospital admitting that the law, as currently written and implemented, unconstitutionally violates the Due Process clause. Among the reasons General Paxton recited for his legal opinion included:
- Denial of life-sustaining treatment violates the constitutionally protected right to life;
- The law does not provide a meaningful opportunity to be heard; and
- The law does not provide an impartial arbiter. Let me pause on this last point for a moment. Consider the daunting scene faced by a family facing a committee hearing. They already face the strain of a loved one’s catastrophic illness. They have withstood weeks of persuasion by the doctor—and perhaps other care professionals—to turn off the machines. And now, as they enter the hearing room, they will find themselves facing a group of people all of whom have a significant connection with the hospital, many as colleagues; nurses, social workers, a chaplain, perhaps volunteers from the community. Some, perhaps all, of the members will know the doctor in question. At the very least, many will reflect the views of the institutional culture. Would any of you like to have a question of life or death decided in such a setting?
Now, in addition to the above, let me add in a few other issues that make the committee quasi-judicial process inherently unfair. Consider what families—your constituents—face when striving to save their loved one’s life in front of the committee. These will be people in a crisis: A loved one is lying in a hospital bed away from home—seriously, perhaps deathly, ill. We have all experienced the stressful and emotionally draining experience of having a loved one’s life hanging in the balance. Adding the additional and onerous burden upon people who are in such demanding circumstances–to, in essence, require them to fight for their loved one’s life against their own doctor—is simply beyond the pale.
Now consider these unfair features of the current quasi-judicial bioethics committee hearing system:
- The decision is made behind closed doors.
- There are no enforceable uniform rules of procedure.
- There is no formal record kept of the kind one would see in a court proceeding, meaning that no transcript is made of the testimony of witnesses.
- There no right to cross examination of witnesses as one would have in court.
- There is no right to appeal.
More than that, the bioethics committee as the “decider” of life or death is the antithesis of social justice. Many simply will not be able to stand up to the rigors of the process. Maneuvering through the medical system is a daunting task for anyone, particularly those untrained in the field. Asking people who may not have the education, life skills, or ability to carry the burden of removing an unwanted order is unfair and unwise. It will breed distrust in the medical system and lead many to conclude—whether rightly or wrongly—that in a time of health care cost cutting, their loved one was crassly deemed too expensive to save.
Finally consider this point: The system is completely arbitrary. There is no consistency. Different patients with similar conditions could face very varying fates simply because of the hospital they happen to be in. What one hospital bioethics committee might consider “inappropriate” life-sustaining treatment another’s might consider perfectly appropriate and in keeping with good medical practice. Considering that the stakes don’t get any higher than life or death, the current system shocks the conscience.
SB 2089 and 2129 OFFER A REASONABLE COMPROMISE BETWEEN PATIENTS RIGHTS AND DOCTORS’ VALUES
SB 2089 does not make doctors and institutions “slaves” of families. It would not require, for example, a doctor to perform brain surgery on a patient with metastatic cancer throughout his body. Rather, it would restore the proper mediating relationship between bioethics committees and patients. Knowing that they couldn’t impose their will on patients and families, the committees could focus on a proper conciliatory approach to differences of opinion about the proper way forward.
The bill would not prevent a committee from determining that continuing life-sustaining treatment was “inappropriate.” But it would prevent them from unilaterally imposing this view on objecting patients by simply requiring that the requested care continue until a new doctor was found willing to provide the treatment or a new institution was found. No reasonable patient wishes to be in a conflict situation with a doctor, nor do doctors enjoy an adversarial relationship with families.
Allowing for bioethics committees to express a strong opinion about the situation—but also not permitting the institution to force its will on patients and families—will increase the chances for the parties to achieve a mutually agreeable compromise, allow for greater impetus to find a transfer of responsibility to a different doctor or institution, and lead to greater trust in the healthcare system overall.
SB 2129 would go a bit further, by prohibiting invidious discrimination by hospital bioethics committees against patients with disabilities. It would also bring greater uniformity to committee deliberations by providing guidelines for treatment withdrawal decisions, granting more notice of hearings, and providing for the creation of clear records of proceedings.
Under the present system, it could be all too tempting (and human) for bioethics committee quasi-judicial decision makers to think, “If I were like that, I wouldn’t want to live,”—and to then project their fears and their desires onto the patient in a mandatory ruling. And they would do so thinking they are helping the patient when, instead, they are imposing their own personal values on others. That just isn’t right.
In summary: The TADA law is fatally flawed. Its medical futility provisions undermine patient autonomy and the right of informed consent and refusal. It permits withdrawal of wanted and efficacious life support without consent. It imposes onerous burdens on dissenting patients, families, and surrogates. It is imprecise in its language and overbearing in its effect. Perhaps worst of all, families subjected to futile care impositions could come to believe that their loved ones were seen seen as burdens on society, and thus deemed expendable. SB 2089 and 2129 offer a better and more just way forward.
Thank you for allowing me to share my views. I would be happy to answer any questions you might have.