Even Very Sick Children Deserve Medical Care: Why Every State Needs “Simon’s Law”

Parents of very young, very sick children deserve the right to make medical decisions for their sons and daughters, no matter how difficult those decisions may be.

Kansas Senate Bill No. 437, popularly known as “Simon’s Law,” was recently amended in committee and subsequently passed by the Kansas state Senate. The bill, which most notably requires written parental consent for a Do Not Resuscitate (DNR) order to be added to a minor patient’s medical chart, passed the Kansas Senate with next to no opposition in a final vote that tallied thirty-seven to three. But the nearly unanimous vote doesn’t tell the full story of Simon’s Law. As an inherently pro-life, pro-parental rights bill, parts of the legislation are considered highly controversial. Minor patients, their parents, healthcare providers, and medical institutions disagree over whether the bill is needed and what its impact will be if it becomes law.

Soon, the Kansas House will consider the bill—the next step toward Simon’s Law becoming Kansas state law. The bill is also being pushed in Missouri (H.B. 1915), after a previous version of the bill (H.B. 113) failed in 2015. But despite the initial setbacks in Missouri, the result of the recent Kansas Senate vote has encouraged pro-life and pro-parental rights advocates, who have been the greatest driving force for passage of the bill.

The impetus for the bill came from the death of an infant, Simon Crosier, who was born in 2010 in St. Louis, Missouri, with the chromosomal disorder Trisomy 18. Simon was born alive via C-section, and lived for three months with many complications, including a severe heart defect. After his death, Simon’s mother discovered that a DNR order had been written into Simon’s chart. This order had been placed there by Simon’s medical providers without the Crosiers’ knowledge or consent. Simon’s parents were also shocked to discover that only “comfort feeds” had been authorized for their son, despite their hopes that Simon would grow large enough to be considered for heart surgery.

The Crosiers believe these unilateral decisions were a significant violation of their parental authority, or “autonomy,” in the language of bioethics. Ignorant of the DNR order at the time, they describe feeling helpless and confused at the lack of medical intervention while Simon’s oxygen saturation levels dropped on the day of his death, a mere three days before his scheduled consultation for heart surgery. The Crosiers’ heartbreaking story initially attracted the attention of state lawmakers in Missouri and Kansas, and should continue to spur the push for versions of Simon’s Law across the nation.

Even Very Sick Children Deserve Medical Care

The bill’s pro-life advocates believe that the unilateral entry of DNR orders into minors’ charts is all too common among very young, very sick children. This is especially true for those with chromosomal disorders, which are often deemed “incompatible with life.” Only 50 percent of children with Trisomy 18 who make it to full term are born alive, and many parents are continuously urged to abort these children prior to their birth. If they are born alive, their parents may face great challenges in obtaining any care for their children beyond comfort measures. It is therefore unsurprising that members of the pro-life movement in Missouri and Kansas have taken up the cause of advocating Simon’s Law, in a fight to protect the inherent dignity and right to care that even very sick children possess.

But pro-life arguments aren’t the only reasons for such a law. Parental rights advocates argue that unilateral DNRs for minor children are a clear violation of parental authority. After all, in most circumstances, parents are the natural, legal decision-makers for their minor children. Because infants and very young children are unable to make competent decisions regarding their healthcare, their parents must act as their surrogate decision-makers.

In making medical decisions for children, it is standard practice for the surrogate decision-maker to employ the “best interests standard” for the child, where the decision-makers (i.e., the parents) are encouraged to make decisions in the best interest of their child. This is a different standard from the ones used for once-competent adult patients who have advanced directives (whose wishes we know, and for whom we may therefore apply, the “pure autonomy standard”), or for those who have appointed a durable power of attorney (whose exact wishes we may not know, but for whom we may apply the “substituted judgment standard”). These three standards and the scenarios in which they are typically employed are espoused by Beauchamp and Childress in their seminal text, Principles of Biomedical Ethics, and they form the basis of standard ethical procedures in any healthcare institution. The fact that important surrogate decision-making powers are being withheld from parents of children with chromosomal abnormalities is certainly troubling, and it suggests a need for legal intervention.

A Troublingly Paternalistic Approach

The chairman of the Missouri House Health and Mental Health Policy Committee, Rep. Dr. Keith Frederick (R-121), was recently interviewed about the new Missouri version of the bill. According to Frederick, “the top neonatologists and pediatric experts in the state begged us not to require this,” out of the fear that requiring parents to give written consent for the withdrawal of life-sustaining treatment or for DNR orders would be akin to asking them to “sign the death warrant for their child.”

This quote reveals the highly paternalistic approach taken by some healthcare providers to the medical care of minor children. Someone espousing this view clearly believes that healthcare professionals should make the “tough decisions” that may be emotionally burdensome for parents of very sick children. This is a condescending attitude that undermines the authority of parents, who have the duty and the right to make the decisions they believe to be best for their child. It is also the weakest argument in opposition to Simon’s Law.

While healthcare providers are undoubtedly stakeholders in these scenarios, it is the parents who suffer the biggest impact of their child’s disease, and the ones who will be hurt the most by their child’s death. In this way, parents are perhaps the greatest stakeholders in scenarios involving very young, very sick children. Therefore, parents should be the ones to decide whether a DNR should be issued or life-sustaining treatment stopped for their minor child. It is both unjust and unduly paternalistic for medical providers to do so without first consulting and/or obtaining the consent of the parents (or making a “reasonably diligent effort” to do so, as the amended Kansas language states).

Life-Sustaining Treatment, Parental Consent, and Medical Futility

In addition to requiring parental consent for DNR orders for minor patients, Simon’s Law also requires that any “life-sustaining treatment,” whether “procedures, food, medication, or nutrition,” must not be discontinued without the written consent of “at least one parent or legal guardian of the (minor) patient or ward.” These two provisions are seen as the most controversial portion of Simon’s Law. Additionally, the bill requires that any futility policies held by the hospital or care institution be released upon request of the patient or their guardian, a provision that is viewed as an uncontroversial portion of the bill.

Opposition to the bill’s provisions preventing the cessation of life-sustaining treatment and the enactment of unilateral DNRs for minors centers on the concept of “medical futility,” as evidenced by Professor Thaddeus Mason Pope’s treatment of the topic on his popular “Medical Futility Blog.” In this case, opponents of the bill are chiefly concerned that it will force medical professionals to provide futile care to minor patients.

In the same interview quoted above, Rep. Dr. Keith Frederick voiced his concern that such a scenario “puts the medical team in a very difficult ethical situation and probably one they didn’t sign up for.” Is it possible that Simon’s Law, although intended to remedy the ethical dilemma of violating parental authority, may in fact create a new dilemma by causing medical professionals to provide futile care? Providing such care can waste resources (violating the bioethical principle of justice) and may actually cause healthcare providers to do more harm than good (violating the bioethical principles of beneficence or non-maleficence). This concern gives appropriate credence to the impact on healthcare providers and their institutions, who are both undoubtedly stakeholders in these scenarios.

Important Amendments in Language

In response to such concerns, the Kansas bill’s language has been amended in order to ensure that truly futile care will not be required of medical professionals. In this form, Simon’s Law allows for healthcare providers to exercise their “reasonable medical judgment,” in determining whether an intervention is “futile” or “medically inappropriate.” One would hope that “reasonable medical judgment” encompasses an understanding of truly futile or medically inappropriate care, but perhaps the bill could also benefit from a solid definition of futile care. Including an accurate definition of futility may work to assuage medical professionals’ concerns about being required to provide truly futile care—a requirement that would, in fact, be highly unethical.

Like fellow Public Discourse author Grattan Brown, I would suggest a definition like the one recommended by the American Thoracic Society, which advises that “The term ‘futile’ should only be used in the rare circumstance that an intervention simply cannot accomplish the intended physiologic goal.” As Brown points out, too often, care is deemed “futile” when it may still bring about some benefit to the patient. This imprecise use of the term can breed the irresolvable conflicts seen in situations like baby Simon’s.

There is a clear difference between the futility of a treatment, and the “futility” of someone’s life. Unfortunately, contemporary bioethics often conflates the two. A treatment may be truly futile in the sense that it will not accomplish the intended physiological goal for the patient, rendering it unnecessary (and possibly unethical) to perform. This is an objective evaluation, and no medical professional should be required to provide such treatment; the amended language in Simon’s Law implicitly reiterates that. But too often, providers use the term “futile” in describing someone’s quality of life. To say that an individual’s life is “futile” because it may appear short, difficult, or full of pain, introduces a subjective value judgment that no one but the patient herself (or her surrogate in the case of incompetence) may appropriately or ethically determine. Healthcare professionals should examine their beliefs about “futility,” and take care only to use the term in its objective, medical context, which the amended language in Simon’s Law now encourages.

Although some of the critiques of the original version of Simon’s Law were valid, the amended Kansas committee language protecting the use of a physician’s “reasonable medical judgment” should alleviate the fears expressed by the bill’s opponents regarding the provision of medically futile care. The addition of a clear definition of medical futility would strengthen the bill even more, and might even turn some of the bill’s opponents into advocates. After all, healthcare providers and medical institutions could gain significant legal protection if they are no longer liable for these challenging “life-and-death” decisions for minor children. Missouri, which currently does not include the amended language concerning “reasonable medical judgment” in their version of the bill, should take note of and imitate the Kansas committee’s valuable additions to Simon’s Law. With the proper language included in the bill, many of the original bill’s opponents in both states may turn out to be powerful advocates for Simon’s Law.

Those with the most to gain from Simon’s Law are both very young, very sick children and their parents. Simon’s Law protects the inherent dignity of this highly vulnerable population, giving parents the authority they deserve when making extraordinarily difficult decisions concerning their sick children. Kansas and Missouri should therefore make haste to pass this amended version of Simon’s Law, and other states concerned with protecting this vulnerable population should follow suit.

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