Charlie Gard and The Texas Advanced Directives Act

Let me be clear from the outset – I think that Texas Health and Safety Code 166.046 is an unwise provision of law and in effect is an unregulated in-house hospital death panel. I don’t think it was intended to be an in-house death panel and operation has expanded beyond intent. I also think that measures along the lines of the code need to be present and that correction rather than repeal is the better course of action.

Fact Pattern

Charlie Gard has a rare mitochondrial disease which is likely going to kill him. However, others with similar diseases have been helped with experimental treatments. At the time of writing, a hospital in the US is willing to treat him with the experimental treatment. The Vatican has agreed to take him into one of their hospitals. The family has financing in place to bring him to the US for treatment and to pay for the treatment. The availability for treatment isn’t in question. Medical providers are willing to treat, his parents are willing to have the treatment, and financing is in place for the treatment. This is not a case of futile care treatment. It may become one, but right now is not. It’s also noteworthy that his court appointed guardian is involved with a “dignity in dying” association. The denial of available care with willing care providers and the particular appointment for court guardian is an affront to moral dignity. While the law in Texas is somewhat different, it’s easy to get in a scenario where the same “good of the patient” analysis is brought before the courts. It’s also not difficult to see a situation with equally bad optics for a potential court appointed guardian.

Ethical Considerations

The Journal of General Internal Medicine has an easy to read article, cited 81 times, discussing considerations in futile care treatment.

The article notes three types of futility: physiologic, benefits-centered, and operationalizing. Physiologic futility means no physiologic benefit results from the treatment. Benefits-centered means the treatment will not benefit the patient. Operationalizing futility is where the cost of treatment exceeds the benefits.

Problem with the Law

This brings us to the problem in the code – no standard for review is set forth. While it’s assumed that benefits-centered review will be used nothing in the code prevents operationalizing futility from being, in whole or in part, the standard of review by the in-house committee.

Let’s assume that a hospital is going to use benefits-centered review at their in-house review. This sets up a situation where they feel that they are acting in the best interest of the patient, and by definition any opposition is not in the best interest of the patient. It’s not a leap to have a hospital file for a guardian for the patient at that point. It fits in with the notion they are acting in the best interest of the patient. It’s presumed that the guardian will come to the same conclusion that the hospital reached, otherwise why file? Nothing in the law prevents an assisted suicide advocate from being the guardian. Now, we have a situation where the analysis is similar to what’s happening in the Charlie Gard proceedings.

If that’s where the situation is headed it’s better to have a jury decide what’s in the best interest of the patient. This is no different than any other civil dispute. The parties are opposed to each other and unable to reconcile without legal intervention. With the possible use of operationalizing review, rather than assume the hospital’s ethical panel is acting in the best interest of the patient, a jury should be making the best interest determination if the hospital wishes to no longer treat on best interest grounds.

Conclusion

We all die. Sometimes medical care is capable of sustaining life, but that medical treatment is futile. If the situation is questionable, then moral dignity requires that benefit of the doubt go to the patient. With the law allowing hospitals to use operationalizing any in-house determination that care cessation is in the best interest of the patient is suspect. A trial by jury is a middle ground compromise that protects moral dignity while preventing futile care.

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