UPDATED: Considerations on the Use of Neonatal and Pediatric Resuscitation Guidelines for Hospitalized Neonates and Infants

It's always a big deal when the American Academy of Pediatrics and the American Heart Association  publish an update on the use of resuscitation guidelines for neonates and infants. The latest dropped Dec. 18 (Volume 153, Issue 1. January 2024). The guidelines are different for the two groups, and deciding which guidelines to follow appears to be as much art as science. From the Conclusion: "The lack of robust scientific data makes it impossible to provide definitive recommendations on when to transition from neonatal to pediatric resuscitation guidelines for hospitalized neonates and infants." 

Also missing are a feature of the AHA Guidelines for resuscitation in adults: a section on decisions to withhold resuscitation based upon a futility determination.

The Hidden Harms of CPR

In a truly great article this past weekend in The New Yorker, Dr. Sunita Puri describes the conundrum around the use of cardiopulmonary resuscitation, especially in hospitals, and most especially for patients with terminal diagnoses (limited free access is available). 

The thing is, CPR is ineffective at treating the underlying condition that is bringing about the patient's death. And even as a stop-gap to allow treatments to take effect, it mostly works in a small cohort of patients:

CPR can save lives when patients are relatively healthy, and when the cause of their death is reversible or unclear. Damar Hamlin, the Buffalo Bills player whose heart stopped during a nationally televised game in January, typifies the person for whom CPR was invented: young and fit, and the victim of a sudden, treatable injury rather than a progressive disease. Still, less than ten percent of people who receive CPR outside a hospital survive. Inside hospitals, where CPR begins quickly, the odds are slightly better, but only for those who aren’t in the last stages of life. A mere two per cent of adults over sixty-seven with severe chronic disease, including cancer, are alive six months after CPR, and they often deal with pain, physical debility, and post-traumatic stress disorder. Reversing a death is not the same as restoring a life.

And yet doctors, including a younger version of the author, often give families the choice of performing CPR or not without offering the grim statistical chance of failure, giving the impression that they are choosing between life or death. Families and physicians alike are traumatized in these situations because the truth is not easy to discuss. 

Texas is one of the few states in the country that offers legal protection for physicians who resist requests for medically inappropriate treatment (Ch. 166, Tx. Health & Safety Code). It was amended in 2017 to add Subchapter E, which may fairly be characterized as hostile to do-not-resuscitate (DNR) orders. The unfortunate result has been to sow confusion and doubt about when a hospital DNR order may be written and, once written, when it may or may not be followed. The need for such a law was dubious at the time, and although amendments have provided some clarity, Subchapter E stands as a prime example of the unwisdom of legislatures prescribing standards of care.

"Futility" Policy at Mass General Hospital

Thad Pope has alerted us to the publication of a report from within Massachusetts General Hospital, "Declining to Provide or Continue Requested Life-Sustaining Treatment: Experience With a Hospital Resolving Conflict Policy." It's apparently "open access" and is available in HTML as PDF. The report is well worth reading, for a number of reasons:

• Texas has had a statutory policy for 23 years. It is, like the MGH policy, an example of a "due process" approach to resolving disputes over life-sustaining treatment (LST). A hospital policy without statutory protections for participants in the process leaves the hospital legally exposed, which is bound to have an effect on how the process plays out in real time, but it is still possible to learn some valuable lessons from a stand-alone hospital's experience.
• The report covers 20 years' worth of cases that were handled under the MGH policy.
• It demonstrates a pattern that I have experienced in Texas hospitals: The futility policy gets invoked in an almost vanishingly small percentage of cases in which it could be useful.

There are many aspects to futility disputes that are outcome-determinative in terms of the utility of invoking the policy. In other words, details concerning the family dynamics, patient characteristics, and the treatment team's history with patients and surrogates (or lack thereof) may be more important to achieving a satisfactory than the policy itself. The policy, however, does provide some degree of rigor and consistency from patient to patient. Whether the results justify the existence of a policy is very much in the eye of the beholder. The MGH report is a good place to start.

The High Costs of Non-Beneficial Treatments in the ICU

Thad Pope has a useful post on this subject. There are direct medical costs (estimated at $2,700/day (Ottawa study) to $4,000/day (UCLA study)), but equally if not more concerning "may be (a) the opportunity cost when other patients are denied ICU care, (b) moral distress of the nursing staff, and (c) suffering inflicted on the patient." 

None of this seems to matter to the legislators in Texas who try, every legislative session, to gut the provisions of the Texas Advance Directives Act that were added in 1999 to deal with disputes over medically inappropriate treatment. The provisions are at Tex. Health & Safety Code § 166.046. The purpose of the law was to provide a nonjudicial mechanism for resolving these disputes. The key provision is in subsection (d), which -- after reasonable efforts over a 10-day period to find a provider willing to provide the treatment requested by the surrogate decision-maker fail to identify a provider willing to accept transfer of the patient -- permits the disputed treatment to be withheld or withdrawn.

The objectors in the legislature want to replace that 10-day process with a provision that requires the health care providers to "treat until transfer." This benign-sounding idea would mean that, in the vast majority of cases in which no transferee provider can be found, medically inappropriate treatment must be provided until death occurs, which may be months or even years later. A current example is the Tinslee Lewis case in Fort Worth, which has been in litigation for over two years. According to a motion filed by defendant Cook Children's Hospital, 

a review of Tinslee’s case was initiated by third-party administrator Aetna’s Special Investigative Unit, which has requested all of Tinslee’s records. The Special Investigative Unit’s mandate under Medicaid regulations is to investigate “waste, abuse, and fraud,” the motion says.

“In Cook Children’s experience, such reviews are often precursors to efforts to deny payment or even claw back funds previously paid,” the motion said.

As reported by the Fort Worth Star-Telegram, the Texas Supreme Court on Friday declined to review the order of the Second Court of Appeals (Fort Worth) in the Tinslee Lewis case. This keeps in place the court of appeals's order that requires Cook Children's Hospital to continue aggressive life support for the one-year-old pending a full trial on the merits of her mother's suit against the hospital. As Thad Pope points out, this case challenges the constitutionality of § 166.046 of the Texas Health & Safety Code, our so-called "futility provision" of the Texas Advance Directives Act. 

The briefs for and against the lower court's ruling, which -- though not disposing of the constitutionality question -- gave a very strong indication of its inclination to strike down the law, are here. It probably goes without saying, as someone who worked (with many others, including National Right Life and Texas Right to Life, before they changed their mind about the law) to draft this law more than 20 years ago, that I am persuaded by the briefs that argue to uphold the law, which passed both houses of the state legislature without a single nay vote.