A family blocked brain death testing. What happens next?
Industry Buzz
If you’re going to get medical care, you have to allow physicians to know critical information that they need to be able to do their job, or you have to basically opt out of the medical system.
—David Magnus, PhD
Delaying brain death determination has several consequences. First, this can lead to prolonged use of ICU-level resources, which comes with excessive cost as well as [a] lack of space for other patients.
—Ryan Martin, MD
A family has sued Texas Children’s Hospital over brain death testing.[] Experts say the lawsuit raises alarm bells about what could happen if brain death testing can be refused.
“Physicians should be allowed to go forward with testing, and I’m worried about the ability to refuse testing [and] where it might lead,” David Magnus, PhD, a professor of medicine and biomedical ethics at Stanford University, tells MDLinx.
Related: 2 high-profile cases this summer beg the question: Should pediatric death pronouncement require another safeguard?The Camp family sued the hospital to stop brain death testing on their 2-year-old daughter Annelise following a drowning incident on Memorial Day.[]
The Texas Tribune reported that, according to court documents, the Camp family argued Annelise shouldn’t undergo brain death testing so she can have more time to recover. They also requested a transfer to a different hospital to explore other options.
According to the court documents, Texas Children’s officials said they had contacted other medical facilities to accept transfer of care of Annelise, but 35 of the 36 declined, and one said Annelise would need to undergo brain death testing before they could consider transfer.
The Camp family is working with the anti-abortion group Texas Right to Life, which posted an update in late June stating that Annelise had been transferred to a hospital in Louisiana.[]
Determining brain death
The case comes amid some pro-life groups arguing against brain death testing and diagnosis.
“Some really hard things … are going to come down the pike if Texas moves forward with the most draconian approach that’s been proposed, which is to eliminate brain death as death,” Dr. Magnus says.
He argues it is worrying.
“If you’re going to get medical care, you have to allow physicians to know critical information that they need to be able to do their job, or you have to basically opt out of the medical system. In this case, they need to know whether … they are dealing with a living patient so … they can do what they can to try and rescue the patient, if that’s still possible. And without testing, they will not be able to know the answer to that question,” he says.
“The state of Texas, under the Texas Advance Directives Act, does allow clinicians—even for patients who are not dead—to say that they regard continued treatment and support in [the] ICU to be medically inappropriate care, and they have some prescribed processes that they can go through. If they go through those processes, then the family would have a time-limited opportunity to try and arrange a transfer to another institution, which in this case the family has done,” Dr. Magnus adds.
The consequences of delaying brain death testing
Ryan Martin, MD, FNCS, an associate professor in the Departments of Neurological Surgery and Neurology at UC Davis, tells MDLinx that there can be numerous downsides to delaying brain death testing.
“Delaying brain death determination has several consequences. First, this can lead to prolonged use of ICU-level resources, which comes with excessive cost as well as [a] lack of space for other patients. Second, patients often have progressive physiological deterioration as time goes on, requiring more support to prolong life,” he says.
“There can be a significant emotional burden on families, which include, but are not limited to, prolonged uncertainty, delayed grieving, and false hope. Fourth, there can be significant moral distress placed on healthcare providers in these situations, which can lead to emotional exhaustion, conflict within the care team, and inconsistent communication with families,” Dr. Martin says.