Posted on April 30, 2018 at 8:50 PM
There has been significant worldwide attention on the Jahi McMath and Alfie Evans cases. So, some medical researchers have me asked whether these cases are unique or whether they are just the tip of an iceberg.
Take Jahi McMath first. Brain death cases are just one type or subset of medical futility dispute. Focusing just on that one type of case. In the past five years, pediatric brain death cases going to court in the United States include at least these eight cases:
1. Jahi McMath
2. Israel Stinson
3. Allen Callaway
4. Aden Hailu
5. Isaac Lopez
6. Mirranda Lawson
7. Alex Pierce
8. Areen Chakrabarti
There are more cases if you count both young adults and adults. Furthermore, several published reports from Cleveland Clinic, San Francisco General, and other hospitals shows there are more conflicts than in the past, even if they do not escalate to court.
Are there more cases like Alfie Evans in the United States? Yes, there have been dozens that have escalated to court, plus many more mediated through intramural mechanisms. Still, very few involve the hospital going to court for permission to withhold or withdraw life-sustaining treatment.
First, in California, Texas, and Virginia the burden is flipped: the families must go to court to stop the clinicians. Moreover, that is a widely recommended approach at the institutional level: announce the plan and give the family time to challenge, but do not seek permission from the court.
The consequence of the “ask for forgiveness not permission” approach is that most of the U.S. cases are unlike the UK cases. U.S. clinicians rarely seek ex ante permission. Instead, U.S. cases usually have a different posture. Either (a) families are suing for money damages after the death, or (b) families are seeking to enjoin clinicians from stopping after such a plan has already been announced. When hospitals do get ex ante consent for withholding/withdrawal they usually get consent from a guardian instead of from the parents.
But I make these observations with a small sample size of cases. There appear to be few pediatric futility cases in U.S. courts. Why is that? I am not sure how much is (1) because clinicians are good at avoiding conflict, (2) because ethics consultants are good at resolving conflicts, (3) because clinicians cave in against their judgment, or (4) because a local county court guardianship proceeding is rarely visible or reported.