Hold the Mayo - Part 1

Readers may be aware of a recent story from Minnesota [ed: autoplay warning for that link] involving a young woman with a brain injury, her parents, and the famed Mayo Clinic. The gist is that she and her family were (allegedly) unhappy with her care, and sought to obtain it elsewhere. The Mayo docs put the kibosh on that, so the young lady's parents devised a plan to arrange her "escape."

The folks at Mayo and those at CNN are at odds about what really happened; it seems to me that the latter have more credibility here than the former (yeah, I know).

But the reason for this post is to present a primer on the medical ethics involved in disputes such as this. Regular reader and FoIB tsrblke has a doctorate in this discipline, and offers this explication:

"Out of Minnesota we have an interesting case of a patient who left Mayo Clinic “against medical advice.” Was she kidnapped, or did she run away?

Well that depends on whether you’re the family or the doctors at Mayo. The crucial facts are as follows:

1) 18-year-old patient has a brain aneurysm on Christmas day.
2)  Eventually she makes it to Mayo, after a brief stay at a local hospital, where, against all odds she survives and enters inpatient rehab.
3) The relationship between the hospital and the patient/family breaks down and everything goes to hell.

Sadly, #3 isn’t entirely uncommon, though the escalation here was beyond nuts (we’ll get to that in a second.) It’s not entirely clear what caused the breakdown, but it seems to have started with a disagreement over pain management.

Now one could write an entire essay on pain management problems, and I don’t really want to get caught in what amounts to an aside, because what happened next is where the meat of this particular case is.

Basically, as the relationship between the hospital and family deteriorated beyond repair, the hospital escalated  the situation to the point of, allegedly, trying to have Ms. Gilderhaus declared a ward of the state. I want to emphasize how incredibly extreme this is. Even assuming for argument’s sake that Ms. Gilderhaus lacked mental capacity - that is, that her brain injury interfered with her ability to make decisions (which seems unlikely for reasons we’ll get to in a moment) - there are several possible surrogate decision makers that could be used prior to going to the state. Obviously, there’s the mother. Depending on various legal circumstances the stepfather may be able to fill that role. And there’s the biological father (who’s mentioned briefly in part 2 as being asked, but it’s never explained why they went for state control instead.) Based on the information given, none of these potential surrogates has done anything that would suggest they cannot handle the duties. Indeed, they’ve done everything thus far suggesting they care deeply for their daughter. So what was their great sin in the eyes of Mayo? They didn’t like the care and wanted to transfer her to another facility.

Let’s be clear, based upon the way it’s presented, they didn’t want to just up and leave (until the escalation reached stratospheric levels) they just wanted to go somewhere else. That’s not a crazy idea by any stretch. Nothing indicates she can’t be transferred, and there’s no mention of any reason they couldn’t find another provider. (Admittedly we only have one side of the story, but Mayo is refusing to say much at all despite all the HIPAA waivers, which suggests, to me at least, their defense would be weak.)

Now is a good point to introduce a term I’ve used among my colleagues: the “medical-legal establishment.” What is the medical-legal establishment?"

We explore that, and its implications, in Part 2.

Thanks, tsrblke!