In Part 1, we reviewed the basic facts of the case of The Gilderhaus Family versus the Mayo Clinic [ed: autoplay warning for that link]. We left off at the concept of “the medical-legal establishment.”
So what is it? Take it away, tsrblke:
"It’s the notion that through a partnership with the state we’ve granted a whole bunch of powers (either directly or indirectly) to medical professionals, and sometimes they actually use them. In this case we see it with the judgement of capacity. Yes, in theory, to have someone declared incompetent you need to go through the courts and show it. Practically speaking, however, judgements of capacity are made all the time by medical professionals and unless someone challenges it (and has the resources to do so) those professionals are usually taken as being correct.
In this particular case we see how that can go horribly awry. Mayo didn’t just say Ms. Gilderhaus lacked capacity: they accused her mother of having a mental illness (even noting there was no formal diagnosis) and used this to send the police after them. (Sadly, disagreeing with doctors is often enough for them to suggest you lack decision-making capacity.)
Honestly, this case could have ended a lot worse. But it cannot be understated how much control the medical-legal establishment has over you in many situations. Sure, if you’re reasonably healthy (mentally and physically) and somewhere between 20-65 you’re somewhat safe from it. (You’ll note I didn’t start at 18, because as we see in this case, the medical-legal establishment doesn’t respect 18 as the age of majority thing all the time.) But lots of circumstances can change this. Do you have kids? A single call from a pediatrician can totally change your life! Has anything happened at all that may call into question your mental capacity? Well then, best have your power of attorney up to date. Do you care for someone who is disabled? The doctors are watching you.
I don’t have any good answers for you here other than “knowledge is power.” Knowing that the medical-legal establishment exists is the first step. Second is forming a good relationship with your providers. If your providers know you and trust you they’re less likely to jump to conclusions. And should the worst happen you may be able to muster them to your defense. This also means being on the lookout for any potential conflicts right off the bat. I’ve been especially open with my pediatrician both that I am a fan of guns, so I’ll be keeping mine thank you very much, and that I have a healthy distrust of the medical-legal establishment and expect her to help me push back should it turn its sights on me. Have backups in mind, should a provider relationship sour, be ready to jump ship quickly. (Obviously, this may not be possible in all cases.)
Lastly, know your options. Mayo totally screwed up here by not calling in an ethics consult. Facially it doesn’t seem like an ethics issue, but in my experience the vast majority of hospital ethics work is conflict resolution. Most ethics teams have at least one person, often several, trained in mediation precisely to avoid this. Mayo should be chastised for not calling in a 3rd party to mediate the dispute between the providers and patients that could have prevented all of this. If the accounts presented by CNN are accurate, this is an unfortunate and avoidable situation that started when a patient and family felt they weren’t be treated with appropriate dignity (and then, in a self-fulfilling prophecy they weren’t treated with appropriate dignity). In the hustle and bustle of academic medicine, this is all too common. An outside consult with a group who’s entire role is the protection of dignity could have helped."
And a heartfelt Thank You to FoIB tsrblke (PhD)!
So what is it? Take it away, tsrblke:
"It’s the notion that through a partnership with the state we’ve granted a whole bunch of powers (either directly or indirectly) to medical professionals, and sometimes they actually use them. In this case we see it with the judgement of capacity. Yes, in theory, to have someone declared incompetent you need to go through the courts and show it. Practically speaking, however, judgements of capacity are made all the time by medical professionals and unless someone challenges it (and has the resources to do so) those professionals are usually taken as being correct.
In this particular case we see how that can go horribly awry. Mayo didn’t just say Ms. Gilderhaus lacked capacity: they accused her mother of having a mental illness (even noting there was no formal diagnosis) and used this to send the police after them. (Sadly, disagreeing with doctors is often enough for them to suggest you lack decision-making capacity.)
Honestly, this case could have ended a lot worse. But it cannot be understated how much control the medical-legal establishment has over you in many situations. Sure, if you’re reasonably healthy (mentally and physically) and somewhere between 20-65 you’re somewhat safe from it. (You’ll note I didn’t start at 18, because as we see in this case, the medical-legal establishment doesn’t respect 18 as the age of majority thing all the time.) But lots of circumstances can change this. Do you have kids? A single call from a pediatrician can totally change your life! Has anything happened at all that may call into question your mental capacity? Well then, best have your power of attorney up to date. Do you care for someone who is disabled? The doctors are watching you.
I don’t have any good answers for you here other than “knowledge is power.” Knowing that the medical-legal establishment exists is the first step. Second is forming a good relationship with your providers. If your providers know you and trust you they’re less likely to jump to conclusions. And should the worst happen you may be able to muster them to your defense. This also means being on the lookout for any potential conflicts right off the bat. I’ve been especially open with my pediatrician both that I am a fan of guns, so I’ll be keeping mine thank you very much, and that I have a healthy distrust of the medical-legal establishment and expect her to help me push back should it turn its sights on me. Have backups in mind, should a provider relationship sour, be ready to jump ship quickly. (Obviously, this may not be possible in all cases.)
Lastly, know your options. Mayo totally screwed up here by not calling in an ethics consult. Facially it doesn’t seem like an ethics issue, but in my experience the vast majority of hospital ethics work is conflict resolution. Most ethics teams have at least one person, often several, trained in mediation precisely to avoid this. Mayo should be chastised for not calling in a 3rd party to mediate the dispute between the providers and patients that could have prevented all of this. If the accounts presented by CNN are accurate, this is an unfortunate and avoidable situation that started when a patient and family felt they weren’t be treated with appropriate dignity (and then, in a self-fulfilling prophecy they weren’t treated with appropriate dignity). In the hustle and bustle of academic medicine, this is all too common. An outside consult with a group who’s entire role is the protection of dignity could have helped."
And a heartfelt Thank You to FoIB tsrblke (PhD)!
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