Why an American lawyer is pulling the plug — literally — on a Rwandan refugee

There’s a lot to be horrified by in this New York Times story about the treatment of a Rwandan refugee named Rachel Nyirahabiyambere, in a vegetative state since a coma last year, by Georgetown University Hospital.  The hospital essentially forced the family, who couldn’t pay for continued care, to pull the woman’s feeding tube by getting a judge to rule that they were incompetent guardians.  The hospital then asked a court to appoint a new legal guardian — someone a lawyer on the hospital’s dime had recommended.  Coinkydink!

But maybe the most horrifying part of the article is the new guardians’ utter idiocy:

“Ending someone’s life by hunger is morally wrong and unrecognized in the culture of the people of Rwanda,” one son wrote to Ms. Sloan [court appointed-legal guardian for the woman].

Ms. Sloan said that she listened to the family but that “respect does not mean acquiescence.” In e-mails to the sons, she wrote: “You have asked for understanding about your culture and that is exactly what I am trying to do. Feeding tubes are not part of your culture, are they?”

This Sloan person is now the legal guardian of  Ms. Nyirahabiyambere.  Solan was appointed by a judge at the request of the hospital — and chosen by the judge on the recommendation of a lawyer who had been paid by that hospital, according to the Times.  (Allegedly Sloan is also rumored to be the author of a master’s thesis entitled, “The Manifest Destiny of Feeding Tubes: How expensive medical supplies transcended medical utility, assimilated into the culture and came to symbolize American exceptionalism.”*  Or maybe I made that part up.)

Sloan was appointed because Nyirahabiyambere’s two sons — Jerome Ndayishimiye and Gratien Ndagijimana, adults with jobs, family and U.S. citizenship — were deemed unfit guardians.  Why?  As the hospital put it in its statement to the NYT, “We only take this somewhat unusual step when there is a concern that the family members are legally appropriate decision makers.”

That appears to mean, We’ve already told these damn kids to take their mother off life support several times, and they refuse. In requesting to keep their mother on life-support, they are obviously they’re totally unfit guardians of her welfare.

But oh, you know those Africans… always trying to pretend feeding tubes are part of their culture, and just sneak a little more time in for their parents. They can’t accept reality. I mean, do you remember when they tried telling the Belgians that Hutu and Tutsi weren’t different races, and that one of them wasn’t demonstrably (“we used the calipers!”) more intelligent than the other?  There’s just no reasoning with them…*

Court-appointed-guardian Sloan also told the two men she would not reverse her decision to remove the feeding tube unless they could prove their mother would want to live “with a feeding tube, in diapers, with no communication with anyone and in a nursing home.”  Baby-boomers’ children, take note, and get your parents’ wishes in writing, down to the diapers.  By the way, the Times says Sloan is also a nurse.

But let me back up a minute.  For reasons I don’t understand, I’ve spent an inordinate amount of time in the last year talking to Rwandans about food. The cultural place of food here is completely different than anywhere I’ve ever been. What I’ve learned is that food is personal, private, and preeminent — the most important thing one can have, but also the most important thing one can share. I’ve found among the poorest people I’ve seen sharing food with those much better off… but there’s a ritual to this, a place the food, and conversation about it, belongs, and many places it does not. Food as a cultural item here is incredibly complex.  It’s not even my cultural complexity, and I’m insulted by Ms. Sloan’s jagged ignorance.

So beyond the neo-colonial infantilization of Ms. Sloan’s statement about feeding tubes, with all its trademark simultaneous arrogance and foolishness, the idea that the private hospital — and, on its behalf, the State of Virginia — is willfully depriving this woman of food…  Well, “unrecognized in the culture of Rwanda” is an incredible rhetorical kindness. Especially given the grief they must be feeling.  I would not be nearly so linguistically restrained.

The article raises all kinds of questions about American health care, of course — the kind of questions that we really should grapple with but will instead probably just amount to yet more navel gazing.

In the meantime, someone should apologize to Jerome Ndayishimiye and Gratien Ndagijimana. Whatever one thinks about how to spend health care resources, or about which culture should “win” in a clash over end-of-life values, if the NYT story is accurate, no one involved in this case has done the service any one human being should do for another human being who’s mother is dying — listen.

(Hat tip — or rather, total removal of said hat — to Glenna Gordon for emailing me the story.)

UPDATE:  A Virginia judge ordered the feeding tube restored, after a petition from the Alliance Defense Fund which followed the original NYT piece.

*Satire.