Surrogate Selection in Another Futility Dispute: Rachel Nyirahabiyambere

In April 2010, Rwandan immigrant Rachel Nyirahabiyambere suffered a devastating brain hemorrhage.  She never regained awareness.  After several weeks, Georgetown University Medical Center tried, unsuccessfully, to discharge her.  (NY Times)  Then, in November, the hospital filed a court petition in Alexandria, Va., seeking to have a guardian appointed.  The hospital explained: “We only take this somewhat unusual step when there is a concern that the family members are legally appropriate decision makers.”  A brief hearing took place December 28.  The sons pleaded for the family to retain the power to decide their mother’s fate.  But the judge appointed Andrea Sloan, a lawyer and nurse, as Ms. Nyirahabiyambere’s guardian.  Ms. Sloan transferred Ms. Nyirahabiyambere to a nursing home.  Ms. Sloan then directed that Ms. Nyirahabiyambere’s feeding tube be removed.  

So far, this is not terribly different than other surrogate selection cases.  But there are two disturbing aspects of this case.  First, there is some evidence that the patient would have wanted at least the feeding tube.  Her six adult children vehemently opposed the removal decision.  “Ending someone’s life by hunger is morally wrong and unrecognized in the culture of the people of Rwanda.”  But the guardian said that she would disconnect the patient unless her sons could demonstrate that she wished to live out her life “with a feeding tube, in diapers, with no communication with anyone.  In other words, the guardian appears to have made decisions on a pure best interest standard unless the family produced clear and convincing evidence of patient wishes otherwise.  This flips the presumption in favor of life, requiring evidence that the patient wanted to live rather than the typical requirement that the patient did not want to live under the circumstances.  It also demands more specific evidence than is typically demanded.

Second, money appears to have played a larger role in this case than in some others.  Ms. Nyirahabiyambere was uninsured.  The guardian wrote:  “Hospitals cannot afford to allow families the time to work through their grieving process by allowing the relatives to remain hospitalized until the family reaches the acceptance stage, if that ever happens . . . .  Generically speaking, what gives any one family or person the right to control so many scarce health care resources in a situation where the prognosis is poor, and to the detriment of others who may actually benefit from them?”