Daily Mail Reporter
Last updated at 4:37 PM on 4th March 2011
A grandmother who suffered severe brain damage when she had a stroke last April has had her feeding tube removed and is now dying of starvation because she does not have health insurance.
Against the wishes of her six grown-up children, Rachel Nyirahabiyambere had the tube removed on February 19 on the orders of a court-appointed guardian.
The 58-year-old, who has been in a 'persistent vegetative state' since the stroke, had spent eight costly months at Georgetown University Medical Centre before being transferred to a nursing home in Millersville, Maryland.
Tough choices: Brothers Jerome and Gratien, the sons of Rachel Nyirahabiyambere, outside the nursing home in Maryland where she is staying
Because Mrs Nyirahabiyambere, who is Rwandan and has legal permanent resident status, has been in the U.S. for less than five years she is not eligible for the Medicaid coverage that would have paid for her to live indefinitely with a feeding tube in a nursing home.
Her case highlights the heartbreaking issue of decision-making on behalf of brain-damaged patients whose lives are sustained by expensive medical technology.
'We are powerless spectators, just watching our mother die,' said Jerome Ndayishimiye, 33, who teaches health information management at the State University of New York’s Institute of Technology in Utica.
'In our culture, we would never sentence a person to die from hunger. It's all about money.'
Frustrated in its efforts to discharge Mrs Nyirahabiyambere, the Georgetown medical centre filed a court petition in November to appoint a guardian to make decisions that the family would not make.
A circuit court judge appointed lawyer and nurse Andrea Sloan.
The judge noted that the sons 'have not accomplished making arrangements for a medically appropriate discharge.'
Mrs Sloan arranged to transfer Mrs Nyirahabiyambere to a Maryland nursing home before being placfed in hospice care.
She said that while understandably traumatized, the family was repeatedly avoiding difficult decisions.
Mrs Sloan eventually told the sons she would disconnect their mother unless they could demonstrate that she wished to live out her life 'with a feeding tube, in diapers, with no communication with anyone and in a nursing home.'
The case is a stark reminder of the furore surrounding President Obama's health overhaul bill. After a proposal to encourage end-of-life planning caused controversy over what opponents termed death panels, Obama promised that his programme would not 'pull the plug on Grandma.'
Mrs Nyirahabiyambere worked as an elementary school teacher in Butare, Rwanda, until a civil war erupted in 1994, forcing her family to flee to refugee camps in Congo.
When violence flared in the camps the family separated and hid in the jungle. In 2000, international humanitarian groups designated the two oldest sons as refugees and they settled in Buffalo.
While there, they earned degrees, started their own families and after becoming American citizens they sponsored their mother, who had been widowed in 2000, for legal permanent residency.
She landed in the U.S. in 2008 and found work with health care benefits as a laundry attendant. She lost those benefits, however, when she moved to Virginia to look after her grandchildren when her oldest relocated there for a new job.
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