Rwandan family left on sidelines as mother lies in Maryland hospital in persistent vegetative state

From The NY Times:

MILLERSVILLE, Md. — When Jerome Ndayishimiye (left in picture) entered the overheated room at the nursing home where his 58-year-old mother lay under a tightly tucked blanket, he quickly closed the curtains around her bed and turned on her boom box so that a melodic Rwandan song enveloped them. He stroked her forehead and her eyes fluttered open and closed again.

“At this point, I do not know whether to say hello or goodbye,” Mr. Ndayishimiye said Saturday, choosing instead to ask her softly, in their native language, how she was feeling. She stirred again but did not answer; Rachel Nyirahabiyambere, a legal immigrant from Rwanda, has been in a persistent vegetative state since having a major stroke in April.

On Feb. 19, Ms. Nyirahabiyambere’s feeding tube was removed on the order of her court-appointed guardian. Her six adult children — including two United States citizens — vehemently opposed that decision. But they were helpless to block it when Georgetown University Hospital, frustrated in its efforts to discharge Ms. Nyirahabiyambere after she had spent eight costly months there without insurance, sought a guardian to make decisions that the family would not make.

“Now we are powerless spectators, just watching our mother die,” said Mr. 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.”

Decision-making on behalf of patients in persistent vegetative states is always a delicate matter, especially if, like Ms. Nyirahabiyambere, they have not left a directive. Her case, which has received no public attention, underscores the thorny issues that arise when a severely brain-damaged person’s life is sustained by medical technology.

With thousands in persistent vegetative states, the issues regularly surface in hospitals and courtrooms — what constitutes “futile care,” what power should doctors or lawyers have to stop treatment and what role should financial considerations play.

In Ms. Nyirahabiyambere’s case, her immigration status adds another layer of complexity.

With less than five years in this country, she is ineligible for the Medicaid coverage that would have paid for her to live indefinitely with a feeding tube in a nursing home. As her children see it, her life is being cut short because she is an indigent immigrant. “It’s all about money,” Mr. Ndayishimiye said.

But her guardian, Andrea J. Sloan, said that prolonging the life of “someone profoundly vegetative” would be questionable even if insurance were available because palliative care is more appropriate. “The essential question of the feeding tube has nothing to do with nationality or payor source,” she said.

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said the case underscores that “end-of-life decisions have to be treated with great sensitivity — and, ideally, with families fully involved and respected.”

He added: “Any hint that withdrawing treatment might be linked to financial considerations — that’s a huge ethical no-no. That’s death panel stuff.”

During the debate on the health care overhaul, after a proposal to encourage end-of-life planning provoked a furor over what opponents termed death panels, President Obama promised that his program would not “pull the plug on Grandma.” Medicare now covers “voluntary advance care planning,” which proponents see as protecting patients’ autonomy.

Before her stroke, Ms. Nyirahabiyambere took medication for high blood pressure but otherwise appeared healthy, her sons said. Family pictures show a youthful, smiley grandmother wrapped in a fish-patterned African skirt, carrying a grandson in a matching baby sling. She had been an elementary school teacher for most of three decades in Butare, Rwanda.

When the Rwandan civil war broke out in 1994, Ms. Nyirahabiyambere, her husband — a Baptist minister — and their six children fled to refugee camps in Congo (then Zaire). Two years later, after violence erupted in the camps, the family was forced to separate and endured years of trekking and hiding in the jungle. In 2000, international humanitarian groups designated the two oldest sons as refugees and resettled them in Buffalo.

While working menial jobs, the brothers earned two bachelor’s and four master’s degrees between them and started families of their own. They quickly earned United States citizenship and soon sponsored their mother, who had been widowed in 2000, for legal permanent residency.

After she arrived in 2008, from Rwanda, Ms. Nyirahabiyambere found work, with health care benefits, as a laundry attendant in a nursing home. When her oldest son moved to Virginia for a new job, she accompanied him so she could help care for his children, losing her health insurance in the process.

After the devastating brain hemorrhage in April, Ms. Nyirahabiyambere never regained awareness. Her sons held out hope that her condition would improve. After seven weeks, hospital officials started trying to discharge Ms. Nyirahabiyambere.

In some cases where illegal immigrants or new immigrants require long-term care, hospitals have taken to repatriating them, a practice that advocates for immigrants condemn.

Georgetown University Hospital told Ms. Nyirahabiyambere’s sons to find a nursing home, take her into their own homes or send her back to Rwanda. But, the sons said, without private insurance or Medicaid to cover a nursing home or home health attendant, none of those options was feasible. They said they understood that the hospital was a business and not a charity but simply did not know what to do. They stalled, and tensions between the family and the hospital escalated.

In November, the hospital filed a court petition in Alexandria, Va., seeking to have a guardian appointed. The hospital declined to discuss the case, citing patient confidentiality, but stated, “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 Dec. 28 before Judge Nolan B. Dawkins of Alexandria Circuit Court. Ms. Nyirahabiyambere’s sons requested that she be appointed a separate lawyer; she was not, although John M. Powell, a board member of the Virginia Guardianship Association, said she should have been, given the complexities of the case.

The sons pleaded for the family to retain the power to decide their mother’s fate. But Judge Dawkins appointed Ms. Sloan, who is a lawyer and nurse, as Ms. Nyirahabiyambere’s guardian on the recommendation of a lawyer who had reviewed the case for the court and had been paid by the hospital. The judge noted that the sons “have not accomplished making arrangements for a medically appropriate discharge.”

Ms. Sloan quickly arranged to transfer Ms. Nyirahabiyambere to a Maryland nursing home. The hospital agreed to cover the home’s costs, although it had not offered to do so when the family was agonizing over how to deal with their mother’s situation.

The nursing home stay was destined to be short-lived. Ms. Sloan, who said she is not being paid by Georgetown University Hospital or by anybody else at this point, placed Ms. Nyirahabiyambere into hospice care. She said the family, while understandably traumatized, was nonetheless avoiding difficult decisions.

“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,” Ms. Sloan said in an e-mail. “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?”

Ms. Sloan said she could not get the family to participate in meetings she convened. The sons told her in phone conversations and e-mails that they supported “do not hospitalize” and “do not resuscitate” orders. But they said that their mother would not have wanted the feeding tube removed after a life spent struggling to survive war and privation.

“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.

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?”

She said 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.”

Some guardians said they withdrew life support only if they felt certain about what the patient would have wanted. “My bias was if there was any doubt I always erred on the side of life, because erring on the other side was irreversible,” said Robert Fleischner, a lawyer at the Center for Public Representation in Massachusetts.

As of late Thursday afternoon, almost two weeks after the feeding tube was removed, Ms. Nyirahabiyambere was still alive.