Three ways of dying

Michael Cook
8 March 2011
Reproduced with Permission

This is about three women and death: one is Indian, one is Rwandan, and one is American. They come from very different cultures and they are dealing with the end of life in very different ways. One of them is particularly sorrowful -- but it is the shame that hurts, not the pain.

Let's take the Indian woman first. Her name is Aruna Shanbaug. She was a nurse in King Edward Memorial hospital in Mumbai. In 1973 she was strangled and sexually assaulted in a ward. Now she lives in a twilight zone of her own where she can barely move. She cannot speak. She cannot feed herself or clean herself. Her family and her fiancé abandoned her long ago.

But for 38 years the hospital nursing staff have been caring for her. They fiercely resisted an attempt by an activist to remove Aruna's feeding tube so that she can starve to death. The case went all the way to the Supreme Court of India, which released its judgement yesterday. This denied the request to end Aruna's life.

"The whole country must learn the meaning of dedication and sacrifice from the KEM hospital staff. In 38 years Aruna has not developed one bed sore," the judges said. They praised "their noble spirit and outstanding, exemplary and unprecedented dedication in taking care of Aruna for so many long years. Every Indian is proud of them."

This was the best-ever present for International Women's Day, the nurses declared. "Aruna was ours, and will always remain so," said Agnes Thomas, a nurse who has been working in the hospital for the last 35 years. "Her family stopped visiting her some years ago. She belongs to our family. We are not under any obligation to care for her but we do it because we feel a kinship towards her."

And Dr Sanjay Oak, dean of the hospital, told the media: "It was not a matter of victory or defeat. I am happy that humanity has won."

Next, there is the Rwandan woman. Her name is Rachel Nyirahabiyambere and she is a 58-year-old legal immigrant to the United States. She spent years as a refugee in the jungles of the Democratic Republic of the Congo before following two of her sons to the United States. When her eldest son moved to Virginia, she quit her job, lost her healthcare benefits and followed him to help care for his children. She was also ineligible for Medicaid because she has not lived in the US for five years.

Last April, she had a stroke which left her in a permanent vegetative state. She was being cared for at Georgetown University Medical Center, a Catholic hospital in Washington DC. After seven weeks, the hospital tried to discharge her, as caring for her was very costly. According to the New York Times, the hospital set down three options for her sons: to find a nursing home, to take her into their own homes or to repatriate her to Rwanda.

The sons responded that they could not afford any of the options. In December, the stalemate was broken. At the request of the hospital, Alexandria Circuit Court in Virginia appointed a guardian. The guardian acted quickly. Ms Nyirahabiyambere was transferred to a nursing home and in mid-February, despite anguished protests from her sons, her feeding tubes were removed.

So at this very minute Rachel Nyirahabiyambere is starving to death in Millersville, Maryland. The hospital which organised this barbarity declares on its website that "Our mission is carried out with a strong emphasis on community outreach and a dedication to the Catholic, Jesuit principle of cura personalis - which means 'care of the whole person'."

Doesn't care of the whole person include food and water? The nurses at King Edward Memorial, which is not one of the world's leading hospitals, gave Aruna palliative care for 38 years without complaint. But for one of America's finest, palliative care evidently means a slow death by starvation.

"In our culture, we would never sentence a person to die from hunger," says one of her sons, Jerome Ndayishimiye.

The third woman is an American, Andrea J. Sloan. She is a nurse and a lawyer and also the court-appointed guardian for Rachel Nyirahabiyambere. It was she who ordered the feeding tubes to be removed. Deborah Sontag, the New York Times reporter, obtained copies of her communications with Rachel's sons. They do not make pleasant reading.

"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?"

Ms Nyirahabiyambere left no "living will" but it seems clear that she would have preferred to remain hooked up to her feeding tubes. Ms Sloan ignored this. According to the Times, she told her sons that 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."

"Ending someone's life by hunger is morally wrong and unrecognized in the culture of the people of Rwanda," one son wrote to the guardian. Ms Sloan emailed back: "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?"

Three women. Three countries, two poor and one rich. But what good is living in the rich country if you are treated so heartlessly when you die?