End-of-Life Choice, Palliative Care and Counseling

Paralyzed Bank Manager Terminally Ill With Brain Cancer Fights for Her Right to Dieby Sonja

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by Erica Pearson
New York Daily News
October 4, 2012

She is paralyzed from the neck down, tethered to breathing and feeding tubes — but Manhattan bank manager Grace Sung Eun Lee still managed to mouth four words Wednesday.

“I want to die.”

Doctors are trying to honor Lee’s wish, but her devout parents believe that removing the tubes is suicide — a sin that would condemn the 28-year-old to hell.

They’ve gone to court to keep the terminally ill brain-cancer patient on life support, turning a heartbreaking family tragedy into a right-to-die legal battle.

The case has put medical ethics and religion on a collision course, with lawyers arguing in two courtrooms while the patient at the center of the fight can do little more than blink her eyes.

“The thought of her dying, my heart tremors, everything goes black,” Grace’s father, prominent Queens pastor the Rev. Manho Lee, pleaded to a judge.

Her mother, Jin-ah Lee, does not believe her always dutiful daughter has given up on life — or that her death is inevitable.

“Despite all this confusion, she wants to go to heaven,” she told the Daily News. “I keep telling her she can get better. God’s going to save you.”

The congregation at Antioch Missionary Church is praying for Grace, who mentored young people. The day after the Korea Times wrote about the case, a Korean church group took out an ad that declared: “Giving up life is not the will of God.”

Lee’s Korean immigrant parents say she is depressed and not in her right mind.

“We believe that our daughter is really heavily medicated and unable to make her own decisions,” her father said Wednesday.

But her doctors at Long Island’s North Shore Hospital say she’s competent and has made her wishes clear.

“She is very tearful when she thinks about dying, but she consistently asks that the breathing tube be removed and she begs us to do that,” Dr. Dana Lustbader, chief of palliative medicine at North Shore, testified at an emergency hearing last week.

Before last fall, Lee was a vibrant young woman who came here from Seoul as an eighth-grader and graduated from the University of North Carolina.

She was living in Manhattan, working as a financial manager at Bank of America and training to run the New York City Marathon.

A month before the race, she fell ill and doctors found a tumor in her brain stem.

She moved into her parents’ Douglaston, Queens, home while getting radiation and chemotherapy. She regained some strength, but by summer was so ill she could hardly move.

On Sept. 3, she had a seizure, and an ambulance rushed her to North Shore, where doctors eventually put her on a ventilator and inserted the feeding tube.

The brain tumor had resurfaced and she was given months, or even weeks, to live, and she was soon moved to a palliative care unit.

On Sept. 18, doctors tried to remove the breathing tube to see if she could manage on her own — but she could not, court papers say.

Her parents pushed for transfer to a nursing home, but when Lustbader asked Lee if she wanted to move, she started to cry, she testified.

“I don’t want to go, take this tube out, why won’t you take the tube out, please, please, please,” she cried, according to Lustbader.

The tug-of-war began in earnest the night of Sept. 23, when Lee’s mother says she overheard a nurse talking with her daughter, making plans to remove the breathing tube the next morning, a Monday.

“I was shocked,” she said. “I asked Grace, ‘Did you just say that you were going to pull the life support out tomorrow?’ And Grace said, ‘Yes.’

“I asked, ‘Are you trying to die tomorrow?’ And she said, ‘Yes, I am going to try to die tomorrow.’ ”

The mother was so upset she called 911, but the police who arrived said they could not get involved.

The hospital put off removing the tubes until the next afternoon, and Lee’s father took advantage of the delay to rush into Nassau County Supreme Court in the morning.

He asked to be appointed guardian, and a judge issued a temporary order, stopping the hospital from removing the feeding tube and respirator.

At a hearing Friday, Judge Thomas Phelan ruled Grace Lee was competent after listening to both sides.

Lee is on several medications, including morphine for pain and Ativan for anxiety, but her doctors say the dosage isn’t high enough to affect her reasoning.

“Her face moves, her mouth moves, and she communicates very clearly and consistently by mouthing words and with eyes — one blink yes, two blinks no. But her mouth is able to move very clearly and communicate effectively,” Lustbader told the judge.

The hospital had a psychiatrist assess Lee, and he found she is capable of making medical choices.

The judge said it was a difficult decision.

“My heart goes out to the family,” Phelan said in court.

“I feel your sorrow, I feel your pain, and I wish certainly that your daughter will recover and should recover, although that is unlikely… I need to vacate the temporary restraining order and let the things move through their other natural course and put Miss Lee in the hands of God.”

The Lees appealed right away, and the Appellate Division reinstated the temporary restraining order. The tubes will remain in place until a panel of judges weighs in.

“We earned some extra days,” said Jin-ah Lee, 58. “Some extra time.”

Terry Lynam, a spokesman for North Shore-LIJ Hospital Systems, said the hospital couldn’t comment on the case, citing patient confidentiality.

But he added, “In all end-of-life cases, we abide by the patient’s wishes.”

Alta Charo, professor of law and medical ethics at the University of Wisconsin Law School, said the key question is whether the patient is competent to make the call.

“Given that she is 28 years old, if she is competent, she has under any interpretation of U.S law, the right to be free of unwanted bodily intrusions,” Charo said. “That is law that dates back to the colonial period.”

Meanwhile, a steady stream of visitors arrives to pray for Lee — her two brothers, a cousin, members of her youth group.

In the hospital cafeteria, the Rev. Young Gab Hyun, a leader in the Council of Korean Churches of Greater New York, said many people in the Korean community see this as a culture clash.

“In the United States, when you’re over 18, the person becomes legal and independent. A person can decide all responsibilities on her own,” he said. “But in Korean culture . . . we believe that the decisions that the parents make have a lot more influence in this type of matter than herself.”

Grace’s brother Paul Lee, 30, said he’s surprised his sister is standing up to their parents.

“She was the only one who would always tell me, you should listen to our parents,” he said.