Oct. 5, 2012 at 4:55 PM ET
When your time comes to die, you probably hope that you will be surrounded by loving family members and friends who will support you and help you leave this earth at peace with one another. Sadly, for 28 year-old SungEun Grace Lee, who is dying in a Long Island hospital, that is not happening.
Lee, who goes by the name Grace, is suffering from an incurable tumor boring into her brain stem. She’s paralyzed from the neck down, hooked up to a machine that breathes for her and is on a feeding tube. She’s fully conscious and cognitively alert, but has lost all control over her body and her basic bodily functions.
Eventually, the tumor will kill her.
Rather than suffer a slow, miserable death, Grace has requested that doctors take away the life support. After determining that she was mentally competent, doctors at North Shore University Hospital in Manhasset, N.Y., prepared to shut off her life support. But her parents did not agree. They tried to talk hospital officials out of disconnecting her machines.
Her father Man Ho Lee is the pastor of the Antioch Missionary Church in Flushing, N.Y. He and his wife, Jin Ah Lee, could not accept their daughter’s decision. They see what she is doing as a suicide, against God’s will and the work of Satan.
They warned Grace she would go straight to hell if she insisted on no more life-extending care. They urged her to leave the hospital and go to a nursing home.
On September 28, the Lees went to court to have Grace declared incompetent and to have her father appointed as her guardian with the authority to make all medical decisions for her. The fight between Grace and her parents was reported this week in the New York Daily News.
Grace’s court-appointed attorney David A. Smith argued before Nassau County Justice Thomas P. Phelan that there was no foundation at all for the guardianship. Grace had said over and over again that she wanted to die. Her doctors believed she was and remained competent. Judge Phelan agreed and did not grant the guardianship.
Her parents immediately appealed that decision to a higher court. That court has now ruled, refusing to grant the parents request, the New York Daily News reported Friday.
The parents had produced a grainy videotape of Grace which they said shows her saying she wants to live and wants to leave the hospital.
Such tapes made by families with agendas cannot be trusted. As was true in the Terri Schiavo case, what you see on a highly edited tape cannot be trusted. Schiavo’s parents, who did not want her feeding tube removed, said their tape showed she could track a balloon and recognize them.
An autopsy showed Schiavo had long been blind, her brain shrunken to the size of a walnut.
Grace Lee has the absolute right, as do you or I, to stop her medical care. There is no duty for any competent adult to be a patient or to let doctors give treatments that are not wanted. Jehovah’s Witnesses can refuse life-saving blood transfusions; Christian Scientists and Evangelicals can pray rather than go to the hospital when disease appears.
I don't agree that is wise to do, but I do agree that they and the rest of us have a fundamental right to control what is done by doctors to our bodies.
Grace’s parents are doing what they think is right. But they are horribly wrong. Their daughter is going to die, if not tomorrow, then very soon. They need to come to accept her decision about how that will happen. They can try to change her mind but to have their final days with her entangled with hopeless legal proceedings is not what a dying daughter needs.
Let’s hope this family can come together before it is too late to do so.
Arthur Caplan is the head of the Division of Medical Ethics at NYU Langone Medical Center
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