Hospital Mustn’t Override Health-Care Proxy

The Boston Herald

There are times I ask him, “Are you OK with this? Do you still want to live?'' And he does this thing with his eyes. He raises them just the slightest. It's how he says yes.

His eyes are all he can move now, and just a little. He can't blink or open or close them on command. He raises them for yes and lowers them for no. The motion is subtle. But once you see, you understand. 

My friend, Sal Grasso, is 59 and like Barbara Howe, who is 79 and the center of a medical and ethical maelstrom - Massachusetts General Hospital plans to pull the plug on her next Wednesday - he has amyotrophic lateral sclerosis, or Lou Gehrig's disease. And, like Howe, he's lived for nearly a decade in a hospital bed attached to a ventilator. But no one is talking about pulling his plug.

Carol Carvitt, Howe's daughter, is her mother's health-care proxy. Over and over she has told Mass General that her mother wants to live. That when this disease began taking away her ability to walk and talk and swallow and breathe, Barbara Howe was adamant that she wanted to remain alive.

Now she can make only one movement with her left eye, her right eye removed because it ruptured a few years ago. The disease caused this, too. But Carvitt says she sees things in her mother's eye. ``Her face lights up when you talk to her. I visit her four times a week and my sister visits every single day.’'

Doctors say that Howe could be in pain and could be mentally impaired. ``Mrs. Howe's condition has continued to deteriorate,''MGH Chief Medical Officer Britain Nicholson has said. And it is ``in Mrs. Howe's best interest to discontinue life support.’'

But is it?

Grasso has had two major surgeries within the past three years and has suffered a lot of pain, too. But there is nothing wrong with his mind because ALS doesn't affect the mind. And when you ask him, “Are you still OK with this?'' he continues to say yes.

Mass General has been trying to end Barbara Howe's life not for a few months but since April 2001. That's when the hospital sent Carvitt a letter saying that it was going to turn off her mother's ventilator. Carvitt filed a restraining order but then dropped it when she and the hospital came to an agreement. But in June 2003, the hospital renewed its effort and went to court for permission to take Howe off life support.

The court denied the petition, giving Carvitt the right to decide her mother's care. But Mass General says that come Wednesday it's taking Howe off the respirator anyway. 

At issue isn't only a life. It's the value of a health-care proxy. What good is it if can be trumped by medical staff?

Carvitt says her mother wants to live. The hospital says she doesn't.

Barbara Howe is not in a coma. She can move her eye, so she can answer a question: “Do you still want to live?'' And if she's unable to answer, it's Carvitt's decision to make.