Family makes life-or-death decisions

MARBLEHEAD -- They talked about love and spirituality, suicide and murder, and, of course, life and death. They drew lessons from putting down the family's coon cat, from the old friend who woke from a coma after three months, and from their father, who died in 2001 after a more than 30-year struggle with multiple sclerosis. And they peppered one another with what-ifs.

Spurred by the fight over Terri Schiavo's death, the Cherry family gathered Sunday to sign healthcare proxies and to hash out -- over three hours -- the subtleties of the medical treatment they would each want at the end of life.

In the past few weeks, hundreds of thousands of people have visited Massachusetts websites that provide copies of healthcare proxies and living wills. Now, like many nationwide, they are struggling with the tough choices.

''If you don't have your marbles, you don't want to live," Melissa Cherry said. ''Is that right, Mom?"

''I'm losing them already," joked Deborah Cherry, a vital 72-year-old, who brought her children together for a potentially upsetting discussion she had long avoided.

''If there's a chance you could recover, you'd want treatment. But if there's no quality of life, you don't want to prolong your life," Melissa, 41, summarized, looking at her mother.

Deborah nodded.

''What if you can't hear? What if you can't see?" Melissa asked. ''Let me think about that," Deborah stalled.

''What if you were mentally OK, but your body was not?"

''Your father couldn't walk, he couldn't move at the end," Deborah said, adding that he fought his multiple sclerosis with dignity and stayed sharp until a severe infection caused his death. ''But I have no desire to live with any kind of severe disability. I don't want to be a burden. . . . I would like . . . to have a nice dose of morphine and have you let me go."

Doctors, lawyers, and ethicists say the Schiavo case drove home the importance of each person designating a health proxy -- a trusted loved one to make medical decisions in the event of mental incapacity -- and spelling out in advance their preferences for care in hypothetical situations, in a living will or in a discussion with family members.

Proposals are pending in at least nine states -- although not Massachusetts -- to require doctors to continue providing food and water when an unconscious patient, like Schiavo, has not designated a proxy or left specific instructions. A bill pending in Congress would make proxies and living wills more portable from state to state. (Living wills are not legally recognized in Massachusetts.)

''One of the really good things that has come out of" the Schiavo case ''is that the public is much more willing to confront these issues," said Dr. Lisa Lehmann, director of the Center for Bioethics at Brigham and Women's Hospital.

Officials at Clark University in Worcester, sent out information on healthcare proxies and living wills to every employee last month. And some businesses and hospitals have distributed proxy forms.

The Massachusetts Medical Society said that during the two weeks before Schiavo's death, on March 31, there were nearly 12,000 hits on the section of its website where proxy forms are available. Typically, there would be about 700 hits over two weeks. The Hospice & Palliative Care Federation of Massachusetts counted more than 310,000 hits to its proxy pages in the same two weeks, up from about 40,000 in a typical two-week period, according to executive director Rigney Cunningham.

Some families are seeking help from lawyers, although in Massachusetts, individuals need only two adult witnesses to complete a healthcare proxy. Others are guided by workshops and worksheets provided by hospices and other end-of-life specialists, who say every person 18 or older should designate a proxy.

''This is not just for the dying," said Donna Sciola, a nurse with Hospice of the North Shore who runs a workshop that Melissa and Deborah attended earlier this month.

Deborah Cherry first suggested a family discussion on end-of-life care in an e-mail to Melissa last fall. But the topic got pushed aside. ''We're WASPs," Deborah Cherry explained. ''We never talk about this stuff." But because of Schiavo, Deborah said, she worked to get over her ''silly shyness." The family allowed a Globe reporter and photographer to sit in on their discussion.

As an antique clock chimed out the hours in the formal living room of the Victorian-style condominium where Deborah has lived for the past 19 years, Melissa; her 35-year-old brother, Fred; and Fred's girlfriend, Dara Fruchter, 44, bantered with Deborah, sometimes using gallows humor to get over the tough spots. All three Cherrys signed healthcare proxies designating other family members. All three said they would not want life-sustaining treatment if they were comatose with little chance of recovery. But their choices diverged in other scenarios.

''If I'm brain damaged and I end up like a 4-year-old, let me go," Melissa told the family. ''I want to go with dignity."

Turning to her brother, she joked: ''You get to pull the plug. Mom's going to be the backup."

Melissa said she liked the way Amanda Marie, the family cat, died last year at 19. ''We held her and gave her a shot, and she went in peace," she said. ''This is what we have to do for humans. Let go with love."

''There's a time when it's time for our bodies to go," Melissa added. ''You go back to your source and go on" in another form, she said, shocking her mother. Deborah was raised Congregational, but said she does not believe in life after death and did not know her daughter did. Growing up, Melissa occasionally attended a Unitarian church, but never joined the congregation.

Yet, when Deborah said she would not want to live in pain or with the effects of a stroke that paralyzed one side of her body, Melissa recoiled a bit. ''I can't put you down like Amanda Marie," Melissa said. ''That's murder."

''Who's going to take care of me then?" Deborah asked.

''I don't know if I could change your diaper, Mom," said Melissa, who works in international human relations at Fidelity Investments and lives in Arlington.

''I could," said Fred, who installs stone countertops and lives in Jamaica Plain. ''And let me get the drool bucket. I can't wait to pull the plug, Mom," he added with a huge grin.

On his way out the door, with his motorcycle helmet dangling from his hand, Fred said he would not want the family to be too quick to withdraw life support if he was in a coma.

''What about Mr. Anderson?" he asked, referring to a family friend who came out of a stroke-induced coma three months after doctors said he had only a 1-in-100 chance of recovering.

''If I get run over and I'm not paralyzed, but I have head trauma. . . . Inside, I might be OK, although outside I might be going goo, goo," he said, making grimaces and mimicking spastic gestures. ''People like that . . . they're still living, they interact, but they're a bit goofy. I'd definitely want to be kept alive."

Yet, Fred said, if he had cancer and the pain got too much, ''I'd kill myself."

''This is all the icky stuff," said Melissa, adding that she needed to have more discussions with Fred, who is her health proxy. ''I hope the end is not ugly and that having this will make it as peaceful as possible."

Turning to her mother, she added: ''No matter how difficult and uncomfortable talking about this is, I'd rather know that I'm doing what you want. I don't want to have to second-guess myself."