Family makes life-or-death decisions
Page 2 of 2 -- 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
''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."