Life-death wishes: It depends

It seems that everyone has an opinion about the Terri Schiavo case, and I am no exception. When it comes to the question of whether she should have lived or died, I answer unequivocally, “It depends.”

It depends on what she wanted — period! What makes her case so difficult, however, is that it is impossible to know for certain what her wishes were or would have been had she been able to express them.

It is easy for individuals who are perpendicular to the floor to state emphatically that they would not want heroic measures used to save their lives if they were incapacitated. When the situation is upon them, however, their wishes often change. For confirmation, I need look no farther than my nephew Mike, now 38, who was diagnosed with multiple sclerosis at the age of 25.

The disease progressed rapidly in Mike. Although active and a hard worker when he was healthy, he was in a wheelchair before age 30 and bedfast by 32. Two years ago last Christmas, unable to swallow without aspirating food and water, Mike — who said he’d rather die than have a feeding tube — changed his mind. And now my sister Bette, who cares for her son in her home, rarely prepares hot meals because she doesn’t want Mike to smell the tempting aroma of food he cannot eat.

A year ago, during one of Mike’s many hospitalizations, a doctor phoned to tell Bette he was preparing to install a permanent ventilator to aid Mike’s breathing. “Not until I talk to him,” Bette said, and headed for the hospital.

“I just wanted to make sure that was Mike’s wish,” Bette explained, “and not something they forced on him.”

Mike agreed to think about the decision overnight and phoned Bette the next morning to say that he wanted the ventilator in-stalled. He is also hooked up to a device that monitors his heart rate and oxygen saturation levels. Yet during a recent survey by the agency overseeing the caregivers who assist Bette, when asked to assess his overall quality of life, he answered: “Excellent.”

In case you were wondering, there is nothing wrong with Mike’s mind. He simply meant that he was in excellent shape for the shape he’s in. With all its limitations, life is still precious to him; he takes pleasure in his family and maintains his sense of humor.

My mother, who used a wheelchair in her later years, felt the same way. Oh, she missed walking and hated that she could not do certain things for herself, but she found joy in the things she could do. Learning to use a computer was an amazing adventure for Mom and provided her with a link to far-flung family and friends even though she was limited to typing with her left, non-dominant hand.

I envy folks on either side of the Schiavo case who see the issue in stark black and white. There are far too many shades of gray in the way I view life and death. I’ve seen death on both sides of the “right to choose” argument. My father died on life-support after neurosurgery when he was only 56. My nearly 91-year-old grandmother, for whom I was responsible, passed away peacefully when I followed her wishes to eschew heroic measures. My mother’s recent death was complicated in ways that Dad’s and Grams’ were not and I am still coming to grips with the circumstances of that latest tragedy.

Perhaps those family experiences contribute to why I am unable to say whether Terri Schiavo should have lived or died. However, I think the main reason is because I am absolutely steadfast in my belief that no one — neither family member nor doctor — has the right to decide the fate of another individual unless given by that person the right to do so.


Marsha Goff, a rural Douglas County resident, writes a regular column for the Journal-World.