Family talks are needed

The time to discuss living wills is before a life-threatening situation is at hand.
Terri Schiavo's husband and parents have spent the past 12 years arguing bitterly about how she would have wanted to live out her final days. Their battle has been waged in the public arena, in courts, in newspapers and on countless TV and radio news programs.
Many people can identify with both sides in the case because they've had to face the same issues in their own families. But for most, those decisions have been made quietly, in hospital rooms and doctor's offices across the Mahoning and Shenango valleys and across the country.
"Families face this every day," said Mike Seelman, corporate director of Forum Health at Home Hospice Program. "With improvements in medical care, we have more options when it comes to end-of-life decisions. There are a lot more gray areas than ever before."
Emotional issue
Death is not a comfortable topic for most people, including physicians, said Steve Grossman, medical director at Hospice of the Valley.
"Many people will think, 'Don't talk to me, I'm not ready to die,'" Grossman said.
Grossman's wife died five years ago after a 14-week battle with pancreatic cancer. They had discussed end-of-life issues a few times -- when they drew up wills, when they purchased a burial plot. But when his wife was gravely ill, he found it hard to have those discussions, he said.
"She would talk to me, and I would shake my head like I wasn't listening," he said. "I didn't want to give up hope."
His own experience taught him that talking with family members about end-of-life care is best done before debilitating illness strikes. "Illness can come slowly, over time, or out of the clear blue, you can have an accident. If you have strong feelings about what you want, you need to make those feelings known, and preferably in writing."
Dr. Paul Watanakunakorn, an internist with Trumbull Mahoning Medical Group's Austintown office, agrees.
"It's definitely best to talk about this when you're not faced with a critical decision," Watanakunakorn said.
Communicate wishes
Doctors suggest that families have frank discussions about their wishes and put those wishes in writing. These documents are called living wills and they allow you to choose the kind of care you would like to receive if you were permanently unconscious or terminally ill and unable to give care instructions to your doctor or family.
A copy can be given to your family doctor, for your medical file, and a copy should be kept with important documents, such as your will. It's not necessary to have an attorney draft the document, although it could be a good idea.
Another key to making sure your wishes are carried out is to communicate them to your family. A living will does no good if no one knows you have one, Seelman said.
Sometimes last wishes are ignored, Grossman said. That can happen when family members feel guilty or because they feel that they know best.
Grossman once had a patient who had suffered a stroke that left him alive, but debilitated. He talked with his wife and doctor and told them that if he had another stroke, he wanted to be allowed to go peacefully, without heroic efforts to keep him alive.
"He felt strongly about his quality of life," Grossman said. "It was a tough and tearful conversation, but he was very clear about his feelings."
Within weeks, the gentleman had a second stroke. Although his wife knew of his wishes, a relative talked her into putting him on a ventilator.
"She knew it wasn't what he wanted, but they made her feel guilty," he said. After the wife thought about it, she reversed the decision and her husband had the quick and peaceful death he wanted, Grossman said.
Ed Newmeyer of Sharon Regional Health System in Sharon, Pa., said that each patient admitted to the hospital is asked if they have a living will.
"It's a lot easier for everyone -- physician, family and patient -- are all on the same page," Newmeyer said.
Difficult decisions
Sometimes patients will opt not to have a living will, instead leaving decisions to be made by a doctor or family member. For family members, it's an excruciating decision, Seelman said.
"It's one thing to make the decision; it's another thing to live with it the rest of your life," Seelman said. "When people make their wishes known, it makes a difficult time a little easier for your loved ones."
The decisions made by doctors are not cut-and-dried, Watanakunakorn said. "We have to know there is just no hope of meaningful recovery," he said. "And at some point we just have to ask, 'Are we prolonging life or extending suffering?'"
Seelman suggests that families discuss their wishes and options not just once, but at various stages of life. "Your thoughts, your feelings and your attitudes change," Seelman said.
As a guide, he suggests discussing your wishes at these times, called the Five Ds:
When someone dies
When there's a divorce
When you are diagnosed with a disease
When you are disabled
Every decade.