Local families wrestled with life, death

Faith helped, no matter what decision loved ones finally made

By JENNIFER NEJMAN
Daily Record/Sunday News
Sunday, March 27, 2005

Donna Webb remembers nearly the exact words she asked the doctor at Johns Hopkins Medical Center three summers ago.

Is this going to prolong Andrew’s life or make him better?

Her 15-year-old son had chronic myelogenous leukemia. A bone marrow transplant cleared his body of cancer, but a complication developed.

A machine had been helping the Red Lion Area Senior High School student breathe, but his body was doing the work as it received purer oxygen, Donna Webb said.

As Andrew grew weaker, doctors told his family they could hook him to a respirator that would take over his breathing.

“The inevitable was going to happen, it just wasn’t going to happen as fast,” Donna Webb said.

Donna and her husband Mike Webb of Brogue had to make a decision.

* * *

It’s a choice families may face at any time.

Sometimes, the situation presents itself unexpectedly — a loved one is injured in a car accident or has a massive stroke and doesn’t have a living will.

Other times, the choice is expected and can be planned for through discussions with family, or the patient has created a living will to outline what she would like done when certain medical situations occur.

Terri Schiavo, the brain-damaged Florida woman whose husband and parents are fighting over her future, had no living will. So when her husband and parents disagreed about what she would have wanted, it went to the courts — something local health-care professionals say is rare.

Beyond the political and legislative implications of Schiavo’s case is the universal question at its core.

It’s a question someone might answer differently than her spouse, her father, her child.

How do you personally define life? If you can breathe, but can no longer think, do you still consider yourself alive? At the end of your life do you want to be made comfortable as your body shuts down or do you want interventions to keep your basic functions going as long as possible, even if your reasoning has stopped?

* * *

In April 2001, while Andrew Webb was playing lacrosse, a ball whacked him on the hip. A large lump of blood swelled to his skin’s surface. The next month, doctors diagnosed Andrew with chronic myelogenous leukemia.

About a year later, Andrew underwent a bone marrow transplant. The transplant went well. But in late July 2002, doctors learned Andrew had Graft vs. Host disease, a serious complication of the transplant.

Andrew required emergency surgery. Donna Webb remembers telling her son he needed to communicate what was happening in his body.

“He always said, ‘We will do what we have to do and if it’s not enough, it’s not enough,’” Donna Webb said.

Doctors told the family the end was near. The family had called relatives and friends, bringing probably 100 people to the hospital.

Andrew said his goodbyes. A few days before he died he ate a plate of yellow Jell-O — his first true meal in weeks.

Then, something changed and his body began to shut down. The day he died, Andrew called his mother over and said he was ready. She told him not to be scared.

The 15-year-old boy said, “‘Mom, I’m not scared.’”

Donna Webb remembers how Andrew’s body had thinned to 100 pounds, how he looked like a skeleton. She believes near the end he lost his brain function but that his heart was strong and beat on.

“He wouldn’t have wanted to survive if he wouldn’t have been Andrew,” Donna Webb said. “Who wants five or 10 more years, if you’re going to be terrible.”

They didn’t take machine off that helped him breathe, but used it to trick his brain, so he would be comfortable and wouldn’t gag from a complete disconnect, she said.

For a minute Andrew opened his eyes and blew his mother and father a kiss.

Donna Webb had never watched anyone die. In his final moments, she believes she watched Andrew’s spirit leave his body — the coloring drained from his body, moving from his head to feet.

She said her faith helped her arrive at the decision. For months, the family had prayed for him to recover, but believe he is in a place away from suffering now.

“I have no doubt where he is,” Donna Webb said. “I have no doubt I will see him again.”

* * *

On Friday, Betty Mialki of West York turned off the television so she would not have to listen to people talk about Terri Schiavo’s case anymore.

Betty and Len Mialki’s daughter Shelley Mialki died at the age of 17 on June 26, 1998. She had been riding her bicycle when she was hit by a car.

A few days before she died, Shelley had a conversation with her father about organ donation. She also had checked the box on her driver’s license form. Shelley’s organs helped six or seven people, Betty Mialki said.

The decision Betty and Len had to make at the end of Shelley’s life was not complicated, Betty Mialki said.

Shelley’s brain had swelled out of control and her brain stem was severed. Doctors told the family Shelley was brain-dead, she said.

If Shelley had brain activity, the family, most likely, would have kept her alive, Betty Mialki said.

“What’s happening in Florida is very upsetting,” she said. “My whole family is pro-life.”

Betty Mialki said she believed denying Schiavo nutrition was wrong.

“As a parent I can understand what those parents are going through, and I would have done anything to keep my daughter alive,” she said.

* * *

People have different opinions concerning how they want to die — whether they want to be in a hospital attached to tubes or in their home, said Dr. James Sioma, a family physician and geriatric doctor.

Sioma is the medical director of AseraCare Hospice, an organization that sees its role as helping individuals die comfortably.

Dying is natural; the body knows what to do, he said.

All people are different. Some eat and drink until the end, while others stop eating, he said.

Near the end of a person’s life as functions shut down, the body takes in fewer calories, he said. Sioma said giving the body fluids can fill the lungs and make a person feel like they are drowning.

“When (people are) dying, they don’t feel thirst or hunger like they do when they are healthy,” he said.

Family members’ instincts may be to feed a person by having a feeding tube inserted because family members feel like they are doing something to help the person, Sioma said.

“Feeding a dying person is a cruel thing to do,” he said.

Kathy Redding, coordinator for the Hanover/Spring Grove VNA Hospice Program, which serves southern York County and Adams County, said disputes over placing feeding tubes in patients don’t usually happen when a patient is in hospice.

But the association has seen situations where a family insists on having a feeding tube inserted, causing the person’s lungs to fill with fluid and legs to swell as the person dies.

When patients come to hospice, they are dying of specific conditions — unlike the Schiavo situation — and the purpose is to make them comfortable, not to extend their lives, Redding said.

She attributes the lack of disputes in her program to the educational work her nurses do to answer families’ questions.

“It’s a scary time for families,” she said.

Some hospice patients have living wills. Others choose to do one when they enter hospice, but it is not a requirement in order to receive services from the visiting nurse association program.

Sioma pointed to the importance of creating a living will to detail whether a person wants CPR, feeding tubes or diagnostic testing. That way the person will be able to die the way she wants, not the way someone else thinks she may want to die.

“You get legal battles — the person who suffers is the patient,” Sioma said. “The death is prolonged and it’s not fair to the patient.”

Reach Jennifer Nejman at 771-2026 or jnejman@ydr.com.