Cindy Hartwig loves her job, but she doesn`t always love the dilemmas it creates.
Years ago while Hartwig was working as a nurse clinician in the neo-natal intensive care unit at Lutheran General Hospital in Park Ridge, she cared for a 4-month-old infant who was born with all of her organs outside her body. The child, who was being fed intravenously because she was unable to digest food properly, was never satiated. According to Hartwig, three or four times a day the baby would become so upset with her inability to taste food that she would stop breathing, and each time the medical staff would resuscitate her. After countless such instances, Hartwig reached a breaking point.
”By keeping that baby alive we were tormenting her. It was really painful to watch her suffer like that,” Hartwig said. ”It seemed so cruel, so unjust.”
Eventually the family decided to reclaim their child from the ventilator that had been holding her hostage. They requested that the life-support system be removed, and their daughter died peacefully.
As advances in medical technology make their way into suburban facilities, scenes like this are being played out with increasing frequency at hospitals throughout the northwest suburbs. And while health-care professionals agree that the benefits of medical technology far outweigh the disadvantages, they are quick to add that ethical dilemmas are an outgrowth of this wave of ingenuity.
”Some babies that you save you wish you didn`t,” said Hartwig, who is now the clinical nurse manager of maternal child health at St. Joseph Hospital in Elgin. ”But sometimes parents can`t say no and sometimes doctors don`t know when to quit.”
Dr. Henry Mangurten, director of neo-natalogy and neo-natal intensive care at Lutheran General Hospital, agreed that doctors sometimes err through aggressive treatment.
”Some doctors feel that once you start treatment you can`t stop,” said Mangurten, whose neo-natal ICU cares for 650 to 700 babies a year. ”If things fall apart, many of us feel there`s no reason, with appropriate discussion, that you can`t stop. You have to know when you`ve reached your limit.”
Mangurten added that in the past, leaps in medical developments occurred every decade or so. But now the pace has accelerated to the point where every five or six years incredible milestones are reached. The advances, due primarily to medication, equipment and diagnostic techniques, have Mangurten and his colleagues reeling.
”When I step back and look at all the changes, I find it simply amazing,” Mangurten noted. ”I never would have dreamed we`d be doing some of the things we are able to do.”
But Mangurten said that the advances are not all necessarily beneficial. Treatment is available now to people who just a few years ago would have died in the arms of loved ones, so the price tag is high financially as well as emotionally.
And, he said, it`s not only infants who are tied to life-support systems. It`s young adults who have been involved in accidents and whose lives continue with the help of machines. And it`s the elderly who some might argue are not being allowed to leave this world with dignity. These examples describe helpless patients whose loved ones are also trapped in limbo.
”The biggest thing I see is that family members feel powerless over the system. There needs to be a procedure or an avenue for people to take so they can discuss their feelings,” said Marge Rooney, coordinator for pastoral care at Northern Illinois Medical Center in McHenry. ”And then sometimes the family wants everything done when there`s no hope and doctors need an avenue. They need to talk, too.”
Judith Irwin, director of public relations at the McHenry facility, said the hospital is in the process of forming an ethics committee to help patients, families and doctors deal with such problems. She said it will not be a decision-making body but a consulting and advisory group that will explore ethical issues and assist in educating the staff as well as develop guidelines and policies.
At Lutheran General Hospital, consultants at the Center for Clinical Ethics help physicians, patients and family members find their way through the haze of ethical confusion. According to Dr. John La Puma, director of the center, consultants are hearing increasing numbers of questions about care near the end of life.
”The drive for survival is probably our strongest and I think it`s probably undervalued,” La Puma said. ”For a long time medicine was just focused on survival, but patients are telling us that quality matters just as much, and in some cases more. That`s a new facet for medicine to focus on: how to improve quality of life and not just survival.”
La Puma added that it is important for patients and doctors to communicate. He said that patients should know that they must ask questions in order to get the information that they want and have a trusting relationship with their physicians. Doctors, in turn, must practice good communication skills as well.
”Doctors need to know more about how to listen, how to encourage, how to reassure, how to use patients` value systems and their value systems to formulate treatment goals,” La Puma said. ”And those skills are readily acquired. They are not pie-in-the-sky or esoteric skills. They`re everyday human skills.”
Rebecca Trella, a geriatric case manager at Lutheran General Hospital who was recently forced to make a life-and-death decision about her 96-year-old grandmother, agreed. ”The key is to sit down and talk about these issues. People need to know it`s okay to make these decisions. More and more people are realizing it could happen to them.”
Experts say a major stumbling block is that while medicine now allows people to live longer lives, physicians still struggle with how to improve the quality of those extra years.
”We may be adding to the number of years we live to the exclusion of quality,” said Dr. Robert Moss, co-director of geriatric medicine at Lutheran General Hospital and senior associate at the Center for Clinical Ethics. ”As the prognosis dims, it`s helpful for families to talk about the goal of treatment. Restoring someone to health may be impossible. For someone who is suffering, prolonging life may not be the answer, providing comfort may be the answer. It should be based on an individual`s needs and wants.
”Sometimes it`s okay to let go. Sometimes the treatments are more burdensome than the disease.”
According to Cindy Hartwig, that was the case with the 4-month-old baby.
”Keeping her alive was causing her to suffer so much,” Hartwig said.
”She needed to find peace. The last thing the mom did was she held her daughter and fed her a bottle. Then the baby fell asleep and died. Death is often a better alternative. Sometimes death is very, very nice.”
