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Story Retrieval Date: 12/22/2014 3:19:01 PM CST

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Irene Borgerson tells the story of her husband, Ben, and how she stood by his side when he needed it most. 

Fighting for those who can’t

by Mike DiFerdinando and Zack Aldrich
Dec 01, 2011


Zack Aldrich/MEDILL

Although she recently had surgery, Irene Borgerson directed the Sonshine Singers choral group during a funeral service Saturday. 


Courtesy of Irene Borgerson

Ben Borgerson, who died in 2009, built a dollhouse for his great-granddaughter Sophia. “He was determined,” Irene said of her late husband. “He felt he was making a good life for himself as best he could out of what time he had.” 


Zack Aldrich/MEDILL

Doctors did a retrospective review of patients with intrathoracic stomach at Medical College of Wisconsin affiliated hospitals between 1976 and 1991. Published in the Journal of the American College of Surgeons, the study analyzed records of 44 patients who had a mean age of 60. This chart shows the number of intrathoracic stomach patients who had related health conditions. 

“The greatest challenge for patients, especially those who are critically ill, is to feel heard, listened to by others including and importantly, their physicians and nurses,” said Paula Kagan, a professor of nursing at DePaul University.

“This also includes being heard by their family as well. Patients want to be respected, to have their concerns and desires taken seriously and enacted as they wish; to not be judged; and to not have their desires, options and goals for death minimized.”

Irene and Ben Borgerson, of Evanston, are just one example of the difficulties that can arise when patients and doctors disagree over care.

The final thing Irene's husband said to her before he died was, ‘I love you.’

“That last day, I could see he had … reconciled,” she said. “Some change took place. Here was this Norwegian-German who always ruled the roost. And then, he just let go.”

Irene, 83, remembers Ben as a man who played aviation computer games and owned all the King Kong films. He was a man who became disillusioned with the greed of oil companies and entered seminary later in life. He picked battles with everyone but his wife.

And, in the months before his death in 2009, Irene knew she had to be the one to fight his battles.

“He would just sit there,” she said. “I’d say, ‘Why aren’t you speaking up? Why aren’t you saying what should be done?’

"[He said,] ‘I don’t care.’

"‘He would get very passive. So I had to become the advocate for him. For his rights, for what was best for him and what should be done on his behalf. He wanted to live, but he just didn’t care what the doctors did or didn’t do.”

It was at a hospital visit in north suburban Chicago, after Ben had retired, that doctors found he had developed an intrathoracic stomach. The organ had herniated through the diaphragm into the chest cavity, and he began to vomit profusely. His esophageal tissue was also deteriorating from stomach acid.

Doctors placed Ben on a food line for 22 hours a day, reducing the number of hours gradually. For the next three years, Irene and her husband made countless hospital visits, including three times for a surgery to have the tube inserted in a new area of the intestine. Acid would surface and erode his skin, he forgot what food tasted like and he would nearly asphyxiate from food that spilled into his lungs. Previous gallbladder and carotid artery surgeries and a quadruple bypass made it less likely Ben would survive each procedure.

Irene recalls the callousness of the admitting doctor during one of Ben’s hospital stays. The admitting doctor had attended to Ben on prior occasions, and she told Irene to take her husband to hospice and let him die.

“He had such a will to live that you couldn’t just let the man lie there and die,” said Irene’s friend Dorothy Ebbens. “So [Irene] had to get after the doctor and straighten it out to get Ben the right care he needed.”

Ebbens believes the way Irene advocated for her husband is evidence of how much they loved each other.

“She was there every day, all day, making sure they were doing everything possible for him.”

Later, the admitting doctor, a hospitalist, caught Irene as she stepped into the nurse’s station and asked why she was crying.

Irene said, “Because he’s dying! Nobody here is doing anything!” She was ready to shake the doctor.

The doctor replied, “Oh, we’ll do something.” Then, she went off duty.

Later, another hospitalist came in and diagnosed a bowel obstruction. He was the first physician to enter the room in 11 hours since Irene sat next to Ben’s bed.

The next morning, the [admitting] doctor came in and said, “You see, we took care of it.”

Irene thought, “What in the world do you mean by ‘we’?”

Ben lived another year and a half afterward. He died after surgery to replace his food line for a third time.

In 1990, the United States Supreme Court ruled that artificial nutrition and hydration are not different from other life-sustaining treatment. The justices also ruled that competent adults may refuse artificial nutrition and hydration treatments even though this action may hasten death. Surrogate decision makers may refuse artificial nutrition and hydration on behalf of
an incompetent adult.

“In my experience, professional nurses usually have the ability to discern what patients want, and part of nursing is to advocate for patients and to support patient decisions and goals,” Kagan said. “Part of being a health professional is to realize that the only valid agenda is that of the patient, not those of doctors, the hospital administration, nurses or others. So institutions such as hospice or hospitals where the mission statements and core values explicitly state that patient care comes first, that means before research, teaching, and financial objectives, may do a better job at coming to mutual agreement over end of life processes.”

Kenneth Vaux, a medical ethicist at Garrett-Evangelical Theological Seminary in Evanston, said Borgerson’s case displays how patients and doctors can sometimes diverge in defining quality of care.

“People have different sensibilities about this,” he said. “You have the patient and family of one mind and the hospital of another.”

The disconnect between what Irene wanted for her husband and what the admitting doctor deemed appropriate reflects shifting societal moods toward life and death, he said.

“Optimally, there should be settings where every person is allowed to share their views,” Vaux said. “But, as a society, we don’t know how to revere people in death. We’ve become a severely atheistic, secular culture around human death.”

Clark Beckley, a child and adolescent crisis counselor, works with families at a Chicago hospital. Beckley, 36, has found that a social worker can help smooth the dialogue among families, patients and hospital staff.

“Sometimes a patient might be receiving care from multiple nurses, some of whom are less familiar with the family, and it can interfere with clear communication,” he said. He respects staff for the work they do, but he said that sometimes a family may benefit from an extra set of ears in the room.

“It’s primarily acting in a role to clarify and disseminate,” he said. “They can’t answer medical questions, but when social workers go into the room, there can be more rapport.”

Congress in 1990 passed the Patient Self-Determination Act requiring health care facilities receiving federal funding to educate the community about advance directives, or a living will that outlines a patient’s desires for medical care, and end of life practices. Under the law, health providers and health care organizations have to provide written information to all adult patients on their rights under state law to make decisions, including information about the right to execute an advance directive and how the institution implements them. They are also required to document the presence of an advance directive in a patient’s medical record, provide education for staff and the community about advance directive and are prohibited from discriminating against patients based on advance directives.

“The hospital is obligated to provide medical interventions that are reasonable, that have a reasonable likelihood of restoring the patient. They are not obligated to provide anything the patients want. They’re not obligated under the law or by a viable ethical framework,” said Dr. Farr A. Curlin, a medical ethicist at the University of Chicago. “How do you decide in a particular case whether the interventions that the patient wants are reasonable and have a good likelihood of restoring their health? That’s where the difficulty lies. These are judgments that are not entirely dependent on our measure of (what is reasonable). That’s a judgment people have to make, and inevitably there are going to be conflicts.”

In 1999, Texas became the first state to adopt a law regulating end-of-life decisions, providing a mechanism to resolve medical futility disputes. The Advance Directives Act allows for input from the patient's spouse over that of adult children, followed by the parents if there is no written directive. But ultimately, the decision to extend treatment is made by the doctors and hospital.

“What the patient wants and what society allows to be legally provided differ sometimes,” Curlin said.

Irene said the doctor’s judgment made her question whether Ben was staying alive only because of her. But overall, she is confident that Ben was willing to live through the constant pain because it meant he could spend time with their sons and grandchildren. Irene said her husband also made his final months meaningful through art. One of his last acts was to build a dollhouse for their retirement community’s bazaar.

Irene couldn’t imagine not advocating for her husband.

“Some of these people are so dedicated to their patient and so heartfelt in the job that they do,” she said. “They’re gems. And then others come for the paycheck and they watch the clock, and that’s where they’re at. So, you fight them. A patient loses everything when they have that kind of caretaker.”