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Author speaks about path to death and modern medicine

By Greg Laudani, Staff Writer

Today’s advanced medical technology keeps ailing loved ones alive longer than ever before. But is it always the best thing?

Author Katy Butler spoke at the University of New Hampshire to bring attention to this extremely controversial issue on Thursday, Oct. 23, in MUB Theater I.  She discussed her most recent book, “Knocking on Heaven’s Door: the Path to a Better Way of Death,” which reveals how medical overtreatment dragged her father’s life on for over six suffering years, even after he expressed he did not want to live anymore.

The book, which was named “one of the 10 best memoirs of 2013” and “a big book for fall 2012” by Publishers Weekly, details the harm medical advancement caused in the prolonged deterioration of Butler’s father up until his death.

“Doctors are very well-trained and their intentions are good,” Butler said, “but they are basically trained to keep you alive, and they are not trained to talk to you about what your values are and what matters to you, and about what you, feel is worth living through.”

Butler spoke about her father’s story at the event. Her father, Jeffrey, an active, energetic World War II veteran from South Africa, was very healthy until he suffered a major stroke in November 2000 at 79 years old. According to Butler, he was left as a shell of himself.

“It was very hard for him to talk,” Butler said. “He couldn’t fasten his own belt. He really couldn’t finish a sentence.”

Jeffrey did everything in his power to get better. He spent several months doing vigorous speech and physical therapy following his devastating stroke. But the physical activity became too much for Jeffrey’s deteriorating body. In December 2002, he required surgery in response to developing a “painful intestinal hernia,” according to Butler.

But before the operation, doctors told Jeffrey he needed an artificial pacemaker because he had already been diagnosed with bradycardia (slow heart rate). To be safe, doctors would not go through with the surgery unless Jeffrey’s heart was artificially sped up. Butler said that he was too mentally demented from the stroke to make the decision himself.

Butler’s mother, Valerie, gave the doctors permission to implant a permanent pacemaker in Jeffrey out of desperation. It was from then on that Butler said she knew her father really did not want to live anymore.

“He was miserable and could barely speak at that point,” Butler said. “He had very little memory and could not function. You had to coach him to take his shoes off. He would have his slippers on and want to go for a walk. He would try to put his shoes over his slippers. He didn’t know enough to take his slippers off first. He couldn’t learn anything.”

A year or two after the hernia surgery and pacemaker was put in, Jeffrey began experiencing multiple small strokes and developed vascular dementia — when part of the brain does not receive enough blood or oxygen. Symptoms of this are closely related to Alzheimer’s, with severe memory problems and the loss of basic function. He developed macular degeneration, arthritis and was very deaf, according to Butler.

“He got to the point where he couldn’t make a phone call,” Butler said.

Shortly before his death in April 2008, Butler and her family made a “conscious decision,” to stop going further with Jeffrey’s laundry list of treatments. According to Butler, they had witnessed him suffer for too long and knew that his dementia had been preventing him of making his own medical decisions. 

Butler even urged her father’s cardiologist to get the pacemaker turned off. The cardiologist refused, telling Butler it would be like “putting a pillow over” her father’s head. Jeffrey died about a year later after developing pneumonia.

Butler said this is one of the main reasons why she came to speak at UNH. She said she wanted to use her experience with her father to teach the importance of communicating with family members about medical decisions when loved ones are approaching the ends of their lives.

“I think we need to start talking honestly with our family members,” Butler said. “We really need to find out from them what makes their lives worth living.”

Butler’s father spent the final six and a half years of his life suffering and with a pacemaker keeping him alive well after he would have died naturally. She said that he lived too long in the midst of suffering.

“He lived for at least a year or two longer than he should have,” Butler said.

Butler’s family originally wanted to keep Jeffrey alive for as long as they could. But at first, they really did not consider the harmful implications all of the treatment would have on him.

With her family’s situation in mind, Butler encouraged the audience to ask chronically ill loved ones more questions as they move closer to death. She stressed the importance of learning how loved ones want to approach their final days before they actually come and whether or not they think it is worth having major surgeries at an old age when mental and physical health defects are highly probable.

“It’s not good talking about whether or not to give someone a feeding tube in the middle of a crisis,” Butler said. “If you haven’t figured out your values already, and if you haven’t had an open conversation with the people you love, you may end up somewhere you don’t want to be.”

Despite the prolonging of her father’s suffering, Butler does not blame advanced medicine or medical technology for his death. She expressed that it is necessary in many cases.

“Understand that modern medicine is absolutely great,” Butler said. “It’s fabulous. There are times you really need fast [modern] medicine. If you’re young and healthy in the emergency room, you’re going to be really grateful that those doctors can save your life and save it fast.”

Still, Butler emphasized the importance of family communication in medical decision-making.

As Butler saw with her father, relying on medicine may not always be the path toward a peaceful death for a family member. 

“Modern medicine is fragmented,” she said. “It pays for overtreatment. It [doesn’t] pay for things like home healthcare or rehab services, it underpays for all those things. And if you don’t have your head on straight and know what your values are and what you want, you may be ground up by the machine.”

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