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In October 2006, Atkinson left Lexington for Shepherd Spinal Center in Atlanta where she endured months of rehabilitation. She was discharged from Shepherd in January 2007 and headed home to Columbia, Ky., and a life full of new challenges.
For two years Atkinson and her devoted live-in companion of 17 years, Mike Wright, tried to enjoy the life they had. They lived on a large farm, enjoying the peace and serenity of their surroundings, along with their dogs and sheep. They placed Debbie’s horses with other trainers. They kept up with friends as best as they could.
Atkinson said at first she was hopeful and willing to try this new life of hers.
“But it became pretty miserable,” she said.
Confined to a wheelchair, with around-the-clock care, she and Wright had no privacy. Someone was in the house with them at all times. Hired help tended to her most basic needs, whether it was to make sure her ventilator breathing tube didn’t pop out, which it did once, or to brush her teeth for her. Aides would come and go, some more reliable than others.
In the spring of 2008 Atkinson developed a fever and a urinary tract infection (UTI). Wright immediately took her to the doctor, who started her on antibiotics and fluids. He stayed up with her all day and into the night. They both fell asleep around midnight. Wright awoke to find Atkinson in a coma.
“Someone in her condition is so fragile. You always have to worry about UTI; you always have to worry about respiratory infections; you always have to worry about bedsores. You have to be super diligent 24 hours a day,” Wright said. “You can never fold your hands and rest and say, ‘I’ve done a good job.’ When something starts, it’s a cascade of events, like an avalanche.”
Atkinson developed sepsis, a life-threatening illness, and was transferred to Vanderbilt University Medical Center where she was admitted to the Medical Intensive Care Unit (MICU) on 7 South and given a 50/50 chance of surviving the first 24 hours. Robert Miller, M.D., assistant professor of Clinical Medicine, was on call that week and was responsible for her care. Atkinson survived, and she left the MICU 10 days later and returned home to Kentucky. That would not be her last visit to 7 South.
The right decision for her
Atkinson said she considered going off life support an option “from day one.” After her brush with death, in late summer, she began to consider it more seriously. She and Wright had long discussions about it. They consulted her brother, Frank Miller, Ph.D., a bioethicist at the National Institutes of Health.
“As her brother, I was not surprised at the decision. As a bioethicist it was important for me to understand her reasoning and to make sure that she was not making an impulsive decision and that she had thought about what she might possibly do to make her life seem worth living,” he said. “I was fully satisfied that she was making the right decision for her, given her circumstances. It was also important for me as a brother and bioethicist to do what I could to help her develop and implement a reasonable plan.”
In August, Frank Miller, Atkinson and Wright contacted their local hospice and relayed Atkinson’s wishes to have the ventilator removed so she could die.
“If I was able to get better or there was some miracle, I would go on and try. But there isn’t, and it’s more frustrating every day not to be able to do what I want to do,” Atkinson said.
After several discussions with hospice, which ultimately was unable to fulfill Atkinson’s request, Frank Miller placed a call to Vanderbilt.
Atkinson’s brother remembered Robert Miller, M.D., from when he took care of his sister in the MICU. He called Miller at his office in Medical Center East and asked if Vanderbilt would consider taking his sister’s case. Would Vanderbilt allow his sister to die when she wanted, the way she wanted?
“I encouraged them to come to Vanderbilt because I knew that we could make sure this process was done right,” said Robert Miller. “I felt that if any institution could do it well, it would be here.”
So began the exchange of e-mails, phone calls and meetings among physicians, ethicists, lawyers and members of the Palliative Care Team at Vanderbilt. No one could recall a specific case of admitting a patient to the hospital for the sole purpose of removing a ventilator to allow that patient to die.
“This was the first time I had ever been involved in a case like this,” said Mohana Karlekar, M.D., assistant professor of Medicine and medical director of VUMC’s Palliative Care Team, a multidisciplinary approach to pain and symptom management as well as quality of life improvement for patients at the end of life.
From a legal standpoint, Vanderbilt was in the clear.
“The right to refuse treatment, even if it means that you die as a consequence, is such a well-established principle in law and in ethics that people don’t think an awful lot about it,” said Larry Churchill, Ph.D., Stahlman Professor of Medical Ethics. “Most of the issues come up because a family is conflicted about it or divided or someone on the staff has a problem about it. It’s not ethically new ground.”
On Sept. 24 and 25, Miller, Karlekar and Churchill met with the nurses and residents on the MICU to tell them that Atkinson would be coming to the unit.
“We were going to do this up front,” Miller said. “We were not going to lie about her admission or her reason. She was coming in to the hospital, and we got the ICU bed reserved.”
There were very few questions from the staff, but a nurse raised her hand and asked the one that was on the back of everyone’s mind: how is this different from physician-assisted suicide?
“If you go on life support, you have the right to come off,” Miller said. “This is not suicide. You use life support for a defined purpose. It’s either to save a life or to preserve the quality of life that you expect. If it doesn’t meet that need, you’re not obligated to stay on it. That doesn’t mean it’s easy for you or for your family or for your physician to take you off it, but that’s part of our obligation.”
Karlekar further clarified the difference.
“What is unique about Debbie’s case is she was in her steady state of good health given her injury, and she chose to take back control. The horseback riding accident was her fatal injury, and she would have died two years ago if we [health care] hadn’t intervened.”
In their meeting with the staff, Robert Miller and Karlekar laid out a plan. Having worked in the MICU for years, Miller knew that the final days of a patient’s life could go horribly awry if the family does not have consensus or if the medical team is not properly prepared. The team would leave nothing to chance.
The final weeks
Atkinson, on her last full day of life, reflected on what life has been like since she made her decision.
“Actually, a lot better. Because I sort of became confident about what I decided, that it was right for me,” she said. “We used to have around-the-clock care, and I didn’t really like it. I knew I had to have it. We cut down on that.”
With limited time left, she let most of her aides go. For two months, Wright was Atkinson’s primary caregiver from 5 in the afternoon until 7 in the morning and on the weekends.
“We’ve had a lot to talk about and discuss. That aspect of it (the past two months) has been good,” Wright said.
Family members, including Atkinson’s brother, Frank, visited in early September. Two close friends came to the farm to say goodbye.
“It was good and it was hard at the same time,” Atkinson said.
There was just one more thing Wright wanted to do. He asked Atkinson for a favor. She complied. On Friday, Sept. 26, four days before her life was to end, and after 17 years together, Wright and Atkinson were married.
“We’ve probably been more married for a much longer time than most couples who have the certificate are. This lady is my soul mate. My hero. My everything all in one,” Wright said.
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