MORGANTOWN, W.Va. – When Charlie Bacorn was in the final month of life he was in control, just as he had been since the first day in 2009 when doctors diagnosed him with colon cancer.
For six years, Charlie’s strong spirit and sense of humor helped him get through the numerous rounds of chemotherapy, radiation treatments and surgeries. When the treatments ceased to be effective, Charlie made the decision to stop them.
WVU Medicine’s Sandra Pedraza, M.D., was Charlie’s physician during the last 12 months of his life.
“Charlie was experiencing worse side effects with the chemotherapy treatments,” she said. “His strength and quality of life were also getting worse. I knew what was important to him because we had discussed it.”
With Dr. Pedraza’s encouragement and support, Charlie told his sister, Judy Lyons, what was most important to him near the end of his life.
“Charlie didn’t want to prolong life,” Pedraza said. “The conversation about his end-of-life preferences with his sister was very smooth, and Charlie was not conflicted. He knew what he wanted.
“He had accepted that he was going to die, and he wanted to die at home.”
Charlie died on Sept. 19, 2015. As reflected by the wishes in his Physician Orders for Scope of Treatment form completed with Pedraza and submitted to the West Virginia e-Directive Registry with Charlie’s permission, Charlie passed away peacefully and comfortably at his home.
Research conducted by Pedraza, Alvin H. Moss, M.D., of WVU Medicine and the West Virginia Center of End-of-Life Care, and their West Virginia University colleagues confirms the importance of the POST forms being completed by patients, like Charlie, in consultation with their physicians.
“Patients are far more likely to receive the desired level of treatment at the end of life and die in the location they prefer if they complete a POST form with their physician,” Dr. Moss said. “For too many West Virginians, patients’ end-of-life care does not accurately reflect their preferences. Although studies show 92 percent of West Virginians prefer to die outside the hospital, just 58.5 percent of people do. By using POST forms, we can improve respect for patients’ wishes near the end of life.”
POST forms are recommended for seriously ill patients, those for whom their physician would not be surprised if they died within the next year. Pedraza said it is sometimes difficult for health care professionals to find the window of opportunity and have the end-of-life discussion with patients.
“You have to start planting the seed at the beginning to determine how to help the family recognize and achieve the patient’s wishes,” she said. “After the seed is planted you can extend the discussion and talk about some of the specifics.”
Knowing the importance of the patient-physician relationship, Pedraza always was honest with Charlie and, in turn, Charlie trusted her.
“During one of his visits he talked about being very tired and looked jaundiced,” she said. “It took another couple of visits before I got him to realize that he should have a second person he trusted with him who would know his medical preferences and the condition of his health.
“I knew his sister, Judy, was the closest to him and encouraged him to disclose to her what he wanted in terms of end-of-life care.”
Lyons accompanied Charlie to most of his doctor appointments and chemotherapy treatments. Often she would go to the meetings with Pedraza, but on the final visit she hesitated and told Charlie to go in without her.
“Shortly after the appointment started, the nurse came out to the waiting room and got me,” Lyons said. “Charlie wasn’t feeling well. He had already made up his mind. He didn’t want to go through any more chemotherapy treatments.
“I listened to what they were saying and I told him I was with him through all of this, and I was.”
Because the hospital staff was such a large part of Charlie’s life the last six years, Lyons said Charlie was very much at ease with sharing his final wishes with Pedraza and signing the POST form.
“Dr. Pedraza and Charlie had a special rapport with each other,” she said. “It was very important to him to have somebody that understood what he was feeling and who knew what was going on with his body. He knew at the end, his time was close.
“Charlie and I believed that God put us here on earth a certain day, and God would take us on a certain day.”
With the help of hospice, Charlie passed away with his sister at his side a week after having this conversation with Pedraza and his sister and putting his wishes in writing in a POST form.
“He was in peace at the end and passed away the way he wanted to,” Pedraza said. “The key for physicians is to be able to identify what is important to the patient, including at the end of life.”
According to the research, POST forms are significantly more effective than traditional advance directives (living will or medical power of attorney) in respecting patients’ preferences to die outside of a hospital. Patients who completed an advance directive were less likely to have an out-of-hospital death (56.9 percent) compared to those with a POST form, where three-quarters or more of patients died outside of a hospital, as they preferred.
This research is the first to compare results with advance directives to those with POST forms and demonstrate the advantage of POST forms in end-of-life care.
“We continue to encourage all people over 18 to complete advance directives and submit them to the e-Directive Registry,” Moss stressed. “What this research shows is that people who are dealing with a potential end-of-life illness also should talk to their physician about filling out a POST form.”
The research article is featured in the February 2016 Journal of Pain and Symptom Management. It was co-written by Pedraza; Moss; Stacey Culp, Ph.D., of the WVU Department of Statistics and Evan Falkenstine, data manager for the Center for End-of-Life Care.
The study included a review of more than 2,000 West Virginians who submitted advance directives and/or POST forms through the e-Directive Registry from October 2010 to December 2013.
The West Virginia Center for End-of-Life Care receives funding from the West Virginia Department of Health and Human Resources. For more information, call 1-877-209-8086 or visit www.wvendoflife.org.