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It's about quality of life, not quantity

Glennon, Rian

doi: 10.1097/01.NURSE.0000451536.40340.99

Rian Glennon is a clinical associate at Abington Memorial Hospital in Abington, Pa. She's currently enrolled in the hospital's Dixon School of Nursing to earn her BSN.

The author has disclosed that she has no financial relationships related to this article.

MY COUSIN JOE is my biggest role model and the main reason I chose to become a nurse. When Joe was diagnosed with multiple endocrine neoplasia at age 12, his physician told his mother that he had only 10 years to live. Although the odds were against him, Joe always had an enthusiasm for life. He was an A+ student in high school, went on to college and earned a BSN, and worked as an ICU nurse. Sadly, Joe passed away in July 2012 at age 25, but he made a great impact on my life and taught me much that I'll continue to carry with me as a nurse.

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Troubling diagnosis

I was 6 years old when Joe was diagnosed with cancer. At the time, my mom told me only that Joe was sick, but that he'd be okay. I found out Joe had a rare type of cancer when I was in eighth grade. The only treatment was to remove the tumors that grew spontaneously throughout his body.

Growing up, Joe was in and out of the hospital for countless surgeries. His mother, who refused to believe that his cancer could never be cured, was always researching the newest treatments.

As a child, Joe didn't have much say in the decision-making process. His mom never told him that eventually his cancer would become inoperable. My family believed it was wrong to hide such a huge secret from him, but, at the same time, they wanted him to live his life as any other child would.

Joe chose to go to nursing school because he spent most of his time at a pediatric hospital's oncology department. The nurses, physicians, social workers, and other members of the healthcare team soon became his second family. He spent countless hours at physicians' appointments and undergoing surgeries. His healthcare team made a huge impact on his life, and he wanted to do the same for others.

When Joe began nursing school, he researched every detail about his diagnosis. In 2012, his physician informed him about an upcoming research study at Johns Hopkins Hospital. He and two others would undergo a new form of chemotherapy, which might or might not extend his life. My aunt begged the physicians to proceed. Joe, however, wasn't interested. He was 25 and could make his own decisions about his health. Although he humored his mom by attending every appointment to learn about this experimental therapy, in the back of his mind he knew he was going to refuse treatment. He realized that with the treatment he'd soon lose his hair, feel ill, and, most important, have to take time away from his work and social life. Joe spent the remainder of his life working three 12-hour shifts a week and socializing with friends. His focus was on quality of life, not the length of it.

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Refusing experimental drug therapy

When Joe finally told his mother that he wouldn't participate in the clinical trial, she couldn't believe it. As a mother, she wanted her child to survive and be cured. Joe, being a realist, knew this wasn't an option.

I can't imagine having to make the decisions Joe made for himself. I know if I were in Joe's shoes I'd want to live my life to the fullest and be healthy at the same time. He knew he wasn't fortunate enough to have both of these options.

If I were Joe's nurse, I'd do my best to remain strong, optimistic, and support him in any way that I could. I'd respect Joe and his wishes, even though they were contrary to his mother's.

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Quality time

One thing I've learned throughout nursing school is that nursing care is patient centered. Of course, you always listen and try to support the families, but, in reality, it's up to patients to make their own decisions about their health. Whether that patient is a stranger, neighbor, spouse, or other loved one, you must always remain unbiased and be an advocate for your patient.

Joe passed away over a year ago, but not a day goes by when I don't think about him. I know he'd be proud of my career choice. He fought every day of his life, not knowing what tomorrow would bring. Outliving the physician's initial prognosis of 10 years, he died unexpectedly of a cardiac dysrhythmia unrelated to the cancer. Even though the odds were stacked against him, Joe lived every day to the fullest. Remembering him, I try to do the same.

© 2014 by Wolters Kluwer Health | Lippincott Williams & Wilkins.