On the other side of the bed

Debi Boyle, RN, speaks with patient Lucila Mondragos.

In her 45 years of nursing, Debi Boyle, RN, has accumulated a wealth of knowledge. At UC Irvine Medical Center, Boyle is an oncology clinical nurse specialist and serves as a resource for nurses and the interdisciplinary team on patient care issues in cancer and palliative care.

UC Irvine Medical Center holds Magnet Recognition for nursing excellence. Boyle has worked in oncology for 35 years, has a master’s degree from Yale and has authored more than 200 publications and four books. But it was her personal experiences with cancer that changed her.

Her father battled lung cancer for five years, and her husband, Jerry, eventually died from bladder cancer at age 53. These events caused her to reexamine what nursing is and the impact nurses have on the lives of so many.

Debi Boyle shares her story

As a daughter of a patient, I was struck by the compassionate care I received at my father’s bedside—especially when he wasn’t doing well. These nurses’ expertise was not about lab values and ensuring the IV fluids were administered at a certain rate. They were about addressing my emotional distress of losing a father, a central person in my life.

The nurses asked me about my pain and allowed me to voice my sorrow. When my husband became seriously ill, I was again confronted with coping with the everyday demands of being a caregiver and the sole family provider while also attempting to deal with the emotional labor of loss.

I knew too much to negate what was coming before me. My husband became ill about two years after we were married. He had major surgery and chemotherapy; then he required radiation when the cancer spread to his bones.

Terrible pain and debilitation ultimately caused him to become bed-bound. While I always thought of myself as an empathetic nurse, I didn’t really understand how much responsibility we impose on families until I was on the opposite side of the bed. We expect families to be the nurses at home, 24/7, with no training and no support. On top of that, they’re anxious and worried, and this causes confusion and fear about not doing the right thing for your loved one.

I remember being in the bathroom one day with all of Jerry’s medications spread out across the sink, and I was getting mixed up in terms of what to give him. I remember thinking, “If I can’t keep track of this, how can a layperson do it?”

After I returned to work, I had newfound appreciation for the family’s role in cancer care. I realized that they need someone to listen to them, and they need help. Now I routinely ask, “What’s worrying you? What don’t you understand? What can I do to help?”

Admitting the need for help often is hard for family members because they want us to focus our attention on their loved ones. But we need to assume they are struggling, rather than assume they’re doing OK. While I learned it the hard way, I now know that cancer truly is a family disease.

— Debi Boyle, RN, UCI Health oncology clinical nurse specialist

— UCI Health Marketing & Communications
Featured in UCI Health Live Well Magazine Summer 2016