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August 2016 VOL 7, NO 7
Nurses Help Capture Patients’ Life Goals and Stories
The identification and fulfillment of their life goals should be an essential part of the care that cancer patients receive, according to Lillie D. Shockney, RN, BS, MAS.
“The patient is more than her pathology,” said Ms Shockney, the University Distinguished Service Professor of Breast Cancer, John Hopkins School of Medicine, Baltimore, MD.
At the 2016 ASCO Annual Meeting, Ms Shockney, herself a 2-time cancer survivor, discussed patient navigation (see related story), and shared personal experiences that inform how nurses can help patients fulfill goals, even patients with terminal illness.
It starts with asking the patient a critical question early on: “What were your goals at the moment you learned you had cancer?” Patients may say these goals are no longer important, she said, but with some probing the goals may reveal themselves.
“I just want to live. I have a 10-year-old to raise,” one patient said, to which Ms Shockney responded, “You just told me one of your life goals: raising your daughter.”
If patients express a desire to expand their family, then nurses can facilitate fertility preservation if that is appropriate, based on stage of disease, anticipated treatment, and so forth. The patient who wants to “show his commitment to his job” and perhaps receive a promotion can have treatment designed around his work schedule.
Her intervention for one young breast cancer patient may have salvaged a lifelong dream. “Talking about her life goals, she told me she worked at a bank, but that was just to pay the bills. She was studying to be a concert pianist, but only her family knew,” Ms Shockney said.
They needed to change her chemotherapy regimen to avoid the risk of peripheral neuropathy, she said, otherwise, she could “sacrifice her joy, her career goal, and the thing that gives her the greatest pleasure.” By asking about her goals, heartbreak may have been spared. “Let’s not let chemotherapy steal away more from the patient than is absolutely necessary.”
What About the Patient with Metastatic Disease?
An understanding of the patient’s life goals remains important in the metastatic disease setting as well.
“This doesn’t mean I will say, ‘Maybe you will be a miracle and survive another 14 years to see your daughter get married,’” Ms Shockney explained. “Rather, we want to be optimistic for as long as it is realistic and develop alternative ways to help the patient fulfill these hopes.”
One means of doing so is to provide cards and notepaper. Patients write to their children in advance of every special occasion, such as birthdays, graduations, marriage, and birth of children. They can tell their children how much they are loved, and they can give the advice they might have given, had they lived.
“I Felt My Mother’s Kiss”
The daughter of one patient looked up Ms Shockney years later and shared a story that speaks volumes. Ms Shockney recounted the story at ASCO.
“A young woman contacted me a couple of summers ago. She said she had never met me, but I had taken care of her mother 14 years ago when she was 10. She said that before her mother died of breast cancer, she had often mentioned me to her Aunt Sarah, saying, ‘Lillie said to do this, and Lillie said that.’ The young woman told me, ‘I didn’t know who you were until my mom passed way, and my aunt became the keeper of my cards. Every milestone of my life,’ she said, ‘my mother has been right there with me, giving me advice and expressing her love.’
“The young woman continued, ‘Three weeks ago I got married, and when my Aunt Sarah put the veil on my head she handed me a card from my mother. The edges of the envelope had yellowed, because, after all, it was 14 years old. I saw my mother’s beautiful handwriting, where she had written, “I know you would have chosen wisely, the man who would be deserving of your spending the rest of your life with,” and where she had given some marital advice, “Don’t go to bed angry; whatever it is can be talked through,” and where she had also said, “When your dad lifts your veil and kisses your left cheek, you will feel me kiss your right.”’
“She told me, ‘Lillie, I want you to know that through these cards my mother has always been guiding me, and I swear I felt my mother’s kiss on my wedding day.’”
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