PracticeUpdate: Haematology & Oncology

FEATURE ARTICLE

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Patient empowerment and end-of-life planning: the role of the nurse navigator

Interview with Lillie D Shockney RN, BS, MAS

Farzanna Haffizulla, MD, FACP, FAMWA, and Lillie Shockney, RN, BS, MAS, Administrative Director at the Johns Hopkins Breast Center and Cancer Survivorship programs, talk about patient empowerment and the role of the nurse navigator in patients with breast cancer.

milestone in my life there has been a card there for me.” She said, “When I got my driver’s license when I turned 16, my Aunt Sarah gave me a card and my mother wrote inside of the card, congratulations on getting your driver’s license. Please drive like Aunt Sarah, don’t drive like your father,” and she said, “It didn’t matter what the milestone was my mother’s presence was there.” I’ve tracked you down today to tell you that 3 weeks ago I got married. When my Aunt Sarah put my veil on my head she handed me a card from my mom,” and she said the edging of the envelope was yellow because it was 14 years old. And she said, “I opened it and it was a beautiful card.” She said, “I opened the card up,” and it was the left hand side that was blank where her mother had written, and she said, “Seeing my mother’s handwriting and reading the power in her words.” She said she wrote I know you would have chosen wisely who is deserving of having you spend the rest of your life with. In the middle she wrote marital advice – don’t ever go to bed angry with one another, whatever it is can be talked through. And at the bottom she wrote, when your dad lifts your veil and kisses your left cheek you will feel me kiss your right; and she said, “Ms Lillie, I have tracked you down to tell you I swear I felt my mother’s kiss. I have always felt my mother through the presence of these cards.” And she asked me, “My Aunt Sarah won’t tell me if there’s any more cards, so I’m assuming that was my last card?” I said, “If you plan to have a family,” and she said, “We do. We hope in a year or two to start a family.” I said, “When you learn you’re expecting there will be a card from your mother, she will describe how she felt when she learned she was carrying you. When that baby is born there will be another card and a letter in that card for you from your mother describing how she felt the first time she held you; all of the hopes that she had in your future.” I said, “And then when this little baby is 2 or 3 years old, that child will hear his or her mom’s voice through a cassette tape where we had her record children’s stories.” She said, “This is wonderful, but can you tell me what a cassette tape is!” Now thank heavens I’m able to get recordable books that we can have the patients record for each page, and snap a little thing in the back that then preserves it, but I’ve done this a very long time. Dr Haffizulla : Unbelievable and you started this off, which is tremendous. Shockney: I did because I was so frustrated with having to say to patients, “I’m so sorry you won’t be here,” and I thought, “I’ve got to figure out a way to stop saying that because there has to be another way we can fulfil these kinds of hopes.” Ms Shockney is an expert in breast cancer treatment and a tireless advocate for breast cancer patients. She is the Administrative Director of the Johns Hopkins Breast Center and Cancer Survivorship Programs. She holds a chair as a University Distinguished Service Professor of Breast Cancer and is Professor in the Departments of Surgery and Oncology at the Johns Hopkins School of Medicine — the only nurse to have ever had a primary appointment in the school of medicine.

We may have a patient that we thought was a relatively early diagnosis, may have had a few positive nodes. We then find after we’ve done scans for staging workup that in fact the patient does have stage IV disease. We want to make sure that they’re getting very specialised support in that regard. But I’ll tell you that, again, we’re asking that patient, “Tell me your life goals before you heard that you had stage IV metastatic breast cancer.” It’s not for the purpose of having the ability to preserve those goals as it was in the case with the earlier diagnosed patient. It is for the purpose of identifying how can we help this patient fulfil these goals, these hopes in alternative ways, because telling a patient, “I hope you have a miracle and you will be here for your daughter 14 years from now when she walks down the aisle,” is not realistic and frankly, it’s inappropriate. We need to be optimistic for as long as it’s realistic, but we also need to provide them the resources and the support that they need to prepare for what is going to lie ahead. One of those resources that we give patients is having them attend retreats. I’m in the tenth year of doing retreats for metastatic breast cancer patients every 6 months. One is for couples, so the patient brings her spouse, her partner. The other is for women who are not in a relationship and they will bring a female caregiver… it could be their mother, daughter, sister, even their best friend; whoever is that person that is their primary support. And taking care of them at this point in time, and in asking these patients, “Tell me what these life goals have been.” Anyone that has young children says, “I’m not going to be here and who will instil my values in my child. Who will make sure my child remembers me. How will my child know how much I love her or him.” So one of the tools that we provide are boxes and boxes of cards. I get cards donated from all kinds of unusual sources, and cards for birthdays, for boys age 1 to 21, girls the same, for Bar Mitzvah, for communion, when you get your driver’s license, high school graduation, college graduation, when you get married, when you have your first child. What do you want to tell your daughter when she finds out she’s pregnant, what do you want her to know; so they take home these cards. Cards are expensive if I send them off to a card store, quite frankly, and I don’t want that to be a barrier. I tell them stories while we’re together for these 3 days and 2 nights of other patients that have done this years ago, and that I am privileged in getting phone calls and letters from young children who are now adults. I guess it’s one of the thankful things that I’m still at Hopkins after more than 33 years, because I got a phone call from a woman two Junes ago and she said, “I’ve never met you. I’m so thankful you’re still there because I only knew your first name.” She said, “You took care of my mother 14 years ago when I was 10, and that’s how old I was when my mother passed away.” She said she was in the hospital a lot her last few months, and she said, “Each time she would come home I would hear her tell my Aunt Sarah, her mother’s sister, ‘Lillie said to do this and Lillie said to do that,’ but I didn’t know who Lillie was or what you were telling my mom until my mom died. Then my Aunt Sarah became the keeper of my cards,” and she said, “Every

Dr Haffizulla: Can you share the resources, websites, or informational resources with our viewers, for those especially who may want to become a nurse navigator and also for patients on the patient end. Shockney: Sure, so www.aononline.org is the site that I would direct people to. I’m actually the founder of the Academy of Oncology Nurse and Patient Navigators. We’re almost 7 years old and we have a little over 6000 members of nurse navigators and some patient navigators, so it’s a growing profession. These individuals take great pride in being the advocate for the patient, and it’s one of the very first times that a nurse has been able to follow the patient from the point of diagnoses all the way through to the end of their treatment into survivorship or to end of life. Prior to this, oncology nursing focussed on certain phases of care, surgical oncology nursing, get the surgery done, medical oncology for chemotherapy, targeted biologic therapy, hormone therapy, etc, and radiation therapy. Now we’re looking at it all the way across the continuum; again doing that transverse cut of where’s this patient going to be touched and when do they need support and help. How can we not just help them to understand information from a clinical perspective, but provide them the psychosocial support that they need, and make sure that we always are respecting them and having their voice heard.

And then when this little baby is 2 or 3 years old, that child will hear his or her mom’s voice through a cassette tape where we had her record children’s stories. She said, “This is wonderful, but can you tell me what a cassette tape is!”

When you put on a hospital gown I don’t care how extro- verted or confident you are, which includes myself… but you put me in a hospital gown and sit me on an exam table I am powerless. I am absolutely powerless and all because a patient’s sitting there nodding their head while a doctor is saying, “I think we need to do this, this, and this,” doesn’t mean they understand a single word. Dr Haffizulla: Absolutely. If a nurse navigator starts to follow a patient and they move do they stay with that particular patient or are they assigned to someone else? Shockney: It depends on what the cause of the move is, so for example, there are some navigators that we have at Johns Hopkins that specialise within breast on certain patient populations, such as metastatic breast cancer.

Watch the full interview with Lillie D Shockney on PracticeUpdate.com

VOL. 1 • No. 5 • 2016