Mary L. Mancini, RN, BSN, is the architect of the nurse navigation program for Our Lady of Lourdes Memorial Hospital, an Ascension facility based in Binghamton, N.Y. She created the program in June 2009.
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Q: As someone who spearheaded the development of a nurse navigation program, what are your feelings on the growth of nurse navigation nationwide?
Mary Mancini: Nurse navigation is an exploding phenomena. The word navigation is used so much, I fear it sometimes appears to be watering down the title. I believe wholeheartedly that the title should be reserved for the cancer population. I also believe that every patient diagnosed with cancer should be assisted by a nurse navigator. A navigator is the person familiar with the health care arena in cancer and compassionate care to guide and comfort. The origin of navigation stems from its “godfather” Harold Freeman, a cancer surgeon and humanitarian from the Bronx, N.Y. I was lucky enough to have graduated from his navigation institute, thus earning my certificate in navigation.
Q: What is the most important work you do as a nurse navigator?
MM: Guiding patients with cancer in order to improve access to care, alleviate fears, assess for barriers to receiving care and eliminate as many as possible, and coordinating timely care across the continuum from diagnosis to survivorship and/or death is the hallmark of navigation. Nurse navigation brings care which is tailored to a patient’s individual needs, which are not always what we as healthcare professionals always think they are.
For example, during my first day meeting with a young woman diagnosed with both breast cancer and a glioblastoma, I imagined that her very serious diagnosis would be the most pressing concern on her mind. How far this was from the truth. She said to me, “I will handle this cancer stuff. But what I cannot cope with is the fact that my wife left me and how difficult it is to see my daughter.” She told me her most demanding needs were emotional and psychosocial support, as this situation would ultimately affect her ability to cope with treatment. In addition, she was leaving her home city and all of her friends to move in with her mother, a couple hundred miles away, who would care for her.
I knew that social work would be helpful, but I’d also have to be gentle in providing her guidance to earn her trust through compassion and consistency as well as knowledge.
Q: What do you like best about your job?
MM: Navigators work with people who are not only very vulnerable and in physical pain but become very emotional and face mental anguish as patients with cancer are often looking death straight at its face. This rollercoaster of emotions can sometimes seem unbearable. Being a trusted partner in their healthcare is an honor.
Some of my most cherished moments are those initial meetings with patients during a consultation with a provider or while in my office as I watch the terror in their eyes fade as we talk. They start to believe that I may be the beacon through their darkness. I learn about their families, their personal lives, what jobs they’ve had or hold, and sometimes their unique talents and/or hobbies. Everything I learn about them helps me to better understand their values and needs, and this builds the foundation which we need while coordinating their care.
My concerns which are often addressed at this time, include the following: Does the patient have additional supportive help, transportation, and are they going to continue working? Will I need to try to coordinate as many appointments back to back as possible or will they need to fit a dynamic schedule? What kinds of educational needs do they have? Will they understand the written information that I provide to them and the education I will present? How will their treatments impact them financially; will they need some financial support?
Q: Can you share any particular patient stories or experiences that demonstrate the value of nurse navigation?
MM: In addition to the day-to-day navigation, I provide a support group for newly diagnosed patients and/or those who are undergoing treatments. We have regularly scheduled group discussions, but I also incorporate artistically therapeutic projects, complementary therapeutic speakers, and speakers who touch on legal issues such as wills, powers of attorney (POAs), and health care proxies HCPs.
Managing the support group is one of my favorite responsibilities because watching the patients come into the room, mingle, and forge friendships, comradery, and hope with one another is simply magical. During a past group meeting, our topic of discussion was to touch upon our “one day I want to do this” item/items. Needless to say, there were some pretty amazing stories that grew from this. One very special event made footprints on my heart was a young lady of 40 years with stage IV colon cancer who said she had wanted to marry her longtime boyfriend. She became hospitalized and it was evident that she would not be leaving. She was very ill, oxygen dependent, experiencing severe peripheral edema, and weakened.
I heard her speak of this desire again in her hospital room and asked her if we could plan a wedding together. Within two days, we had that wedding! I decorated her room with tulle fabric and glittery bows; called in a pastor friend to meet with them to officiate their marriage and a guitar player to play her chosen wedding song (“A Whole New World” from Aladdin.); arranged flowers; invited her family; arranged a photographer; ordered a wedding cake; and she wore my wedding veil from my very own wedding many years earlier.
She passed away two days after her wedding, but I and so many others will always remember her beautiful smile from that day.
This leads me to the final, most difficult part of nurse navigation: The end of a life. Establishing a trusted relationship with a patient that can last days, weeks, months, or years can be very helpful for the patient that is facing end-of-life decisions. That relationship offers comfort with difficult discussions, both with patients and their families. As I hold the hand of a dying patient and wipe their forehead with a cool cloth or simply embrace a grieving family member, I know in my heart the value of my role as a nurse navigator.
Q: What would you say to an organization that is contemplating whether to implement a nurse navigation program?
MM: For those considering starting a navigation program for their patients, I would recommend keeping track of all metrics, as having numbers and documentation to support the effectiveness of the program will be vital.
I recommend practicing patience in time for the concept to be received and utilized in your facility. It was a slow and difficult start for this navigator.
Also keep in mind that it will take a lot of staff and physician education, and your constant presence for the program to kickoff. But once the providers start hearing feedback from your patients on the helpfulness which a navigator provides, referrals will happen. What I have found is that your patients will become your most valuable referral source. They tell their friends who tell their friends and your navigation program grows.