The Stories of Three Students by Susan Bryanna Harman
Patient Navigators assist individuals with their healthcare needs by offering emotional support, improved access to care and resources, help in navigating complex medical systems, patient advocacy, and the teaching of self-advocacy. The new, one-year Patient Navigator Certificate Program, now half way through its first year, is being offered at Sonoma State University (Department of Extended Education) in partnership with the Integrative Medical Clinic Foundation. Several students in the program agreed to be interviewed.
The Program emphasizes interactive and experiential learning: practicing active listening and motivational interviewing; role-playing with different kinds of “patients;” personally experiencing a wide range of alternative health modalities; learning about medical and insurance systems; receiving “hands on” experience through internships in a variety of local healthcare settings; presenting case studies to the group; and learning from each other’s experiences.
A relatively new field, Patient Navigation has been mostly limited to the field of oncology. This program expands the existing model of Navigation: it teaches support for cancer patients and those with chronic diseases and other health concerns; it includes the integration of complementary, alternative medicine resources; and it trains lay Navigators as well and those who are already licensed clinicians. Below, the students themselves give a fuller picture of Patient Navigation through their stories.
Students in this first class were drawn to the program for different reasons and have varied backgrounds. However, most have had personal experiences which deeply touched them and which highlighted the need and desirability for the services that Navigators provide. The students interviewed were passionate about their desire to make Patient Navigating their career. Skills and attitudes they’ve learned from their personal experiences have helped them in the program; likewise, the skills they’ve learned in the program have had a profound effect on each of their personal lives and relationships.
Program Coordinator and Teacher, Pam Koppel LCSW, said that students tend to fall into three categories. Some participants have personally dealt with cancer or some other illness and became aware of gaps in the health care system; tough experiences were made even more challenging by not having the kind of support provided by Navigators. Some students have been in situations where they found themselves informally navigating for others, with a few accompanying someone they were close to through the experience of a life-threatening illness that included being with them and supporting them through the dying process. In the third group, the participants have a clinical background or have worked in a healthcare setting, and they have witnessed the absence of support services that would benefit patients. These students decided that they either wanted to add new skills to their current role or make a career change to become a Patient Navigator.
Cheryl is a sign language interpreter and body worker, who practices Vipassana, a form of Buddhist meditation and has studied non-violent communication. She said that she had wanted such a program for over ten years. When the program became a reality, the timing was perfect for her as she had just gone through the profound experience of being with someone very dear to her during the last months of that person’s life. The experience deepened her ability to “hang in there in the not knowing” and to respect the other person, even when that person’s feelings and beliefs and treatment choices were different from her own.
It is the program’s focus on honoring patients, deeply listening to them and meeting them where they are, that is most meaningful for Cheryl and is an extension of her spiritual path. She said that the challenge is to “check your own agenda at the door” and to not lead or fix or assume that you know what is best for patients. Instead, the intent is to help them clarify where they are now, where they want to go, what their path is, and what are their wants and needs. Though advocacy plays a role when needed, the focus is on empowerment. This is especially important for patients at a time when they may feel like everything in their life is out of their control.
Cheryl said that the program is helping her with her “cutting edge” of learning when she is potentially being intrusive, even by asking what seems to be an innocuous question which may, in fact, be a subtle and maybe unconscious attempt to impose her own belief system. And, she stressed that when navigators are upset by an interaction with a patient, they have to learn to handle their own reactions and do self-care. Instead of reacting with shock or dismay at differences, such as the patient making different treatment choices than the navigator would, she might now ask, “tell me more about that” or “how is that for you?” “Instead of trying to change them, she’s learning to accept and let them be who they are.”
Cheryl’s internship is about to start at a Sutter medical office in Santa Rosa. She said that Patient Navigators play a different role and can be with patients in a different way than what doctors and nurses have been trained for or have time to do. Through the Navigator’s careful listening, patients know they are being heard and Navigators may discover important issues that wouldn’t necessarily come up in a doctor’s visit. They can also help patients articulate their needs and be clearer about their questions for the doctor or nurse. Cheryl, whose work as in interpreter is independent and can be isolating, likes collaboration and would like to be part of a care team after finishing the program.
Katie RN has a varied background in healthcare including working in obstetrics, neurosurgery, community health, hospice, and being a massage therapist. Her primary work for the last 4 years has been for the Multipurpose Senior Service Program in Marin County, which provides care management to assist frail, low-income seniors to remain at home. She wants to change her health care role to Patient Navigator and this certificate program, with its special focus in complementary (alternative) medicine, “offered the perfect blend” for her.
Katie said that “learning active listening has been huge!” She initially came from her nursing role of wanting to solve problems and provide solutions; she’s had to learn to listen to what the patient wants. The role plays have been eye-opening and very powerful. One “patient” didn’t want chemo or anything to do with
Western medicine. “It was just a role play, but I was so upset with her decision. She has cancer. How could she not want to even consider what Western medicine has to offer?”
Another role play patient had an “ornery disposition. He was in an angry place and wouldn’t agree to anything.” The challenge was to meet him where he was and “help him get to a place where he could know what he wanted to do.” This situation was later mirrored in Katie’s personal life. She had two friends who recently had breast cancer reoccurrences ten years after they’d originally been diagnosed and treated. Besides being shocked, one was angry and lashing out verbally. Katie was able to be with her in a different way than she would have been before the program.
Both friends noticed that Katie had changed and was asking different kinds of questions than she did ten years before. One of her friends was on the East coast and had a Patient Navigator; she told Katie that the Navigator had been incredibly helpful, one of the most important people on her team. This friend’s mom was local and Katie was able to support her friend by supporting her mom, “something I might not have done in the past.” She’s more aware of the bigger picture and how much family, friends, and even pets are part of patients’ support systems. Initially, she had needed to unlearn approaching patients as a nurse. Now her role is changing again during her internship as she shadows Cindi, an Oncology Nurse Navigator at Sutter in Santa Rosa. Nurse Navigation is probably the closest role to Patient Navigation, though nurses may do additional clinical activities such as going over lab and test results and explaining procedures and treatments. Oncology Navigation is the area that Katie wants to pursue.
Patrice dealt with breast cancer ten years ago and its repercussions ever since, including procedures and surgery this past summer prior to beginning the certificate program.
At the time she was diagnosed, Patrice experienced cancer healthcare services as being fragmented which resulted in some difficult situations in which she had to make decisions, sometimes alone, without adequate information about options and resources. She said that now there is better coordination of healthcare services, in part due to patient navigators, and more access to complementary modalities; in addition, there is an active and supportive cancer community.
Patrice had been a massage therapist when she was first diagnosed. She has trained with both hospice and hospital chaplaincy, and worked as a Dialysis Assistant. While facing different challenges from cancer patients, dialysis patients were also facing their mortality; she saw that many of them needed additional resources.
Patrice often found herself informally playing the role of lay navigator and supporting other patients with whom she came into contact, often in waiting rooms while there for treatment and follow-up appointments. And as a survivor and part of the cancer community she has supported and advocated for others during doctor’s appointments, shared information about resources, and accompanied them through the dying process. She has learned that even advocating can be empowering; by modeling self-care for others, including learning to ask for help, it’s teaching them “how to fish” and how to be their own advocate.
Without Patrice mentioning her survivor status, patients sense that she understands the fears and uncertainty that accompany the diagnosis of a life-threatening illness. Her experience has given her first-hand knowledge of medical terms, tests and side-effects, and has helped to alleviate her fears of the unknown. She remembers how important it was when she was given a soft, feminine camisole that was also practical, to be used following her first mastectomy, ten years ago. She knows how helpful complementary modalities can be, and has discovered that she can make a difference and that she loves doing it.
During her more recent hospitalization for a prophylactic mastectomy, Patrice felt lucky that she had caring friends and family, a supportive community, finances, a home, and her spiritual practice She recognized that her roommate’s situation was a sharp contrast to her own. Facing a long course of treatment for breast cancer, she had very few resources. Patrice used this opportunity to make her aware of resources for transportation, food through the Ceres Community Project which combines teaching teens about healthy cooking and providing nutritious food for those dealing with cancer and other life threatening illnesses; and the Integrative Health and Healing Services program (IHHS) at Sutter North Bay Women’s Health Center which offers free complementary therapies to women dealing with cancer.
While knowing that it might be difficult for some to understand, Patrice says that cancer was a “gift…one of the best things that ever happened to me.” She’s very different than she was pre-cancer; she’s more confident, more authentic, and she knows who she is and what she wants to do with her life. Aware of her mortality each and every day, she has a greater appreciation for life; colors are more vivid, she’s aware of more beauty, and she wants to “take life and use it in a positive way.”
She knows she “can’t make patients better or spare them their journey,” but she also knows that cancer can be transformational, even for those who don’t survive it. She can “hold” that as a possibility for others, even while being with them exactly where they are.
Patrice is doing her internship at Sutter’s Women’s Health Center. “It’s my ideal internship,” she says, and where she would like to work after finishing the program. She hopes to help facilitate both patient and survivor groups as part of her future work. She feels appreciated by her Nurse Supervisor whom she feels sees her as a unique resource because of her personal experience. Much of her own follow-up care occurred at the Women’s Health Center. When the Sutter Breast Care Program was getting started she was on the ’04 Community Advisory Council and helped write the mission statement; she envisioned herself working there someday. She said, “I feel like I’ve come full circle.” This work is what she wants to do, is meant to do with her life.
Patrice desires “to be the person for others that she would have wanted” ten years ago.
Pam Koppel LCSW was a hospice social worker before doing her pioneering work in Patient Navigation. She said that her early work at hospice was an advanced form of navigation. Pam has 20 years experience as a healthcare provider and has been working in the field of Integrative Medicine since 1996. She, along with Dr. Robert Dozor, co-founded of the Integrative Medical Clinic of Santa Rosa. She has been the Integrative Provider Team Facilitator and Mentor at IMC for the past 11 years developing and guiding the team process. She initiated and led the Integrative Patient Care Conference model at the clinic. She continues as a consultant to the IMC Provider Team and the IMC Foundation and is currently working toward her certification as a Balint Facilitator.
She currently holds the position of Program Coordinator for the Sutter North Bay’s Integrative Health and Healing Services Program. This is a program that offers free complementary therapies to women going through cancer treatment. She has been providing Integrative Health Navigation services for the past 13 years and her dream is that every doctor’s office and clinic provide Patient Navigation Services.
Pam said that Navigators help patients put together a map of the big picture, assisting them in clarifying their needs and priorities, identifying existing support, and helping direct them to other resources to fill in the gaps. The Navigator makes things cohesive; the various clinicians and practitioners work with patients on the details, whether in medicine, physical therapy, psychotherapy or acupuncture. She designed the program to be, like a good Navigator, non-agenda based, respecting and focusing on the patient’s agenda.
Vicki LCSW at a large clinic, spends her day navigating cancer patients. She’s also had an acupressure practice for many years and thinks it’s very helpful when Navigators have familiarity with complementary healthcare.
Her current “navigation position” as part of a cancer support program is a varied role: she acts as counselor, educator, resource expert, care coordinator, and advocate. It’s different every day. People are newly diagnosed and need to be assessed. Patients get difficult news and she’s there to support them. Others are receiving chemotherapy and need education: she makes sure they understand the medical information they’re being given, she might go into more details when needed, and may assist them in exploring their options and resources. Some people need a little help, some a lot.
There are many titles and roles that overlap: Case Manager, Patient Advocate, Ombudsman, Nurse Navigator, and Patient Navigator. Vicki says “Navigation takes on different roles depending on the needs of the organization and the patients they serve.” In her case, her work includes counseling and “holding the space” for people to bring up their concerns.
When asked what makes a good Navigator, Vicki said, “Being a good communicator, first and foremost! You need to have a good relationship with a lot of different people, from patients to doctors and other care team members, to people at community agencies. ” She says that besides being a careful listener, a navigator needs to be diplomatic, be able to hold confidences, and make sure that things get taken care of.
Vicki believes that Navigators play an important role that patients value. Patients get tired of everyone telling them what to do; they are grateful when they feel listened to and heard. More healthcare facilities are recognizing that hiring Navigators “is a cost-effective way to provide really valuable and much needed care.”
The students interviewed expressed appreciation for the certificate program’s existence and its three teachers, Pam Koppel LCSW, Amy Schiff L.Ac, and Ellen Barnett MD. The program so far is very successful and is evolving. Pam said that in the future there might be two program tracks, one for lay Navigators and one for licensed clinicians.
The interviewed students said that they didn’t mind being part of the program’s first year and helping in the process of determining what works and how the program can be even more effective for next year’s students. They emphasized how much they like the class interaction, the role plays, and especially support from other students; some are planning on continuing their support group after the program is completed. Patrice, Cheryl and Katie are passionate about making Patient Navigation their career.
This article has been generously written by Susan B. Harman. The Foundation is grateful to her and to all who agreed to be interviewed.