Patient Navigators Wade Through Complex Cancer Care

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A Port in the Storm

An increasingly common feature in the healthcare landscape, patient navigators are helping patients find their way through the complex world of cancer care.

 

By Diana Price

Suzanne was 43 years old, single, and running her own business in New York City when she found herself challenged with a frightening diagnosis that launched an extensive medical journey. Her doctor told her that she would need surgery to remove ovarian tumors, explaining that he would not be able to tell if the tumors were cancer until they had been removed and biopsied. If they were found to be malignant, he said, the same surgery may also include a hysterectomy.

The idea that she would go into surgery and potentially emerge with a cancer diagnosis and the inability to have children was overwhelming for Suzanne. “The situation completely freaked me out because at 43 I knew I still had a chance to have children—my sister had her last baby at 44,” she says. “It’s scary enough to go into surgery, but it’s scarier to not know until I wake up if I have cancer or if I had a hysterectomy.”

Suzanne’s anxiety was exacerbated by the fact that her family lived in California, and she was facing the issue on her own. Aware that she would need support, she reached out to Kathryn Gurland, LCSW, a Cancer Navigation Consultant and the founder of Peg’s Group. “I felt that I needed a support network; my best friend had gone to some of the appointments with me, but I really needed someone who knew things about cancer that I didn’t know,” Suzanne says. “Kathy was able to direct me, went to appointments with me, and asked the doctors questions I wouldn’t have thought to ask.”

Gurland continued to help guide Suzanne intermittently throughout what would become an extensive process following that initial surgery as she visited multiple specialists and sought a clear diagnosis and a viable treatment option for what was discovered to be a very rare tumor type. None of the specialists she visited could confirm that Suzanne had cancer, though she was repeatedly told that because her condition “acted like cancer” the only option was to proceed as though the tumors were malignant—and even then they couldn’t be sure that treatment would be effective.

“There was something in me that kept saying, Something’s not right,” Suzanne says. “The cysts, when tested, always came back benign, so I couldn’t understand why all the doctors were telling me I had cancer.” Determined to find a physician who would listen to her and who understood her medical history and her concerns over treatment, Suzanne continued to advocate for herself. She was grateful for Gurland’s expertise and support during this time. “I was so overwhelmed with the whole thing,” Suzanne says, “but Kathy helped by saying, ‘It’s just one step at a time; you’ve got to compartmentalize it.’”

Ultimately, Suzanne’s persistence and Gurland’s insight led her to a specialist who admitted that a cancer diagnosis was not inevitable and that a novel treatment plan might be devised to treat the benign condition. “I had to really fight to get to where I am,” Suzanne says, remembering the intensity of that time. “And I needed guidance from Kathy because, as a single woman, it was hard to repeatedly hear doctors say, ‘You have cancer,’ even when I knew that wasn’t true. But if you don’t feel comfortable with something, you have to take control of your own life—you need to find a doctor who you feel understands what you’re saying.” Now, three years later, Suzanne’s condition is stable, and recent tests show that the current treatment has been effective. “It’s a process where we have to keep monitoring it, but I’m remaining positive,” she says.

 

Navigators Fill a Growing Need

As Suzanne’s story illustrates, a medical crisis—and cancer specifically—thrusts patients into a complex and foreign situation, wherein physical, emotional, and financial issues can create a perfect storm of stress and fear. Daunted as much by the alien nature of the process and the protocol as by the disease itself, patients and families are often at a loss as to how to access the care and the support they need. Increasingly, patients are turning to private professional cancer navigators, like Gurland, or to navigators employed by the hospital or cancer center where they receive care, to help guide them through the many aspects of diagnosis and treatment.

Originally coined by Harold Freeman, MD, in 1990 to refer to a community-based program he developed in Harlem to help uninsured and underserved cancer patients overcome barriers to care, the term patient navigation has evolved to have a much broader meaning. Encompassing everything from the fee-for-service model of private patient navigators to hospital-based programs, patient navigation generally refers to efforts related to guiding and supporting patients throughout their healthcare journey to ensure access to care and support. As the field has grown, it has attracted significant interest among clinicians and lay people seeking to take on the role of patient navigator—a title that now includes a broad range of professionals and lay people helping cancer patients (and others facing a wide range of medical issues) through the complex healthcare landscape.

So why the boom in patient navigation? Elisabeth Schuler Russell, founder and president of Patient Navigator, is a pioneer in the field and often works with cancer patients and their families. Russell says that the increase in demand for navigation services is a result of both the complexity of the disease and its treatments and the state of the healthcare system. “Cancer is all life-consuming and all family-consuming,” she says. “Immediately, the person who gets a diagnosis is thrown into this unfamiliar world of doctors and tests and treatment options at a time of intense fear and uncertainty and vulnerability. The patient is under a lot of pressure to find information, make decisions, find the best medical care, and of course cope with the enormous family and personal changes that this is all going to entail.”

Add to this intense scenario the deficiencies in our current healthcare system, Russell says, and there’s no question why people feel the need for the support and the guidance that navigators can provide. “The utter chaos of our medical system has led to the boom in this field: it’s inefficient; it’s expensive; it’s replete with medical errors; people don’t get good care; they feel dismissed; they feel humiliated; they feel afraid; and the most basic things that one might expect should happen don’t happen.”

Gurland, who works exclusively with cancer patients, says that the prevalence of the disease and its common place in our social conversation today means that when people find themselves facing the complex situation that Russell describes, they are now aware that they will need help coping with the challenges ahead. “Everyone knows someone who has cancer, and people talk about cancer now like they used to talk about allergies or hair color,” Gurland says. “It used to be much more discreet and carried more of a stigma. Now it’s a regular topic of conversation—and along with that comes more knowledge and more exposure.”

This increased awareness means more people are realizing that getting good care requires a clear-thinking, knowledgeable advocate. If a patient doesn’t believe that she can take on that role for herself, a professional navigator can offer welcome relief. “When someone is diagnosed with cancer, they will generally react in one of three ways,” Gurland says. “They’ll think, I’m a good advocate—I’m going to do it my way; or I’m not a good advocate, but I know someone who is and can help me; or I need a professional advocate.

For those patients who recognize that they need an advocate, patient navigators can be valuable members of the care team. Whether patients want help finding information about potential treatment options, need assistance accessing resources within the hospital where they are being treated, or want an objective ear to accompany them to appointments, there is likely a navigator available wherever they are on the continuum of their cancer journey to meet their needs.

 

Hospital-Based Patient Navigators

Patient navigators are increasingly common at hospitals, cancer treatment centers, and clinics, benefitting both patients and providers. Patients benefit when their burden is eased by the guidance of someone who knows the system and can help them use the services efficiently and effectively to optimize their treatment and provide support. The hospital benefits financially when patients are directed to the right resource at the right time and maintain and complete their treatment within that hospital.

There is no single standard model for patient navigation within healthcare systems, and missions vary among institutions: in some cases navigators are attached to specific departments or disease types (breast cancer navigators, for instance); sometimes they are trained and employed through the American Cancer Society (ACS) and placed within systems to help underserved patients overcome barriers to care; and some work within supportive care departments. Across these various models, the common thread is a desire to help patients access support and care efficiently within that specific setting.

At City of Hope, a National Cancer Institute–designated Comprehensive Cancer Center in Duarte, California, patient navigators are an integral part of the Department of Supportive Care Medicine. Natalie Schnaitmann, director of operations for the department, says that patient navigators at City of Hope tailor their services specifically to individual patients’ needs. “The navigator is a central point person who really knows the system and can connect with patients and families. They are a face, a hand that reaches out from the beginning and says, ‘If you ever get lost, reach out and I will help you get found,’” she says.

This might mean continual contact from the point of diagnosis; in other instances patients might reach out only when they encounter specific obstacles. In all cases, the navigators function as part of the fabric of the extensive department at City of Hope. “Patient navigators are an integral part of the highly collaborative Department of Supportive Care Medicine, which includes social work, pain and palliative medicine, psychology, psychiatry, spiritual care services, patient education, child life services, and a Patient and Family Resource Center,” Schnaitmann says.

To ensure that patients’ individual needs are proactively addressed, the department pioneered a screening tool, called SupportScreen, which facilitates real-time communication of patients’ psychosocial and physical needs to the right resource. Ultimately, Schnaitmann says, once patients connect with navigators, they provide an invaluable but intangible service: peace of mind. “In my mind the navigator takes off a 100-pound backpack that the patient is carrying and wears it for them,” she says. “It provides them the opportunity to focus on what they need to focus on.”

Uterine cancer survivor Alice Muntean, who was treated at City of Hope and utilized a patient navigator during her time there, says that being able to put her energy toward her treatment and recovery was key: “For me, having a navigator saved a lot of grief and frustration. My navigator, David—whom I call my City of Hope Angel—helped me with anything I needed, from setting up appointments and coordinating with my care team to completing forms and making sure I had what I needed on the day of treatment. He was basically my go-to contact for anything I needed as a patient.”

Providing a point of contact within a hospital system is also a goal of the ACS Patient Navigator Program, which focuses on medically underserved patients who may encounter prohibitive barriers to care. Rian Rodriguez, director of the ACS Patient Navigator Program, says that the program collaborates with cancer treatment facilities to “assist patients by removing barriers (including financial assistance, transportation or insurance issues, and assisting with communication with healthcare providers), to help patients stay in treatment and complete their treatment, thus leading to better health outcomes.” Rodriguez says that ACS navigators come to the job with a variety of backgrounds: some are lay people with a background in or knowledge of the healthcare system; and others, who may fill roles requiring more-complex care coordination, are nurses or social workers.

Another now-common hospital- and clinic-based navigator position is that of the oncology nurse navigator. Sharon Francz, executive director and cofounder of the National Coalition of Oncology Nurse Navigators, says, “Oncology nurse navigators generally view themselves as clinical facilitators for oncology patients, with a primary focus on education.” Francz says that these healthcare professionals help patients evaluate treatment options and understand processes and physician-provided information while also serving as patient advocates within the healthcare system and the care team.

Becky Trupp, RN, OCN, CBPN-IC, an oncology nurse navigator at Suburban Hospital in Bethesda, Maryland, says that her role is indeed varied but largely revolves around educating patients. “They see me at the time of their diagnosis, and I answer questions, help with appointments, and meet other needs they may have at that time. I also spend a lot of time on the phone, answering questions and calming nerves. I help people get insurance if they are uninsured, and I help with their financial needs, such as co-pay assistance.”

Melissa Hopkins, RN, BA, CBPN-IC, a diagnostic nurse navigator in Portland, Oregon, and a certified breast patient navigator through the National Consortium of Breast Centers, says that her role also revolves around providing information and support to ensure as smooth and efficient a process as possible: “A newly diagnosed patient can get lost trying to understand terms, roles of the myriad oncology practitioners, expectations of care, availability of programs, and how they all work together. A navigator educates, advocates, and supports the patient and the family so the impact on their lives is minimized.”

 

Private Patient Navigators

As patient navigation programs have grown within hospitals and clinics, the number of private patient navigators has also increased. Patients who seek out independent navigators are often attracted to the objective, flexible nature of the services these professionals provide.

Gurland, whose background includes private psychotherapy and emergency department, oncology, and hospital social work, says that the unbiased approach of private navigators is a draw—they can guide patients beyond the confines of a specific hospital system and provide services related to a host of other needs. “I don’t have a limited model of services,” she says of the broad scope of private navigation. “Whereas an institutional social worker might say, ‘This is what we can do for you,’ I can say, ‘What do you need?’”

And assessing a patient’s unique needs is key, Gurland says. She stresses that patient navigators serve patients best when they abide by the social work axiom Start where the client is at. To that end Gurland has devised an in-depth needs assessment that she employs when working with patients. “My professional assessment has 13 areas, including medical, legal, insurance, psychosocial, caregiver, family dynamic, social life, leisure and recreation, travel, spiritual—I go through the whole gamut,” she says. “Because with cancer it’s always something, so you have to be open to current and changing needs.” Once needs are assessed, a navigator can move ahead to serve a client in whatever way is most beneficial, which depending on the client might mean anything from helping research a diagnosis or treatment option and sorting through medical bills to arranging in-home food delivery or helping with the transition to end-of-life care services.

Elisabeth Schuler Russell also tailors her approach to each patient’s unique needs. “Some people just want specific information to share with their doctors; some people want hand-holding. Each person is different in what role they want you to have and what they want to share.” No matter the degree of involvement or number of services she provides, Russell is motivated by a desire to help patients at this vulnerable, confusing time. “My belief is that no one should have to figure this out on the job, which is what usually happens,” she says. “So often there is no lifeline; nobody hands you a guidebook and says, ‘Here’s what you do.’”

It is rewarding, Gurland says, to be able to step into this breach and provide patients and families with support during such an intense time. “What I love is that I’m able to be an unbiased, unemotional, and supportive person who will allow patients and caregivers to direct their own care,” she says. “I can be detached emotionally and look at the situation analytically, anticipate their needs, and take a burden off their shoulders.”

 

An Evolving Field

There is currently no national credential for patient navigation, and the use of that term among a wide variety of lay and professional providers who all offer slightly different services can make the search for a qualified navigator confusing. There is an increasing number of organizations seeking to remedy this by offering certifications and training in patient navigation, and efforts are under way among some current navigators to professionalize the field.

As founding member, former vice president, and current president of the National Association of Healthcare Advocacy Consultants (NAHAC), Russell is among those seeking to professionalize the field and develop a credential. NAHAC has developed a code of ethics, meets regularly for educational conferences, and strives to educate consumers about the role of patient navigators. “We want to educate people about what to look for in an advocate and to teach the public self-advocacy skills,” she says.

In answer to the question of what patients should look for in a navigator in a field where that title means many things to many people, Russell advises patients to carefully review the navigator’s experience and references as a first step. With the current boom in this field, she worries that well-intended navigators may not always have the skills necessary to serve patients in all the needs that can arise in the wake of a cancer diagnosis. She cites the need for an understanding of in-depth clinical research practices and insurance issues as examples of areas in which navigators must really be well-qualified, and she hopes that a standardized credential will help establish a common, high level of understanding that will serve patients well. “I think ultimately the three most important qualifications of navigators are competence, compassion, and credibility,” she says.

Gurland also urges patients to be aware of exactly what the navigator’s capabilities are and to be especially careful of viewing survivorship itself as a guarantee of expertise—a personal experience with cancer does not a navigator make. “Find out what the navigator’s skill set and background are; and if the navigator is not qualified, go to another source.”

 

A Welcome Resource

The rise in the number of hospital-based and private patient navigators should be no surprise to anyone who has spent time making their way through the healthcare system—and especially to those who have faced a cancer diagnosis. Managing the stress of physical, emotional, and financial challenges within a system that is increasingly complex requires a significant commitment of time and energy that patients often don’t have. Having a trained professional guide you through the steps of the process allows you to focus on healing. As the field of patient navigation continues to evolve and becomes more widely recognized, patients stand to benefit considerably from this welcome resource.  _

 

Partners in Care: Navigators Ease the Burden for Caregivers and Patients

Caregivers provide invaluable support for cancer patients, taking on a variety of tasks to help ease their burden—whether by taking care of practical support, providing emotional support, or both. Cancer navigators can help caregivers in these efforts—and can provide relief to the caregivers themselves, as well.

Kathy Gurland says that many of her clients are caregivers who seek out Peg’s Group to help find answers for a loved one. And while the initial call may be directed at meeting a patient’s needs, Gurland says the benefit is actually twofold. “First, when a caregiver reaches out to a navigator for information or support, they take a burden off the patient by allowing the patient to focus on their health and well-being and alleviating anxiety,” she says. “But second, the caregiver actually benefits because they receive support themselves at a time when they are likely worn out.”

Gurland hopes that more caregivers will realize the help available through navigators—both those available within hospitals and treatment centers and those in the private sphere—because the benefit can be great. “The navigator is someone who can say, ‘Yes, I have answers,’” she says, “while also encouraging the caregiver to take care of his or her own needs.”

 

 

A Personal Mission

Many patient navigators are drawn to the field after

experiencing cancer in their own lives.

Many patient navigators are inspired to enter the field of cancer navigation by a personal experience with cancer, either their own or that of a loved one. Kathy Gurland lost her two sisters, Judi and Peggy, to cancer, and it was after serving as her sister Peggy’s advocate and navigator that she realized the benefit to patients and families of the services her clinical and personal background could provide. “Assuming the role of family member and healthcare professional for my sister Peggy evoked a strong desire in me to develop a private practice that could uniquely assist the many people who, like my sisters, would wake up one day and have their entire lives transformed by hearing a doctor say the word cancer,” Gurland says.

Elisabeth Schuler Russell also made the decision to enter into patient navigation based on personal experience with cancer: her daughter was diagnosed with an inoperable brainstem tumor at age two, and the family spent the next several years navigating the healthcare system. When her daughter recovered, Russell was determined to help other families facing the challenge of managing illness and medical crisis. Still employed in her job as a foreign service officer with the Department of State at the time, Russell made the commitment to use her experience in a positive way. “I knew that I wanted to advocate, educate, and solve problems for patients and families in the American healthcare system,” she says. “I wanted to help them find the way to the right diagnosis, doctors, and decisions.”

For Elyn Jacobs, a former Wall Street bond trader, her own breast cancer diagnosis, along with the diagnoses of her mother and sister, spurred her to help other patients and launch her own navigation business, Elyn Jacobs Consulting. Like many private patient navigators, Jacobs’s services are many and varied, and she augments her own background with ongoing training in cancer and navigation topics. “I’m not a doctor or nurse, and I don’t pretend to be,” Jacobs says, “but rather someone who is able to pull from my own experience and research to help patients fill the void between the medical professional and their needs.” Having given up a six-figure salary to enter this field and help others, Jacobs says that though her work is extremely rewarding, she does not yet make a living through her work as a navigator.

Russell says that she tells the many survivors she meets who express interest in joining this fast-growing field the same thing. “I have 1,500 people in a LinkedIn group I manage, and most are there because they have some interest in doing this work,” she says, “but I tell people that I don’t make a big income doing this work, and they shouldn’t expect to make a living as an advocate quickly, either. It takes time to build up a practice.”

As Gurland’s, Russell’s, and Jacobs’s stories illustrate, those inspired by their own experience to become navigators despite this reality may have a higher objective: making a difference in the lives of those affected by cancer.