When I was diagnosed with breast cancer in 2008, I felt like I was stepping down an indifferently-lit staircase into the Vast Unknown. At the time, the notion of nurse navigators was relatively new in my locale, and there were as yet none available. I could have used one. There was a dedicated breast health center, where clinicians from all the area hospitals who treated breast cancer could see their patients, along with a multi-hospital weekly tumor board where they could discuss treatment plans. Thus, my breast cancer surgeon, my radiation oncologist and my medical oncologist each worked for different hospitals, but I could see them in the same area and coordinate communication with them through the breast health center. Theoretically, that is. In practice, things didn’t work out that way. Instead, as I struggled to make treatment decisions, I also struggled with poor access, poor communication, poor coordination, and incomplete information. If I’d had a nurse navigator, she might have smoothed some of the bumps.
Now, as a homecare physical therapist with a specialty in oncology rehab, I deal with oncology nurses and nurse navigators regularly, from various cancer treatment centers. And they do help, especially when I or my patient just doesn’t know who the heck to call about a particular issue. But the road to coordinated cancer care is still bumpy for many patients.
When I began doing some research for this post, I was surprised to learn that the concept of cancer patient navigators was first conceived in 1990 by Dr. Harold Freeman and his colleagues at New York’s Harlem Hospital [Efficacy of Oncology Nurse Navigators]. And in practice, oncology nurse navigators have been around since the late 1990’s [Report on a Study on the Role of the Oncology Nurse Navigator]. Since then, defining their role has been a complex, ongoing issue, as well as defining the knowledge they need to perform their jobs. To add to the challenge, not all cancer patient navigators are specially-trained nurses, and some are not nurses or even clinicians. Some navigators are social workers, and some are lay people. As such, they may fulfill somewhat different roles in cancer care. In a study published in February, 2012 in the Journal of Health Care for the Poor and Underserved [Cancer Patient Navigators & Their Role in Cancer Care], the role of a navigator is defined as “an individual trained to help identify and resolve real and perceived barriers to care, enabling patients to adhere to care recommendations and thus improve their cancer outcomes.” These barriers may be economic, as well as lack of access to basic information about symptoms and preventative care. Thus, navigators may play a role across the spectrum, from screening to acute cancer treatment, to palliative care and survivorship care.
Recognizing this need to improve cancer care and to reduce cancer incidence and treatment disparities in the U.S. healthcare system, in 2007, the National Cancer Institute launched a pilot program [NCI Community Cancer Centers Program] in community hospital-based cancer centers to “support cancer research and enhance the quality of cancer care at the nation’s community hospitals.” Part of this program was to require cancer patient navigators. The hospitals that have taken part in this program have been studying ways to:
•Reduce cancer healthcare disparities
•Increase patient participation in clinical trials
•Improve quality of cancer care
•Enhance cancer survivorship and palliative care services
•Expand use of electronic health records and connect to cancer research data networks
•Promote collection of high-quality biospecimens to support genomically-informed research (also known as personalized medicine) [quoted from the previous link]
In 2014, this program was replaced with the NCI Community Oncology Research Program in order to “conduct multi-site cancer clinical trials and studies in diverse populations in community-based healthcare systems across the United States and Puerto Rico” in order to allow “access to a larger and more diverse patient population in a variety of ‘real world’ healthcare locations.” Meanwhile, cancer patient navigation continues, as well as efforts to refine the definition of the navigator’s role and the knowledge base needed by oncology nurse navigators in order to perform their jobs.
So, what do they do? Here’s a summary from Cancer Patient Navigators & Their Role in Cancer Care:
In my clinical experience with navigators, particularly nurse navigators, what they generally do when one of my patients has been diagnosed with cancer is to accompany them to each doctor visit, to help fill in the blanks about their treatment options and the potential risk vs. benefit of each option, to provide emotional support and facilitate practical support, to help coordinate care, and to serve as a go-to person when problems arise. In particular, I think one of most meaningful roles they can play is to help ensure that patients understand their treatment options and understands their efficacy and potential harms. I say this because I find that it is still too often the case that cancer physicians themselves either do not have the time to explain everything and answer all questions, or that they present only one treatment recommendation and do not inform the patient that there may be others. Patients are usually and understandably so overwhelmed and shocked by the reality of their diagnosis, they don’t even realize sometimes that they have a right to ask questions. Many patients are intimidated by questioning their doctors at all and may not feel brave enough to disagree with them or insist that their doctors address quality of life issues. A nurse navigator can really make a difference in such situations, so that the patient can arrive at treatment decisions that are truly informed.
Not all oncologists are alike, nor are navigators. Recently, I came across an article [You Have Nothing to Lose] by Lee Newcomer, who runs a cancer care center, about how an oncologist recommended treatment to a friend’s wife that did not reflect complete and current evidence-based information about this woman’s particular breast cancer. It underscored how important it is to have a thorough and honest discussion about risks versus benefits of treatment, and of the need to get a second opinion. We all want to be able to trust our doctors, but we also want the best treatment for us as individuals, with a full consideration of the impact of treatment on our lives. I could write another post entirely about recommended best practices for oncologists.
Also recently, I discovered that two of the navigators I deal with, who work in the same cancer center, see their roles differently. One of them tends to stick to the party line, as it were, explaining the side effects and efficacy of the particular treatment an oncologist recommends, but not offering information about other options that the oncologist may not have mentioned. The other is much more likely to encourage a patient to get a second opinion, to outline other options, and to emphasize that the patient has the right to disagree, question and be fully informed before making any decisions. It can be uncomfortable for nurse navigators to know that a certain oncologist, with whom they must regularly interact, may not be disclosing all the information a given patient needs for informed consent. It’s important for all navigators to have a consistent understanding of their role, as well as the support and education they themselves need to fulfill that role.
Another incident occurred recently when a patient attended her first chemo infusion. Her chemo nurse found that this patient had only a rudimentary understanding of the potential side effects of each of the drugs in her chemo cocktail, and immediately called a pharmacist to the scene to help her explain them to this patient and to the family member who accompanied her. This patient had a navigator, but somehow did not understand what she needed to deal with the treatment she was about to undergo. There can be a lot of reasons for this. As many of you know, it’s extraordinarily difficult to obtain and understand all the information you might need to make treatment decisions, and to understand all the ramifications of those decisions. It often feels like we are required to take, in effect, a crash course in clinical oncology in order to understand what is going on. Not every patient is equal to such a task, nor are her family members. Many patients still prefer to just leave all the decisions up to their doctors and endure the consequences.
In the meantime, researchers continue to study the efficacy of oncology nurse navigators, sometimes struggling to come up with parameters that truly reflect the value of the role they may play in cancer care. One such study reviewed the current research on this subject [Efficacy of Oncology Nurse Navigators]. Looking at 18 studies, it organized data by “rationale for implementation of nurse as navigator, study patient populations, navigator educational preparation, and measurable patient outcomes such as the time to diagnosis and treatment, effect on mood states, satisfaction, support, continuity of care, and cost.” Among other things, it outlined the difficulty of measuring navigator effectiveness in terms of cost of care, but also found that “nurse interaction with patients and families to mutually identify unmet needs; inform, teach, and support; and coordinate and promote the continuity of care” represent a valuable service that can improve patients’ experience of treatment and its outcomes.
I hope those of you who have had a patient navigator will comment and share your experience, and that those of you who did not have one will share how a navigator might have improved your experience. Personally, I think we need all the help we can get.
All the links mentioned in this article, plus some resources, are listed below.