When you’re diagnosed with cancer, or any serious illness, you not only have to cope with your fear, shock, family dynamics, and finances, you have to try to remain steady as a fire hose of information lets loose over you.
I remember being completely overwhelmed as, all of a sudden, I had half a dozen biopsies, two MRIs, three oncology appointments and multiple conversations with surgeons. That was just the first week.
And arguably, as I stood at the entrance to this medical maze, I was absurdly privileged: I’d been a health and science writer for 20 years. I had lots of doctor friends, who knew people at the world-class health centers that I was lucky enough to live near. My husband had an understanding boss who let him take time off every time I had a medical appointment or procedure.
In a sense, through friends and family, I was able to cobble together a version of what’s now called a “nurse navigator,” a professional who helps patients find their path through complicated medical problems.
The idea was pioneered in 1990 by a doctor at Harlem Hospital who realized that his predominantly poor and uninsured cancer patients weren’t getting proper care because they got lost in the confusing system. He envisioned a professional who could explain medical information and options to patients, help them set up and keep medical appointments, make sure they had all their medications and understood their dosing, accompany them to appointments, arrange childcare and transportation, decode medical bills, run interference with insurance companies, and talk to them when their anxiety peaked or family fallout got bad.
Since then, the idea has gotten traction, and hundreds of medical centers offer some version of this service. But since it’s a new-ish role, the responsibilities and training of nurse navigators has yet to become standardized. The Academy of Oncology Nurse & Patient Navigators offers a certification course, but this isn’t required. Some navigators are nurses, some social workers, some just people with knowledge of the medical system who have received training in coordinating care.
The Commission on Cancer, part of the American College of Surgeons, required that, by this year, all cancer centers offer some sort of nurse/patient navigation in order to be accredited.
The number of hospitals offering nurse/patient navigator services continues to grow, not only in the United States, but around the world. But scholars are still debating how much of a difference nurse navigators make. Some studies—here, here, and here—show that patients who get help from nurse navigators are more satisfied with their care and suffer less from the medical problems that can arise when patients don’t take their medications, or miss appointments. Other studies—here, here, and here—show that nurse navigators may cost a bit more, and may only modestly affect the health outcome for most patients.
But as Lillie Shockney, who runs the team of four nurse navigators at the Johns Hopkins Breast Center, pointed out in a recent Washington Post story, when it comes to the debate over whether nurse navigators make a difference, it’s really a matter of how you define value.
Isn’t it worthwhile to help patients get the best care they can? To help them deal with the mind-numbing complexities of appointments, bill and insurance? To help them anticipate and cope with the emotional and financial fallout of having cancer? Isn’t it worthwhile to make sure that they really understand their medical options and make informed medical decisions?
Does it make sense to tell someone, “You’ve got cancer. Figure it out.”? Is that the kind of society, the kind of medical system, we want to have?
I would say that it’s not.
The National Association of Healthcare Advocacy Consultants will help you find a navigator here. Or you can just ask your hospital whether they have such a program. More and more do.
Bring on the nurse/patient navigators. We cancer patients need all the help we can get.