Dr. Antonia Novello, 14th Surgeon General of the United States, On Creating A Healthcare Navigation System For Cancer Patients
I had the chance to interview Drs. Carmona, Satcher, and Novello about the current state of America’s war on cancer. I’ll post each conversation in a separate blog entry. This post explores Dr. Novello’s views on creating a healthcare navigation system for patients with cancer.
Dr. Val: How are cancer patients navigating the system currently?
Dr. Novello: They are relying primarily on their oncologists to help them navigate. But even though oncologists want to help their patients as much as possible, the reality is that they are taking care of thousands of patients at a time and simply don’t have the bandwidth to assist with the level of detail necessary.
Cancer is extremely complicated and patient care is not just about diagnosis, staging, and treatment. It also includes tests for genetic markers, coordination of genetic counseling, finding appropriate clinical trials for the patients to participate in, locating a continuity of care supervisor, rehabilitation services, scheduling chemotherapy, radiation, and surgical treatments.
Cancer doesn’t happen in a vacuum – patients also have other medical conditions that need to be managed along with the cancer diagnosis. In addition, one must create a comprehensive follow up plan for survivors, including scheduling of surveillance tests to identify possible recurrences. If a cure is not an option, then palliative care and hospice services must be coordinated. In addition to that, patients must create a living will, designate someone to have power of attorney over their care, and prepare for the legal aspects of their passing. This is why a diagnosis of cancer can be overwhelming to most people, and they are in desperate need of a structured program to help them navigate the complexities and to ensure that the ball is not dropped anywhere along the way.
Dr. Val: What’s the best way to help cancer patients more successfully navigate the healthcare system?
Dr. Novello: We need to create a simple, comprehensive, and accurate way to offer guidance to all Americans with cancer so that they can get the best care possible. You know how some hospitals have painted lines on the floor to help people to navigate from A to B in the building? Well we need this kind of line system for cancer care.
Ellen Stoval at the National Coalition for Cancer Survivorship, Lance Armstrong and his Foundation, members of the Institute of Medicine and the Centers for Disease Control and Prevention, and members of the President’s Cancer Plan at the National Cancer Institute, have formed a coalition to delineate the features of an ideal cancer patient navigator system. Senators Kennedy and Hutchison are preparing a bill for congress – it would ensure that Medicare covers a cancer patient navigator service. It remains to be seen who will build the service, and how it will be distributed.
Dr. Val: What are the key elements of a cancer patient navigator system?
Dr. Novello: The coalition is unanimous in their opinion that the navigator must provide culturally sensitive, clear information in the native language of the patient. A cancer patient navigator should include assistance with:
Diagnosis: Every patient needs to know the name and stage of the cancer that they have.
Treatment: The treatment plan (including chemotherapy, radiation, and/or surgery) that is recommended for them.
Scheduling: A schedule of all their appointments.
Pain Management: A comprehensive plan for pain management so that the patient is not denied access to narcotics if needed.
Psychosocial Services: Access to psychosocial services to assist with coping strategies for depression and family and marriage counseling.
Insurance Assistance: a plan for financing the cost of treatment – specifically an insurance advocate who can help the patient understand and maximize their insurance benefits, and if they’re uninsured, a way to get coverage for the care they need.
Peer Support: A list of support groups that can assist the patient with their emotional needs.
We need everyone to support this upcoming bill so that all cancer patients will have access to a navigation tool that will help them get the care they need in a timely fashion. Successful navigation of this healthcare system can mean the difference between life and death for cancer patients.
Dr. Novello is the Vice President for Women and Children’s Health Policy at Florida Hospital in Orlando, Florida.
*See the National Call to Action on Cancer Prevention and Survivorship*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.