"I was learning a lesson in cancer care. It is important to have someone you trust to help manage the case."
Tom Brokaw(2015). A lucky life interrupted. Random House.
1. Introduction: New steps toward improving cancer care for minorities are underway in Cincinnati. A network of organizations are providing the foundation blocks for compassionate care. They are planting seeds that are exploding in new hopes. People scared of seeing a doctor or going to a hospital to learn about cancer are now changing their minds and taking action. New settings, new relationships, and new opportunities for a personal health care discussions have begun. A bright light has been turned on. This article will explore the key actions and their implications for changing cancer care.
2. The Big Change Is Compassionate Care Through Navigation: In the past four weeks, over 500 low income people have received a form of cancer education that has emphasized the ways in which cancer can work and the necessity for early screenings to stop death. The educational process has been at dinner discussions in churches and community centers. Navigators, trained staff of the Cancer Justice Network, working with our medical director, Nemat Moussavian, MD, have provided a personal, thoughtful, and action oriented message at dinners. People, many for the first time in their adult lives, have had the opportunity of talking face to face with people who are caring about their health and survival. Their response has been to sign up for exams at Crossroad Health Center and to be accompanied to their screenings, if they want, by navigators. Previous barriers of denial about cancer's power, or, decisions to postpone seeking healthcare due to expense or poor treatment have been altered, and, clarity about survival through taking action has been initiated. People now realize that they need not be alone to face daunting obstacles to getting cancer care.
3. Why Navigation Works: Navigation has been effective because people have believed navigators can connect to the health systems in new and more effective ways. The first key of the navigator is to provide education about cancer at the person's level of interest and motivation. Sitting down over dinner at a church or community center and discussing the steps to finding out about cancer is an experience most people have never had. Cancer education has rarely been focused or presented in a way that personal questions and fears can be immediately addressed. Looking in the eyes of the navigator, hearing their concerns for the person's health, and realizing that the navigator will continue with the person, lights a new belief in health care. The conversation is only about caring for the individual's survival. The message the navigator is sending and that is accepted is: "You are too important to let cancer kill you. Take action. I am here for you, if you want help." Rarely in the history of health care has the poor heard such a message. Sadly, a powerful silence about cancer has been noticed by minorities and the poor, a "death silence" that is frequently the only message sent by the health profession. The navigator is aware of the prior experience of indifference and, in a short time, acts to change the framework for the meaning of caring.
4. Who Are the Navigators?: Navigators come from several different groups. Seven of our navigators are experienced community organizers. They see cancer education and prevention as an important addition to their work on community education, caring about wages and benefits for care providers, caring about mental illness problems, caring about the psychology of children needing help, or having experience supporting people with terminal cancer, and caring for children as nannies. Their prior experience adds a solid base for reaching out to people in church and community center dinners.
Also navigators are first year medical students from the University of Cincinnati. The desire to help has been a key reason for wanting to be a doctor. Nursing students from the school of nursing at Xavier University share similar concerns as do social work students from UC, and health communication students from UC, too. Over 40 people have been through an extensive training and have continued their education about navigation through individual and team approaches in our churches and community centers.
The mixture of very experienced community navigators with college students with varied ideas about navigation has led to a powerful approach to the idea of effective navigation. Each navigator brings both a personal experience about cancer as well as some professional understanding of how the health system is working for minorities and low income populations. Building trust, sharing opportunities to listen, offering assistance to cancer exams and to transportation to health centers, and recognizing how to accept when people do not want to proceed, makes up a warm continuing education of compassion.
5. What Kind of Training is Necessary For Navigation?: We wanted our navigators to understand the pioneering work in navigation of Harold Freeman, MD. Dr. Freeman, a cancer surgeon at Harlem Hospital in New York City, 26 years ago, realized that his patients were arriving too late for successful treatment due to the progression of their cancers. His approach to change was to identify, train, and hire people to be community navigators. They would connect to community organizations and seek to bring people to the hospital for exams at an earlier stage in the development of their cancer. Over 5 years, Dr. Freeman and his navigators dramatically changed the mortality of minorities. So successful was his program, that national studies were funded, and eventually every cancer hospital was required to have "patient navigators."
We also wanted our navigators to hear from people who were trained by Dr. Freeman and/or who had experienced navigation of a family member or friend. Our navigators heard from Dr. Anjanette Wells, a graduate of Dr. Freeman's training and a professor of social work at UC, from Sue Wilke who was a part of a team of friends that created a navigation process, and from Kiana Traube, an executive with the YMCA, about the navigation role she created to assist a family member. Their stories of creating new structures of caring around family and friends with cancer impressed us with their determination, creativity, and courage. We learned that navigators can be crucial in the survival of people with cancer.
We wanted our training to look into the area the emotions connected to cancer care. Chris Lottman, retired professor of social work, provided an in-depth review of how the emotions can be used in effective communication and relationships with people struggling with cancer. In small groups, we discussed the emotional realities facing navigators and people who are afraid of finding out about cancer. Chris helped us see that the "emotional intelligence" of the navigator is a key to building trust, sparking openness, and establishing a relationship that can endure painful moments.
Finally, we wanted navigators to understand and hear just how our medical director would present a brief talk on cancer and screening. Realizing that the presentation would be for average people meant thinking about what people, in general, needed to hear in order to begin a thinking process about whether cancer could affect them. Dr. Moussavian gave several talks that modified his presentation and prepared the navigators for key points that could be expanded in small groups at the dinners we expected to attend. We wanted to have Dr. Moussavian give valuable information to people considering a cancer screening without either scaring them or giving so much information that the person was drowning in detail. Most of all, our message should be that information about cancer is comprehensible and helps any attempts to fight cancer.
6. Where Does Navigation Occur?: The Cancer Justice Network is made up of over 20 organizations that serve the poor and especially minorities. We have started to begin our navigation process in those agencies that offer a weekly dinner and to join the dinner and add cancer education to the discussion. Christ Church Cathedral has had two meetings and one additional meeting is planned for the new year; Madisionville Education and Assistance Center has held one meeting and another is scheduled; and Northside Christian Church has held one meeting. Each meeting was an opportunity to be introduced by staff to the idea of cancer education and prevention. We have found two meetings at each agency to be beneficial. In the coming months, we will be at Southern Baptist Church and additional members of the Cancer Justice Network. (Please look at our website to see the full list of agencies:
7. What Have We Learned?: We have learned that by personalizing cancer education many people will be encouraged to take action and get a cancer exam. Sharing the idea of navigation, of accompanying people, is a new idea for people and we are looking for ways of suggesting this form of assistance that is readily acceptable. The most powerful learning is about the strength of compassionate discussion to trigger a desire to discuss personal and family health. Each meeting has been an opportunity to participate in discussions about family histories of caring that have sidestepped cancer or stories about deaths from cancer that might have been prevented. These insights have arisen because of the trust people have shown in our navigators and in the welcoming attitudes of Crossroad Health Center in the registration process. We are seeing the outline of a new kind of health service, a future in which caring is located in places where people feel warmth and caring as well as efficient connections to needed services. We are all learning that healthcare can be a positive and productive experience if navigation is genuinely offered.
by Steve Sunderland
Read about the latest progress we are making as a Cancer Justice Network.