"We can't refuse to be human beings. We can be unconscious, asleep. But to be awake is often just a simple matter of being willing to feel the connection, to feel the presence of more than our selves...We are obviously a part of something bigger than ourselves, and our health and well being are interdependent..." --M.C. Richards(1980). Toward Wholeness. Wesleyan Press.
On October 14, 2016 over 200 people, poor, minorities, families, came to the weekly free dinner at Christ Church Cathedral in downtown Cincinnati. At the over 20 tables were several members of the Cancer Justice Network, an organization that had visited a week before to provide cancer education. The tables filled as people waited to be called to a beautiful buffet prepared for the Church's "guests." Sharing cancer education in this setting is new for both the people who came for dinner and the "Navigators," the trained volunteers who had come prepared to have conversations about why cancer may be killing record numbers of minorities in Cincinnati.
We had learned the prior week that there appeared to be an openness to discussing health in general and cancer in particular. Our conversations were marked by an interest and a seriousness that suggested that health questions were on the minds of poor people. Now, they had another chance to discuss health and, if they wanted, to meet representatives from Crossroad Health Center, Molina Insurance, the Cancer Justice Network and to sign up for free cancer exams.
Discussing health in Christ Church Cathedral raised serious questions about how to understand the purpose of the dinner and the conversation. Many people had been to a prior dinner. No religious message was delivered or religious adherence was asked for by anyone. The action of giving a free dinner without any qualifications was seen as one way that the
mission of caring could be enacted. Now, though, the Cancer Justice Network was joining the evening meal and bringing a set of new questions and expectations of both attendance and participation in the dinner. Were people now required to discuss their personal health histories? Did experiences with cancer including family history suggest that a new requirement for attendance was being demanded? The Cancer Justice Network and Pat Coyle, PhD, of the Church worried about the mixed communication we might be sending and, with this new approach, whether we were undermining the purposes of the dinner.
Our goal was to co-create a learning experience with the people. We wanted to get to know people and to raise the concern that we had about preventing cancer from becoming a killer that went unregarded. Sadly, we knew that institutional health care had ignored the realities facing poor people by neither educating nor treating the increasing numbers of people with cancer. We knew that many people, prior to the Affordable Care Act, had never considered having doctors and hospitals that were responsive to their health needs. Cincinnati's hospitals were located in neighborhoods that had a twenty year less life expectancy for residents and the hospitals had no programs of education or treatment except the occasional health fair. But we were trying something new: a process of really caring about empowering people with knowledge about the danger signs of cancer and the steps needed for timely treatment. We wanted to follow a model program developed by Harold Freeman, MD, a surgeon, and developer of the navigation process. The key to this approach is that our navigators will both explain the realities of cancer, describe the importance of exams for early detection, and, importantly, accompany people to their exams and treatment. We wanted this new approach to change people's relationship to physicians, knowledge about cancer, and improve the likelihood of getting both an exam and, if needed, treatment. And, we want to save lives.
The results are starting to arrive. Some people at the dinner signed up to find out if they had cancer. They met with admissions staff from Crossroad Health Center, talked with Molina Insurance about the steps to getting insurance, raised health questions with our medical director, Nemat Moussavian, MD, and built the beginning of a trusting relationship with our navigators. (Our navigators were Pat Murray, Alison Love, and our first navigators from UC's Communication Department and Xavier University's school of nursing.) We will wait and see if this group follow through with their appointments and whether the phone contacts we have will result in deepening the relationship between navigators and those people attending the dinner. The magic of the dinner environment worked and, for the second week in a row, we saw many people signing up for exams, discussing their general health, and agreeing to follow up. The hour or so for dinner and conversation sped by like a lightening bolt. We felt the warmth of good conversations, caring starts of important discussions about health, and the acceptance of the offer of help to find out if cancer was present. About 10% of the people signed up; all were given a chance to discuss cancer or a health problem. Slowly, the concept of a navigator, an ally, to work with a person at a difficult time and perhaps with difficult conditions that prevent action by themselves, began to form. In an instant, the dining room was lit by flashes of compassion, by the bright light of hope, and by the illumination of a possibility of overcoming a lethal disease.
We are grateful that seeds of humanness were planted both in the navigators and the dinner guests. Once strangers just a bit ago was transformed, in part, into a the threads of a structure of compassion, a new form that required releasing hope from both sides. Questions remain about our efforts: Should our navigators take up regular attendance at these dinners in order to establish relationships that are ongoing?; Would the place for the navigators also be at the health centers so that people could meet them and have navigators team with people as the meet health professionals?; How will we know what has worked for the person and the navigator in such a short time period and, if we find out, is what is successful transferable to other settings for education?; and, can we start a movement of the people, by the people, and with the people to spread the word that cancer care is available with good doctors, effective treatments, and compassionate navigators? We will continue to find our way. For more information, please go to cancerjusticenetwork.org.
by Steve Sunderland
Read about the latest progress we are making as a Cancer Justice Network.