“Can we be compassionate to those whose suffering remains hidden from the eyes of the world?”
–H. Nouwen (1994). Here and now: Living with the spirit. Crossroad.
Introduction: Opening the door to fair treatment for minorities and the poor who may have cancer will involve a cultural shift. For too long, the gap between black and white mortality from cancer has been accepted as “normal.” Recent research has made it clear that minorities and the poor have suffered in major ways from indifference, inadequate policies, and poor treatment once a person gets to a doctor or a hospital. Capturing the scope of injustice, one scholar has described “the excess in premature death among blacks is the equivalent of a jumbo jet crashing each day.” Looking across many diseases, the head of the Robert Wood Johnson Foundation, writes that it’s dangerous to one’s health to be black. Understanding that health professionals, like many in the general culture, see it as acceptable to hear about and give poor treatment to minorities and the poor makes it imperative that health programs seeking to change will need to follow a different set of training, as well as work on a major difference in expectations for health care, and involve themselves with understanding why poor outcomes for minorities have existed.
The Cancer Justice Network: Cincinnati has the opportunity to create a new form of cancer education. Realizing that Cincinnati cancer mortality for minorities is the worst in Ohio, a group of social service organizations, professional programs, American Cancer Society, churches, Jewish Hospital, and city health centers are forming a Cancer Justice Network. Over the next few years, with these agencies working together in the areas of the city with the lowest life expectancy, a more positive and healthy result is expected. We want any minority or poor person who feels they may have cancer to be able to talk with a person, a “navigator,” who will guide them to a screening and, if necessary, treatment. We will emphasize trust in a new partnership, a welcoming to face health care and hospital procedures, a clarity about how cancer works and how it can be survived if caught early, a desire to assist in overcoming obstacles of transportation, finances, and child care, and, most of all, a partnership that cares enough to make sure that compassionate treatment occurs. The following organizations are in the Cancer Justice Network: FreeStore Food Bank, Madisonville Education and Assistance Center, Churches Active in Northside, Christ Church Cathedral, Caracol, St. Francis Seraph, Center for Independent Living, Santa Maria Center, Peaslee Center, First Ladies Health, St. Vincent de Paul, University of Cincinnati school of social work, Xavier University school of nursing, Crossroads Health Center, Cincinnati Health Department Health Centers, American Cancer Society, and Let’s Change Our City. We are working on the details of how to provide regular cancer education by physicians, help with difficulties in going to screening by providing navigators, and assistance with getting treatment by being accompanied by navigators.
What works in reducing minority cancer mortality? The Cancer Justice Network will follow the organizational outlines created by Harold Freeman, MD, director, Ralph Lauren Center for Patient Navigation. Freeman, an African American physician, researched what would make a difference in cancer mortality if he found a way of bringing minorities sooner to screening and treatment, when cancer was in its earliest stages. As a surgeon, he knew that he was limited in how he could help a person if cancer had advanced to the fourth and most advanced stage. The key was a change in how much access minorities had to the earliest screening when it could make the most difference. He pioneered the development of community navigators, local citizens who could help the person with overcoming any obstacles to gaining early treatment. In five years of using navigators, he was able to double life expectancy of patients as a result of people getting early screening and timely treatment. Dr. Freeman has visited Cincinnati and met with many members of the Cancer Justice Network and we continue to follow his advice on how to create a similar program.
The Principles of the Cancer Justice Network: What does the Cancer Justice Network stand for in terms of health care and peace? Here is our attempt to change both the thinking and the outcomes:
- Realizing that mortality from cancer is widespread in the minority and poor community of Cincinnati, we seek to reduce suffering and death from cancer through community based programs of navigation to screening and treatment.
- Realizing that access to cancer information for low income and minorities is limited, we seek to provide timely and useful information about how cancer can be survived if there is timely screening and treatment. Cancer education will be provided at social agencies, religious institutions, and educational settings.
- Realizing that obtaining screening is often made difficult by obstacles such as transportation, finances, as well as fear, we will assist people to work through these barriers with trained navigators.
- Realizing that treatment for cancer can often be challenging, we will provide navigators to assist people with preparing and going for treatment.
- Realizing that cancer effects the family of an individual, we will navigate the person and their family to support groups that discuss the aftermath of cancer treatment.
- Realizing that cancer is an emotional as well as a physical shock, we will have trained navigators able to assist people in finding groups that will help cope with the ongoing fears that cancer may cause.
- Realizing that cancer information can be understood in different ways because people learn in many ways, we will provide cancer information through print sources, talks with physicians, phone numbers that may be useful, and referrals to physicians and nurses who can go into depth.
- Realizing that supporting people seeking to find out if they have cancer or helping them with cancer treatment is often complex, we will set up a learning system to understand the many ways navigators may help people as well as documenting the ways in which obstacles may stop rapid screening and treatment.
- Realizing that people seeking to find out if they have cancer often are treated brusquely, we will underscore compassionate relationships as a standard for all care in the navigation process.
These principles call for a new orientation by the health care profession: a realization that any agency can be a partner in promoting the best health outcomes if a union of goals and procedures can be accomplished. The Cancer Justice Network seeks bold results: we want to see cancer deaths reduced in the near future as a direct result of early screening and timely treatment. To create a peaceful and just Cincinnati, we choose to change the culture of normality and acceptance of health for all.
Steve Sunderland(firstname.lastname@example.org) is director of the Peace Village Cancer Project/Cancer Justice Network.