Won’t You Be A Navigator?

Won’t You Be A Navigator?

by Steve Sunderland, PhD
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Dear Friends:

As I think about what is important to say to this year’s entering class of medical students, I think about what we most need from doctors in our near future: we need allies for patients. By allies I mean people who are ready to open their eyes and hearts to the healthcare calamity facing millions of people in our country and thousands here in Cincinnati. The opening process, enlightment, will require action, a different and exciting evolution of our moral behavior. The medical profession has not been a good friend to the poor, to the black, and to women. Every major review of the health realities facing our neighbors shows astounding disparities in healthcare and shocking outcomes in terms of mortality.

This is not new. America’s health professions have fought against, in one way or another, compassionate and equal care for those at the bottom of the economic ladder, those who are black, brown, and red, and those who are disabled. One statistic from the most recent Ohio 2016 State Health Assessment: “In 2012-13, African American Ohioan’s had 10,749 years of potential life lost before age 75, far exceeding the number for any other racial or ethnic group.” (p. 19)

You inherit this legacy of what some people call the shame of healthcare. You are now participants in the presence of this enduring disaster, just as I am. You may feel like an observer or a by-stander at a car crash of cars that you were not driving. And, you may walk away thankful that you weren’t in the cars. But now, at this moment, you are in the driver’s seat, deciding if you and your efforts will avoid another crash by taking a different path, a direction that you navigate toward greater justice, less injury, and more survival. I want to take just a few minutes to describe a journey you can join me on starting right now. It will be an exciting one, and sometimes a thankless one, but most times, an inspiring one. If, at the end of my tale, you feel you would like to know more, or, better, you would like to join me, then please email me at steve.c.sunderland@icloud.com

I retired two years ago from the University of Cincinnati after 35 years as a professor of peace and I fully expected to continue my work for peace within educational settings, maybe even creating a new form of professional education. Cancer rose up and changed my course direction. Two members of my family, my wife and older brother, both were told that they had cancer. One was in its earliest stage, the other in stage four colon cancer. I live in Cincinnati and my brother lives in a suburb of New York City. Our families’ trip through the cancer world involved shifting doctors, confusing half-steps in terms of understanding treatments, choice-less choices of unpredictable treatment options, and, all of our steps were marked by isolation from both knowledgeable physicians and from understanding the texture of what cancer does to a life. We, like many cancer victims, were alone in our ignorance.
We missed people, professional and lay, that understood the experience of having cancer and fighting the uncertainties. Our network of support had conflicting advice, although offered in a kind way. Our conversations with physicians were rarely what we would call compassionate, although one surgeon, the one my wife chose, did carefully review the MRI record with us. My wife’s operation was a “success” according to the surgeon. Checking back to see her condition, her surgeon refused to answer questions about why he chose the method used. My brother had a similar experience with discussions at some of the leading cancer hospitals in New York City.

As we were going through this critical stage, I asked myself the question: “If I am having these problems with doctor-patient communication, and difficulties with understanding the choices facing us, what must people new to healthcare, new to insurance, and new to cancer be experiencing. I went to find out.

I visited every cancer hospital in Cincinnati and asked whether there were cancer education programs or processes for low income, newly insured, and minorities to learn the realities of cancer care. Every hospital said, in one way or another, “It’s not our job.” I persisted in asking just how people could use their new health insurance if they were afraid of how to use it, especially people in areas where their life expectancy was low. I knew that certain neighborhoods had a 20 year less life expectancy than other neighborhoods. Often, the neighborhoods with the lowest survival rates were next to a hospital. It didn’t matter to the hospital.

This was unacceptable to me: no one should be denied education about cancer because of the refusal of hospitals. I began to research just where and how cancer mortality could be reduced and I came across the work of Harold Freeman, MD. Freeman, a surgeon, trained at Howard, and arriving at Harlem Hospital in New York City, found that his surgeon’s skills were largely useless since most people came to see him when the cancer had so advanced as to be inoperable. Freeman decided to try and change the time when people came to see him; he invented a new position, a patient navigator. The patient navigator was a trained community person who would go into communities and educate people about cancer and, equally important, agree to accompany people to their screenings and, if necessary, to treatment. In five years Dr. Freeman totally reversed the numbers of people coming for screening and treatment and, therefore, their survival rates. Freeman’s ideas spread around the country, became the basis of legislation for research, and, finally, became one of the requirements for accrediting cancer hospitals.

No cancer hospital in Cincinnati had a patient navigator program. And, cancer mortality amongst low income and minorities from cancer was the greatest in Cincinnati. Working with the United Way, the American Cancer Society, Tri-Health, and the Peace Village, I called a meeting of all the hospitals and invited Dr. Freeman to share his research and his ideas about how Cincinnati might implement his ideas. Following the conference, no hospital agreed to start a navigation program. I went to the churches and other agencies that were in our low income and minority community, many of them were attendees at the conference. I asked them to join an association, a Cancer Justice Network, that would work to share information about cancer with low income people and, following Dr. Freeman’s model, provide navigators to accompany people to screening and treatment. Many agreed. Several physicians agreed to join us and provide education about cancer in general and the fundamentals of screening and treatment in specific. The Cincinnati Health Department agreed to be sites for screening as did Cris Collingsworth Proscan and the Women’s Center at Jewish Hospital. Xavier University’s school of nursing decided that many nursing students might make great navigators. The University of Cincinnati’s school of social work also felt that students in their program might be interested in being navigators. We also found a small number of community organizers who agreed to join us as navigators, some of them cancer survivors. We had almost all the key elements.

Now, we are on the edge of beginning our program. We are selecting people for navigation training. We have identified churches and other social agencies interested in being the first sites for cancer education. We have built relationships with Medicaid insurance companies to assist people in getting insurance. We are working with Crossroad Health Center to accept people without insurance for screening and referral for treatment. We have financial support from Christ Church Cathedral, Molina Insurance, the Cincinnati Academy of Medicine, and the Order of St. Joseph, enough to offer stipends to some of our navigators.

We are at the crossing place, the spot where ideas get transformed into action and a new effort of compassion is created, shaped, defined, and sustained. The navigator role is new to cancer care and has deep roots in healthcare, social work, the ministry, and social action. Being a new role means we need time to make sure that we care for its first growths. So many of us will be walking into the light of helping, leaving the shadows where cancer patients face their future alone and frightened. Our agencies, also new to cancer help, will be adding their special ingredients to the mix of compassion as we, together, support more and more people on this shaky journey.

This is where you come into this story. Learning how to be and become doctors has little to do with staying with the patients as they go through each obstacle. There are time pressures, loan pressures, memorization pressures, and many personal pressures on each of you. The culture of medical school is designed to increase the intensity of time spent in learning. More stress is seen as “good” stress. We are offering you a chance to take a different educational and life journey.

This is really a chance to practice medicine as an art of caring, a chance to touch your own hearts and the hearts of strangers with the special talent you bring. You can break out of the shell created for you in medical school, whether by your faculty, your peers, your parents or by some picture of a heroic doctor. Leaving the security of the phantasy doctor and entering into the unknown edges of your profession requires a commitment to the human community first, your deepest sense of how medicine is to call on healing powers, and, lastly, to call out your brave and emerging self. It does take courage to take off the white coat and show your hearts to your patients, to your colleagues, and to this community.

It does require a new breath of hope to be an ally of the sick, the frightened, and the lonely as they face the cancer scares. Yet, I have faith in you because I have met some of you, been taught by some of you, and have seen you grow into maturity because of your character. So, won’t you come and join us in this significant change in direction? And, bring your poetry, your songs, your myths, and your fears. These are the contact points that light up those with cancer. Together we can change ourselves, our neighbors, and cancer.

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