What one health care change would dramatically improve poor people’s chances of surviving cancer, bring health costs down, and improve physician effectiveness? The answer: Patient Navigation. Patient Navigators support cancer patients as they negotiate the emotional, mental and financial realities that they immediately face from the moment of a physician suggests a test for a possible cancer, to a diagnoses of cancer, to treatment options, to life post treatment. Both cancer patients and physicians face a set of frustrating, ambiguous, and often difficult decisions that are further muddied by communication difficulties.
For too many people, the experience of cancer is so filled with fear that questions about care are left unasked by patients. Instead of feeling confident about entering the health system, many people find every reason to postpone taking the step to find out whether or not they have cancer and at what stage. Sadly, our health systems have not figured out how to help the poor and minorities gain access to life saving treatments. For too many patients, for example, the key obstacle is just getting to and from the treatments. No major system for adequate patient transportation is available. ( Affect. Inc. (7/20/12). Summary Report: Stakeholder Research on Patient Transportation Resources. Prepared for the East Central Division, American Cancer Society.)
Similarly, changes in the insurance systems and the recording processes for doctors and nurses have added a burden that is distorting the caring process. Health care providers may have little time to hear the fears and doubts of the patient and the patient’s family when the diagnosis is cancer. Many doctors and nurses know that the patient is unfamiliar with the terminology of diagnosis and treatment that are so critical for patient participation in a way that supports the best process of treatment. Effective response to cancer requires the physician to understand a set of tests, many possible treatments, and the understanding and agreement of the patient. The willingness of the patient to follow the treatments are essential for success. The patient knows that they do not know as much as doctors and nurses and, most importantly, they do not want to get in the way of improving their chances for success. Yet, the relationship between the patient and the health team, without any assistance, is likely to result in mis-steps, limited understanding on both parties part, and a weakening of the psychological strengths so necessary for the long process of being a successful patient. The Patient Navigator, acting as an advocate for the patient and as an advocate for the doctor, may make the critical difference in opening the communication process to its greatest strength: the combination of fully supported patient care and completely clear health care treatment. Patient Navigators could make a difference in reducing the number one killer, lung cancer, by encouraging smokers to get a low dose CT scan. Getting screened, a study reports, “…reduced the number of death from lung cancer by 20 percent. (A. McKee and A. Salner(9/21/14. The New York Times.)
Poor people confronting cancer face additional obstacles of access to diagnosis, comprehension of treatment options, choices of kinds physicians and hospitals, and basic needs of transportation, day-care for children, funding for cab fare, and funding for health bills not covered by insurance. The Patient Navigator is critical for the full exercise of patient choices and for assisting health care staff to understand the personal and cultural limitations and opportunities. Without a Patient Navigator, a person, fearing a lump in their breast, may approach a clinic and/or hospital with little understanding of how to enter and be given treatment. The clinic or hospital staff may not understand the fears of the patient or his/her family member, about the stage of the cancer, on one hand, or the ways the patient can reach the hospital on a regular basis. A Patient Navigator, presenting themselves to the patient at their request, can immediately step in and make a major difference in the allaying the fears of the patient about both the health options the hospital offers as well as the possibility of support for the basic needs of the patient.
Preparing the patient to meet the health care team starts the health care process off on a positive step. The patient “knows” they are in “good hands” that care about their possible illness, and the health system has an advocate, too, to assure doctors and others that their suggestions for treatment and follow up will be heard and followed. If the Patient Navigator is experienced with the hospital’s cancer resources, and with the benefits offered by the American Cancer Society, then the chances for a well prepared patient to meet the health care team are substantially improved. (www.cancer.org)The health care team can depend on the Patient Navigator to not “get in the way;” instead, the Patient Navigator acts as a translator for both health care team and patient, offering alternative ways of communicating that attempt to clarify just what is being felt and what the health options can be, now and in the future. The Patient Navigator is also a “guide” for both parties into the often confusing world of medical jargon, hospital admissions, and meetings with doctors and nurses. Often, the patient hears only a part of what is happening with their cancer and the results of their treatment. The Patient Navigator can shift the patient’s understanding to a deeper level, revealing questions that the patient may have been too afraid to ask and, sadly, too confused to understand the treatment options. For the health care team, the Patient Navigator acts as a “friendly advisor,” suggesting that the physician may need to repeat an explanation, or describe a procedure’s risks in different ways, or help the physician understand the family pressures on the patient.
Cancer can be a lonely and wasteful experience for the patient. For many patients, especially poor people, a new world of fear opens. Financial concerns begin to overwhelm life choices. Successful treatment of cancer requires a caring health care context and a kind of compassionate communication that is essential for the patient’s psychological and physical well-being. The Patient Navigator is that person that can step in and make a vast difference. Moreover, the Patient Navigator can make a powerful difference in strengthening the patient’s economic reality by helping with hospital and personal finances. Working with billing departments, physician’s offices, and monies available for patients in need can ease the patient’s mind and strengthen the patient’s resolve to follow treatments. Having patients regularly in agreement with treatment schedules also improves the financial health of the health care system. Patients that are more attuned to the physician and hospital, and who feel more able to manage their conflicting responsibilities, are people that will make serious use of the health care team and hospital’s resources. Currently, patients and health systems waste their lives and financial resources. Uneducated about the health care treatment process, patients are sidetracked and put their lives and welfare at risk. Why not a Patient Navigator for every patient with cancer? Anyone with cancer deserves the humane experience of full knowledge, compassionate communication, and productive partnerships with health systems. It is time.
By Steve Sunderland and Samuel Joseph
Steve Sunderland, Northsider, is director of the Peace Village and a former professor of peace at the University of Cincinnati. Samuel Joseph is a professor at Hebrew Union College.