Objectives: While many hospital-based survivorship programs have been developed in large cancer centers, it is important to understand how cancer support services can be delivered in small rural communities. The purpose [ Read More ]
February 2015, VOL 6, NO 1
Clinician and Survivor Shares Perspectives on Cancer Care
The Journal of Oncology Navigation & Survivorship (JONS) recently conducted the following interview with Lillie D. Shockney, RN, BS, MAS, Administrative Director, The Johns Hopkins Breast Center; Director, Cancer Survivorship Programs at the Sidney Kimmel Cancer Center at Johns Hopkins; and Associate Professor, Johns Hopkins University School of Medicine and School of Nursing, Baltimore, MD. Ms Shockney is also a cancer survivor and the editor- in-chief of JONS.
Q: What do you think are the most pressing issues facing patients in your community who are seeking care?
Lillie Shockney (LS): In our particular community in East Baltimore, the majority of patients who are coming to us are part of an underserved population. They experience a fear of coming to the institution for screening. They have heard of other people coming to the emergency room with pain and subsequently dying. They assume that something happened to them while they were at the hospital and don’t really understand that a delay in diagnosis or having neglected cancer is something that not only will result in death but is something that can be prevented. They also may be very worried about the cost of care. If they don’t have insurance or are underinsured, that also can be a barrier that keeps them from coming to see us.
They also have other things that take priority. I had a patient last year who was diagnosed with metastatic breast cancer. We treated her a few years before for locally advanced disease, and she said to me, “I can’t afford to die. I have to be here to raise my son. As you know, I had a delayed diagnosis before because I was spending time trying to keep my husband out of jail. He is now in prison. I then tried to keep both my boys alive. My one boy died here on the streets of Baltimore as a gang member. He got into a gang war and died. I have one son left. I want to get him on the right path, and that’s going to take some time.”
As you can see, if they are dealing with life and death in very different ways, cancer is not on their radar screen.
Q: How do the nurses and physicians address the issues found within this patient population?
LS: They are faced with some tough issues. This patient may not consider her cancer diagnosis a priority, because instead she’s focused on how to get food on the table and, how to keep her son, who is part of a gang, alive. We need to factor those issues in. Because they aren’t going to consider this a priority, we need to make it a priority, and help them understand that by overcoming their cancer, by getting it appropriately treated, they may be in a better position to help their family.
We need to give them resources, as well. In some cases, it may be that we need to get a female patient into House of Ruth (intimate partner violence center) so that she is not going back home into a domestic violence setting. It also means that we need to make sure that patients do have food on the table, that they have access to psychosocial support, and that they can afford their prescriptions, which may mean utilizing resources to cover copayments and related expenses.
Q: What tips would you share with nurse or patient navigators to facilitate access to care for their patients?
LS: One of the best ways to facilitate access to care is to assess the resources that are available within our own community. We often assume that all resources need to come from our cancer center, when the majority of them are out there in the form of patient advocacy organizations. Whether it is transportation assistance or coverage for copays, resources do exist in the majority of community settings or state‑based settings. Navigators simply need to ask.
Q: Some institutions may feel intimidated about starting a navigation program. What would you recommend to start the process?
LS: Some institutions feel vulnerable when they are in the process of determining how to develop a navigation program. There is not one particular program or process that fits every single institution; it should be tailored toward the patient population being served as well as the institution’s organizational structure. One of the best ways in which an institution can initiate a program without feeling too intimidated is to visit other institutions that have already developed such programs and published regarding their success. That’s a really good starting point.
Institutions and centers should assess from an operations management process how their patients currently flow through their program. Do not assume anything; follow alongside a patient and see what really happens from the point of diagnosis, rather than what they have been told happens. That will provide a great deal of insight as to where the inefficiencies are, where things need to be reworked, where there are barriers to care that must be identified and resolved for their patient population, and where their nurse navigators and patient navigators can be of the best use. Cancer centers that are implementing a navigation program can also visit other centers for a site visit to see how they were successful in implementing such a program.
Q: Are there any barriers to care within Johns Hopkins’ patient community?
LS: There are many barriers faced by patients who receive care at Johns Hopkins. One is transportation. We may have a patient who says, “We have a car, but my husband uses it to go to work. I use the subway.” The subway may not be near their care center; we can provide resources to ensure they have transportation to get there.
Asking the right questions and how the questions are asked regarding the barriers very much influences whether a patient will honestly tell us what the barriers are. If I say to a patient, “You are not going to have any trouble covering your prescriptions, are you?,” that is kind of a mother–daughter type of conversation, which is inappropriate.
But if instead I say, “A lot of medications are expensive, and you weren’t planning to build into your budget a $50 bill each month to take this medication that’s really important for preventing recurrence of your adjuvant cancer. Is this something I can help you with?” Now, that patient is going to feel far more comfortable in saying, “Yes, I don’t have those extra dollars, whatsoever. If you could help me with that, I would greatly appreciate it.”
We also have issues such as ethnicity and racial barriers. We have large African American and Korean populations in downtown Baltimore. Culturally and from an ethnicity perspective, there may be language barriers when we are trying to explain their treatments to them. They also have myths associated with cancer and its diagnosis. Some actually refer to their diagnosis as “cancer fate,” meaning that if you get it, then you are destined to die, so why bother being treated?
Q: You offer the unique perspective of being a patient with cancer, a cancer survivor, and a healthcare provider. Based on this experience, what insights can you give to fellow nurses and care managers to improve patient care?
LS: I have had either the good fortune or misfortune to experience cancer from several different venues. One is as a patient. I’m a 23‑year breast cancer survivor, also a 21‑year breast cancer survivor, and an 8‑year uterine cancer survivor. I flipped to the other side of the side rail. I’ve also been in the field of oncology nursing and nurse navigation for a very long time, and serve formally as a clinician at Johns Hopkins.
One of the most important things I can share with nurses, nurse navigators, and care managers is that the patient is more than his or her pathology. We focus so much on the stage of the disease, the prognostic factors, and what the treatment is going to be. We need first to ask that patient, “Tell me what your life goals were before you heard that you were diagnosed with cancer.” Commonly, that patient will say, “It doesn’t matter. Just save my life.” I will say, “It does matter, and I want to know what they are, because we are hoping this will be a bump in the road, not a derailment, not a dead end.”
The patient may say to me, “I’ve been married a year. My husband and I were hoping to start a family this coming year.” She’s 35 years old. If I know, based on the stage and prognostic factors, that she probably is going to be looking at chemotherapy, then I want to make sure as her nurse navigator to get a referral for her into fertility preservation. I want to preserve that life goal. I do not want to steal it away.
Let’s say she is starting to be a concert pianist. I want to talk to the medical oncologist and say, “Let’s not rob her of her career goals. Let’s take a look at regimens that don’t involve drugs that will cause peripheral neuropathy. Otherwise, she won’t even be able to teach piano in her own home.” Preserving those life goals is really important.
Also, it is important to assess how we can prevent side effects rather than having to fix the consequences of those side effects posttreatment. We know from research that if you power walk for 30 minutes, 5 times a week, you could reduce your fatigue during radiation by 70%. Why wouldn’t we teach patients that upfront? That just makes absolutely no sense.
Also, setting them on a path of survivorship from that moment of diagnosis is really important: preserve those life goals, prevent side effects, and develop new goals they want to add when they finish their treatment. Help them create their new normal. Do not tell them they have to find a new normal or accept a new normal because they have all of these side effects that we fail to address proactively.
Q: Based on your unique perspective, what advice would you give to oncologists?
LS: Because of my perspective with cancer and looking at it as a patient, a caregiver, and as an oncology nurse navigator and clinician, one of the most important things I can share with physicians is the importance of spending time with the patient.
If I asked them to do only one thing while they are having a discussion, I want them to hold that patient’s hand. I want them to feel connected to this individual and not just focus on the cancer, but to look at the patient and see someone who is an individual, someone who has a life outside of the world of cancer.
I also realize that we are facing a shortage of oncology specialists in the United States. That does not mean that the patient deserves less of the oncologist’s time. Oncologists really do need to identify what they need to prioritize in their discussion, and then utilize mid-level clinicians as well as nurse navigators to pick up where they have left off in doing education, psychosocial support, and barrier assessment, and then provide patients with the resources that they need.
Above all, I want to make sure that the physician is talking about hope: what is this patient hoping for from the perspective of what the treatment is going to accomplish and where the patient sees his or her life going forward, including for individuals with metastatic disease. What is the patient hoping for, and how can we help that patient transition through hope? Most importantly, provide that patient a good death. That is something I will hold an oncologist responsible for.