“Being a patient advocate means not so much putting ourselves in the patient's shoes but asking the right questions to find out what those barriers to care are,” says an oncology survivorship navigator from Sibley Memorial Hospital, Johns Hopkins Medicine.
Cancer care should not be solely focused on treatment, but efforts should also be expanded to include life after cancer, mental health support during treatment, and drug-free pain management tools for those who need them, according to Pamela Goetz, BA, OPN-CG.
In an interview with CancerNetwork® during World Cancer Day, Goetz, the survivorship program manager and an oncology survivorship navigator at Sibley Memorial Hospital, Johns Hopkins, Washington, DC, highlighted some of the ways she works to meet patients’ physical, social, and emotional needs from diagnosis to long-term survivorship in addition to dismantling barriers to care.
“Reducing barriers to care is something that has to be evaluated; a patient's needs have to be assessed across their cancer care continuum, whether they're newly diagnosed, in treatment, or in transition after cancer with longer term survivorship,” she explained. “All of us on the team have a role in listening—really listening—to the patient and asking the right kinds of questions to find out what the challenges are at whichever stage they're at.”
As the survivorship program manager, I work on lots of different kinds of projects, some that are patient-facing and some that are working within process improvement in the clinic. But the core of my job as survivorship program manager is really supporting and advocating for patients with cancer and caregivers, [including] people in treatment and people out of treatment. A lot of my day is really organized around planning and also implementation of programming. Some of those programs relate to education around various cancer types, as well as organizing and delivering integrative health programs. Those programs are really helpful for patients in addressing adverse effects of cancer.
We have programs like yoga, meditation, and art therapy. My day kind of entails looking at running those programs, but also looking at process improvement, helping with creating documents to help patients figure out how to get to the lab, where to go, and how often to do it. We also develop resources around some rare cancers [such as] sarcoma. A lot of my day is talking to patients about those programs, and not just the programs that I run but resources that are available to patients. Thinking about patient advocacy, it's really providing patients with knowledge and information that's going to help them get through and finish treatment with the best quality of life.
Multidisciplinary teams are really important to patient care. My role is one, really supporting patients. Since I support patients, I actually help the clinical teams in doing their work. Patients have lots of barriers to care. They're challenged physically; [they have] practical issues like transportation; they can be challenged financially; but they're also challenged socially and emotionally. There are many of us on the cancer team who really support the patient across the board.When I think about patient-centered care, I also think about how that multidisciplinary team can really help the patient.
It's not just the oncologist or just the radiation oncologist. It's the nurse, the social worker, the dietician, and the physiatrist; it's all of us. The programs that I manage, whether they're educational or integrative health, those both really support the patient in being activated in their care. It helps them manage, like I said before the [AEs], but it also gives them an opportunity to be engaged in their care and feel some sense of agency and control. It's an ability to give them tools for making some lifestyle changes.
Many of us are engaged in reducing barriers to care. Our social workers can address things like practical concerns. Again, transportation is a surprisingly big barrier for patients with cancer. They can help the patient access various resources. Our social workers have set up programs with different transportation services to facilitate that. Some of the other barriers are access to making appointments; that's also a surprisingly difficult thing at times and our navigators help with that. They also provide education.
When a patient is newly diagnosed, and they speak to their oncologist, and the oncologist says, “Well, this is what your cancer type is. These are the treatment options.” And then they make a decision, and the patient leaves, but there are tons of questions afterwards. There are lots of feelings about starting treatment. The navigators can help with answering those questions about the treatment, how to get the medications if they're getting oral medications, how to go about setting up appointments—what the logistics are of getting started with and going through treatment.
Social workers can also address psychosocial issues, [including] the adjustment to having a cancer diagnosis. We talk about how challenging it is for a patient to be diagnosed, but I don't think we always keep that front and center when we're working with patients. Being a patient advocate means not so much putting ourselves in the patient's shoes but asking the right questions to find out what those barriers to care are. What are those challenges? What's going on in that patient's head? Are there myths about treatment that they have that we could really address?
All of this is to really ease the patient's stress level by helping them to see that we're there supporting them. When patients come to us, they've been diagnosed, but they have a full enriched life prior to treatment, where they've had goals and dreams and daily activities that they were working on. Then they get this diagnosis and that's kind of all [disrupted].
They are a real person, not just a patient with cancer. This is someone who has a full, rich life and has those barriers, but also things that bring them joy. Keeping in tune with that is really important. It also becomes important when the patient is finished with treatment [in terms of] helping them through that transition, processing what happened to them physically and emotionally.
This is because cancer care is so intensive and patients are so caught up in what they're doing that when they're done, what I find is—working in the area of survivorship—patients are oftentimes reflecting on what was that experience? How do I make sense of that? How do I deal with these lingering effects? How do I move forward? What's this whole concept of a new normal? I can't go back to where I was, but how do I move forward and have the best quality of life and reduce my risk for recurrence?
That's where the programs that I run actually come in and really focus on supporting patients and [encouraging them to] be active in their own care, reflecting on some of those topics, and providing them some support around that, whether it's through art therapy, or yoga to address some of the scar tissue and range of motion issues that were impacted by cancer treatment.
Integrative health practices are important and there are many of them. As health care professionals, it's important to think about what the efficacy is around those practices. We have patients who are interested in finding ways to alleviate some of the [AEs associated with] treatments such as nausea, vomiting, and neuropathy, which are, of course, really common AEs. We can offer the medications, but a lot of patients are really hesitant to add another medication to their regimen; they're looking for things that they can be engaged in. This can include acupuncture; there has been a lot of data around it to help with symptom management and many other health conditions.
It's really important for me, as I'm referring patients to various resources, whether it's yoga at our facility or to an acupuncturist, that we're really guiding them with evidence-based information. There are some groups that do the research around integrative practices and the efficacy of them. The National Center for Complementary Integrative Health is a source for good information as well as the Society for Integrative Oncology [SIO].
Self-advocacy is something that doesn't always come naturally to patients, and especially in the health care environment, where there's something of a hierarchy. When they're diagnosed, patients are really quite afraid and worried. They're not always able to operate from the most thoughtful place. They rely on their doctors to give them good recommendations. But if patients are going to be engaged in the treatment decision-making at that point, they need their options to be presented to them in a way that's coherent and meets their health literacy level.
That also takes into consideration that they may be listening when they're highly anxious. For a physician talking to a patient, that communication is so important, and I know it's part of medical school education. [However], it's always something that we as humans could work on: our communication skills in various settings. Providers would do well to really keep in mind that the patient may be distressed. Ask questions such as “How much information do you want to know?” Because not everybody wants A-to-Z information.
The other area where oncologists can think about supporting patient advocacy is, again, in getting information that's going to be helpful to them. There are lots of sources beyond what happens in the consult room. Advocacy groups are incredible resources for patients to gain information and to meet other patients who have had a similar diagnosis. Many advocacy groups have conferences or match patients up as part of a survivor-to-patient, peer-to-peer support network; those can be a great comfort. Those are overseen for the most part, so there's a safe dynamic that gets established.
A lot of those groups also do advocacy on the Hill. For a patient who wants to get involved, whether it's self-advocacy, extending into their community, or at the political or legislative level, advocacy groups are really powerful. I refer patients to advocacy groups all the time, because we can't do it all within our hospital system. Physicians can't do it all and neither can I. Having a multidisciplinary team means including people beyond the walls of the cancer center; it is really useful. We do some partnerships with advocacy groups to present information to community members.
There are cancer-specific groups, and we run seminars with them or do Lunch and Learn activities. These are ways that we can extend our reach. We have our providers and team members talking about updates in clinical trials, updates in treatments, and how those different treatments work. But we also have nurse practitioners talking about how they support patients, and dieticians talking about nutrition.
Our hospital provides experts to deliver the content, and the advocacy group is really helpful in terms of talking about their resources and helping get the word out. One of the biggest challenges, I think, with programs and information is really reaching the right patient at the right time with the right information. We just have to keep operating at different levels, providing information to our patients and community members in different ways and at different times over time.
Thinking about World Cancer Day, there are so many disparities in the world. I'm in Washington DC, and it's a certain kind of population where access to care is pretty good. However, if you go to some more rural areas of our country, access is a lot harder; patients have to drive out west or drive long distances. In some United States territories, they don't have access to mammography and MRIs. Sometimes there isn't a radiologist who can read scans. There are a lot of discussion and awareness being raised about racial and socioeconomic issues and how those affect access to care, early diagnosis or late diagnosis, and treatments. There's a lot of work to be done.
World Cancer Day has me reflecting on the reinstitution of the Moonshot Program which is supporting patients in the United States. World Cancer Day is helping me to think about what's happening in our cancer center, what's happening across the world, and what's happening in our country. We need to make some real advances in research and ensure we include underrepresented populations in research.
We need to really think about how we are delivering care, given the constraints of insurance. It's complicated and there are a lot of challenges. Maybe this is an opportunity to regroup and think about how we're connected and how we support each other. The best way to really care for patients is to think more inclusively as opposed to in isolation.