Speaking with patients with cancer about financial toxicity, including available resources to help them pay for treatment and other necessities, can become a collaborative effort within an institution.
Addressing financial toxicity in patients with cancer can be done through a collaborative effort from the care team, including the involvement of oncology nurses, who often develop a relationship with patients that goes beyond cancer itself.
Max McMahon, LICSW, clinical social worker at Dana-Farber Cancer Institute in Boston, primarily works with patients with genitourinary cancers including bladder, kidney and prostate cancers. He spoke with Oncology Nursing News about the financial toxicity experienced by patients with cancer, and how oncology nurses can play a role in helping them get the help they need.
Can you tell us a bit about what you do as a clinical social worker regarding the financial needs of patients with cancer?
I work collaboratively with our provider team, so that's nurse navigators, medical oncologist, PAs, NPs, providing the best care I can as a social worker, which really entails a lot of different aspects of care. So it's mental health and wellbeing, adjustment to new diagnosis, coping with treatment with metastatic or progressive disease, it's addressing issues that come up with patients and families, both emotionally and more lifestyle related. So really, I do what I can to help patients with housing issues, with financial needs, with access to services, with referrals to other resources. I'm sort of a catch-all for social work oncology.
I think it's similar with nurses, trying to do what we can, sometimes a little bit out of the parameters of direct cancer care. And it's really like, what can I help with, what kind of access can I provide the patient and family for resources?
What have you seen in your practice regarding financial toxicity and how it has impacted patients?
I really see financial toxicity every day with the patients that I meet with. So we're talking about significant reductions in income for patients who are having to leave work or take a leave of absence, sometimes they are fired or quit work, or employers let them go. So a 2-income household might go down to 1 very quickly, or it might be a 1-income household that goes down to no income. And certainly, I see patients who have no income stream at all coming through, they might be applying for disability. But that may be a month-long process. So I see very significant financial strain for patients and families.
I particularly see with older adults on fixed income, they have a very limited amount of money. And so that money is going towards their basic necessities, so rent, utilities and food, the additional expenses of copays, coinsurance, meds, transportation for treatment, those things are really enormous burdens on patients. Even a couple of hundred dollars additionally a month, for some people, that might not be a burden; for many of my patients and families, that is. And it might be a couple hundred dollars, it could be a couple thousand dollars, depending on the context.
So certainly, in everyday work, a significant amount of my patients are dealing with financial toxicity. And some of these patients may have already been on the margins. So they may have been kind of working poor or underemployed or hourly wage workers. So they're already having a hard time making ends meet and then diagnosis and treatment is an additional burden. They may be families that have more of a middle-class income, but again, they have to cut back, or they're not getting the income because of treatment. So really, it affects so many people in really different ways. But it creates a lot of stress, and the stress has real consequences that I see.
How do you work across the care team to connect patients to resources?
In my role, there's a real reliance on the different providers and practitioners. We really communicate as a team. So, oncologists, when they feel like there's a resource need that a patient has, they're very quick to involve me. We also have resource specialists that are geared towards more limited support around transportation, gift cards, maybe utility or rent issues that come up. So we have the luxury here at Dana-Farber of having staff who can do some of that resource support. My role is to educate the teams—that's the oncologist and the nurses—about some of the resources we have at our center. And a lot of the work is constant education, both for patients and families, but also providers, clinicians, so they understand what we can offer.
I have to say, the relationships with nurses are first and foremost, and they're really at the frontlines. Often, nurses are seeing patients more often and more intimately than the doctors. So I really rely very closely on my nurse navigators who are really adept at not just asking about symptoms and explaining treatment, but want to know the context outside of the care itself, what's going on at home, picking up on cues from patients, and then passing that along to me, if they think there's support that I can offer.
I try to foster with my nursing team, please come to me with questions, concerns, share what patients tell you and vice versa. When patients share things with me, I try to communicate those back to nursing and oncology.
Would you like to share some of those resources that you have to offer as an institution?
One of the most important things that that I've found, which is always sort of shocking to me, is patients just aren't aware that their hospitals have financial assistance policies that they may qualify for. So when I'm meeting with a patient, and I sense that there's some financial distress, or they're having a hard time making ends meet, I do say, “we have a financial assistance policy, which may significantly reduce the burden of financial stress, financial toxicity,” and I really try to normalize that. And so that's always our first line is, a patient may have a significant reduction in costs, if our institute can cover their care. Sometimes it's known as charity care at some centers. And so I do talk to the nurses, too, about, please let patients know that they can apply for financial assistance.
What we really should be doing is screening all patients as a matter of just general policy when they become enrolled. We don't do that in sort of a more methodical way, but we should. That's the first thing is, will the patient screen in and can they get reduced costs with care. And that would significantly impact imaging, any kind of scans, treatment costs, that will add them to that free parking list. So there's no parking fees. We also give gift cards to patients. So that can be grocery stores. We also do Target, and Walmart. We have a Patient Assistance Fund at the holiday times in the tens of thousands of dollars. So our social workers reach out to patients and say, hey, look, can we send you a gift card, so sometimes it might be a few hundred dollars. And that's really meaningful to a patient, both symbolically and practically, just if it can help with expenses.
I mentioned our resource specialists, what they also will do is send grant and foundation applications to patients. So I really rely on the resource specialists to have a pulse on the grant cycle and foundation support. Because as most of us know who do this work, it's really hard to keep track of what funds are open to which patients; sometimes they close without warning or without notice, or they're very time limited. So it's a lot to keep track of. And so to have other staff and folks who understand the grant and foundation world is really crucial. And we do have that here at Dana-Farber. So that's a luxury I have, and a lot of cancer centers don't have dedicated staff who are just looking into foundation support.
What is really important for oncology nurses to know about supporting patients?
It's great when nurses take an interest in the lives of their patients outside of the walls of the institution, and it's really scary to talk about financial distress and toxicity, because we can feel like our hands are tied. And one way of framing it is being able to ask patients do they have concerns?
And also, I think about financial toxicity in two ways, which one is, what is the debt or expenses that have already been accrued that might be impacting patients? And then what are projected expenses that might come up over the course of treatment? So it can be really helpful for nurses to be informed about … what are the projected costs and to be able to pass that information along to patients. Now, that's hard to do. But understanding how does insurance work, how does Medicare work, how do these drugs work, how does the pharmacy program work. Some of this federal, some of this is state, some of this is very particular to the oncology institution. But becoming as well versed as we can with these domains is really helpful. Because the more information we give to patients, the better they feel. Even if that's hard information, they want to know. So to be able to say, this is a projected cost, this is what it might cost you.
A side note that I would just say really quickly is one thing we shouldn't do, which I see happen sometimes, is patients will Google or they say oh my gosh, this medication is going to cost me $10,000 or $20,000. And we don't want to be quoting prices and costs that in reality, don't get passed down to a patient because that creates a lot of anxiety. So we want to really be able to provide a realistic idea or range of what costs may be. And that might be costs for imaging, that might be costs for co pays or coinsurance. And nurses aren't going to necessarily know that, but to be able to refer and say, hey, look, we'd like you to talk to our financial counselor or access management. So I think nurses can be a really valuable asset just by connecting and bridging to other resources within the institution.