How Financial Distress Can Affect Cancer Care
An interview with Christopher S Lathan, MD, MS, MPH, assistant professor of medicine, Harvard Medical School; faculty director, Cancer Care Equity Program; medical director, Dana-Farber Cancer Institute at St Elizabeth’s Medical Center, Boston, MA
Financial distress can present a significant burden for patients with cancer. People with cancer were also found to be 2.65 times more likely to file for bankruptcy than those who will never be diagnosed.1 Researchers have found that the cost of cancer care can cause significant financial harm to patients and can also lead to a reduced quality of life.2-5 In addition, many studies have shown that a patient’s socioeconomic status is associated with his or her cancer outcomes,6-8 including mortality risk.
Christopher S Lathan, MD, MS, MPH, Dana-Farber Cancer Center, Boston, MA, is one of the leading researchers who has been investigating the relationship between financial strain, symptom burden, and quality of life for patients with cancer. In an article published in Journal of Clinical Oncology,9 Dr Lathan and his colleagues reported that, relative to patients without financial strain, those with financial strain reported significantly increased pain, greater symptom burden, and poorer quality of life. They also observed a dose-response relationship between level of financial strain and measures of wellbeing. Their findings suggest that financial strain, a distinct entity separate from income level and other socioeconomic factors, may be an important measure for clinicians to consider when determining care for patients.
In order to help address the issue of financial distress among patients with cancer, Dr Lathan has also launched a community cancer clinic in Boston to provide better care to individuals who lack adequate access to cancer resources. Journal of Clinical Pathways spoke with Dr Lathan about the clinic, his research, and his thoughts on how clinical pathways can be used to improve the value of cancer treatment not only to the health system as a whole but also to patients.
You recently authored a paper describing the effect of financial strain on the quality of life in patients with lung or colorectal cancers. Can you briefly explain what the difference is between financial strain and socioeconomic status? Why is it important to distinguish between the two?
Well, socioeconomic status is really an amalgam of many, many different things. So when we do these retrospective analyses and try to define what could affect patient care, we chose a marker for socioeconomic status. That can be individual income, if we can get it, but if we can’t, sometimes we’ll look at insurance or education. And all of these things are trying to get at the social fabric of the patient. What environment are they coming from? Now, sometimes we over-simplify and think that we’ve controlled for socioeconomic status because we have insurance and income, and we think that will tell us the overall effect these things have on the patient. But people in the social sciences field have long said that, really, there are lots of different nuances related to wealth and income—you can have high income but low wealth. Financial distress, financial toxicity, and financial strain are terms we hear people using a lot, and there are some questions you could ask that might indicate if a household is having some financial distress. That’s different from how much money you make—it’s related, obviously, but they’re not exactly the same thing. That’s why we spent a lot of time in our research trying to show that there’s something separate to this idea of being in financial distress—not being able to survive on your savings for more than a few months—that’s actually saying something above and beyond socioeconomic status that could really affect these patients. That’s something we had a hypothesis about in the beginning—that it’s harder for patients in financial distress to come in and have access to care, because if you miss work for an appointment, then you don’t get paid, and that visit costs you money. So, you can see that there are all these things that contribute to some of the findings we had, which were important to validate and show that there is something separate about this financial distress that is not exactly socioeconomic status. It’s a part of it, but this actually has some predictive value that is separate from just income and education.
Also, it’s sometimes difficult to get a person’s income, but questions you can ask about financial distress, and the ones we use, can make it easier to screen. In our study, 80% of patients answered questions when we asked about financial distress specifically, which you might not get when talking to these same patients about income. So, what we were getting at is that not only is this factor separate from income and separate from race—though they track similarly—but it is also a question patients might have an easier time answering. Additionally, it was also an indicator of patients’ quality of life. It links to clinical outcomes at the beginning of diagnosis, so it’s not what we see in other studies, which often say that cancer makes you poor. What we’re asking is: what happens if you are poor before the cancer diagnosis? And the answer seems to be that your symptoms are worse and you seem to have a poorer quality of life. That’s not surprising, but we thought it was important to show.
What do you believe are some of the underlying factors of this association?
We talked about this a little bit in the discussion section of our analysis, and, in fairness, when you do a retrospective study and not a prospective evaluation, it is very hard to get to causality. So, we can talk about relationships, which I think are important, but any discussion of causality is really hypothetical and conceptual. Having said that, our hypothesis is that there are many discreet ways this could be happening. It could be that when you have financial distress, you are unable to access care at the primary or specialty levels. Or perhaps you could access the care, but you were unable to adhere to or utilize that care to the maximum, because of the financial strain. And again, maybe you can’t make appointments because you can’t travel or can’t afford to miss work. So: (1) access; and (2) you get there, but you can’t really benefit from it.
What that means is that, by the time a patient reaches a specialist, he or she may already be presenting with advanced or later stage disease. It’s some combination of that, which I think might account for the associations we’re seeing. So, my hypothesis is that when you’re poorer, you just experience more difficulties during normal care procedures, including access to care, adherence to care, and presenting with later stage disease. You just aren’t able to take advantage of the specialty care options. Over time, that all is probably at the root of why we’re seeing the outcomes we are.
Do you believe it is appropriate to have conversations about cost with patients in the clinical setting?
The short answer to your question is yes. I think we should talk about cost, but we need to look at it from the perspective of the patient. Now, one of the issues I’ve had with the value proposition in medicine is that, quite frankly, it has really excluded the patient. It talks about cost savings to the system. We talk a lot about value and demonstrating value. Yet, when you look at those models, the assessments of value in the community haven’t really been seen. We may say that this medication could end up costing you $15,000, but what we’re really saying is, “What is the cost to the system?” Not to be provocative about it, but I don’t think we really think or talk enough about the individual impact to poorer patients. We talk a lot about the impact on middle-income professions, because we think, “My gosh, you could lose your job and won’t be able to pay your bills.” But as we look at the value proposition in medicine, we don’t think about how poorer patients are being denied access to some of these new and really effective forms of treatment. And when we add this value proposition, it basically means that the people who have the least amount of money get restricted the most because they have to pick insurance plans that are really looking at cost and value. That exacerbates some of the stereotypes that we have.
So, I like the value proposition, but I don’t think we’re being honest with ourselves when we talk about how we implement it and talk about it with patients. If you look at any of the people who are taking care of the truly poor, it’s very different than what we’re talking about when we ask, “What’s the value of this new and expensive treatment, and how will it affect our system?” Those are two different things—cost to the system and cost to the patient. And then, to ask a patient who is poor about the value or the cost of his or her life versus the cost of a treatment is very difficult for anybody. We should have that conversation with patients in order to let them know about their options and what those options mean, but right now we are really asking them to make unfair choices.
So you think that some of these frameworks could restrict patient access to treatment options?
That’s exactly what I’m saying. The people who will have their access most restricted are the people with the least amount of money. So, if you have a great health insurance plan, or you don’t but can still pay out of pocket for some things, then you’re going to fly to your next treatment or that important clinical trial. If you are on a state Medicaid program and they restrict where you can go, then you’re not going to get genetic testing the same way, you’re not going to get the same access to clinical trials, and you really have very little choice in the matter. But these things are being put in to try and save money for the system. That’s because we don’t have a national system. If you look at Europe, they do this a little better than us; they actually try and do it system-wide. There are still regional issues and issues where people with a lot of money can still override the system to get what they want, but it’s very different from our system.
Are there any changes that could be made to the system that might help to alleviate some of these access issues?
As we move more and more towards these restrictive health insurance plans, we really need to have an honest discussion about equity. Value and cost are seen on one side, but we fail to consider equity as its own, separate entity. We need to stop giving lip service to regional disparities and restrictions based on rural areas. Instead, let’s think about cost but also about equity and getting patients access to care. The hard part is that when more people have access to care, the more cost there is to the system. A more frank discussion of that, instead of pretending the two are not related, would be very helpful.
Do you see clinical pathways as a possible solution to providing quality care at manageable costs to patients?
Clinical pathways can be very helpful—again, as long as they aren’t restrictive. Most clinical pathways are really set up so you can evaluate what your clinicians are doing and suggest consensus treatment. Then, if you have to go off pathway, you just have to give a reason. Those sorts of pathways are very helpful because you can then track why people are going off pathways, and, if there are outliers, you can try and gain more of a consensus around what the best care is. It’s really a way to develop what the best options are and create plans that are uniformed around that. I don’t have any problems at all with pathways. We use them at our institution, and I think they are helpful as long as they aren’t saying that you can’t ever give this drug.
You now run your own outreach facility at a federally qualified oncology clinic in Massachusetts. What goals do you hope to accomplish at the clinic, and what approaches are you taking?
We’re trying to bring our oncologists a little closer to the community. So, instead of waiting for cancer diagnosis and then seeing an oncologist, we make ourselves more available before and after cancer presents. We’re really asking the primary care doctor to refer to us with any cancer-related questions. So we could be doing screening, we could be helping with diagnosis, and we could be working with survivors. We also try to help educate the community about critical health issues through doctor lectures and to help with things like smoking cessation. We look at the whole spectrum of cancer, from prevention to end-of-life care, so that we can engage with the community and the internal medicine providers. We also try to assist people who may have gotten diagnosed prior to coming to the community. In some cases, these are immigrants who were diagnosed with cancer in another country. The community we work in has a high poverty level, and many times people are working, so they have a difficult time getting in for screenings. We try to help them with that. And, if the primary care physician has any issues or questions, they can send the patient to us, and we have more time and resources to make sure patients get what they need in conjunction with their primary care physician.
You mention community as an important part of what you do. Has part of this been an attempt to try and work more directly with people who might otherwise not receive care?
Exactly right. I think too many times oncologists have not been as engaged in their communities as they should. Compared with other specialties—infectious disease, for example—that have always had a social justice arm, I don’t think oncology has done as much. This is my effort to get a little closer to the issues in the community.
How successful has the clinic been? Do you have any data showing that this has led to improved outcomes?
It’s difficult to look at the hard outcomes that you want, survival data in particular. Some of this is prevention, some of it is expediting diagnoses, and so it could take a long time to get that data. It’s also difficult to extrapolate and analyze the data we do have. We do have a database we are using, but it will take years and years to get survival data. I think what would be better is a prospective evaluation of this model, having a control clinic and looking at the diagnostic outcomes, which is what we’re looking at next.
Anecdotally, has the clinic been well received by patients?
Absolutely. Our focus group data and our qualitative data do show that patients really like it. They feel like they are getting analyzed and are getting extra attention. And providers like it because they get to refer to somebody right on site; they don’t have to get through some bureaucratic mess to get a patient to a specialist. We can really take care of that for them. And, so far, we have had some great opportunities to help people—people who might have been lost otherwise.
We had one homeless gentleman who couldn’t get his colonoscopy, and he was referred to us, even though he didn’t have cancer, because his primary care doctor didn’t know how to get this guy his colonoscopy since he couldn’t get him through prep. So our programmer, my nurse navigator, set everything up and got him space in a respite house for the night to do his prep. Sadly, and I guess luckily, he had colon cancer and he went down and began treatment. And now, I think in that situation, we might have been dealing with metastatic disease later if we didn’t create a bridge addressing these access issues to help these people. What we did wasn’t great science. It was having a great navigator who was able to set everything up. It was tangentially related to what oncologists do, but because we were there, we were able to help him. We have many stories like that.
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9. Lathan CS, Cronin A, Tucker-Seeley R, Zafar SY, Ayanian JZ, Schrag D. Association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer [Published online ahead of print February 29, 2016]. J Clin Oncol. doi:10.1200/JCO.2015.63.2232.