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In today’s blog post, CancerCare oncology social worker, Maria Chi, LCSW-R, discusses her article, The Hidden Cost of Cancer: Helping Clients Cope with Financial Toxicity, which was recently published in the Clinical Social Work Journal. Maria’s research focuses on how financial toxicity affects cancer patients’ mental health and quality of life, and what social workers can do to help patients cope.

What is financial toxicity?

Financial toxicity is partly an objective measure of the out-of-pocket expenses related to cancer treatment and comprehensive care, and partly a subjective measure of the feelings of distress related to that financial burden.

Why did you decide to look at financial toxicity for people with cancer, specifically?

Firstly, people with cancer have the highest burden of cost, compared with any other chronic illness, though it is a problem with other conditions as well. Additionally, cancer mortality rates are decreasing, even though the incidence of cancer is increasing, so that leaves more cancer survivors to deal with its financial aftermath.

At an anecdotal level, after working at CancerCare for nine and a half years, it’s just clearly such a burden for so many people. No matter where people are from, what area of the country, what type of cancer they have, what stage it’s in, what treatment they’re getting, or who they are demographically, financial toxicity is pervasive.

Obviously, some of those things do play a part in financial toxicity. But across the board, it’s a problem. I constantly hear people say that their financial problems are more stressful than having cancer. That’s pretty striking, when people with advanced cancers are saying, “It’s the money that’s killing me.”

What are some of the ways that financial toxicity affects people with cancer?

For people with insurance, the main source of financial toxicity is often out-of-pocket costs for office visits, treatments and medical supplies. Their insurance might cover part of those costs, but it might not. During my research, I came across a study which found that nearly a third of patients surveyed were concerned about how they would pay for their cancer treatment, even though 99 percent of this sample had health insurance.

For people without insurance, the costs can be catastrophic. Many of them delay or skip treatment, because they can’t afford it.

Many cancer patients cannot continue working while they are receiving treatment, so for them financial toxicity could include lost income. It could mean extra costs for being out of work and exhausting your sick time, if you’re lucky enough to have it, and then having to take unpaid medical leave. You’re maybe going from a two-income family to a one-income family. It could mean going into bankruptcy because of medical debt. It could mean getting evicted, or your house getting foreclosed on, because you can no longer afford to pay your rent or your mortgage, because you’re no longer working.

What role do social workers play in addressing financial toxicity?

Social workers are uniquely positioned to talk to patients about financial toxicity because financial issues do bring up feelings and emotions, and they can be intense. We hear that on the Hopeline every day – people get very emotional when they talk about it. Not even when they talk about their cancer, necessarily, but their money stress!

Social workers also play an important role in addressing financial toxicity by first identifying and assessing for it. There’s a lot of shame involved in asking for financial help, and people may not always self-identify as struggling with money issues or needing help.

How can social workers help people with cancer cope with financial toxicity?

What I argue in this paper is that the same psychosocial interventions that social workers use to help people cope with cancer can be used to help them cope with financial toxicity.

Those types of interventions can include strengths-based work, which helps clients identify what their strengths are and what they’ve previously done to cope with negative things in their lives. We can teach clients new coping skills, and we can help examine their beliefs and assumptions about cancer or about money. Those core beliefs may be adding to the client’s stress – if so, social workers can challenge them.

Social workers can also help clients with basic problem-solving. We can help them overcome obstacles in reaching out to loved ones for assistance. We can help them try to manage their expectations about how much treatment will cost, or advise them that there may be differences in cost. We can help them talk to their employer sooner, rather than later, about sick leave, or talk to their caregivers or partners about how to manage time off from work. We can also help identify resources, like co-pay assistance programs and local charity programs.

A lot of the time, there is no solution to financial toxicity. When those options are exhausted or may not be possible, social workers can help people focus on how to live a meaningful life despite the challenges that they face.

In the discussion section, you say that “The challenge is to [help clients adapt to their circumstances] without overlooking the structural flaws in our health care system that contribute to patients’ financial burden.” Can you say more about that?

I feel very strongly that if we only try to ameliorate individual situations, we risk “blaming the victim.” The real problem does not lie with patients, it lies with how we cover or don’t cover medical care in this country. Cancer doesn’t have to have such a catastrophic impact on people’s finances. It does because of the way that our health care system is set up.

Some people are critical of the word “resilience,” because you can make someone resilient to anything, without actually targeting the external stressor. We need to look at the stressor, as well, and why that exists, and not just put the burden on the individual to cope with it.

Was there anything that surprised you during the course of your research?

My assumption going into this research, based on my clinical experience at CancerCare, was that people who are highly burdened by financial toxicity might be less able to cope with their cancer at a certain level. I thought that, understandably, they may not be able to focus on the broader meaning and purpose in their lives, because they are so focused on trying to survive.

But I also know from my clinical experience that sometimes people, to their credit, still manage to create meaning and purpose in their lives, even while experiencing the physical and financial impacts of cancer.

What do you see next in the field of research on financial toxicity and cancer?

I would like to see more studies on specific, clinical interventions that tackle the issue of financial toxicity for people with cancer, to help them adjust to their circumstances. At the same time, I think it’s equally if not more important to focus on policy research that addresses the structural inequities of our health care system which lead to financial toxicity.

I also think more qualitative research needs to be done – I’d like to see more attention paid to the impact of financial toxicity on people’s everyday lives and their everyday functioning. I think that needs to be publicized more – how does this whole health care debate impact people on a day-to-day level? It’s very troubling when you see that roughly a third of cancer patients skip or delay treatment to save money. That’s really important to know, but I’d love to talk to those people and hear what that decision-making process is like for them.

This could be a whole separate paper, but I think race is such a huge issue in discussions about financial toxicity in cancer patients. People of color are disproportionately affected by this – they tend to be diagnosed later, they tend to receive a lower level of care and they tend to have less access to care. To me, that’s devastating.