Financial toxicity, time toxicity, and administrative burdens

Photo description: Photo taken from above of people of all ages navigating a maze. Photo by Susan Q Yin on Unsplash.

Yes! This is the vocabulary I needed to describe my current journey to get a total knee replacement. When I was sharing a little about the alienating, technology-mediated, bureaucratic maze I am navigating to get care and its impact on my mood, resilience, and feelings about the upcoming procedure, my friend who works in public health research immediately rattled off these terms and sent me a relevant article (thanks, Jessica!).

To receive healthcare for serious and complex conditions, patients and their caregivers are forced—during a difficult time—to spend considerable time and energy engaged in understanding and completing forms, scheduling, advocating for themselves, appealing insurance denials, and jumping through many other hoops. In addition, people are often unprepared for the financial costs of serious illness, as we gradually learn that some of the high costs are not covered by insurance. Financial pressures create additional strain. The concepts of financial and time toxicity were invented to describe the toll that these burdens take on patients dealing with serious medical issues such as cancer.

Studies show that these are “prognostic for adherence [to treatment], quality of life, and survival.” Not in a good way. In fact, the impacts are dramatically negative, leading to quotes like this one in the article referenced above: “More recently, the concept of time toxicity has drawn attention to the lived days consumed by cumulative treatment demands (e.g., travel, waiting, and clinic visits) that may rival or even exceed the months of life gained.” Yikes!

Thankfully, my situation is not life-threatening. But there are moments when I feel like I am in the twilight zone, and I’ve already burst into tears in the doctor’s office. I’ve still got a long haul of authorizations to secure, long distances to drive to appointments, and bills to monitor and appeal before paying.

What does this have to do with nonprofits?

I do believe that much of the burden that patients are experiencing is driven by companies seeking to maximize profit. Across most industries, companies are cutting customer service, relying on automated systems, and externalizing the costs of doing business, often onto customers. But nonprofits are not motivated by greed, so surely they are not going to engage in toxic behaviors. Nonprofits are here for our clients and strive to make their lives better, right? Definitely, and we do every day. However, we can also create financial and time toxicity for clients or increase administrative burden. This happens through our intake and screening processes, requirements to prove eligibility for services, and collection of data to demonstrate our impact. The required data and screening criteria are usually dictated by public or private funding sources, either directly or indirectly. They may not be aware of the impact to people at the frontline level.

The burden of some of these requirements can fall more heavily on people living in poverty, unhoused people, and people with limited English-speaking ability. For these folks, access to computers and internet may be limited, they may not be able to understand and navigate the required forms, or their time may be constrained due to basic survival demands.

The burdens may be also increased by the use of automation and AI assistance. Nonprofits who are stretched thin are perhaps particularly vulnerable to being enticed by “labor-saving devices” to help us “do more with less.” This can leave potential and current clients struggling to navigate an online portal without human assistance, worsening their stress and increasing time toxicity. A nonprofit or public agency deciding to utilize AI screening, predictive software, and chatbots should thoroughly consider the potential downsizes, including whether they are simply shifting burdens onto their clients (as well as additional thorny ethical and privacy issues).

It is worth reevaluating the necessity of the administrative requirements we place on participants. Are we asking something that is reasonable and proportionate to the benefit received? Is all the information we are asking for being utilized? What is the purpose of screening criteria? Are we still comfortable with the rationale for the screening? Historically, poor people have been scrutinized to determine whether they are the “right kind” of poor people who are deserving of charity. Don’t we now know better than to believe that poverty is caused by the individual, independent of outside forces like racism and traumatic events? Some nonprofits ask these questions as a part of rationing and targeting services. This is understandable, but also somewhat problematic. Can we really devise a few questions that separate out the truly needy from pretenders? Is there any evidence that pretending is a widespread or a worthwhile endeavor for non-needy individuals?

I like to imagine a future world where people’s basic needs are met, eliminating the necessity of judging the worthiness of others. Until then, I will continue to advocate for less intrusive, less toxic interventions and greater respect for the humanity and dignity of all people.