The hidden toxicity of cancer care
Reducing the unseen burdens faced by cancer patients
University of Minnesota researcher Arjun Gupta is aiming to reduce the time and financial burdens people with cancer face that go beyond the physical effects of the cancer itself.
Arjun Gupta, MBBS, is an assistant professor and researcher at the University of Minnesota Medical School. Dr. Gupta is a gastrointestinal oncologist who is passionate about improving the quality of life for cancer patients.
In this Q&A, Dr. Gupta speaks about his research on identifying, understanding, and improving the burdens of receiving cancer care.
Why did you decide to enter the medical field?
Growing up in New Delhi, India, I was surrounded by science and medicine. My parents are both physicians. My father is a pediatrician, and my mother is a pathologist. The only other career I envisioned for myself was becoming a cricketer. I went into medicine because I thought I would become a physiotherapist for the Indian Cricket Team. As I studied, I got more interested in oncology. After reading a chapter of a pathology textbook about cancer in medical school, I knew oncology was right for me.
Another inspiration for my career was seeing my grandfather ill with lymphoma. He used to love to eat an Indian sweet ‘’gulab jamun’’, but he used to eat it with ketchup because it was the only thing he could taste after chemotherapy. It’s experiences like that that guide me as an oncologist. So much of the patient experience is not easily visible to oncologists. With people with gastrointestinal cancers, I try to consider things that matter most to patients.
During my career, I’ve discovered that medicine is a union of science and art. The ability to apply the latest science in a caring manner is very gratifying.
What topics do you research and how did you decide on those topics?
Clinically, I’m focusing on patients with gastrointestinal cancers. On the research side, we do symptom intervention trials that aim to come up with better ways to manage the symptoms of the cancer or its treatment. The symptoms are not only bothersome, but can impact quality of life and lead to problems like reduced sensation for feeling temperatures, which can put people at risk for burns when cooking.
My other interest is health services research that aims to reduce the burdens of cancer care. For example, we’ve found that for some patients with stage 4 cancer, 1 day of every 4 days alive is spent going back-and-forth to the clinic. Can we find ways to make care more convenient to the patient and their care partners and decrease burdens?
What else would you like our readers to know about your research?
Our research portfolio is large. We also focus on financial burdens with cancer care such as the cost of prescription drugs or how much patients pay out of pocket. Rates of debt are increasing and can lead to patients delaying or avoiding care.
Most recently, we are researching what we call ‘’time toxicity’’, which is all of the time-related burdens of cancer care that patients face. Our latest research has shown that for some cancer treatments, the time-costs of pursuing a cancer treatment can overshadow the survival benefits of pursuing it. Currently, the oncology community lacks data on these time burdens, so our ask is that clinical trials record these time costs so patients can make more informed decisions.
What are ‘’hidden toxicities’’ in cancer care?
There are several. Financial burdens were recognized and named 15 years ago. We’ve only recently recognized the time and logistical burdens. Logistics are things like long times on the phone and negotiating with insurers. We hope these burdens start to be measured so we can intervene and relieve patients of them.
What are ways to solve these burdens faced by cancer patients?
When I think of financial toxicity, having good insurance coverage is the single most important thing to avoid financial ruin.
In terms of time toxicity, understanding and realizing the expected time burdens of treatments before signing up for them is an early step patients and providers can discuss. A more concrete step health systems can take is to fully re-examine how we’re delivering care. One idea is having a dedicated navigator or scheduler to plan personalized care to patients to decrease the time they spend coming into appointments through bunching them together on the same day.
Are there currently people reducing these burdens on cancer patients?
We are one of a few groups working on these burdens right now. Reactions from the cancer community have been overwhelmingly positive: we have received traction. We expect to be able to develop interventions in the coming years. One example of a solution is telehealth–but not everyone has equal access to technology. While there may be seemingly good solutions to time toxicity, do they increase the emotional and logistical toxicity? We shouldn’t move fast and blindly, even if well-intentioned, before delivering interventions. We do more harm than good when we launch an intervention without first having knowledge of how it will impact people. We are doing the groundwork now.
What health disparities are you aware of in this area?
Time toxicity measures interaction with the health care system. When someone comes in more often, it’s considered more time-toxic. On the other hand, we need to consider access to care. What appears to be less time toxicity may actually reflect a lack of access to care.
A second concern is that time is not the same for everyone. Some people can have a private vehicle, a chauffeur and travel to the appointment in 10 minutes, but for some people, it may take all day because they have to take public transportation. We should be aware of these differences.
What are the challenges you have to deal with to make a difference in reducing the toxicities you have told us about?
The biggest challenge is fighting inertia and avoiding doing things the way they have always been done. The second challenge is our own time toxicity as clinicians. People are fighting a broken healthcare system and fighting insurance companies for ICD codes, prior authorizations, etc. If we can instead use that time to take care of patients, we can deliver better care and lessen our own stress.
What would you recommend to patients/caregivers when dealing with toxicities generated in the healthcare system?
Speak up. People in medicine care for you and they will listen. Patients should not downplay their burdens, but rather share them with their providers, friends, and family. It’s a shame that I have to say this, because the burden should not be on the patient to communicate–they are already dealing with enough given their diagnosis.
What does the U.S. have to learn from other countries in avoiding or addressing toxicities?
I’ve spoken with friends who are oncologists in India. They say they wish they had access to all the drugs and therapies that we do in the U.S, but I sometimes say be glad you don’t because we have created the perfect storm due to the complex and bulky system for navigating care in the U.S. As a result, care is delivered inefficiently.
What impact do you want to make with your research?
Our goal is that everyone with cancer should be able to choose how to spend their precious remaining time.
Do you have opportunities for people and organizations who want to support your research or make a difference in these toxicities?
We are always looking for people affected by cancer, especially to do qualitative interviews of patients and care partners. We are seeking to engage with local societies and organizations as well. We always welcome volunteers, so please reach out to me at [email protected] if you are interested.
