Cancer Treatment’s By-Product: Time Toxicity
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
AUGUST 25, 2022
The concept of time toxicity is new to me, so I suspect that many of you are also unfamiliar with this term. Time toxicity can be understood as the amount of time committed to dealing with cancer.
This includes time spent at medical appointments or treatments, driving and waiting, trying to manage one’s care (making appointments, dealing with paperwork, talking with the insurance company, paying bills), and dealing with any related issues that arise and may require extra visits to Urgent Care or even the Emergency Room. It may also be fair to include time spent not feeling well or having side effects from chemotherapy or other treatment.
Time toxicity can be understood as the amount of time committed to dealing with cancer.
A shorthand definition could be: time spent with/because of cancer, rather than time spent with the rest of your life. Although oncologists have become skilled at discussing potential gains from a particular treatment and the related financial costs, they rarely address time.
This theory can be applied to coping with any illness, but it is probably most important for people living with metastatic or advanced cancers. We know that, especially as someone becomes more ill, any one treatment is likely to be helpful for a more limited period of time.
Again, our doctors can and should tell us that chemo X may be effective for four to six months, but it might also be very helpful to hear about what those months may look like. This quickly becomes painful and tricky territory as no doctor can promise any particular outcome, and many doctors and patients would prefer not to discuss the hardest facts until they can no longer be avoided.
Here is an example: A patient might or might not make a different decision if told that treatment X may prolong life for six months, but it is likely that three of those months will be spent in the hospital due to reactions and treatment toxicities vs. treatment Y that may prolong life for four months, but almost certainly all those months can be spent at home. It is important to note that it is impossible to accurately predict any of this, but it is possible to consider it.
There is not a lot of existing data to give us this kind of information, but there is more if we consider clinical trials. Some patients feel that all the demands and attention paid to clinical trial participants are well worth the time. They are, of course, hopeful that the treatment will be helpful, but also like having so much care from their doctors and nurses and knowing they will have a rapid response to any problem that arises.
Since trials are written with all the rules, it is possible to look at them and compute how much time probably will be spent keeping treatment records and going to the hospital for blood draws, scans or other tests, appointments of many kinds, and time with their medical caregivers.
Especially if the geography is challenging, it can be very tough to make so many visits. I remember one woman who enrolled in a clinical trial, as a Hail Mary effort, that was based New York. She ended up spending more than half or her remaining months on the train or in a New York hotel or otherwise away from her home and family. She later regretted this decision, although she probably would have felt differently had the treatment been more effective.
Certainly, sometimes participation in a clinical trial, even under dire circumstances, aligns nicely with a patient’s wishes and goals. It does seem important, however, that discussion about the time commitments—the time toxicity—be included in the conversation.
Let us remember, too, that the same comments apply to a patient’s primary caregiver. Signing up for a difficult treatment that is going to take a lot of time likely means that a spouse, adult child, or other family member will be making the same commitment.
As an aside, it seems important to also remember and factor in other important life events. If a particular trial or treatment choice will make it impossible to attend a graduation, wedding, or long-planned family vacation, that should be considered and weighed with all the other factors in the decision.
As is always true in cancer care, the final choice should belong to the patient. We talk about patient-centered care, and this is a place where more than lip service should be given to that perspective. Patients need full disclosure about treatments, including information about the likely time toxicity of each proffered treatment choice.