For women with breast cancer, the transition from active treatment to the post-treatment period and ongoing survivorship can be challenging, as the journey is often not clear.
Using a “black box” metaphor, the author of a new study compares the cancer experience to a container.
The study found that women often see cancer treatment as a goal to be completed, something that needs to be gotten through and then is “over and done with,” whereas in reality, it may turn out to be an experience that has no definite end and that may require further effort.
“If women experience their cancer treatment as black box, then opening these black boxes enables us to consider how information pathways might connect women differently to improve survivorship care,” writes the author, Deborah Lefkowitz, PhD, School of Public Policy, University of California, Riverside, California.
For the study, Lefkowitz conducted interviews with 82 breast cancer patients and 84 healthcare providers in the Inland Empire region of Southern California. “Women in this region rely primarily on services in community-based settings rather than academic hospitals or comprehensive cancer centers,” she notes.
“My analysis draws attention to three specific situations in which difficulties emerge: when survivors do not understand what their treatment accomplishes; do not acknowledge a terminal diagnosis; or fail to see how their treatment might be connected to post-treatment symptoms,” the author notes.
The study was published online August 1 in Social Science and Medicine.
“Black Box” Breakdowns
In the article, Lefkowitz explains that her “black box” metaphor describes either a process or an object the function of which is taken for granted.
For example, a physician’s referral can be black-boxed. “When black-boxed, we assume that the referral automatically enables a woman to access a particular service,” Lefkowitz explains.
On the other hand, people don’t consider that inside the black box, multiple interconnected and interdependent processes and communications must take place for the referral to result in service access.
In such situations, it is not the black box per se that becomes problematic but rather the way black-boxing conceals the complexity of information pathways, their communicative function and metaphorical significance.
For example, surveillance for a new or metastasized cancer is one essential component of survivorship care.
Lefkowitz describes a patient who required a PET scan. The patient had about a 2-hour commute to and from the cancer center. For her, being able to receive the results of the scan and the oncology assessment on the same day represented a successful functioning of a black box. In contrast, waiting for the family doctor to refer her to her oncologist, who then had to order a PET scan, and to then wait a month to get the results of the scan represents a situation in which the black box has broken down.
“Long delays between stages of information transmission indicated that information pathways were functioning, but not optimally,” Lefkowitz observes.
The black-box metaphor suggests that breast cancer treatment is a “bounded” experience set off from the rest of life — it is something that can be over and done with, she continues.
But often there is often no definite “end,” and the line between treatment and the end of treatment is blurred. For example, a patient may develop metastatic disease or have a poor outcome from, say, breast reconstruction surgery. Others may develop long-term side effects or experience late effects after treatment. These scenarios require long-term management strategies.
One example of this is when patients develop cardiomyopathy and congestive heart failure as a result of the chemotherapy they have received for breast cancer. For these patients, there is no real “end” in sight, because the new cardiovascular complications will require lifelong monitoring and treatment.
Lefkowitz points out that psychosocial problems, such as depression, are a reality for many cancer survivors. The American College of Surgeons’ Commission on Cancer requires that its accredited cancer programs implement psychosocial distress screening at least once during the patient’s first course of treatment. “If the screening indicates moderate or severe distress, patients must be provided psychosocial services, either on site or through referral to outside resources,” she notes.
Some community-based cancer programs lack trained psychosocial oncology personnel, meaning that cancer support services contained in the black box vary significantly by geography and by cancer programs. “Connections also fail when someone in the referral chain drops the ball,” the author observes.
Ideally, distress screening should be included in post-treatment survivorship care. But the responses from patients and providers that she collected in her survey show that the information pathway linking distressed patients with psychosocial support stops after patients complete treatment and does not extend into the post-treatment survivorship period, when depression often occurs.
Access to services may also require financial assistance, assistance with transportation, or psychosocial counseling, all of which may be unavailable to many cancer survivors.
“In terms of function, black-boxing can mask serious communication gaps between survivors and their providers,” the author notes. Especially when cancer treatment is black-boxed and is considered as being “over and done with,” women may struggle to find the care and support that they need in the post-treatment period, she concludes.
The research was supported by the National Cancer Institute of the National Institutes of Health. Lefkowitz has disclosed no relevant financial relationships.
So Sci Med. Published online August 1, 2022. Full text