Parenting with Advanced Cancer: Treatment Decisions, Palliative Care and Carpool

When Jen Singer was unexpectedly diagnosed with stage 3 aggressive B-cell non-Hodgkin lymphoma, on an afternoon when she had planned to pick up her kids for piano practice, a treatment plan was not the first thing on her mind.

“Every parent, when they find out they have cancer—any stage of cancer—the very first thing they think is ‘What about my children?’” she says. Now in remission, she writes the blog Parenting with Cancer to give information and support to other parents faced with a diagnosis, treatment, and even terminal cancer, information she said was hard to find seven years ago—and still is.

The authors of new research presented at the American Society of Clinical Oncology’s (ASCO) Quality of Care (QOC) Symposium hope to begin to change that trend and start the conversation in the oncology clinic. Because patients with young children often have different motivations regarding medical decisions than other patient groups, the following research could help develop better supportive-care services for them.

What Drives Treatment Decisions?

In a first-of-its-kind study, researchers surveyed 42 participants with terminal cancer and explored how being parents of young children impacted their treatment decisions. Nearly two-thirds of participants responded that having dependent children led them to more aggressive treatments that would extend their lives and time with their children. “I’d like to be here for as long as possible, even if it’s not in as good of shape as possible,” one participant noted.

In contrast, 15 percent of patients made treatment decisions that allowed them to better function as parents, such as less time in the hospital or less severe side effects. One participant mentioned that, “The side effects, the symptoms, I don’t want them to interfere with my daily activities. For example, my daughter, picking her up from school.”

Twelve percent based medical decisions on the ability to stay closer to their families, such as foregoing treatment that would require long hospital stays or long-distance travel for a clinical trial. About a quarter said that having children had no influence on their cancer treatment decisions. Patients surveyed were an average age of 44 years, and the average age of their children was about 12 years.

Devon Check, a doctoral student at the University of North Carolina (UNC) in Chapel Hill who presented the study at the ASCO QOC meeting, said previous research has shown that parents with advanced cancer, compared with non-parents, are more likely to prefer aggressive treatment versus treatment focused on relieving pain and discomfort. This study aims to dive a little deeper, and is just one part of a larger study led by Eliza Park, a psychiatrist at the Comprehensive Cancer Support Program at the UNC Lineberger Cancer Care Center.

“The ultimate goal of her line of research is to tailor supportive care for parents with cancer and their families,” Check says, and focusing on the psychosocial and decision-making needs of parents with advanced cancer is one step in that direction. The next step of the study will be to examine the role that parenting concerns and psychological distress may play in the relationship between parenting status and treatment decisions.

“Demonstrating these types of associations will be important in thinking about interventions to reduce parental distress,” she says.

Start a Discussion

One aim of the overall study is to initiate conversation about how to treat this unique patient population, which may have different priorities than patients with older children who may be acting as caregivers instead of needing care themselves. But patients shouldn’t wait for their doctors to start the discussion. Having an up-front conversation about what drives a patient’s medical decisions and goals of treatment, especially when the patient has terminal cancer, could lead to other options for therapy, or for supportive-care or palliative-care services, that may not have been brought up initially.

“What medical professionals and everyone need to understand is that we, as parents, don’t stop being parents just because we have cancer, and even with everyone helping us out, we still need to feel that we’re good parents,” Singer says.

Carrie Corey's son had just turned three weeks old when she learned of her stage 4 breast cancer recurrence. "I have to be able to chase my little wild man around the house, and I make that point very clear to my doctors," she says. [Read more on how Carrie Corey balances cancer treatment with motherhood in "Parenting with Advanced Cancer."]

Plans for End-of-Life Care

Check’s survey also found a lower-than-average percentage of patients interested in dying at home. Previous reports have shown that many patients with advanced cancer wish to die at home and make plans to do so. Those surveyed in Check’s study, on the other hand, were more interested in institutional hospice services than home-based care, citing a desire to protect their children from the dying process.

“For patients considering end-of-life issues, it seems important for the provider to understand the types of concerns and hesitations a parent might have about receiving hospice care at home, with his or her children present for that process,” Check says. The survey also suggested that there may still be confusion regarding the goals of palliative care and hospice, even among terminally ill patients.

While this was a small, exploratory study, she does believe there is value in these preliminary findings for patients and their doctors. “Ideally, our research will encourage the oncologist to ask questions about the relative importance for the patient of extending life as long as possible, spending as much time at home versus at the hospital as possible, and feeling well enough to actively participate in parenting,” Check says.

Additional Resources:

"Helping Kids Heal" from CURE magazine

“Honest Discussions Can Help Ease Kids’ Anxiety from Cancer” from CURE magazine

“What the Kids Would Tell You” from ParentingwithCancer.com

“This is What It’s Like Getting Cancer” from ParentingwithCancer.com