What if caring too much about your patients could harm you?
Helping children beat nerve tumors is not easy. Beyond the complexities of managing symptoms and controlling progression, continuous exposure to emotionally charged situations has taken a toll on oncologists.
A recent survey by the American Society of Clinical Oncology found that 59% of oncologists in the United States report feeling burnt out and 57% are emotionally exhausted.
What is going on?
Here, we will discuss the impact of daily trauma on the human psyche, how care environments contribute to this situation, and ways to address these difficulties.
Nerve Tumors in Children
Neurofibromatosis type 1 (NF1) is a genetic condition that usually manifests in early childhood and is characterized by a predisposition to tumor growth in nerves, skin, and bones. These tend to be benign in most cases but can cause vision loss, heart and blood vessel conditions, learning difficulties, and pain.
About one in ten individuals with NF1 (vs 1 in 100,000 people in the general population) will develop in their lifetimes a malignant peripheral nerve sheath tumor (MPNST), a very aggressive type of cancer that generally appears in the arms and legs.
These tumors are challenging to discover and diagnose as they develop in elastic tissues (meaning they can shift position or remain hidden), grow very quickly, and can spread extensively to other parts of the body through nerve tissue.
The best chance for children battling MPNST is timely surgery. If the tumor spreads to other organs, the 5-year survival rate is less than 30%.
Dr. Brigitte Widemann, Chief of the Pediatric Oncology Branch at the National Cancer Institute shares her experience treating MPNST: ”I’ve seen many children where a benign tumor rapidly turned into a malignant one. It’s devastating to witness.”
Professionals like Dr. Widemann feel the emotional impact of these malignancies, but parents experience it more intensely.
Parents Absorb Their Child’s Pain
Rachel Wyatt is a genetic counselor helping families of children with NF1 at University Hospital at UT Health San Antonio. One of her main goals, as she explains, is to provide comfort.
”In every genetic counseling appointment, it’s imperative to inform parents that this isn’t something they did or didn’t do.”
Crystal Robinson is a pediatric psychologist who works with Wyatt. She explains the turmoil parents feel.
”Families grieve after a diagnosis. In a way, parents mourn the loss of a healthy childhood for their child. They may feel guilty and helpless, and this occurs in parallel to their child’s care journey.”
Ericka’s daughter, Norah, is a five-year-old living with NF. She recalls how she felt when she learned about her daughter’s diagnosis: ”The information was a lot to take in while keeping our emotions on hold.”
Since Shane Smith’s son was diagnosed with NF1, he has tried to learn as much as possible about the condition. However, uncertainty still overwhelms him: ”It’s so scary as a parent. There are so many unknowns all the time. You can never know everything. There’s this desire to put them in as much of a cocoon as you can to protect them.”
Parents internalize part of their children’s pain, a natural reaction, but what’s the cost of everyday trauma for care professionals?
Trauma and the Helping Professional
Trauma has contagious properties. Its emotional and psychological symptoms can manifest indirectly in individuals who help people dealing with traumatic events.
Pediatric oncologists are trained to cope with emotionally charged situations, and they excel at them. But they are still humans.
34% of American oncologists report depersonalization symptoms (feeling detached), a common response to trauma.
Sympathizing with their patients’ suffering can expose oncologists to secondary traumatic stress, a phenomenon where indirect exposure to trauma (caring for a child with cancer) can result in developing symptoms that resemble post-traumatic stress disorder (PTSD), like anger, cynicism, and hopelessness.
Studies found that amid the Covid-19 pandemic, 41% of healthcare staff experienced secondary trauma.
But other reasons also explain why oncologists feel the way they do.
More Than Just Long Hours
Oncologists have 60-hour average work weeks, with studies suggesting that these long hours contribute to burnout and put them at risk of multiple health effects.
Burnout is more than feeling overwhelmed and exhausted. It includes the overarching belief that your contribution cannot change things for the better.
Exhaustion, in all its facets (mental, physical, emotional, and occupational) can drain a person from the capacity to connect with their own emotions, potentially leading to compassion fatigue, a condition where a normally caring person feels dejected, unable to express empathy, and struggling to remain present with their patients.
Early research on compassion fatigue described it as the ”cost of caring.”
Compassion fatigue can be misinterpreted as a ”lack of care.” Quite the opposite. The concept has evolved and now it’s viewed as a consequence of two different challenges that converge in oncology care: secondary traumatic stress and burnout.
With only 24% of oncologists reporting being satisfied with their work-life balance, it’s clear that something has to change. Here are some ideas.
What to do
Interventions that protect the sanctity of work-life boundaries have proven effective at minimizing the negative consequences of burnout and secondary trauma.
Technologies and process improvements that help oncologists reduce their hours, like facilitating payor preauthorizations and approval processes, optimizing documentation handling, and improving coordination of care teams should be prioritized.
Finding ways to help oncologists spend more time with patients will directly impact their well-being. Why?
What brings professional satisfaction and personal fulfillment to oncologists, according to them, are meaningful care moments (like advising patients and their families), rewarding outcomes (seeing how treatment improves a child’s quality of life), and the power of community (positive experiences with colleagues).
The Joy of Serving Others
When medical professionals pursue a career in oncology care, the underlying force propelling their choice is a desire to help others.
”In pediatric oncology, you develop very close relationships with families. I enjoy that aspect immensely,” explains Dr. Brigitte Widemann.
Caring too much about children battling MPNST is not a burden for oncology professionals.
“Parents have your phone number. Your email. They can follow up. It’s a real relationship,” affirms Crystal Robinson.
When oncologists are surrounded by an environment that promotes healthy work-life boundaries, the damaging consequences of burnout and secondary trauma are less likely to manifest, as Robinson concludes:
”It’s restorative for us as providers, being a lighthouse for families that didn’t know where to turn and now feel secure knowing we’re committed to giving them high-quality care.’’
