When a child is diagnosed with cancer, overwhelmed parents and patients are often laser-focused on the path to cure. Even though parents do not welcome pain or discomfort for their child, they may feel that symptoms are a necessary cost of curative care. Likewise, it is easy for us, as pediatric oncologists, to accept symptoms and side effects of treatment as normal. Important new research challenges this assumption and challenges pediatric oncologists to work harder to ease children's suffering and help families maintain quality of life from the very beginning of the cancer journey.
Recent research from St. Jude's Children's Research Hospital, published in JAMA Oncology, is the first to explore symptom management and palliative care in newly diagnosed children with cancer. Its findings are striking. Despite recent advances in controlling nausea and easing other side effects of treatment, suffering is the norm for many new cancer patients. An overwhelming majority of patients (and parents) surveyed reported nausea, pain, loss of appetite and other symptoms from diagnosis and early treatment, and have experienced depression. A significant number labeled their suffering as severe.
Equally striking are researchers' findings on palliative care. Too often, popular assumption relegates palliative care solely to end-of-life care, rather than recognizing its over-arching and evolving mission of managing symptoms and promoting quality of life for seriously ill patients, including those who may well ultimately be cured of their disease.
Given these assumptions, researchers asked, would parents and patients assume a poor prognosis if offered palliative care at diagnosis? The answer, they found, is a resounding no. More than 90 percent were open to early palliative care, and 40 percent believed it would have eased their suffering.
Taken together, as I indicated in my editorial on the research, these findings should be a wake-up call to pediatric oncologists. Not only must we do a better job of recognizing and addressing patients' suffering from the outset of treatment, but we must also update our understanding of palliative care and adjust our timing to reflect patients' and families' early interest in its benefits.
Pediatric oncologists can start by being aware that newly diagnosed patients may be suffering more than we realized. The researchers found that more than half of patients suffered from symptoms such as nausea, pain, anorexia, anxiety, and constipation during their first month after diagnosis, and nearly half had symptoms of depression. Pediatric oncology clinicians should prioritize assessment and management of all of these symptoms, just as they do treatment of the cancer itself.
In addition, we should be asking from the outset what quality of life means to the patient and family and continue these conversations throughout the course of treatment. Symptom management, of course, is part of the equation. So are school attendance and maintaining friendships and avoiding unnecessary hospitalizations.
Just as pediatric oncologists have a fundamental understanding of heart and kidney function and infectious disease, we also need to acquire a fundamental understanding of palliative care. Just as we know when a patient's needs are complex enough to require referral to a cardiologist or nephrologist or infectious disease specialist, we also need to know when a referral to a palliative care or related specialist is warranted.
If we recognize signs of depression, we can refer to a psychologist or psychiatrist. If we think a child will benefit from learning mind-body techniques to control symptoms, we can refer to a specialist. If a family is overwhelmed by stress, we can alert their psychosocial clinician. If we run out of tools to ease a patient's pain or nausea, a palliative care specialist may know additional strategies.
The new research alerts us to patients' suffering from diagnosis and their openness to early palliative care. Our job now is to incorporate these findings in our practice.
Jennifer Mack, MD, MPH, is a pediatric oncologist at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. She also completed a fellowship in palliative care.