Recent research undertaken by St. Jude’s Children’s Research Hospital was the first to explore symptom management and palliative care in children recently diagnosed with cancer. The study highlighted some distressing findings, such as majority of patients reported nausea, pain, loss of appetite, depression and other symptoms from time of diagnosis and early treatment. Irrespective of these disturbing symptoms, the research found that palliative care was still solely recommended for end-of-life care instead of being integrated from the time of diagnosis to manage symptoms and promote quality of life.
“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 paediatric oncologists, to accept symptoms and side effects of treatment as normal,” writes Jennifer Mack, MD, PHD. Mack is a paediatric oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, she has also completed a fellowship in palliative care.
One of the questions asked by researchers was, ‘would parents and patients assume poor prognosis if offered palliative care at diagnosis?’ Research showed that 90 per cent would be open to early palliative care and 40 per cent believed it would have eased their suffering. “These findings should be a wake-up call to paediatric 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,” said Mack.
Mack recommends that paediatric oncologists need to gauge from the beginning what quality of life means to the child and family, and continue this discussion throughout the course of the treatment. Quality of life could mean different things to different families, it could mean symptom management, school attendance, avoiding unnecessary hospitalization, or even maintaining friendships. “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.”
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