At what point in a pediatric patient's cancer treatment should palliative care teams become involved in their care?
When do you consult palliative care for your pediatric cancer patients?
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I believe palliative care involvement for newly diagnosed children with cancer should be the rule, not the exception. The concept of early involvement of palliative care teams for newly diagnosed patients with cancer stems largely from a landmark paper in the New England Journal of Medicine 10 years ago1. In a randomized trial of early palliative care involvement vs standard of care for adults with advanced lung cancer, those patients who received early and ongoing support from palliative care teams were less depressed, had a better quality of life, had less aggressive therapies, and lived longer. A spate of other studies followed, culminating in a policy statement from the American Society of Clinical Oncology (ASCO) endorsing early palliative care involvement for adults with advanced cancer2.
But adults are not children, and the cure rates for children with cancer are significantly higher. So is there a role for early palliative care involvement for children with cancer? Yes! Pediatric palliative care is not just end-of-life care. It is about supporting children and their families from the time of diagnosis throughout the course of their disease, whether it ends in cure or death. The palliative care team can assist with symptom management every step of the way, ensure consistency and clarity of communication, and provide an extra layer of support. Importantly, once a relationship is established with the team, it can be an invaluable support in times of crisis (complications of therapy, relapse, and end-of-life care). As in the adult literature, early pediatric palliative care involvement in the care of children with cancer is amply supported and feasible. 3,4,5
At our center, we have negotiated automatic consultation triggers for children with newly diagnosed high-risk malignancies, children who have relapsed, and children undergoing hematopoietic transplantation. In addition, we encourage palliative care involvement for all newly diagnosed children but leave this to the discretion of the pediatric hematologist/oncologist. Pediatric oncologists have sometimes balked at early palliative care involvement (particularly how to explain their involvement to families). However, when it is properly framed as providing an additional layer of support, it is quite well-received by parents and children. 4,5
A key to successful palliative care involvement is respect for the primacy of the pediatric oncology-patient-family relationship. Recommendations on symptom management should be reviewed with the primary team before being implemented. Discussion of goals of care is a particularly sensitive topic; just how, when, and whether they should be addressed should be carefully thought out in conjunction with the primary oncologist and her/his team.
While I agree with Dr. @Dr. First Last about the values of early palliative care consultations, I do not believe in triggers to a consultation. I believe that the patients described in the article should be considered for consultation. There are times when consultation should be delayed.
Although the concept of starting at diagnosis is sound, on a practical level almost all palliative care programs do not or will not have sufficient staff in the foreseeable future to follow all patients. Furthermore, checking in once, in the beginning, is not a very useful use of personnel if the palliative care team cannot follow up on a regular enough basis to maintain the relationship. Thus, seems to me that all high-risk patients should be referred early, and more favorable prognosis patients only if particular family needs make them high risk.