Do Not Resuscitate and the Terminally Ill Child

Goals of Care

Ideally, conversations regarding goals of care start early in the cancer journey and are revisited periodically as the treatment and disease course progresses, and goals of care change. This is important all throughout the journey but is particularly crucial as the patient becomes terminal. These conversations must elicit the child’s/parents’ values, hopes, dreams, and fears, as well as assess their physical and emotional suffering. By carefully weighing the expected results of treatment and side effects against the child’s/parents’ values and goals, a picture begins to emerge that will help families make decisions regarding their care and help the physician to understand the family’s decisions and to align the treatment with their goals.

Goals of care can be different for different families and children, and they will also change over time, depending on prognosis. Initially, the goal is most often for cure and thus treatment will be disease-directed and cure-oriented. Treatment regimens may be intense with the potential for high toxicity. As the disease advances, the goal may change to slowing the cancer progression to prolong life and increase quality of life (QoL). At this point the treatment will still be disease-directed, but it may be limited to treatments that allow for a good QoL and do not cause significant toxicity. Once a child enters a terminal stage, the goal may shift to providing comfort and minimizing suffering. Treatments, if desired, would ideally have little to no toxicity and allow for maximum comfort and QoL.

There are a few common goals that arise as children approach the end of life: minimizing physical and emotional suffering, enhancing QoL, dying peacefully, and leaving a legacy. Palliative care physicians can help families achieve these goals, as well as align any remaining medical treatment with these goals. Table 50.1 shows a list of possible questions that may facilitate these difficult conversations.

Concurrent Care

Unique to pediatrics is the concept of concurrent care; this type of care allows children to continue receiving cancer treatment while enrolled in a hospice near the end of life. This is not the case for adults; they must stop all disease-directed treatment and even stop seeing their primary oncologist once they enroll in a hospice. Concurrent care allows for a gentle transition between the oncology treatment team and the palliative care/hospice team. Palliative care, which is an integrated, interdisciplinary team-based, holistic approach to address symptoms in seriously ill children, can also help to facilitate complex medical decision-making with patients, their families, and their primary medical teams. Patients can continue to see their oncologist until they are no longer physically able. This may be very helpful to families, as there is often a strong bond with the physician who has been on this journey with them. Concurrent care allows time for the hospice/palliative care team to integrate themselves and build a rapport with families before having to discuss very difficult topics such as “do not resuscitate” (DNR) and end of life. Palliative care is ideally integrated early in the disease process so that the full benefits, including impeccable symptom control, truly partnered medical decision-making, advance care planning, and optimal end-of-life care. Furthermore, opportunities for legacy building and bereavement support are viewed as a thread of continuity from the time of initial contact to the present, rather than as the sudden introduction of a team of strangers at the end of an illness.

Although palliative care services are available in most academic children’s hospitals in the United States, primary (basic symptom management and communication skills) and secondary (advanced symptom management, facilitation of complex medical decision-making, and management of complicated family dynamics) services are available to only a fraction of the 21 million children worldwide with serious diseases. Thus it is important that all physicians develop primary palliative care skills to care for terminal children and their families.