Discussion
Prevention and control of symptoms of progressive pediatric brain tumors (seizures, vomiting, anxiety, neurologic changes, hiccups, loss of function) can be difficult to achieve. To provide the best palliation, we suggest that use of continuous-infusion medications can maintain and often improve patients' symptoms and quality of life during their PC/EOL care trajectory. Combining this symptom-control intervention with routine follow-up telephone calls and home visits by an APN may help families navigate the EOL process that is known to be difficult.
Specifically, our institution's intervention encompassed administration of midazolam as a continuous-infusion medication in the home setting for the purpose of palliation of neurologic decline, including intractable hiccups, anxiety, vomiting, and seizures, which are commonly experienced by a child with any type of fatal brain tumor. The literature suggests the use of midazolam for status epilepticus symptoms among patients with brain tumors and for palliative sedation during EOL care among children with brain tumors. To our knowledge, little is reported on the use of this medication for nonsedated children with a brain tumor and EOL symptoms, which may include vomiting, seizures, neurologic decline, hiccups, and anxiety. In our experience, the children actually become more alert, and parents often conveyed a perception that their child displayed improved symptom control and enhanced quality of life while receiving midazolam during EOL care.
The use of midazolam can be spearheaded by the APN in our setting. The APN role in hospice has been shown to be integral and sustainable and to improve quality of life. Similarly, the APN guides the symptom control for this specific population of progressive pediatric brain tumors. Medication guidelines were established with starting doses based on previous opioid use (Table 2). These guidelines were based on the attending physician's initial aggressive treatment of children dying of brain tumors. The guidelines are based on dosages from common pharmacology texts but are extremely aggressive to provide effective symptom management quickly. Standardized orders (ie, inpatient, outpatient clinic, home care, and hospice services) for starting doses and escalation guidelines have also been created by the APN (Figure). The APN completes the standardized orders based on the starting dose protocol and then reviews these orders with the physician. Then the primary nurse or APN coordinates the outpatient hospice referral. Communication with the hospice nurse is initiated by the APN. The APN thus works as a liaison between the hospice nurse, hospice pharmacy, local physician, and family by advocating for the use of intravenous medications and by teaching that the two medications are compatible. The APN counsels the family and hospice nurse through telephone calls and home visits if the patient is within a 1-hour radius from the tertiary care center. In addition, APNs who have previous experience caring for pediatric patients in the hospital setting and advanced training in pediatric hospice care guidelines (eg, End of Life Nursing Education Consortium) are especially positioned to provide comprehensive care to children receiving hospice care in the community.
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Figure.
Hydromorphone/midazolam home care orders for palliative care.
In conclusion, as the EOL care trajectory evolves for pediatric patients with cancer effective prevention and control of the patient's symptoms during home care will become increasingly warranted. We purport that a peaceful death for children with brain tumors can be achieved without the presence of unpleasant symptoms, such as seizures, vomiting, hiccups, or anxiety, at home with the use of an ongoing continuous infusion of benzodiazepines and narcotics along with support and education to parents and hospice care staff that can be provided by a neurooncology APN. Future research should include evaluation of symptoms associated with pediatric brain tumors and responses to midazolam interventions, using instruments that have established psychometric properties. A prospective, randomized-clinical trial is recommended to evaluate symptom management, dose ranges, and parent and patient perceptions of the use of midazolam infusions at multiple clinical sites to confirm our experience that the often traumatic experience of a child dying of a brain tumor can be made peaceful with the support of effective symptom control measures.