Symptom Management Series

2.3 ANCC Contact Hours

Neurologic Symptoms in Pediatric Brain Tumor Patients on Hospice

Continuous-Infusion Midazolam
Jennifer R. Madden, MSN, RN, CPNP Nicholas K. Foreman, MD Verna L. Hendricks-Ferguson, PhD, RN

Children dying of a brain tumor often experience unpredictable and poorly controlled symptoms (vomiting, seizures, anxiety, loss of function, and neurologic changes). Ineffective control of symptoms can cause physical and emotional discomfort for affected children. In this case study, we will describe (a) a palliative care (PC) intervention used to manage target symptoms experienced by a 6-year-old male pediatric patient with a progressive brain tumor, (b) the steps used by a neurooncology team to plan and administer a continuous infusion of midazolam to control the target symptoms for this patient in the home setting, and (c) the role of an advanced practice nurse during the home care management of this patients symptoms. The PC intervention encompassed administration of continuous-infusion medications to manage commonly identified symptoms among children diagnosed with a progressive brain tumor. We propose that use of an effective symptom-control intervention has the potential to decrease suffering, to promote quality of life among children dying of a brain tumor, and to potentially foster a peaceful death in the affected childs home.

KEY WORDS
anxiety, brain tumors, hiccups, palliative care, pediatrics, seizures, vomiting

Jennifer R. Madden, MSN, RN, CPNP, is pediatric nurse practitioner in NeuroOncology, Center for Cancer and Blood Disorders, Childrens Hospital Colorado, Aurora, and associate professor, Pediatrics, University of Colorado, Denver. Verna L. Hendricks-Ferguson, PhD, RN, is associate professor, School of Nursing, Saint Louis University, Missouri. Nicholas K. Foreman, MD, is director, NeuroOncology, Center for Cancer and Blood Disorders, Childrens Hospital Colorado, Aurora, and professor, Pediatrics, University of Colorado, Denver. Address correspondence to Jennifer R. Madden, MSN, RN, CPNP, NeuroOncology, Childrens Hospital Colorado, 13123 E 16th Ave, B115, Aurora, CO 80045 (jennifer.madden@childrenscolorado.org). The authors have no conflicts of interest to disclose. DOI: 10.1097/NJH.0b013e3182a57212

ediatric brain tumors are the most common solid tumor occurring in childhood, accounting for 16.6% to 21.7% of childhood cancers in the United States.1 In addition, the occurrence of pediatric brain tumors in the United States is 4.9 in 100000 children,2 in Europe is 2.99 in 100000 children,3 and in Asia is 2.23 in 100000 children.3 Although the overall prognosis of childhood cancer has improved to the 75% cure rate, a large number of children still die of incurable brain tumors annually.4 Currently, pediatric brain tumors are recognized as the leading cause of cancerrelated morbidity and mortality among children.4 Unfortunately, many parents have reported significant emotional distress regarding ineffective symptom control during end-of-life (EOL) care for children dying of a brain tumor.5 In a classic and comprehensive study by Goldman et al,6 the prevalence of commonly experienced symptoms among children with a progressive brain tumor during EOL care and our case study included headache pain (84%), vomiting (64.4 %), seizures (39%), anxiety (37.3 %), and deterioration in physical function (89%-93%). In addition, the presence of hiccups is known to be a sign of brainstem dysfunction and has been reported in a case study focused on palliative care (PC) and EOL care for a school-age child with a progressive brain tumor.7 For this article, the authors chose to focus on a case presentation that includes a tailored symptom-management intervention to control a target group of symptoms (vomiting, seizures, anxiety, physical function, and hiccups) associated with neurologic decline that are frequently experienced by children diagnosed with a brain tumor and a poor prognosis. The advanced practice nurse (APN) is an integral part of this symptom-management intervention. Vomiting is recognized as the second most common symptom after headache in children with pediatric brain tumors.8 The vomiting center is located in the medulla of the brain and is often affected by the tumor location. In addition, the vomiting reflex can occur in response to chemoreceptor triggers. Many oral and rectal antiemetic medications are ineffective in controlling vomiting among patients with advanced cancer.9,10 The authors of this article have observed clinically that intractable seizures and

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vomiting, associated with progressive metastatic brain tumors in children, are almost impossible to effectively control with oral or rectal administration of antiemetic medications. Seizures are recognized as the third most common symptom in all children diagnosed with a pediatric type of brain tumor.1 Seizures occur in 13% to 15% of all children with a pediatric brain tumor, and the occurrences of seizures may coincide with irreversible tumor progression during PC/ EOL care.11 Hence, effective control of seizures during PC/ EOL care of a child with a progressive brain tumor and a poor prognosis is expected to be very challenging. Prevention of the reoccurrence of seizures during PC/EOL care of affected children is also a concern of health care providers because witnessing a child have a seizure can be very stressful to the childs parents.11 Neurologic decline, loss of function, and anxiety are symptoms commonly recognized among patients who are dying of any type of cancer.12-14 Specifically in children with brain tumors, the loss of physical function often leads to emotional distress and may manifest as anxiety. Pritchard et al15 studied quality of life (including anxiety) in parents of a dying child. Parents surveyed indicated that the most helpful care in the last week of life of their child dying of cancer was to give medications for anxiety and pain.15 Other symptoms of neurologic decline depend on the location of the tumor in the brain. In the present case study, the location is the brain stem; therefore, the childs symptoms included intractable hiccups, progressive hemiparesis, and facial nerve palsy. The most common cause of hiccups is gastrointestinal; however, the precise cause of intractable hiccups (ie, hiccups described as lasting 92 months) during PC has been reported as idiopathic or of unknown etiology.16 Additionally reported is that (a) there are no evidence-based approaches to treat intractable hiccups; (b) untreated intractable hiccups may have a profound impact on quality of life, potentially leading to a decline in motor and cognitive function and to fatigue and anxiety; and (c) strategies to treat intractable hiccups should be individualized and planned on a case-by-case basis, with consideration to the individuals coexisting symptoms. The authors of this article report their clinical experience with administration of a tailored symptom-control intervention, specifically, (a) continuous infusion of midazolam during PC in the home setting of children with a brain tumor and a poor prognosis and (b) APN case management. An APN was critical in initiating the intervention and then providing continuity with follow-up care by telephone. This intervention was used to control and manage the multiple symptoms that are commonly experienced among children with brain tumors. The authors of this article have defined these symptoms to include vomiting, intractable seizures, anxiety, and neurologic changes. The neurologic changes in our patient were intractable hiccups, progressive hemiparesis, and facial nerve palsy.
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One major benefit of administering a continuous infusion of midazolam in the home versus in the hospital setting is that delivery of care in the home supports many parents preference that their dying children receive EOL care in their home.17 Investigators investigating place of death among children with cancer have reported that there are more children dying of cancer at home (52%) who received a PC referral than children who die in the hospital setting (43%) who did not receive a PC referral.17 In contrast, in one study, a very high proportion of children with a noncancer illness (77.7%) who had not received a PC referral died in a pediatric intensive care.17 In many hospital centers, the symptoms of children dying of brain tumors are not treated aggressively with continuous-infusion midazolam because it is commonly known as a sedative and is used primarily in the intensive care setting.18 An APN who is knowledgeable about symptom management and the adverse effects of continuous-infusion midazolam is integral to helping families and hospice programs feel comfortable at home. The following case report describes a pediatric patient with a progressive brain tumor and poorly controlled symptoms and how our neurooncology team planned and administered a continuous infusion of midazolam in the home setting.

CASE PRESENTATION
A 4-year-old male patient diagnosed with a brainstem ganglioglioma (ie, a type of low-grade astrocytoma) is the focus of our report of a pediatric case study. This pediatric patient resided in a rural community with his parents. Initially, the patient presented to the local emergency department with report of a new brain tumor revealed using a magnetic resonance imaging (MRI) evaluation. This case presentation will include an intervention to specific symptoms associated with the diagnosis of a pediatric brain tumor and a poor prognosis along with the clinical challenges related to controlling these symptoms.

Patients History Before Diagnosis Was Confirmed

The male patients mother reported that when her son was about 22 years of age, other parents and teachers at his preschool reported that he had been having difficulty with some gross motor skills (eg, he could not stand on one foot very well). The patients mother reported that her son could not get dressed without sitting down. In addition, the mother indicated that her son had developed some problems with speech (dysarthria). Over about 12 months, he was receiving outpatient supportive therapies (ie, occupational and speech therapy) for his speech problems. The mother then observed that her son had shown decreased fine motor function (for about 6 months) that was more involved on the left side of his body compared with the right side.
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Approximately 6 months before the confirmed diagnosis of this patients brain tumor, an MRI evaluation to rule out a brain neoplasm was recommended during a neurology consultation. There was a delay in diagnosis because the childs parents chose to have their child continue receiving his outpatient supportive therapies instead of an MRI evaluation. Although some of the childs physical function improved (eg, learned to ride a bicycle, improved coordination with baseball), he continued to have poor control of his left side. After approximately 6 months, the parents agreed to the previous medical recommendation for their child to receive an MRI evaluation to rule out a brain tumor. the local physician and family when receiving chemotherapy locally. One month after the completion of chemotherapy, the patient was admitted to the hospital with neurologic decline and the following brainstem symptoms: Progressive hemiparesis, hiccupping, and headaches. A course of dexamethasone effectively controlled these symptoms. A repeat MRI revealed tumor progression and brainstem edema. The patient was immediately started on focal radiation along with daily carboplatin as a radiosensitizer. Because of the change in enhancement characteristics and clinical deterioration, the patients type of tumor was modified to a highgrade glioma. Again, the APN provided daily clinic visits during the chemotherapy and was well acquainted with the patients symptom management during aggressive therapy. Three months after the start of radiation, the patient presented again with neurologic decline and symptoms of progressive hemiparesis and hiccups. The patients subsequent MRI evaluation revealed significant changes that were consistent with either radiation necrosis or a progressive tumor. Subsequently, the patient was started on bevacizumab every 2 weeks. Three months later, the patient was emergently intubated for respiratory depression, thought to be secondary to pneumonia. The APN accompanied the attending physician to the intensive care unit to discuss current neurologic status and acknowledge the mothers feelings that her son was suffering with decreasing hope of cure. Two weeks later, the patient presented with symptoms indicating a neurologic decline. An MRI evaluation revealed the presence of hydrocephalus along with increased tumor progression. A ventriculoperitoneal shunt was then placed. The family agreed to a do not resuscitate status, and the patient was discharged home to receive hospice care. The EOL discussion included a review of the dying process by the attending physician. The APN was also present and could then later provide clinical reassurance to the parents by telephone after witnessing the physicians advice (often not completely understood by families under duress). After receiving the ventriculoperitoneal shunt, the patients symptoms improved, and he was classified as being symptom free, except for treatment with gabapentin for neuropathic pain control.

History After Diagnosis Was Confirmed

After the MRI confirmed the presence of a large brainstem tumor, the patient was started on dexamethasone to safely transfer by flight to a tertiary health care center. During his initial physical evaluation at our center, the history and assessment revealed that the patient had occasional complaints of headache and polydipsia. The parents reported during the patients initial assessment that he had not displayed any fever, nausea, vomiting, weight loss, vision changes, choking episodes, pneumonia, or polyuria. The patients MRI results were significant for an infiltrating, heterogeneously enhancing neoplasm involving the upper cervical spinal cord and medulla extending into the posterior pons, cerebellar peduncles, and cerebellum. The patients MRI evaluation of the spine area was negative. A biopsy revealed ganglioglioma, a World Health Organization grade I type of brain tumor. The pathology was notable for a highly inflammatory low-grade glial neoplasm punctuated by numerous dysmorphic/neoplastic neurons. The immunohistochemistry argued strongly against these being normal neurons entrapped in an infiltrating glioma. In addition, the cell division rate was low (less than 3%), also arguing against a high-grade glioma (or diffuse infiltrating pontine glioma). Subsequently, the patient had a central line placed and was started on weekly chemotherapy with carboplatin and vincristine for 12 months. Vincristine was discontinued when he experienced persistent peripheral neuropathy. Because the patient received most of the ordered chemotherapy at a local health care clinic near the patients home (approximately 5 hours from the tertiary center), the APN provided guidance to the local physician regarding chemotherapy toxicity and supportive care. The patient continued to receive supportive therapies: Physical therapy, occupational therapy, and speech therapy. Three of the patients symptoms of neurologic changes (ie, hemiparesis, cranial nerve palsies, and peripheral neuropathy) were stabilized and viewed as partial control; however, these symptoms did not completely disappear. During his initial treatment, the patient and family established a strong relationship with the APN who provided clinical care and case management both at the tertiary center and through telephone calls to Journal of Hospice & Palliative Nursing

History of Treatment During Home Care

After 1 week at home, the patient showed reoccurrence of neurologic progression with symptoms of progressive hiccups, sensation changes in the childs face, anxiety, and twitching as reported to the APN by the patients mother during weekly telephone follow up. Progressive neurologic decline is a sign of impending death, and patients dying of cancer are known to have anxiety; therefore, a continuous infusion of midazolam was initiated by the APN using standard orders through the local oncologist and hospice.11 Extensive education was provided to the patients pharmacy, hospice nurses, and family by the neurooncology APN to
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TABLE 1 Examples of Advanced Practice Nurse (APN) Management of Palliative Care by

Telephone in Medical Record

Call 1 TC to MOC for update. Pt going to school, has tolerated 3 full weeks of 3 h/d of school. MOC giving 2 mg decadron once a week; when wears off, seems more fatigued. Still on 150 2g/h of midazolam continuous infusion; MOC doing all port needle changes, cassette changes. Hospice RN visiting once a week. Eating and drinking well without choking. Baclofen 10 mg BID, Bisacodyl daily, suppository weekly controlling constipation. Occasional (once a week) pain medications for left ear itching (neuropathic). Will continue telephone f/u as needed. Call 2 Can bear weight on left foot, not on right at all. Can sit with minimal assistance. Eating many different foods; going to school 3 d/wk. No seizures, no choking, no breathing abnormalities. On midazolam 150 2g/h continuous infusion; no dexamethasone this week. Vomits when gets suppository for constipation. Vomit is dark black every time. D/w MDVcontinue to watch and follow. Call 3 TC from MOC. Pt has been slightly worse the last few days. No real neurologic change, but not quite as well as he was. MOC asking about increasing midazolam. Discussed pros and cons, maybe try increasing from 150 to 175 2g/h (smaller interval). No vomiting, seizures, but O2 sat has been running lower. Will continue to follow. Call 4 TC from MOC. Pt with new-onset neurologic changes including breathing changes and facial itching/pain. Dexamethasone once a week really making a big difference in symptoms. MOC to try increasing midazolam to 175 from 150 2g/h to see if it helps. She does not feel IV hydromorphone needed. Has oral oxycodone and oral hydromorphone PRN. Telephone f/u tomorrow to increase more if not improved. New order sent to hospice RN. Call 5 Multiple telephone calls from MOC and hospice RN. Pts lungs continue with increased secretions and crackles. Vomited overnight. Increased itching and facial pain. Increased midazolam to 2 mg/hr at 7:30 AM. Oral hydromorphone as needed. Sleeping since increased midazolam; lungs still wet; O2 sats 60-70 when off O2.
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TABLE 1 Examples of Advanced Practice Nurse (APN) Management of Palliative Care by

Telephone in Medical Record, Continued

Plan. O2 for comfort, only check O2 sats for MOC comfort. Increase midazolam for any vomiting and agitation. Continue oral hydromorphone PRN pain; Rx sent to hospice. Change to IV hydromorphone if pain uncontrolled. Discussed dying process; may not wake up if this is tumor progression. Call 6 TC from MOC. Pt with 2 seizures in 3 days, increased facial pain, right leg pain, increased global weakness; O2 sat 50%-60% when not on O2. Taking oral hydromorphone every 4 hours, but breaking through. On midazolam 2 mg/hr continuous infusion. TC to hospice RN. She agrees, pt with significant decline in last week. Color changes in face as well. Plan. Increase midazolam to 2.3 mg/hr. Start hydromorphone 100 2g/h IV (very low dose because last time tried 250 2g/h and rendered him somnolent). Orders sent to hospice pharmacy. TC to MOC. Call 7 Pt better on atropine and gabapentin. Lungs clear, face pain resolved. Able to go to school once last week, 2 hours today. MOC wanting to travel to family to Pennsylvania. Discussed pros/cons. Social work consult for financial resources. POC wants to donate Pts tumor to neurooncology laboratory. Call 8 TC to MOC. Pt has enjoyed his time in Pennsylvania. Head pain last night and agitation. Given hydromorphone, oxycodone without relief, and finally calmed with ativan. Now sleeping ever since. On continuous-infusion midazolam 280 2g/h. Discussed plan for flying home tomorrow. Taking dexamethasone 1 mg daily to get through trip. Call 9 TC from MOC at 10
PM.

Pt passed away peacefully of disease at home on hospice that evening. Hospice RN also called the neurooncologist to communicate and certify the time of death.
Abbreviations: APN, advanced practice nurse; BID, by mouth; d/w, discussed with; f/u, follow-up; IV, intravenous; MD, physician; MOC, mother of child; O2 sat, oxygen saturation; POC, parents of child; PRN, as needed; Pt, patient; RN, registered nurse; TC, telephone call; Rx, prescribed.

ensure consistent and safe delivery of the midazolam via a continuous infusion using a home-care pump. Education was provided that included how to access and change the needle on the implanted venous-access device for Journal of Hospice & Palliative Nursing

weekly needle changes. The mother was very receptive to the provided education and appeared more comfortable with the care of the implanted device than were the adult hospice nurses.
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TABLE 2 Palliative Medications (End-of-Life Care Only), Adapted From Standardized

Dosing for the Approximate Weight of the Patienta

Name
Dexamethasone

Type
Steroids

Directions

Age-Appropriate Dosing

Dosage Forms

5-d course for G5 y, 2 mg TID breakthrough pain. 95 y, 4 mg TID

Oral pain control

Acetaminophen with codeine

G8 y: 1 mg codeine/kg Q 4 h PRN 98 y: 10 mg codeine Q 2 h PRN

ElixirV12 mg/5 mL; tabletsV10 mg

Morphine

G3 y: 1-2 mg PO Q 2-4 h PRN

Tablets: immediate or sustained releaseV15, 30 mg Solution: 20 mg/mL, 10 mg/5 mL, 50 mg/mL

3-8 y: 3-5 mg PO Q 2-4 h PRN 98 y: 5-10 mg PO Q 2-4 h PRN Intravenous G3 y: 50 2g/h Hydromorphone If not effective, (continuous infusion) double the dose. If still not effective, double the dose again. 3-8 y: 250 2g/h If still not effective, increase 3 by 20%. If still not effective, contact MD. There is no upper limit in dosing. 98 y: 500 2g/h

Dispense 10 000 mg

Start IV medications early for raised pressure.

Some hospice programs have difficulty providing small doses on pump; may require physician consultation

Narcotics and midazolam are compatible in the same IV line. Morphine (continuous infusion)

Not on oral morphine G3 y: 0.5 mg/h 3-8 y: 1 mg/h 98 y: 2.5 mg/h On oral morphine for at least 1 wk G3 y: 1 mg/h 3-8 y: 2.5 mg/h 98 y: 5 mg/h

Dispense 10 000 mg

Midazolam Double the dose (continuous infusion) for seizures; subsequently, for seizures, increase 3 by 20%.

G3 y: 0.75 mg/h

Dispense 10 000 mg

(continues)

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TABLE 2 Palliative Medications (End-of-Life Care Only), Adapted From Standardized

Dosing for the Approximate Weight of the Patienta, Continued

Name
Indicated for supratentorial tumors or metastastatic disease. Also used for intractable vomiting.

Type

Directions
If patient is oversedated but vital signs are stable, do not decrease dosage. Sedating effects should lessen with time. For oral secretions.

Age-Appropriate Dosing
3-8 y: 1.5 mg/h

Dosage Forms

98 y: 3 mg/h

Transdermal

Scopolamine patch

1 disc (1.5%) behind the ear or shoulder every 72 h for secretions Apply patch to intact skin to cover painful area. Change patch every 12 h.

Lidocaine patch (5%)

For numbness or tingling.

Do not apply to broken skin. Remove from skin if burning occurs.

Abbreviations: IV, intravenous; MD, physician; PO, orally; PRN, as needed; TID, 3 times a day. a Lexicomp Online (2013).

The patients symptoms of neurologic decline, including intractable hiccups, anxiety, and potential symptoms of seizures and vomiting, were well controlled at home using a continuous infusion of midazolam. The APN continued to make routine follow-up telephone calls with the mother during home care and with the hospice nurses. Communication with the mother and hospice nurses was documented in the childs medical record (Table 1). The patient showed physical signs to support an enhanced level of normalcy and quality of life during home care. He became more alert and was able to return to school for half days with a small infusion pump in his backpack. Dose escalations were easily made in the continuous-infusion medication by the family and hospice nurses without traveling the long distance to the physicians office. The patient and family were able to make a hoped-for plane trip across the country to visit extended family with the ordered medications infusing. A medical letter was provided by the APN to authorize travel with a controlled medication. Unfortunately, the patients symptoms slowly progressed over time, and he eventually slipped into a coma. He died peacefully at home 5 months after the continuous-infusion medication was started. He remained active and alert for almost the entire 5 months on the intravenous medication and became comatose less than 5 days before death. This case study illustrates 1 of approximately 200 cases from our center in which the parents have expressed that their child died peacefully at home with the administration of continuousinfusion medications as palliation for progressive symptoms Journal of Hospice & Palliative Nursing

of a brain tumor with the guidance of an experienced APN from a tertiary care center.

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 institutions 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.19 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
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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.20 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 physicians 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

FIGURE. Hydromorphone/midazolam home care orders for palliative care.

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especially positioned to provide comprehensive care to children receiving hospice care in the community. In conclusion, as the EOL care trajectory evolves for pediatric patients with cancer effective prevention and control of the patients 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.
6. Goldman A, Hewitt M, Collins GS, Childs M, Hain R. Symptoms in children/young people with progressive malignant disease: United Kingdom Childrens Cancer Study Group/Pediatric Oncology Nursing Forum Survey. Pediatrics. 2006;117(6):1179-1186. 7. Prakash PS, Prabhakar H. Transient hiccups and stridor after surgery for brain-stem tumor. J Neurosurg Anesthesiol. 2007;19(4):288-289. 8. Wilne SH, Ferris RC, Nathwani A, Kennedy CR. The presenting features of brain tumours: a review of 200 cases. Arch Dis Child. 2006;91(6):502-506. 9. Kang T, Hoehn KS, Licht DJ, et al. Pediatric palliative, end-of-life, and bereavement care. Pediatr Clin North Am . 2005;52(4): 1029-1046, viii. 10. Wolfe J, Friebert S, Hilden J. Caring for children with advanced cancer integrating palliative care. Pediatr Clin North Am. 2002;49(5): 1043-1062. 11. van Breemen MS, Wilms EB, Vecht CJ. Epilepsy in patients with brain tumours: epidemiology, mechanisms, and management. Lancet Neurol. 2007;6(5):421-430. 12. Lindqvist O, Lundquist G, Dickman A, et al. Four essential drugs needed for quality care of the dying: a Delphi-study based international expert consensus opinion. J Palliat Med. 2013;16(1):38-43. 13. Cohen-Gogo S, Marioni G, Laurent S, et al. End-of-life care in adolescents and young adults with cancer: experience of the adolescent unit of the Institute Gustave Roussy. Eur J Cancer. 2011;47(18):2735-2741. 14. Lo C, Hales S, Zimmerman C, Gagliese L, Rydall A, Rodin G. Measuring death-related anxiety in advance cancer: preliminary psychometrics of the death and dying distress scale. J Pediatr Hematol Oncol. 2011;33(2):S140-S145. 15. Pritchard M, Burghen E, Srivastava D, et al. Cancer-related symptoms most concerning to parents during the last week and the last day of their childs life. Pediatrics. 2008;121(5):e1301-e1309. 16. Walsh D, ed. Chapter 163: Hiccups in Palliative Medicine. Philadelphia, PA: Saunders Elsevier; 2009. 17. Fraser LK, Miller M, Draper ES, et al. Place of death and palliative care following discharge from pediatric intensive care units. Arch Dis Child. 2011;96:1195-1198. 18. Elsayem A, Curry E III, Boohene J, et al. Use of palliative sedation for intractable symptoms in the palliative care unit of a comprehensive cancer center. Support Care Cancer. 2009;17(1):53-59. 19. Swisher C, Doreswamy M, Gingrich KJ, Vredenburgh JJ, Kolls BJ. Phentoin, levetiracetam, and pregabalin in the acute management of refractory status epilepticus in patients with brain tumors. Neurocrit Care. 2012;16(1):109-113. 20. Dyar S, M L, Shannon R, Sloan J, Colon-Otero G. A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study. J Palliat Med. 2012;15(8):890-895.

Acknowledgment
The authors gratefully acknowledge support from the Artma Foundation for pediatric brain tumor research.

References
1. Fattal-Valevski A, Nissan N, Kramer U, Constantini S. Seizures as the clinical presenting symptom in children with brain tumors. J Child Neurol. 2012;28(3):292-296. 2. Porter K, McCathy B, Freels S, Kim Y, Davies F. Prevalence estimates for primary brain tumors in the United States by age, gender, behavior, and histology. J Neurol Oncol. 2010;12:520-570. 3. Pinho RS, Andreoni S, Silva N, et al. Pediatric central nervous system tumors: a single-center experience from 1989 to 2009. J Pediatr Hematol Oncol. 2011;33(8):605-609. 4. Heath JA, Zacharoulis S, Kieran MW. Pediatric neuro-oncology: current status and future directions. J Clin Oncol. 2012;8:223-231. 5. Hendricks-Ferguson V. Physical symptoms of children receiving hospice care during the last week of life. Oncol Nurs Forum. 2008;36(6):E108-E115.

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