Medication
Indication
Route
Initial dosage
Maximum
Frequency
Dexamethasone
Raised intracranial pressure, nausea and vomiting
PO/NG, SC, IV
1–2 mg/kg (initial)
4–10 mg/dose
Q6–12 h
0.25–0.5 mg/kg
Ondansetron
Nausea and vomiting
PO, SC, IV
0.15 mg/kg
8 mg
Q8 h
Morphine
Analgesia, dyspnea
PO/NG
0.1–0.3 mg/kg/dose
Q3–4 h
SC, IV
00.05–0.15 mg/kg/dose
Q3–4 h
Continuous Infusion (SC, IV)
0.01–0.06 mg/kg/h
Hydromorphone
Analgesia, dyspnea
PO/NG
0.03–0.1 mg/kg/dose
PO—Q3–4 h
SC, IV
0.015–0.02 mg/kg/dose
SC/IV—Q3–4 h
Continuous Infusion (SC, IV)
0.001–0.003 mg/kg/h
Fentanyl
Analgesia
IV
0.5–2 μg/kg/dose
Q30 min–1h
Continuous IV
0.5–2 μg/kg/h
Q72 h
Transdermal
Patch: 12.5, 25, 50, 75, 100 μg/kg/h
Gabapentin
Analgesia (adjuvant agent for neuropathic pain)
PO/NG
10 mg/kg/day titrate up to 50 mg/kg/day for effect
3,600 mg/day
Q8 h
(50–75 mg/kg/day)
Midazolam
Dyspnea, seizures, agitation
Buccal
0.3 mg/kg
Q 5min (Seizures) to Q4 h
Intranasal
0.1 mg/kg/dose
SC, IV
0.025–0.05 mg/kg/dose
Lorazepam
PO, SC, IV
0.002–0.01 mg/kg/dose
Q4–6–12 h
Methotrimeprazine
Agitation, nausea,vomiting
PO/NG, SC
0.12–0.5 mg/kg/dose
Q4–12 h
Haloperidol
Agitation, delirium
PO, IVSC/IV
PO—0.01–0.2 mg/kg dose
Q8–12 h
SC—0.005–0.06 mg/kg
Glycopyrrolate
Increased respiratory secretions or terminal secretions at EOL
PO
0–100 μg/kg
Q6 h
SC
4–10 μg/kg
Q3–4 h
Agitation is commonly observed at EOL and presents as restlessness, moaning, and grimacing. Treatment may include benzodiazepines (lorazepam, midazolam), neuroleptics (methotrimeprazine, haloperidol), reduction of steroid dosage, or administration of opioid if agitation is associated with pain. Agitation can be very distressing for family members necessitating timely and aggressive symptom management.
Declining neurological and cognitive functions predispose patients to choking, aspiration, and falls. Patients with BT are at high risk for skin breakdown related to functional deficits, immobility, and weight gain secondary to steroid use [13]. Patients may present with delayed wound healing and/or wound infection as a result of steroid treatment. With disease progression, leptomeningeal disease, or spinal metastases, patients may develop a neurogenic bowel and bladder and become incontinent of urine and stool.
Corticosteroids are frequently utilized for the relief of progressive neurological symptoms. Initially they provide a marked improvement; however, this efficacy is generally transient [18]. The dilemma often arises whether to further increase the dose of corticosteroids for symptom relief, which often results in a concomitant increase in the side effects of steroids, which are often burdensome in themselves. These adverse effects include hyperphagia, weight gain, body transformation, glucose intolerance, hypertension, mood disturbance, gastrointestinal bleeding and ulcers, and obstructive sleep apnea [18]. Hyperphagia in itself can be of particular concern in those children with swallowing disturbances, as they are permanently hungry and are at risk of choking.
As children approach the final hours of life, respiratory symptoms are greatly impacted by neurological decline and progressive somnolence. Irregular breathing patterns begin to present as hypoventilation, apnea, Cheyne-Stokes respirations, and agonal breathing. These symptoms may be isolated or occur in combination. The loss of gag reflex, inability to swallow, and the buildup of oral and tracheal secretions lead to gurgled respirations referred to as the death rattle. This can be particularly difficult for family members to observe [15]. Glycopyrrolate administered SC is used to reduce the production of saliva in unresponsive patients.
Palliative Sedation
In specific circumstances palliative sedation (PS) may be implemented to alleviate uncontrollable pain, seizures, respiratory distress and existential suffering despite rigorous treatment of refractory symptoms at EOL. There is a paucity of published reports to determine incidence and prevalence of palliative sedation instituted in children with brain tumors. The initiation of PS occurs once the medical team and parents determine that the child has true refractory symptoms causing unbearable suffering. It is imperative that the intent of PS be addressed well before initiation so that parents understand that PS is not intended to hasten death but to support the child through this difficult stage of their dying process. Engaging the parents and the multidisciplinary team early in the process minimizes moral distress and unites the parents and team in shared EOL goals. Such cases require written guidelines and expertise to direct the administration of continuous high-dose opioids and sedation [19].
Psychological Symptoms
Symptom management includes the management of both physical and psychological symptoms. A recent review of symptoms in the palliative phase identified that the mean number of psychological symptoms per child was 3.2, and the main symptoms were sadness, difficulties in talking about their feelings regarding illness and death with parents, fear to be alone, loss of perspective, and loss of independency [11]. Wolfe et al. identified that according to their parents, in the last month of life, children had little or no fun, were more than a little sad, and were not calm or peaceful most of the time [2]. Mood disorders particularly anxiety and depression are not uncommon. Jalmsell et al.’s survey of bereaved parents identified children >9 years old were at higher risk of developing anxiety [13]. These symptoms need to be openly discussed and addressed by psychosocial members of the allied health-care team early on in the trajectory.
Advance Care Planning
ACP is a clinical intervention to facilitate ethical and effective decision-making for children with BT. ACP in a pediatric setting is a process that honors relationships, family-centered care, and cultural values to support decision-making. Open communication is central to good palliative care and is linked to improved decision-making and decreased parental suffering [2, 4].
Pediatric oncologists are called upon to talk openly with patients and parents about aggressive cancer focused treatment, ending life support, and identifying the dying point for patients with incurable BT. Addressing end-of-life decisions including Do Not Attempt Resuscitation (DNAR) early on in the trajectory minimizes a potential crisis during a time of acute deterioration or flare-up of refractory pain or symptom. Thus, it is essential to use the time period following the diagnosis of incurable BT to begin the process of identifying goals of care and facilitating the development of EOL care plans. This is highly relevant for children and adolescents whose ability to communicate personal care preferences may be impacted by bulbar dysfunction and cognitive decline.
Decision-Making
End-of-life decision-making is emotionally arduous and intense for parents of children with brain tumors. EOL decisions for children with BT include limiting or ending treatment, withholding/withdrawing artificial hydration and nutrition, determining location of care, and assessing the need for palliative sedation and resuscitation [2, 4, 5, 20]. Parents approach such existential decisions for their child and themselves by weighing decisions regarding their child’s suffering, regarding experimental treatment options, and regarding a purely palliative approach to care and recognizing that without treatment their child will die. Parents are further called upon to make decisions related to autopsy, tissue donation, and funeral arrangements. Given the complexity of such decisions, patients and families require guidance and direction from a skilled and supportive multidisciplinary team [10].
Heinze and Nolan performed a qualitative review of published research on parental decision-making for children at EOL over a 10-year period from 2001 to 2011 [21]. In this review of 35 published reports, parental decision-making was positively influenced by the clinical expertise of the treating team, consistent and direct communication about the child’s progress, and clear understanding of the prognosis. Other studies rank hope as an important factor in decision-making [10, 22]. The need to have more time with their children has emerged as a prominent theme in parental EOL decision-making studies. Palliative chemotherapy is an intervention that parents value as being important in order to have more time with their child. Studies have demonstrated that clinicians think otherwise and perceive palliative chemotherapy to be invasive with the potential to cause treatment-related side effects, to adversely affect quality of life, and to prolong suffering [11, 22, 23].
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