A Descriptive Analysis of Access to Assistive Technology in Children With Acquired Brain Injury: The Right to Assistive Devices.

OBJECTIVE: Pediatric clinicians caring for children with acquired brain injury have noted that many individuals requiring assistive technology (AT) go unserved or face delays until devices are obtained, with potential adverse implications for recovery and development. In this article we map the pathways by which AT is prescribed and assess delays and barriers to access. METHODS: We conducted a retrospective chart review of patients with moderate to severe brain injury admitted to Blythedale Children's Hospital over a 2-year period using a database drawn from the medical record. RESULTS: We identified 72 children diagnosed with brain injury requiring at least 1 device. Devices were used to improve mobility and positioning, self-care, safety, and communication, and enable access to other technologies and foster social integration. We found that 55% of devices were delivered, with most deliveries to home or the hospital's outpatient department for fitting, training, and instruction. Time to delivery ranged from 12 to 250 days with an average of 69.4 days. Twenty percent of nondeliveries were attributable to change in medical status, transfer to a skilled nursing facility, or continued inpatient status, while 31% were canceled by the family. Other nondeliveries were attributed to insurance coverage. We also found that the medical record is not designed for the longitudinal tracking of devices, indicating the need for a prospective process to document the AT trajectory. CONCLUSION: Instead of tolerating delays and denials, there should be a normative expectation that children have a right to medically necessary devices, consistent with disability law. This analysis was undertaken as a step toward formulating a prospective means of tracking AT recommendations, approvals, denials, and/or deliveries. Our findings should be understood as a promissory note toward structural reforms that are reflective of society's responsibility to better meet the needs of vulnerable children and their families.

Five things physicians and patients should question in hospice and palliative medicine.

Overuse or misuse of tests and treatments exposes patients to potential harm. The American Board of Internal Medicine Foundation's Choosing Wisely® campaign is a multiyear effort to encourage physician leadership in reducing harmful or inappropriate resource utilization. Via the campaign, medical societies are asked to identify five tests or procedures commonly used in their field, the routine use of which in specific clinical scenarios should be questioned by both physicians and patients based on the evidence that the test or procedure is ineffective or even harmful. The American Academy of Hospice and Palliative Medicine (AAHPM) was invited, and it agreed to participate in the campaign. The AAHPM Choosing Wisely Task Force, with input from the AAHPM membership, developed the following five recommendations: 1) Don't recommend percutaneous feeding tubes in patients with advanced dementia; instead, offer oral-assisted feeding; 2) Don't delay palliative care for a patient with serious illness who has physical, psychological, social, or spiritual distress because they are pursuing disease-directed treatment; 3) Don't leave an implantable cardioverter-defibrillator activated when it is inconsistent with the patient/family goals of care; 4) Don't recommend more than a single fraction of palliative radiation for an uncomplicated painful bone metastasis; and 5) Don't use topical lorazepam (Ativan®), diphenhydramine (Benadryl®), and haloperidol (Haldol®) (ABH) gel for nausea. These recommendations and their supporting rationale should be considered by physicians, patients, and their caregivers as they collaborate in choosing those treatments that do the most good and avoid the most harm for those living with serious illness.

Moral distress in pediatric palliative care: a case study.

End-of-life decisions for children can be complicated by disagreements between families and health care teams. These conflicts can lead to moral distress in providers. In addition, difficulties in prognostication aggravate the problem. How teams and institutions address potential staff distress is essential to providing effective palliative care for children. Through a case study of a child with a severe life-limiting syndrome, an analysis of both the ethical and legal implications of parental and team conflict are discussed. An ethics team can help provide guidance for teams and help mediate goals of care discussions with families. Palliative care consultation can also be useful, especially in providing support for both the parent and the child.

Peritoneal tuberculosis in a 15-month-old male: surgical diagnosis of an insidious disease.

BACKGROUND: Peritoneal involvement is a relatively rare complication of tuberculosis, accounting for approximately 3.3% of extrapulmonary disease in the United States. Clinical diagnosis relies on a preponderance of indirect evidence and is often delayed. We describe such a patient. METHODS: An otherwise healthy 15-month-old male presented with fever, abdominal distention, vague abdominal pains, and a few episodes of watery diarrhea. Standard laboratory and radiologic work-up was unrevealing, and after a prolonged hospitalization, caseating granulomas were identified at diagnostic laparotomy. RESULTS: Definitive treatment was further delayed pending culture results, and the patient's condition worsened until fulminant cardiovascular collapse led to his demise. CONCLUSIONS: Despite effective chemotherapeutic regimens, the overall mortality of tuberculous peritonitis may be as high as 51%. The diagnosis must be considered and empiric antituberculous treatment started early in the course of the disease, even if definitive diagnosis is still pending.

Comparison of intermittent versus continuous infusion of propofol for elective oncology procedures in children.

OBJECTIVE: To compare the effects of administering propofol as a continuous infusion vs. bolus dosing in children undergoing ambulatory oncologic procedures in the pediatric intensive care unit (PICU). DESIGN: Prospective, randomized study. SETTING: Tertiary PICU in a university hospital. PATIENTS: Ambulatory oncology patients scheduled for diagnostic or therapeutic procedures with propofol anesthesia in the PICU were eligible for enrollment. INTERVENTIONS: Patients were randomly assigned to receive either continuous infusion or bolus administration of propofol in a protocol-driven manner. All patients received an initial bolus of 1.5 mg/kg, with additional 0.5 mg/kg doses until complete induction. Continuous infusions were started at 0.1 mg/kg/min and, if needed, increased 20% after a bolus of 0.5 mg/kg. Bolus group patients were given doses of 0.5 mg/kg if needed. Ramsay scores of < 5 were used as criteria for additional dosing. MEASUREMENTS AND MAIN RESULTS: Eighteen patients undergoing 40 separate procedures were enrolled during the study period. Twenty procedures each were performed with continuous or bolus administration of propofol. No differences were present between groups in demographic characteristics, induction dose and time, procedure and recovery times, or adverse events. All patients had adequate anesthesia and favorable satisfaction scores. More boluses were needed in the bolus group (8.5 +/- 4.6 vs. 5.4 +/- 2.9; p < .05). Average systolic blood pressure decreased more in the continuous infusion group (26.4% +/- 12 vs. 19.3% +/- 10; p < .05). Total propofol dose was higher in the continuous infusion group (8.0 mg/kg +/- 3.8 vs. 5.7 mg/kg +/- 2.4; p < .05). CONCLUSION: Both continuous and bolus administration of propofol provided conditions for conducting oncologic procedures that were satisfying to patients, their families, and physicians. Continuous infusions were associated with a larger total dose and greater decreases in systolic blood pressure. Physician preference is likely to dictate which method is used.