Palliative Extubation in Pediatric Patients in the Intensive Care Unit and at Home: A Scoping Review

Aim This scoping review is aimed at systematically mapping the evidence on palliative extubation in the pediatric intensive care unit. Methods MEDLINE, EBSCO, and Cochrane databases were searched for articles published between January 2018 and December 2022, in English. Critical appraisal of sources of evidence was done using the Joanna Briggs Institute tools. PRISMA guidelines for scoping reviews were followed. Results Six studies were included, with 366 patients, from the USA (n = 4), Brazil (n = 1), and Germany (n = 1). Three were high-quality studies, two were moderate, and one was a low-quality study. Most studies were retrospective analysis; two were narrative approaches; two were evidence-based recommendation and quality improvement project; one study was a prospective intervention. Conclusion Symptom control is crucial pre- and postextubation. A checklist (symptom management and family support) and a postdebriefing template improve team communication and staff support postextubation. Critical care transports from the hospital are feasible to provide extubation at home. A framework addressing common planning challenges and resource management is recommended for extubation at home. The provision of pediatric palliative extubation is necessary since futile measures and prolongation of suffering violate the principle of nonmaleficence. Future research on this subject will result in more benefits for patients, parents, and professionals.


Main Results
-Prevention of pain and distress is the most effective way of successful pain and distress management.
-No neonatal pain scale has been explicitly validated for use in patients under palliative neonatal care.
-The combination of several non-pharmacological measures is superior to the isolated use of nonpharmacological measures, for reducing neonates' stress reactions in acute procedural pain.
-Sucrose can be used for analgesia, particularly for acute procedural pain relief.
-No analgesics with proven efficacy and safety other than opioids are currently available for the systemic treatment of severe pain in neonates, however they are not very effective in producing reliable, prolonged sedation in severely distressed infants under palliative care.Combining opioids with specific sedatives such as benzodiazepines (Midazolam) is recommended.
-Opioid therapy to prevent pain and distress caused by acute dyspnea should be started before withdrawal of mechanical ventilation and compassionate extubation.Benzodiazepines may be used as anxiolytics or as an adjuvant to an opioid analgesic.Opioids and benzodiazepines appear paradoxically to not hasten inevitable death after ventilator withdrawal.
-No sufficient study data are available for the neonatal age for prophylaxis and treatment of side effects under opioid therapy.
-It is not possible to provide general or weight-related standard and/or maximum dosages, regardless of the type of application used.
-The targeted level of sedation should be the lowest that relieves distress.Conscious sedation is often considered the ideal level of sedation.In case of intense distress, severely refractory symptoms, or anticipated death within hours, continuous deep sedation may be indicated.
-There is insufficient scientific evidence on analgesic efficacy or safety for the use of acetaminophen, non-steroidal antiinflammatory drugs, ketamine or transdermally administered local anaesthetics in neonates.
-Medications widely used to deliver sedation in palliative neonatal care are opioids, benzodiazepines, barbiturates, and alpha2-adrenoreceptor agonists.
-Phenobarbital may be used alternatively to midazolam, given preferably orally 5mg/kg/day.
-Very little data is available on the use of alpha2-adrenoreceptor agonists in neonates.Studies available so far prove a sedative effect also in newborns.
-Should never be used as a sole agent and deep analgo-sedation should be warranted.
-Six hours before compassionate extubation, enteral feeding should be stopped and parenteral fluids reduced, overhydrated patients should be dehydrated with furosemide.At the same time administration of sedatives (for distress) and opioids (for pain and/or dyspnea) should be continued or started.
-Oxygen supplementation goal is at FiO2 0.21 before terminating mechanical ventilation and not used after compassionate extubation.
Continuing artificial nutrition and hydration may not always be the indicated, treating thirst through adequate oral care is always necessary.-68.4% of extubation were performed in the ICU; 11 patients (57.9%) died in the hospital.The time between mechanical ventilation withdrawal and in-hospital death ranged from 15 minutes to five days with a median of four hours and 20 min.

Country of origin
-In the first year after discharge, three patients died between 50 and 214 days after extubation and one patient died two years after hospital discharge.
-The main symptoms were dyspnea and pain, and the main drugs used to control symptoms were opioids and benzodiazepines.
-The mean time during which patients received ventilatory support before extubation was 188 days among patients discharged from the hospital and 276 days among those who died during hospitalization.
-Eight patients did not receive medication as preparation for extubation; nine patients received corticosteroids, six received atropine, and five received scopolamine.No discomfort symptoms were observed in eight patients after the palliative extubation, but five of them were receiving morphine and one patient, fentanyl.
-The duration of mechanical ventilation, use of endotracheal tube or tracheostomy cannula, the offer of respiratory support after extubating (oxygen or non-invasive ventilation), and the ventilatory parameters before extubation were not associated with in-hospital death.

Main Results
-The median time to death after PALEXT was 0.3 hours; 70% of patients died within 1 hour.
-The long short-term memory model had a positive predictive value of 0.81 at a sensitivity of 94% when predicting death within 1 hour of PALEXT.
-About 39% of patients who died within 1 hour met organ procurement and transplantation network criteria for liver and kidney donors.
-The long short-term memory identified 93% of potential organ donors with a number needed to alert of 1.08.
patient: history of prematurity, hypoplastic left heart syndrome, multicystic dysplastic kidney, partial DiGeorge syndrome, and vocal cord paralysis.He later developed stenosis and thrombosis of the pulmonary arteries and right superior vena cava.Transport distance was 80 miles.During transport, the patient remained stable.The hospice team assumed care.Survived for several years.-9 months patient: trisomy 21 and complete atrioventricular canal defect with posterior severe biventricular diastolic dysfunction, diuretic resistance, and atrial fibrillation, hypothyroidism, acute kidney injury, adrenal insufficiency, and deep venous thrombosis of femoral and jugular veins.Transport distance was 5 miles, 15-minute trip.During transport, the patient remained stable.Died 11 minutes after extubation.Patient was under sedation prior and throughout withdrawal of support.-19 years old patient: history of Cockayne syndrome, with right heart failure, secondary to pulmonary hypertension complicated by bilateral pleural effusions and ascites.Transport distance was 55 miles, 120 minutes.Died 2 hours after extubation.Developed some agonal breathing, requiring extra sedation.