The initial search of the databases resulted in 2,514 documents: 115 were preselected, and 46 were eligible for full-text reading. According to the PCC question, 11 articles were included in this review. [24–34] After reading the bibliographic references of these articles, one more article was added, [35] totaling 12 articles, as shown in Figure 1.

Figure 1.

Scoping Review Flowchart – Pediatric Palliative Extubation (up to April 2025).

From the 12 selected studies, variables of interest related to palliative extubation in pediatrics, in the age group from zero to 18 years, in any care setting, were extracted and analyzed (Table 2).

Among the 12 selected articles, eight were case reports, [26,27,29–33,35] and four were cross-sectional, [24,25,28,34] with three retrospective [24,28,34] and one prospective. [25] Only one study performed a multicenter analysis. [25]

The studies were published between 1994 and 2025, with seven conducted in the United States, [25–27,29,30,32,33] two in the United Kingdom, [24,35] one in Spain, [31] and two in Brazil. [28,34]

Eight studies were considered high quality: five case reports [27,29–32] and three cross-sectional studies. [25,28,34] The remaining studies were classified as moderate quality: three case reports [26,33,35] and one cross-sectional study. [24] The critical evaluation of the studies is presented in Table 3.

Table 3.

Assessment of study quality using the JBI Critical Appraisal Tools recommended for case reports and cross-sectional studies.

Among the eight studies, [26,27,29–33,35] six aimed to perform palliative extubation at home: 4 of them were conducted in the United States, [26,27,29,30] two of them [26,29] with greater emphasis on the transport of critical patients, 1 in Spain, [31] and another in the United Kingdom. [35] The other two studies presented a case report to illustrate the literature review: one of them, a review on the suspension of life support measures in pediatric and neonatal ICU, [32] and the other, a review on the implementation of palliative extubation at home, [33] both in the United States.

There are four cross-sectional studies, [24,25,28,34] one prospective, [25] and three retrospective. [24,28,34] Burns et al. [25] described the attitudes and practices of physicians and nurses regarding the use of sedation and analgesia when withdrawing life support in three centers in Boston (USA) in a sample of 53 patients. Laddie et al., [24] in the United Kingdom, in a single center, evaluated 15 patients to develop local guidelines for the practice of palliative extubation outside the ICU. In Brazil, Affonseca et al. [28] and Abath et al., [34] both in a single center, analyzed 19 patients undergoing palliative extubation to describe this population and, if possible, identify predictive factors for survival time after the procedure, and 27 patients undergoing palliative extubation to describe the clinical and epidemiological profile of this population.

The population of all studies included 129 patients undergoing palliative extubation; however, data were extracted for 128 of them, since in the study by Garcia et al., [29] one of the three patients was older than 18 years and was excluded from the analysis. The age of the patients was described as median in three studies [25,28,34] (n = 99), ranging from 4 to 30 months. In the study by Laddie et al. [24] (n = 15), the age ranged from 2 weeks to 16 years. In the other studies, [26,27,29,30–33,35] the median age calculated for the 14 patients (11.0%) was 7 months (IQR: 2-12).

Among patients, 58.6% (n = 37) of patients [24,26–35] were classified as female (49.3%), and 38 patients were male (50.6%); Burns et al. [25] did not report the gender of the patients included in their study (n = 53).

The clinical characteristics of patients undergoing palliative extubation involved severe, irreversible, and/or terminal chronic conditions that varied according to the profile of the service where the studies were conducted. The most frequently identified diagnoses were prematurity with severe complications, complex heart disease, cancer, genetic diseases, complex congenital malformations, neurological diseases associated with hypoxic-ischemic encephalopathy, malformations of the central nervous system, and progressive neurodegenerative diseases.

A total of 15 patients were evaluated: three studies [26,29,35] with three patients each, that of Postier et al. [27] with two patients, and the others [30–33] with only one patient per study. In the study by Garcia et al., [29] with three patients, one was 19 years old and was excluded from the sample; thus, the population for analysis of the results was 14 patients.

Of the 14 patients who underwent palliative extubation, 6 (43%) were female and 8 (57%) were male; the age range varied from 14 days [35] to 18 years. [26] It is noteworthy that 11 patients (78.6%) were under two years of age (calculated median of 180 days, IQR: 54.5 to 240.0), 10 of whom were less than one year old. [26,27,29–33,35] Among these 10 children, 6 were preterm newborns [29,31,32,35] whose gestational age at birth ranged from 24 to 36 weeks. Prematurity was associated with malformations, hypoxic-ischemic syndrome, and complications resulting from gestational age (bronchopulmonary dysplasia, cerebral hemorrhage). The other five children under two years of age were diagnosed with spinal amyotrophy (n = 3) [26,27,30] and 21-trisomy associated with complex heart disease (n = 2). [29,33] In three patients over two years of age, [26,27] the associated clinical conditions were prostate rhabdomyosarcoma, relapsed acute lymphocytic leukemia, and severe cerebral sequelae after attempted suicide.

There are four cross-sectional studies, [24,25,28,34] one prospective [25] and three retrospective, [24,28,34] totaling 114 patients.

The median age was reported in 99 patients (86.8%) and ranged from 4 months [34] to 30 months. [25,28] For the remaining 15 patients (13.2%), the age ranged from 2 weeks to 16 years. Information about the sex of the patients was available for only 53.5% of the patients, since in the study by Burns, this information was not available. The objective of the study by Burns et al., [25] in a prospective multicenter study with 53 patients, was to evaluate the medications (class and dose) used during the process of withdrawing life support from patients and to analyze the degree of satisfaction of physicians and nurses regarding the end-of-life care provided, as well as the degree of agreement between them regarding the justifications for the use of medications after extubation. The main clinical conditions of patients who used analgesics or sedatives were acute respiratory failure (n = 15), postoperative (n = 11), sepsis (n = 8), cancer (n = 8), and neurological disorders (n = 5). In the other retrospective and single-center studies, the main primary diagnoses were: neurological, renal, and respiratory diseases, [24] neurological or neuromuscular diseases, [28] and genetic diseases and malformations (cardiac, CNS, renal, and digestive). [34]

Palliative extubation was performed in a hospital setting in 78.1% of patients (n = 100), [25,28,32,34] mainly in the ICU (n = 93). [25,28,34] Six patients underwent palliative extubation in the inpatient unit [28] and one patient in a private room. [32] Twenty-eight patients (21.9%) [24,28,32] were transported for the procedure outside the hospital setting: 18 (14.6%) to their homes, [24,26,27,29–31,33,35] 8 to a hospice, [24] and 2 to “other locations”. [24] Most patients undergoing palliative extubation (n = 119; 93.0%) were on endotracheal tubes, [24–29,30,33–35] and nine patients (7.0%) were tracheostomized. [27,28,31,32]

Thirteen patients (92.9%) underwent palliative extubation at home, [26,27,29–31,33,35] and in only one patient, [32] this procedure occurred in the hospital, in a private room. At the time of palliative extubation, 78.6% (n = 11) of patients used an endotracheal tube [26,27,29,30,33,35] and 21.4% (n = 3) used a tracheostomy cannula [27,31,32] as IMV devices.

Palliative extubation was performed in the ICU in 93 patients (81.6%). [24,25,28,34] Other places where the palliative extubation took place were in a hospice (n = 8), [24] in the inpatient unit (n = 6) [28], at home (n = 5), [24] and for 2 patients, the location was not specified. [24] An endotracheal tube was used for IMV in most patients (94.7%; n = 108). [24,25,28,34] The others received IMV through a tracheostomy cannula (n = 6). [28]

Among the 128 patients analyzed, in 52 patients (40.6%) [27,28,33–35] the median time from IMV to palliative extubation was 20 days (IQR: 14-39; n = 27), [34] 31 days (IQR: 11.5-97; n = 19) [28] or 34.5 days (IQR: 12.5-57.2; n = 6). [27,33,35] Information was not available for 59.4% (n = 76) of patients. [24–26,29–32]

The time between decision-making and performing palliative extubation was only observed in 24 patients (18.7%): [26,28,31,33] in 19, the median time was 1 d (IQR: 0 to 4.5), [28] and in 5, there is no precision regarding the time (“a few days” and less than 24 hours). [26,31,33] For 81.3% (n = 104) of patients, [24,25,27,29,30,32,34,35] this information was not available.

Both times, information (IMV and decision) was not available for 56.3% of the patients analyzed (n = 72). [24,25,26,29,30,32]

The information about the duration of IMV until PE was available for six patients (42.9%), [27,33,35] and the median was calculated as 34,5 days (IQR: 10 to 60). For 57.1% (n = 8) of patients [26,29,30,31,32], this time was not reported.

The time elapsed between decision-making and palliative extubation ranged from “less than 24 hours to a few days” for five patients. [26,31,33] For most patients (n = 9; 64.3%), this time was not reported. [27,29,30,32,35]

Neither IMV nor decision-making regarding palliative extubation times was reported for four patients (28.6%). [29,30,32]

The median times of IMV use until palliative extubation were reported in the two Brazilian studies (n = 46; 40.4%): 20 days (IQR: 14-39) [34] and 31 days (IQR:11.5-97). [28] In the other studies (n = 68; 59.6%) [24,25], the information was not available.

The time between decision-making and discharge was reported in only one study (n = 19; 16.7%): [28] median of 1 d (IQR: 0 to 4.5).

The use of medications prior to palliative extubation was reported in 119 patients (93%), [24–34] with opioids and benzodiazepines being the drug classes used in 97.5% of these patients. [25,28,29,30–33] In 22 patients (18.5%), some medication was reported to have been used, but it was not specified. [24,26,27,29] Six patients (4.9%) were in a coma and did not use medications before palliative extubation. There was no record of medication use prior to extubation in one of the studies, involving 3 patients (2.3%). [35]

After palliative extubation, 116 patients (90.6%) received some medication for symptom control. [24,25,27–29,31,32,34] In 72 patients (62.1%), who were already using sedatives and analgesics, their treatment was maintained, with or without dose increases. In three studies [24,29,34] (n = 44; 37.9%), the class of medications used for symptom control in 44 patients (37.9%) was not specified. In one study, [30] the patient did not use medications after palliative extubation because they were asymptomatic. In three studies (n = 7), [26,33,35] there was no information on medication use after ventilation was weaned.

The occurrence of signs/symptoms during and/or after withdrawal of ventilatory support was described in seven studies, [24,25,27–29,32,34] totaling 118 patients. The most reported symptoms were dyspnea, agitation, pain, and sialorrhea. Two patients had no symptoms after palliative extubation [29,30] and there was no information on signs or symptoms after palliative extubation in 4 studies, including 8 patients (6,3%). [26,31,33,35]

In 11 patients (78.6%), [26,27,29,30,31,32,33] there were reports of medication use prior to palliative extubation, with sedatives and analgesics being used in 7 of these cases; however, in 4 patients, the medications used for comfort were not specified. [27,31] In one study [35] (n = 3), there was no information about the use of medications. The use of vasopressors in the 72 hours prior to palliative extubation was reported for one patient (7.1%) among the three in Noje’s study. [26] In 5 patients, no vasopressors were used in the 72 hours prior to palliative extubation, [27,30–32] and for six patients (42.9%), this information was not available. [26,29,33,35]

Symptoms after palliative extubation were reported in 4 patients. One presented agitation and dyspnea [32] and another presented accumulation of secretions in the respiratory tract. [27] For the other two patients, [27,29] the symptoms of discomfort were not specified. Two patients had no symptoms after palliative extubation, [29,30] and in 4 studies [26,31,33,35] (n = 8), this information was not available.

The use of medication after palliative extubation was reported in 6 patients (42.3%), [27,29,31,32] especially barbiturates, opioids, and atropine. In one patient, [30] medication was not necessary. In 7 patients (50%), there was no information about the use of medication to control symptoms after palliative extubation. [26,33,35]

Medications were used before palliative extubation in 108 patients, [24,25,28,34] and in 6 patients (5.3%), no medication was used to prepare for the procedure. [25] Opioids and benzodiazepines were mainly prescribed, but the use of other medications such as atropine, scopolamine, and corticosteroids was also described. In 15 patients, the class of medications used was not specified. [24]

Two studies describe the use of vasopressors in “some patients” [25] and in four patients [34] for a population of 53 patients and 27 patients, respectively. However, it is unclear whether their use was within the 72 hours prior to palliative extubation. This information was not available for 34 patients (29.8%). [24,28]

The main signs/symptoms recorded during and/or after withdrawal of ventilatory support in the cross-sectional studies [24,25,28,34] were agitation, dyspnea, pain, and sialorrhea.

For symptom control, the use of benzodiazepines and opioids, [25,28,34] oxygen, [24,28] and non-invasive ventilation support [28,34] was described.

After discontinuation of respiratory support, 116 patients (90.6%) died, [24–35] and the time between withdrawal of support and death ranged from “immediately” [24] to 38 days. [34] It is important to note that 12 patients (9.4%) [24,28,34] were discharged.

All patients included in the case reports [26,27,29–33,35] died after palliative extubation. The median time between palliative extubation and death was calculated as 50 minutes (IQR: 17.5 to 120) for 12 patients. [26,27,29,30–33,35] Three patients were excluded from the sample calculation due to a lack of accurate information (“a few hours,” “many years” 2 or 7 days). [26,27,29]

The outcome of patients undergoing palliative extubation was death in 89.5% (n = 102) [24,25,28,34] and discharge in 10.5% (n = 12). [24,28,34] The time between palliative extubation and patient death varied between studies. In the study by Burns, [25] 45 patients (84.9%) died within the first 4 hours after discontinuation of ventilatory support, and 8 patients (15.1%) died between 4 and 24 hours after the procedure. In the study by Laddie, [24] 14 patients (93.3%) died between “immediately” and 5 days after palliative extubation. In the study by Affonseca, [28] 11 patients (57.9%) died between 15 minutes and 5 days after IMV removal, and in the study by Abath, [34] 24 patients (88.8%) died between 20 minutes and 38 days after the procedure.

To better describe the characteristics of each study, the reported data are presented in a table appended to this article (Supplementary Material - Table 4).

The present review found that the hospital, especially the ICU, was the predominant setting for palliative extubation, probably due to the availability of adequate structure and the presence of an interprofessional team skilled in caring for patients on artificial life support, including rapid response to unexpected events and adequate symptom management, with the integration of PC throughout the disease. [37] The review also showed that increased access to PC and hospice care is likely to favor the suspension of life support measures outside the hospital setting. The demographics of death at home versus in the hospital have been changing as the pediatric population with complex chronic conditions and technology dependence begins to use home care while also having access to a PC team and advanced care planning.

Ten of the 12 studies selected for review were conducted in the United Kingdom, [24,35] Spain [31] and the United States, [25–27,29,30,32,33] countries with very high human development indices (HDI), with the first two ranking among the countries with the highest quality of death indices, as reflected by the provision of PC to the population, availability of access to opioids, public information on PC, training of health professionals in PC, and the existence of public policies focused on PC. [40,41] Among these 10 studies, eight [24,26,27,29–31,33,35] transferred patients from the ICU to receive PC at home, seeking to fulfill the parents’ wishes and emphasizing the importance of allowing parents to choose where their child will live their last moments, considering aspects related to the preservation of privacy and the feeling of security provided by the environment, [26,27,29] which is corroborated by other authors. [42,43] End-of-life care at home can give parents a greater sense of control over the situation and facilitate the grieving process. [44] Parents of children who chose to provide end-of-life care for their children at home, including palliative extubation, reported the experience as positive and very meaningful because it allowed everyone the opportunity to say goodbye and bring back comforting memories and a sense of accomplishment. [42] Home palliative extubation, with its numerous logistical and ethical challenges, including specialized transportation and bereavement support, is feasible and can be carried out safely with rigorous planning, integrated work by the entire care network, trained staff, and integration with home PC or hospice, always respecting the wishes of the patient and/or their family. [26,33,36,45]

Two studies [28,34] selected for this review were published in Brazil, which in 2021 ranked 78th among 81 countries evaluated for quality of death [41] and which, only in 2024, was covered by a national PC policy. [46] In these two studies, [28,34] all cases of PE were carried out in a hospital setting.

Despite the potential benefits, pediatric palliative extubation outside the hospital remains a rare practice, facing significant challenges due to the limitations of support in the out-of-hospital setting, including specialized professionals, equipment, and medications, as well as the lack of preparation among families and their support networks. In addition, there is a need for improvements in policy strategies and spaces such as hospices. [47]

The device used for IMV prior to palliative extubation was predominantly the endotracheal tube [24–29,30,33–35] compared to tracheostomy. [27,28,31,32] Little is known about the specific differences, in the context of PC, between choosing an endotracheal tube or tracheostomy. In general, recent guidelines on pediatric ventilatory support emphasize that endotracheal tubes are associated with a higher risk of upper airway obstruction after extubation, mainly due to subglottic edema, and require specific assessment and prevention strategies. [48] There is no robust evidence that the choice of device alters the outcome. However, attention must be paid to the risks involved, which may influence technical and clinical aspects of palliative extubation, including the use of specific medications for upper airway obstruction.

The median time from IMV to palliative extubation ranged from 20 to 34.5 days, [27,28,33–35] although this information was not available for most patients in this review. [24–26,29–32] It is known that for patients with complex chronic diseases or multiple organ failure, the median duration of IMV can often exceed 14 days, a time defined as prolonged ventilation [49] and lasts even more than 22 days. [50] However, there is no standard minimum time for the use of IMV before performing palliative extubation, as the decision-making process is highly individualized and guided by numerous factors such as diagnosis, prognosis, family values, and the performance of the interprofessional team. The decision on the adequacy of support and palliative extubation is progressive. [38,48,50] Some evidence [38,50] suggests that prolonged IMV may lead to respiratory muscle dysfunction, accumulation of secretions, and an increased risk of respiratory distress after extubation, which requires advanced symptom control strategies to ensure comfort and dignity in the palliative extubation process. The literature [48,50] also highlights that prolonged IMV is one of the main risk factors for extubation failure, even outside the palliative context, which may lead to a higher probability of severe respiratory symptoms or the need for additional interventions.

Similarly to IMV time, information on the time elapsed between the decision and the withdrawal of ventilatory support was not available for most patients, [24,25,27,29,30,32,34,35] which makes the available information of “a few days and less than 24 hours” [26,31,33] and “median of 1 day”, [28] not representative; however, it does raise questions. The decision-making process for withdrawing life support is complex: it involves careful prognostic assessment, structured communication with the family, consensus among the interprofessional team, and ethical and legal principles. It is recommended that this decision be made jointly and following the care objectives defined with the patient and family, which can take days to weeks, depending on clinical evolution, family context, and the team. [48] Thus, the time is different for each patient, varying widely during the process, from the first conversations to the decision-making, reflecting the need to adapt to the individual context and the pace of understanding and acceptance of the family, which may result in prolonged use of IMV. Once the decision to withdraw IMV has been made, it should be implemented as soon as the detailed planning and communication of the withdrawal process have been completed, ensuring adequate symptom management and ongoing emotional support for the family and team, also that the transition to comfort care occurs in a compassionate, ethical manner aligned with the best interests of the patient. [48] This time should be sufficient for the patient, team, and family to be adequately prepared, without, however, being prolonged too much, since the time prior to the implementation of palliative extubation is likely to be related to moments of great anxiety and distress for all involved. [51]

This review [24–35] observed the use of medications in the palliative extubation process, and among the medications used, as expected, analgesics and sedatives stood out, especially opioids and benzodiazepines. However, the absence of this information for many patients also requires attention.

Medication management during palliative extubation, commonly focused on the use of analgesics and/or sedatives before, during, or after the procedure, demonstrates a concern with preventing and relieving pain, dyspnea, and agitation, which are the main symptoms related to the withdrawal of ventilatory support. Anticholinergics and corticosteroids may also be associated according to the needs of each patient, as described by other authors, both in pediatric patients [52] as well as adults. [1,15,18,53–55]

It is important to note that the appropriate use of medications is not associated with a reduction in survival time after extubation, reinforcing that the focus of care should always be to provide relief from suffering and never to anticipate death. [37,52]

Death was the most frequent outcome in this review, [24–35] occurring within a variable time interval ranging from “immediately” to “38 days” after palliative extubation. Survival time after palliative extubation depends on the patient’s clinical and functional profile and can vary widely. [37,38,52] This review highlights that 9.4% of patients were discharged, [24,28,34] similarly to that observed in adult patients. [15,16,55,54,55–59] No robust data quantifies this phenomenon in pediatrics. In PC settings, a portion of patients may survive longer, especially when there is residual physiological reserve or the indication for extubation is not associated with immediate terminal organ failure. [38] Unpredictability should be considered, and the possibility of survival after palliative extubation should be anticipated and discussed with the interprofessional team and family to ensure alignment of expectations and adequate preparation for hospital discharge.

Limitations were identified in this review because, although a search strategy was systematically applied to multiple databases, the possibility that relevant studies may have been missed cannot be ruled out. In addition, publication bias may have occurred due to the search for abstracts only in english. Furthermore, information about some variables of interest was not available in all selected studies, which limits the volume of information available, impacting possible conclusions on some topics. Finally, the included studies had diverse objectives and variable and heterogeneous results, making it difficult to report and synthesize the results of all selected studies.