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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0001" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0007">Introduction</span><p id="para0006" class="elsevierStylePara elsevierViewall">The many advances in Pediatric Critical Care over the last 30 years have allowed a substantial reduction in mortality<a class="elsevierStyleCrossRef" href="#bib0001"><span class="elsevierStyleSup">1</span></a><a class="elsevierStyleCrossRef" href="#bib0002"><span class="elsevierStyleSup">2</span></a> which now ranges between 2&#46;5 to 12&#37;&#44; depending on the part of the world analyzed&#46;<a class="elsevierStyleCrossRef" href="#bib0003"><span class="elsevierStyleSup">3</span></a><a class="elsevierStyleCrossRef" href="#bib0004"><span class="elsevierStyleSup">4</span></a></p><p id="para0007" class="elsevierStylePara elsevierViewall">What becomes even more relevant in the modern Pediatric Intensive Care Units &#40;PICUs&#41; is that most of the remaining deaths are not preceded by a sudden cardiac arrest&#44; but rather are the culmination of a defined end-of-life care &#40;EOLC&#41; plan within palliative care &#40;PC&#41; context&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a><a class="elsevierStyleCrossRef" href="#bib0006"><span class="elsevierStyleSup">6</span></a>The decisions leading to this planned ending usually follow an agreement between the healthcare team and the family&#46; These goals of care discussions lead to measures to forgo Life-Sustaining Treatment &#40;LST&#41; that include no-resuscitation and&#47;or no-escalation orders or even withdrawal of technological support&#44; medications&#44; and even hydration&#44; associated with multidisciplinary support for the family to comfort them&#44; including ceremonials and memories creation&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a></p><p id="para0008" class="elsevierStylePara elsevierViewall">Recent data from PICUs in Brazil reflect this trend&#44; with less than 50&#37; of deaths being a consequence of failed cardiopulmonary resuscitation&#46;<a class="elsevierStyleCrossRef" href="#bib0008"><span class="elsevierStyleSup">8</span></a><a class="elsevierStyleCrossRef" href="#bib0009"><span class="elsevierStyleSup">9</span></a> The &#8220;Conesul End-of-Life Study Group&#8221; and the American College of Critical Care Medicine recommend a systematic approach to EOLC focused on the patient and their family at all stages utilizing a PC approach&#46;<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">10</span></a><a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a>The objective of these procedures is to provide a dignified&#44; compassionate and&#44; above all&#44; humanized death in PICUs&#44; despite the high technological complexity that characterizes them&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a></p><p id="para0009" class="elsevierStylePara elsevierViewall">In this scenario&#44; the adequate preparation of multidisciplinary teams to achieve this objective is essential&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><a class="elsevierStyleCrossRef" href="#bib0012"><span class="elsevierStyleSup">12</span></a> When facing a patient considered terminal&#44; the care team members may be subject to intense emotional suffering&#44; associated with ethical dilemmas and conflicts of a social and&#47;or religious nature with families and teams&#46;<a class="elsevierStyleCrossRef" href="#bib0012"><span class="elsevierStyleSup">12</span></a></p><p id="para0010" class="elsevierStylePara elsevierViewall">The present study aims to investigate the perspectives of Brazilian PICU professionals about EOLC&#44; including decision-making&#44; bereavement&#44; and family support&#44; in order to promote a national debate on palliative care practices&#46;</p></span><span id="sec0002" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0008">Methods</span><p id="para0011" class="elsevierStylePara elsevierViewall">This is a cross-sectional study applied in PICUs of three different hospitals from the South and Southeast of Brazil&#58; two mixed PICUs&#44; one with 46 beds and the other with 68 beds&#44; both with cardiac postoperative care&#44; and one at an oncologic hospital with 7 beds&#46; All hospitals offer organ transplant programs and the two general PICUs have ECMO &#40;Extracorporeal Membrane Oxygenation&#41; programs&#46; The oncologic PICU and one of the general PICUs are part of public hospitals&#44; and the other general unit is part of a private hospital&#46; They were chosen for convenience&#44; aiming to capture the perspective of healthcare professionals working in tertiary&#47;quaternary units&#46;</p><p id="para0012" class="elsevierStylePara elsevierViewall">The participation was voluntary&#44; anonymous and without monetary incentive&#46; The study was reviewed and approved by the coordinating entity and its ethics committees &#40;Instituto PENSI - Pesquisa e Ensino em Sa&#250;de Infantil&#59; CAAE n&#186; 06681119&#46;7&#46;0000&#46;5567&#41;&#46;</p><p id="para0013" class="elsevierStylePara elsevierViewall">The questionnaire was prepared using the Google Forms&#174; platform &#40;Mountain View&#44; CA&#44; USA&#41;&#44; with its content validity evaluated and approved by 12 PICU experts&#44; using the methodology described by Burns et al&#46;<a class="elsevierStyleCrossRef" href="#bib0013"><span class="elsevierStyleSup">13</span></a> Its final version contains 37 questions &#40;34 multiple-choice and 3 free texts&#41;&#58; 6 about training and personal experience&#59; 6 evaluating the team&#39;s thoughts about the ideal practice&#59; 3 exploring the professional&#39;s comfort level with decision-making&#59; 6 about the existing EOLC model&#59; 4 addressing family communication&#59; 4 evaluating care after support limitation&#47;withdrawal and death&#59; 8 about demographic information &#40;personal and institutional&#41; &#40;<a class="elsevierStyleCrossRef" href="#sec0013">Supplemental Content</a>&#41;&#46;</p><p id="para0014" class="elsevierStylePara elsevierViewall">The survey was distributed between 09&#47;25&#47;2019 and 12&#47;15&#47;2019&#44; by email&#46; Managers were encouraged to send three monthly reminders&#46; This publication describes a portion of the data obtained&#44; to be complemented by future publications&#46;</p><p id="para0015" class="elsevierStylePara elsevierViewall">For better understanding and respecting the decision-making roles&#44; most of the answers were divided between physicians versus other Health Care Professionals &#40;HCPs&#41; of the multidisciplinary team &#40;nurses&#44; respiratory therapists&#44; and nursing technicians&#41;&#46; When relevant&#44; the authors report the responses globally&#44; that is&#44; referring to &#8220;all professionals&#8221;&#46;</p><span id="sec0003" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0009">Statistical analysis</span><p id="para0016" class="elsevierStylePara elsevierViewall">The results obtained were tabulated using the Google Sheets&#174; platform &#40;Mountain View&#44; CA&#44; USA&#41;&#46; Categorical variables were expressed as percentages or in descriptive form&#44; compared with each other using the chi-square or Fisher&#39;s test&#44; according to applicability&#46; Univariate regressions were performed to assess the strength of the association between responses&#46; Statistical analysis was performed using the R language version 3&#46;5&#46;2&#46;<a class="elsevierStyleCrossRef" href="#bib0014"><span class="elsevierStyleSup">14</span></a></p></span></span><span id="sec0004" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0010">Results</span><p id="para0017" class="elsevierStylePara elsevierViewall">The three hospitals involved in this research have 626 professionals working in PICUs&#58; 156 physicians &#40;25&#37;&#41;&#44; 405 nurses and nursing technicians &#40;65&#37;&#41;&#44; 40 physiotherapists &#40;6&#37;&#41; and 25 other professionals &#40;4&#37;&#41;&#46;</p><p id="para0018" class="elsevierStylePara elsevierViewall">The authors obtained 144 responses &#40;23&#37; response rate&#41;&#46; Six questionnaires were excluded from the analysis&#44; due to the low representation of their professional class in the general sample &#40;three social workers&#44; one pharmacist&#44; one nutritionist and one psychologist&#41;&#46; Two questionnaires were excluded because they were incomplete&#44; with the final sample consisting of 136 questionnaires&#46;</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0011">Participants profile</span><p id="para0019" class="elsevierStylePara elsevierViewall"><a class="elsevierStyleCrossRef" href="#tbl0001">Table 1</a> details the 136 participants included&#44; broken down by profession&#44; time since graduation and their involvement in EOLC cases&#46;</p><elsevierMultimedia ident="tbl0001"></elsevierMultimedia></span><span id="sec0006" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0012">Confidence in EOLC approach</span><p id="para0020" class="elsevierStylePara elsevierViewall">The questionnaire evaluated the professionals&#39; 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however&#44; considering it insufficient for their practice&#59; 46&#37; &#40;22&#47;48&#41; physicians and 36&#37; &#40;32&#47;89&#41; of the other HCPs reported never having had any training in this area&#46; Only 6&#37; &#40;3&#47;48&#41; of physicians reported that they had sufficient training to conduct EOLC&#46;</p></span><span id="sec0007" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0013">Barriers to EOLC implementation</span><p id="para0022" class="elsevierStylePara elsevierViewall">In a multiple-choice question&#44; participants were asked about the main barriers to EOLC implementation&#44; with 133 responses and 3 abstentions&#46; &#8220;Cultural&#47;social&#8221; difficulties are the biggest obstacle&#44; with &#8220;difficulty&#47;resistance of families to approach this subject&#8221; as the reason mentioned by 65&#37; &#8203;&#8203;&#40;87&#47;133&#41; of the participants&#46;</p><p id="para0023" class="elsevierStylePara elsevierViewall">For 38&#37; &#40;51&#47;133&#41; professionals&#44; the main barrier was &#8220;resistance from the teams of specialists involved in the case&#8221;&#46; This item was chosen by 73&#37; &#40;16&#47;22&#41; of the professionals from the oncologic PICU&#44; a different pattern from that observed in the other two hospitals&#59; 43&#37; &#40;16&#47;37&#41; and 26&#37; &#40;19&#47;74&#41; respectively &#40;<span class="elsevierStyleItalic">p</span> &#60; 0&#46;001&#41;&#46; Religious reasons&#44; both from patients and professionals&#44; were mentioned by 23&#37; of the participants&#46;</p><p id="para0024" class="elsevierStylePara elsevierViewall">The &#8220;difficulty in the clinical recognition of the patient&#39;s terminality&#8221; was reported in less than 14&#37; &#40;19&#47;133&#41; of the answers&#46; &#8220;Litigation fear&#8221;&#44; &#8220;lack of institutional support&#8221; or &#8220;resistance within the PICU team to EOLC decisions&#47;practices&#8221; were mentioned in approximately 20&#37; of the responses each&#46; Specifically considering the physicians&#39; responses&#44; &#8220;resistance within the PICU team itself&#8221; was identified as a barrier by 36&#37; &#40;17&#47;47&#41; of them&#44; while only 8&#37; &#40;7&#47;86&#41; of other HCPs had this perception &#40;<span class="elsevierStyleItalic">p</span> &#60; 0&#46;001&#41;&#46; Likewise&#44; the &#8220;litigation fear&#8221;&#44; pointed out by 36&#37; &#40;17&#47;47&#41; of the physicians&#44; was one of the reasons mentioned by only 8&#37; &#40;9&#47;86&#41; of the other HCPs &#40;<span class="elsevierStyleItalic">p</span> &#60; 0&#46;001&#41;&#46;</p></span><span id="sec0008" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0014">Decisions of withholding and withdrawing LST</span><p id="para0025" class="elsevierStylePara elsevierViewall">Participants were asked how confident or comfortable they felt about the decisions of withholding and withdrawing LST&#46; Considering the physicians&#39; perception that the resistance of the PICU team itself is an EOLC implementation barrier&#44; a comparison was made between physicians &#40;43 replies&#41; and other HCPs &#40;68 replies&#41; &#40;<a class="elsevierStyleCrossRef" href="#fig0002">Figure 2</a>&#41;&#46; Among the responses&#44; 67&#37; &#40;29&#47;43&#41; of physicians and 57&#37; &#40;39&#47;68&#41; of other HCPs felt more confident in non-escalating than in the withdrawal of LST&#44; even if it could prolong the patient&#39;s suffering &#40;<span class="elsevierStyleItalic">p</span>&#160;&#61;&#160;0&#46;68&#41;&#46;</p><elsevierMultimedia ident="fig0002"></elsevierMultimedia><p id="para0026" class="elsevierStylePara elsevierViewall">In a multiple choice question&#44; professionals picked the types of therapy they would withdraw &#40;<a class="elsevierStyleCrossRef" href="#fig0003">Figure 3</a>&#41;&#46; The physicians unanimously would not perform complementary exams&#44; unlike the other HCPs&#46; Similarly&#44; withdrawal of hemodynamic support&#44; whether pharmacological or mechanical &#40;ECMO&#41;&#44; was indicated by almost all physicians but less than half of the other HCPs&#46; Regarding mechanical ventilation&#44; there was no statistical difference between the two groups&#44; with half of the physicians agreeing with its withdrawal&#46; Stopping fluids was a very infrequent choice for both groups&#46;</p><elsevierMultimedia ident="fig0003"></elsevierMultimedia><p id="para0027" class="elsevierStylePara elsevierViewall">However&#44; when confronted with a fictitious clinical terminality scenario&#44; none of the physicians would remove ventilatory support&#58; 63&#37; &#40;30&#47;43&#41; would rather not escalate ventilatory settings&#59; 25&#37; &#40;12&#47;43&#41; of them would agree with adjusting ventilation upon clinical deterioration&#44; waiting for cardiorespiratory arrest&#44; with the agreement of 41&#37; &#40;36&#47;68&#41; of the other professionals&#46; None of the physicians would agree with palliative extubation&#44; albeit 5&#37; &#40;4&#47;68&#41; of the other HCPs would accept that&#46;</p><p id="para0028" class="elsevierStylePara elsevierViewall">Participants were asked if they had already participated in the decision-making process of withholding or withdrawing LST involving terminally ill children in the PICU&#59; 62&#37; &#40;84&#47;136&#41; reported having already participated&#46; Only 15&#37; &#40;21&#47;136&#41; already witnessed or had knowledge of palliative extubation in their unit&#46;</p></span><span id="sec0009" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0015">Creating memories and posturing after death</span><p id="para0029" class="elsevierStylePara elsevierViewall">Regarding the team&#39;s support for the family after death&#44; 61&#37; &#40;29&#47;48&#41; of physicians agree or totally agree with sending a letter of condolences&#44; but 54&#37; &#40;48&#47;89&#41; of other HCPs are neutral&#44; do not think it is necessary or disagree with the measure &#40;<span class="elsevierStyleItalic">p</span>&#160;&#61;&#160;0&#46;10&#41;&#46; As for a postmortem closure meeting with the families to review the child&#180;s PICU stay&#44; 35&#37; &#40;31&#47;89&#41; of the other HCPs see such meetings as not possible&#46; Only 10&#37; &#40;13&#47;136&#41; reported that this had already been done in their PICU&#46; As for a celebration of life or memorial service for the deceased children&#44; 14&#37; &#40;19&#47;136&#41; reported that it is a regular or sporadic practice&#46;</p></span></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0016">Discussion</span><p id="para0030" class="elsevierStylePara elsevierViewall">This study describes the results of a survey on practices surrounding EOLC by the multidisciplinary team of three Brazilian PICUs&#46; Most professionals have already witnessed withholding or withdrawal of LST without&#44; however&#44; adequate training in EOLC to feel comfortable with it themselves&#46; Discomfort with withdrawing treatment was evident&#44; with non-escalation being preferred&#46; This was especially evident by the physician&#39;s unanimity on not being comfortable with palliative extubation and the rarity of this procedure in their PICUs&#46; Even after the diagnosis of terminality and knowing that this could prolong the patient&#39;s suffering&#44; most professionals would maintain or even adjust ventilatory support&#46;</p><p id="para0031" class="elsevierStylePara elsevierViewall">There were some differences between the studied hospital&#39;s PICUs regarding EOLC practices&#46; At the private institution&#44; there was support for the limitation of LST&#44; however a greater resistance to removing LST and palliative extubation&#46; At the Oncologic PICU&#44; there was resistance to limitation and no support for the withdrawal of LST&#44; and no palliative care extubation had been witnessed&#46;</p><p id="para0032" class="elsevierStylePara elsevierViewall">Confidence and comfort with EOLC practices by PICU professionals were not statistically correlated to previous experiences or training in PICU in this small sample&#46; Communication skills between the multidisciplinary team&#44; the patient&#44; and the family are considered one of the relevant domains in the provision of EOLC <a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">15</span></a> and are recognized as a challenge by health professionals&#46; This training is associated with the acquisition of self-confidence&#44; controlling emotional reactions&#44; and improving teamwork&#46;<a class="elsevierStyleCrossRef" href="#bib0016"><span class="elsevierStyleSup">16</span></a> Lautrette et al&#46; in 2007<a class="elsevierStyleCrossRef" href="#bib0017"><span class="elsevierStyleSup">17</span></a> studied late family &#8220;end points&#8221; of a proactive communication strategy in EOL family conferences&#44; with a significant reduction of scores with specific training&#44; suggesting the benefit of EOLC training programs&#46; The National Curriculum Guidelines for the Undergraduate Course in Medicine recommended communication skills in its curriculum since 2001&#44; however&#44; teaching facilitated by communication skills simulation is still incipient&#46;<a class="elsevierStyleCrossRef" href="#bib0018"><span class="elsevierStyleSup">18</span></a> Few medical schools&#44; residencies&#44; and multidisciplinary programs have specific teaching in this area&#46;<a class="elsevierStyleCrossRef" href="#bib0019"><span class="elsevierStyleSup">19</span></a><a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">20</span></a> This study corroborates these findings and suggests the need to expand pediatric PC training programs for health professionals in Brazil&#46; Goals of care conversations between the PICU team and the family should incorporate details about advanced care planning and preferences of EOLC&#44;<a class="elsevierStyleCrossRef" href="#bib0021"><span class="elsevierStyleSup">21</span></a> including documenting choices regarding resuscitation&#44; invasive ventilation and even withdrawal of LST when certain circumstances arise&#46;<a class="elsevierStyleCrossRef" href="#bib0021"><span class="elsevierStyleSup">21</span></a> A Brazilian adult ICU study showed that the variability in EOLC is directly associated with differences in the characteristics of physicians&#44; with those who reported training in EOLC and PC showing a greater probability of applying to forgo LST measures and documenting a &#8220;do not resuscitate order&#8221; in medical records&#46;<a class="elsevierStyleCrossRef" href="#bib0022"><span class="elsevierStyleSup">22</span></a></p><p id="para0033" class="elsevierStylePara elsevierViewall">Although there is no ethical or legal difference between withholding or withdrawing therapies&#44;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a> most surveyed professionals felt more comfortable not starting or continuing something than suspending it&#44; even knowing that this could prolong suffering&#46; The act of withdrawal of LST holds the perception of taking an attitude that can &#8220;accelerate&#8221; death&#44; being often misinterpreted as euthanasia&#44; contrary to their professional values&#46;<a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a> When analyzing a fictitious scenario about a terminal patient&#44; this discomfort was evident with the unanimity among physicians not to perform palliative extubation&#44; a method acceptable by 5&#37; of other professionals&#46; And&#44; although all physicians agreed not to perform additional tests in patients undergoing EOLC&#44; 25&#37; of them and 42&#37; of other HCPs agreed with the alternative of adjusting the ventilatory parameters following laboratory exams&#44; waiting for an eventual cardiorespiratory arrest&#46; The fear of palliative extubation being interpreted as euthanasia&#44; an illegal practice in Brazil&#44; may be the underlying explanation for this practice since 36&#37; of physicians reported fear of legal consequences as one of the barriers to implementing EOLC&#46; It is noteworthy that the Brazilian legislation and the CFM &#40;Brazilian Council of Medicine&#41; support the implementation of palliative care &#40;including withholding and withdrawal of LST&#41; on irreversible life-threatening illness and terminally ill patients when the family agrees&#46;<a class="elsevierStyleCrossRef" href="#bib0023"><span class="elsevierStyleSup">23</span></a> The main barrier to the implementation of EOLC mentioned by 65&#37; of professionals was the resistance of families to discuss PC&#46; Brazilian studies have already pointed to a culture that considers parents unprepared to participate in the discussion about EOLC&#44; highlighting a paternalistic bias by the team&#46;<a class="elsevierStyleCrossRef" href="#bib0022"><span class="elsevierStyleSup">22</span></a> The presumption that the family does not have enough information or education&#44; combined with a lack of training in the PC approach by the team&#44; can aggravate and prolong the family&#39;s grief&#46;<a class="elsevierStyleCrossRef" href="#bib0024"><span class="elsevierStyleSup">24</span></a> Furthermore&#44; in Latin America&#44; there is a greater tendency to maintain rather than withdraw LST than in other parts of the world&#46;<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">25</span></a> This resistance to performing palliative extubation was also described in a Chilean pediatric study&#46;<a class="elsevierStyleCrossRef" href="#bib0026"><span class="elsevierStyleSup">26</span></a> In reality&#44; some pediatric Brazilian centers are already practicing palliative extubation&#44;<a class="elsevierStyleCrossRef" href="#bib0027"><span class="elsevierStyleSup">27</span></a><a class="elsevierStyleCrossRef" href="#bib0028"><span class="elsevierStyleSup">28</span></a> with a significant increase in the percentage of situations of forgoing LST in Brazil over the last 2 decades&#46; These findings signal that education and better knowledge&#44; associated with legislation changes&#44; may challenge the pervasive idea that the resistance to pursuing better EOLC is socio-cultural in nature&#46;<a class="elsevierStyleCrossRef" href="#bib0029"><span class="elsevierStyleSup">29</span></a> A recent study on EOLC practices in a Southern Brazilian PICU highlighted the presence of parents at the time of death in most cases&#44;<a class="elsevierStyleCrossRef" href="#bib0028"><span class="elsevierStyleSup">28</span></a> a significant change in practice&#46;</p><p id="para0034" class="elsevierStylePara elsevierViewall">In addition to the resistance of the families&#44; the resistance of the other specialists in initiating the discussion about EOLC planning was one of the main barriers highlighted&#44; being one of the particularities noted in the oncology hospital&#46; This difficulty in approaching EOLC for cancer patients is described worldwide&#44; often related to the paradoxical fear of bringing more suffering at the time of diagnosis or during cancer treatment&#46;<a class="elsevierStyleCrossRef" href="#bib0024"><span class="elsevierStyleSup">24</span></a> The emotional and clinical investment in the oncological patient and the complexity of the treatment may explain the professional&#39;s difficulty in accepting therapeutic exhaustion and terminality&#46;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">30</span></a></p><p id="para0035" class="elsevierStylePara elsevierViewall">This study showed that it was infrequent to contact the family after the death or to carry out any kind of memorial ceremony&#46; Unlike other professionals&#44; the physicians were willing and interested in contacting the families to review the death&#46; Not surprisingly&#44; 60&#37; of bereaved families in one study expressed a desire to meet with their child&#39;s intensivist in the weeks after death<a class="elsevierStyleCrossRef" href="#bib0031"><span class="elsevierStyleSup">31</span></a> to revisit their child&#39;s trajectory&#44; make sure the decisions were correctly made and give feedback to the medical team&#46; These meetings can clarify final events&#44; offer a sense of &#8220;closure&#8221;&#44; and are an important support for them&#46; They also provide an opportunity for evaluation of possible abnormal grief&#46; The holding of &#8220;celebration of life&#8221; or memorial services&#44; letters sending by the team&#44; and formal family follow-up by defined periods after the child&#39;s death in the PICU are common practices in North American centers but rarely practiced in Brazil&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a></p><span id="sec0011" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0017">Strengths and limitations</span><p id="para0036" class="elsevierStylePara elsevierViewall">This study has some limitations&#46; It included just three hospitals&#44; with a relatively low response rate&#44; in an economically developed urban area of Brazil&#44; perhaps not reflecting the reality of less privileged areas&#46; In some questions&#44; the interpretation of the statement may have influenced the participant&#39;s response&#46; Also&#44; local policies or guidelines about EOLC were not requested formally&#46; As a strength&#44; the survey was multidisciplinary&#44; properly tested and validated&#44; and included PICUs in hospitals with different models of care&#46;</p></span></span><span id="sec0012" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0018">Conclusion</span><p id="para0037" class="elsevierStylePara elsevierViewall">This study reveals that EOLC in Brazil has been carried out with professionals that feel rather unprepared for it&#46; They also expressed their preference for no escalation rather than withdrawal of LST&#44; which was corroborated by the finding that palliative extubation is still rarely performed&#46; After a child&#39;s death&#44; there is no culture of celebrating the child&#39;s life&#44; follow up&#44; or memory building&#46; These results point to the need to invest in education and research in this area&#46;</p></span></span>"
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        "resumen" => "<span id="abss0001" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0002">Objective</span><p id="spara005" class="elsevierStyleSimplePara elsevierViewall">Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment&#46; Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures&#46; This study aims to assess topics related to the end of life care in Brazilian pediatric intensive care units from the perspective of a multidisciplinary team&#46;</p></span> <span id="abss0002" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0003">Method</span><p id="spara006" class="elsevierStyleSimplePara elsevierViewall">The authors used a tested questionnaire&#44; utilizing Likert-style and open-ended questions&#46; After ethics committee approval&#44; it was sent by email from September to November&#47;2019 to three Pediatric Intensive Care Units in the South and Southeast of Brazil&#46; One unit was exclusively dedicated to oncology patients&#59; the others were mixed units&#46;</p></span> <span id="abss0003" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0004">Results</span><p id="spara007" class="elsevierStyleSimplePara elsevierViewall">From 144 surveys collected &#40;23&#37; response rate&#41; 136 were analyzed&#44; with 35&#37; physicians&#44; 30&#37; nurses&#44; 21&#37; nurse technicians&#44; and 14&#37; physiotherapists responding&#46; Overall&#44; only 12&#37; reported enough end-of-life care training and 40&#37; reported never having had any&#44; albeit this was not associated with the physician&#39;s confidence in forgoing life-sustaining treatment&#46; Furthermore&#44; 60&#37; of physicians and 46&#37; of other professionals were more comfortable with non-escalation than withdrawing therapies&#44; even if this could prolong suffering&#46; All physicians were uncomfortable with palliative extubation&#59; 15&#37; of all professionals have witnessed it&#46; The oncologic team uniquely felt that &#8220;resistance from the teams of specialists&#8221; was the main barrier to end-of-life care implementation&#46;</p></span> <span id="abss0004" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0005">Conclusion</span><p id="spara008" class="elsevierStyleSimplePara elsevierViewall">Most professionals felt unprepared to forego life-sustaining treatment&#46; Even for terminally ill patients&#44; withholding is preferred over the withdrawal of treatment&#46; Socio-cultural barriers and the lack of adequate training may be contributing to insecurity in the care of terminally ill patients&#44; diverging from practices in other countries&#46;</p></span>"
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                  \t\t\t\t\t\t</th><a name="en0003"></a><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Nurses &#40;41&#41;<a class="elsevierStyleCrossRef" href="#tb1fn1"><span class="elsevierStyleSup">1</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><a name="en0004"></a><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Physiotherapists &#40;19&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><a name="en0005"></a><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Nurse technicians &#40;28&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><a name="en0006"></a><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Totals<a class="elsevierStyleCrossRef" href="#tb1fn2"><span class="elsevierStyleSup">2</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><a name="en0007"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead colgroup " colspan="6" align="left" valign="top">Time from graduation</td></tr><tr title="table-row"><a name="en0008"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>&#8804; 5 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0009"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0010"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">22&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0011"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0012"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0013"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">42 &#40;31&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0014"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>5&#8211;9 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0015"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">16&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0016"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0017"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0018"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0019"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">39 &#40;29&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0020"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>10&#8211;19 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0021"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">19&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0022"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0023"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0024"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0025"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">40 &#40;30&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0026"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>&#8805; 20 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0027"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0028"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0029"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0030"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0031"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">14 &#40;10&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0032"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead colgroup " colspan="6" align="left" valign="top">Participation in end-of-life care cases</td></tr><tr title="table-row"><a name="en0033"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>Never participated&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0034"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0035"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0036"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0037"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">0&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0038"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">6 &#40;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0039"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>Only 1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0040"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0041"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0042"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0043"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0044"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">8 &#40;6&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0045"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>2 - 4 cases&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0046"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">16&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0047"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">22&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0048"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0049"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0050"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">52 &#40;38&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0051"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>5 - 9 cases&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0052"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">8&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0053"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0054"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0055"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0056"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">23 &#40;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0057"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>&#8805;10 cases&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0058"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">11&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0059"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0060"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">2&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0061"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0062"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">29 &#40;21&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0063"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>Do not know&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0064"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0065"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0066"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0067"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">5&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0068"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">18 &#40;13&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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          "identificador" => "cebibsec1"
          "bibliografiaReferencia" => array:31 [
            0 => array:3 [
              "identificador" => "bib0001"
              "etiqueta" => "1"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Death and dying over 30 years in the ICU&#58; personal reflection"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:1 [
                            0 => "A&#46;C&#46; Argent"
                          ]
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                    0 => array:2 [
                      "doi" => "10.1097/PCC.0000000000001480"
                      "Revista" => array:6 [
                        "tituloSerie" => "Pediatr Crit Care Med"
                        "fecha" => "2018"
                        "volumen" => "19"
                        "paginaInicial" => "S53"
                        "paginaFinal" => "S54"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/30080808"
                            "web" => "Medline"
                          ]
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              "etiqueta" => "2"
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                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Modes of death and the dying process in Brazilian PICU over the last 30 years&#58; personal reflections"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:1 [
                            0 => "J&#46;P&#46; Piva"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1097/PCC.0000000000001516"
                      "Revista" => array:7 [
                        "tituloSerie" => "Pediatr Crit Care Med"
                        "fecha" => "2018"
                        "volumen" => "19"
                        "paginaInicial" => "S59"
                        "paginaFinal" => "S60"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/30080811"
                            "web" => "Medline"
                          ]
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                          "pii" => "S0190962220310768"
                          "estado" => "S300"
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              "etiqueta" => "3"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Three decades of pediatric intensive care&#58; who was admitted&#44; what happened in intensive care&#44; and what happened afterward"
                      "autores" => array:1 [
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                          "etal" => true
                          "autores" => array:6 [
                            0 => "P&#46; Namachivayam"
                            1 => "F&#46; Shann"
                            2 => "L&#46; Shekerdemian"
                            3 => "A&#46; Taylor"
                            4 => "I&#46; van Sloten"
                            5 => "C&#46; Delzoppo"
                          ]
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Original article
End-of-life care in Brazilian Pediatric Intensive Care Units
Ian Teixeira e Sousaa,b,
Corresponding author
ian.sousa@ghc.com.br

Corresponding author.
, Cintia Tavares Cruzc, Leonardo Cavadas da Costa Soaresd,e, Grace van Leeuwenf, Daniel Garrosg,h
a Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, Brazil
b Unidade de Terapia Intensiva Pediátrica do Hospital Criança Conceição, Porto Alegre, RS, Brazil
c Hospital Infantil Sabará, São Paulo, SP, Brazil
d Universidade Federal do Paraná, Curitiba, PR, Brazil
e Hospital Pequeno Príncipe, Unidade de Cuidados Intensivos Cardiovasculares Pediátrica, Curitiba, PR, Brazil
f Weill Cornell Medicine - Qatar, Critical Care Division, Pediatric Critical Care Unit - Sidra Medicine, Doha, Qatar
g Stollery Children's Hospital Pediatric Intensive Care Unit, Edmonton, AB, Canada
h University of Alberta, Faculty of Medicine, Division of Critical Care, Dept of Pediatrics, Edmonton, Canada
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          "en" => "<p id="spara001" class="elsevierStyleSimplePara elsevierViewall">Physicians&#39; confidence for end-of-life care approach in relation to their practice time&#46;</p>"
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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0001" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0007">Introduction</span><p id="para0006" class="elsevierStylePara elsevierViewall">The many advances in Pediatric Critical Care over the last 30 years have allowed a substantial reduction in mortality<a class="elsevierStyleCrossRef" href="#bib0001"><span class="elsevierStyleSup">1</span></a><a class="elsevierStyleCrossRef" href="#bib0002"><span class="elsevierStyleSup">2</span></a> which now ranges between 2&#46;5 to 12&#37;&#44; depending on the part of the world analyzed&#46;<a class="elsevierStyleCrossRef" href="#bib0003"><span class="elsevierStyleSup">3</span></a><a class="elsevierStyleCrossRef" href="#bib0004"><span class="elsevierStyleSup">4</span></a></p><p id="para0007" class="elsevierStylePara elsevierViewall">What becomes even more relevant in the modern Pediatric Intensive Care Units &#40;PICUs&#41; is that most of the remaining deaths are not preceded by a sudden cardiac arrest&#44; but rather are the culmination of a defined end-of-life care &#40;EOLC&#41; plan within palliative care &#40;PC&#41; context&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a><a class="elsevierStyleCrossRef" href="#bib0006"><span class="elsevierStyleSup">6</span></a>The decisions leading to this planned ending usually follow an agreement between the healthcare team and the family&#46; These goals of care discussions lead to measures to forgo Life-Sustaining Treatment &#40;LST&#41; that include no-resuscitation and&#47;or no-escalation orders or even withdrawal of technological support&#44; medications&#44; and even hydration&#44; associated with multidisciplinary support for the family to comfort them&#44; including ceremonials and memories creation&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a></p><p id="para0008" class="elsevierStylePara elsevierViewall">Recent data from PICUs in Brazil reflect this trend&#44; with less than 50&#37; of deaths being a consequence of failed cardiopulmonary resuscitation&#46;<a class="elsevierStyleCrossRef" href="#bib0008"><span class="elsevierStyleSup">8</span></a><a class="elsevierStyleCrossRef" href="#bib0009"><span class="elsevierStyleSup">9</span></a> The &#8220;Conesul End-of-Life Study Group&#8221; and the American College of Critical Care Medicine recommend a systematic approach to EOLC focused on the patient and their family at all stages utilizing a PC approach&#46;<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">10</span></a><a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a>The objective of these procedures is to provide a dignified&#44; compassionate and&#44; above all&#44; humanized death in PICUs&#44; despite the high technological complexity that characterizes them&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a></p><p id="para0009" class="elsevierStylePara elsevierViewall">In this scenario&#44; the adequate preparation of multidisciplinary teams to achieve this objective is essential&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><a class="elsevierStyleCrossRef" href="#bib0012"><span class="elsevierStyleSup">12</span></a> When facing a patient considered terminal&#44; the care team members may be subject to intense emotional suffering&#44; associated with ethical dilemmas and conflicts of a social and&#47;or religious nature with families and teams&#46;<a class="elsevierStyleCrossRef" href="#bib0012"><span class="elsevierStyleSup">12</span></a></p><p id="para0010" class="elsevierStylePara elsevierViewall">The present study aims to investigate the perspectives of Brazilian PICU professionals about EOLC&#44; including decision-making&#44; bereavement&#44; and family support&#44; in order to promote a national debate on palliative care practices&#46;</p></span><span id="sec0002" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0008">Methods</span><p id="para0011" class="elsevierStylePara elsevierViewall">This is a cross-sectional study applied in PICUs of three different hospitals from the South and Southeast of Brazil&#58; two mixed PICUs&#44; one with 46 beds and the other with 68 beds&#44; both with cardiac postoperative care&#44; and one at an oncologic hospital with 7 beds&#46; All hospitals offer organ transplant programs and the two general PICUs have ECMO &#40;Extracorporeal Membrane Oxygenation&#41; programs&#46; The oncologic PICU and one of the general PICUs are part of public hospitals&#44; and the other general unit is part of a private hospital&#46; They were chosen for convenience&#44; aiming to capture the perspective of healthcare professionals working in tertiary&#47;quaternary units&#46;</p><p id="para0012" class="elsevierStylePara elsevierViewall">The participation was voluntary&#44; anonymous and without monetary incentive&#46; The study was reviewed and approved by the coordinating entity and its ethics committees &#40;Instituto PENSI - Pesquisa e Ensino em Sa&#250;de Infantil&#59; CAAE n&#186; 06681119&#46;7&#46;0000&#46;5567&#41;&#46;</p><p id="para0013" class="elsevierStylePara elsevierViewall">The questionnaire was prepared using the Google Forms&#174; platform &#40;Mountain View&#44; CA&#44; USA&#41;&#44; with its content validity evaluated and approved by 12 PICU experts&#44; using the methodology described by Burns et al&#46;<a class="elsevierStyleCrossRef" href="#bib0013"><span class="elsevierStyleSup">13</span></a> Its final version contains 37 questions &#40;34 multiple-choice and 3 free texts&#41;&#58; 6 about training and personal experience&#59; 6 evaluating the team&#39;s thoughts about the ideal practice&#59; 3 exploring the professional&#39;s comfort level with decision-making&#59; 6 about the existing EOLC model&#59; 4 addressing family communication&#59; 4 evaluating care after support limitation&#47;withdrawal and death&#59; 8 about demographic information &#40;personal and institutional&#41; &#40;<a class="elsevierStyleCrossRef" href="#sec0013">Supplemental Content</a>&#41;&#46;</p><p id="para0014" class="elsevierStylePara elsevierViewall">The survey was distributed between 09&#47;25&#47;2019 and 12&#47;15&#47;2019&#44; by email&#46; Managers were encouraged to send three monthly reminders&#46; This publication describes a portion of the data obtained&#44; to be complemented by future publications&#46;</p><p id="para0015" class="elsevierStylePara elsevierViewall">For better understanding and respecting the decision-making roles&#44; most of the answers were divided between physicians versus other Health Care Professionals &#40;HCPs&#41; of the multidisciplinary team &#40;nurses&#44; respiratory therapists&#44; and nursing technicians&#41;&#46; When relevant&#44; the authors report the responses globally&#44; that is&#44; referring to &#8220;all professionals&#8221;&#46;</p><span id="sec0003" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0009">Statistical analysis</span><p id="para0016" class="elsevierStylePara elsevierViewall">The results obtained were tabulated using the Google Sheets&#174; platform &#40;Mountain View&#44; CA&#44; USA&#41;&#46; Categorical variables were expressed as percentages or in descriptive form&#44; compared with each other using the chi-square or Fisher&#39;s test&#44; according to applicability&#46; Univariate regressions were performed to assess the strength of the association between responses&#46; Statistical analysis was performed using the R language version 3&#46;5&#46;2&#46;<a class="elsevierStyleCrossRef" href="#bib0014"><span class="elsevierStyleSup">14</span></a></p></span></span><span id="sec0004" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0010">Results</span><p id="para0017" class="elsevierStylePara elsevierViewall">The three hospitals involved in this research have 626 professionals working in PICUs&#58; 156 physicians &#40;25&#37;&#41;&#44; 405 nurses and nursing technicians &#40;65&#37;&#41;&#44; 40 physiotherapists &#40;6&#37;&#41; and 25 other professionals &#40;4&#37;&#41;&#46;</p><p id="para0018" class="elsevierStylePara elsevierViewall">The authors obtained 144 responses &#40;23&#37; response rate&#41;&#46; Six questionnaires were excluded from the analysis&#44; due to the low representation of their professional class in the general sample &#40;three social workers&#44; one pharmacist&#44; one nutritionist and one psychologist&#41;&#46; Two questionnaires were excluded because they were incomplete&#44; with the final sample consisting of 136 questionnaires&#46;</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0011">Participants profile</span><p id="para0019" class="elsevierStylePara elsevierViewall"><a class="elsevierStyleCrossRef" href="#tbl0001">Table 1</a> details the 136 participants included&#44; broken down by profession&#44; time since graduation and their involvement in EOLC cases&#46;</p><elsevierMultimedia ident="tbl0001"></elsevierMultimedia></span><span id="sec0006" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0012">Confidence in EOLC approach</span><p id="para0020" class="elsevierStylePara elsevierViewall">The questionnaire evaluated the professionals&#39; self-reported confidence and comfort in carrying out Goals of Care meetings with the patient&#39;s family members&#46; Among physicians&#44; there is a trend to greater confidence in the elaboration of an EOLC plan according to their practice time &#40;<a class="elsevierStyleCrossRef" href="#fig0001">Figure 1</a>&#41;&#46; When asked about the reason for their insecurity&#44; 18 of the 20 physicians agreed with the statement &#8220;<span class="elsevierStyleItalic">I believe these conversations are important&#44; but I don&#39;t feel technically prepared for this type of conversation</span>&#8221;&#46;</p><elsevierMultimedia ident="fig0001"></elsevierMultimedia><p id="para0021" class="elsevierStylePara elsevierViewall">Through univariate regressions compared with other HCPs&#44; physicians were 3&#46;45 times more likely to feel confident in relation to EOLC participation &#40;<span class="elsevierStyleItalic">p</span> &#60; 0&#46;001&#41;&#46; Less than 50&#37; of the total group answered that they had some training focused on EOLC&#44; however&#44; considering it insufficient for their practice&#59; 46&#37; &#40;22&#47;48&#41; physicians and 36&#37; &#40;32&#47;89&#41; of the other HCPs reported never having had any training in this area&#46; Only 6&#37; &#40;3&#47;48&#41; of physicians reported that they had sufficient training to conduct EOLC&#46;</p></span><span id="sec0007" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0013">Barriers to EOLC implementation</span><p id="para0022" class="elsevierStylePara elsevierViewall">In a multiple-choice question&#44; participants were asked about the main barriers to EOLC implementation&#44; with 133 responses and 3 abstentions&#46; &#8220;Cultural&#47;social&#8221; difficulties are the biggest obstacle&#44; with &#8220;difficulty&#47;resistance of families to approach this subject&#8221; as the reason mentioned by 65&#37; &#8203;&#8203;&#40;87&#47;133&#41; of the participants&#46;</p><p id="para0023" class="elsevierStylePara elsevierViewall">For 38&#37; &#40;51&#47;133&#41; professionals&#44; the main barrier was &#8220;resistance from the teams of specialists involved in the case&#8221;&#46; This item was chosen by 73&#37; &#40;16&#47;22&#41; of the professionals from the oncologic PICU&#44; a different pattern from that observed in the other two hospitals&#59; 43&#37; &#40;16&#47;37&#41; and 26&#37; &#40;19&#47;74&#41; respectively &#40;<span class="elsevierStyleItalic">p</span> &#60; 0&#46;001&#41;&#46; Religious reasons&#44; both from patients and professionals&#44; were mentioned by 23&#37; of the participants&#46;</p><p id="para0024" class="elsevierStylePara elsevierViewall">The &#8220;difficulty in the clinical recognition of the patient&#39;s terminality&#8221; was reported in less than 14&#37; &#40;19&#47;133&#41; of the answers&#46; &#8220;Litigation fear&#8221;&#44; &#8220;lack of institutional support&#8221; or &#8220;resistance within the PICU team to EOLC decisions&#47;practices&#8221; were mentioned in approximately 20&#37; of the responses each&#46; Specifically considering the physicians&#39; responses&#44; &#8220;resistance within the PICU team itself&#8221; was identified as a barrier by 36&#37; &#40;17&#47;47&#41; of them&#44; while only 8&#37; &#40;7&#47;86&#41; of other HCPs had this perception &#40;<span class="elsevierStyleItalic">p</span> &#60; 0&#46;001&#41;&#46; Likewise&#44; the &#8220;litigation fear&#8221;&#44; pointed out by 36&#37; &#40;17&#47;47&#41; of the physicians&#44; was one of the reasons mentioned by only 8&#37; &#40;9&#47;86&#41; of the other HCPs &#40;<span class="elsevierStyleItalic">p</span> &#60; 0&#46;001&#41;&#46;</p></span><span id="sec0008" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0014">Decisions of withholding and withdrawing LST</span><p id="para0025" class="elsevierStylePara elsevierViewall">Participants were asked how confident or comfortable they felt about the decisions of withholding and withdrawing LST&#46; Considering the physicians&#39; perception that the resistance of the PICU team itself is an EOLC implementation barrier&#44; a comparison was made between physicians &#40;43 replies&#41; and other HCPs &#40;68 replies&#41; &#40;<a class="elsevierStyleCrossRef" href="#fig0002">Figure 2</a>&#41;&#46; Among the responses&#44; 67&#37; &#40;29&#47;43&#41; of physicians and 57&#37; &#40;39&#47;68&#41; of other HCPs felt more confident in non-escalating than in the withdrawal of LST&#44; even if it could prolong the patient&#39;s suffering &#40;<span class="elsevierStyleItalic">p</span>&#160;&#61;&#160;0&#46;68&#41;&#46;</p><elsevierMultimedia ident="fig0002"></elsevierMultimedia><p id="para0026" class="elsevierStylePara elsevierViewall">In a multiple choice question&#44; professionals picked the types of therapy they would withdraw &#40;<a class="elsevierStyleCrossRef" href="#fig0003">Figure 3</a>&#41;&#46; The physicians unanimously would not perform complementary exams&#44; unlike the other HCPs&#46; Similarly&#44; withdrawal of hemodynamic support&#44; whether pharmacological or mechanical &#40;ECMO&#41;&#44; was indicated by almost all physicians but less than half of the other HCPs&#46; Regarding mechanical ventilation&#44; there was no statistical difference between the two groups&#44; with half of the physicians agreeing with its withdrawal&#46; Stopping fluids was a very infrequent choice for both groups&#46;</p><elsevierMultimedia ident="fig0003"></elsevierMultimedia><p id="para0027" class="elsevierStylePara elsevierViewall">However&#44; when confronted with a fictitious clinical terminality scenario&#44; none of the physicians would remove ventilatory support&#58; 63&#37; &#40;30&#47;43&#41; would rather not escalate ventilatory settings&#59; 25&#37; &#40;12&#47;43&#41; of them would agree with adjusting ventilation upon clinical deterioration&#44; waiting for cardiorespiratory arrest&#44; with the agreement of 41&#37; &#40;36&#47;68&#41; of the other professionals&#46; None of the physicians would agree with palliative extubation&#44; albeit 5&#37; &#40;4&#47;68&#41; of the other HCPs would accept that&#46;</p><p id="para0028" class="elsevierStylePara elsevierViewall">Participants were asked if they had already participated in the decision-making process of withholding or withdrawing LST involving terminally ill children in the PICU&#59; 62&#37; &#40;84&#47;136&#41; reported having already participated&#46; Only 15&#37; &#40;21&#47;136&#41; already witnessed or had knowledge of palliative extubation in their unit&#46;</p></span><span id="sec0009" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0015">Creating memories and posturing after death</span><p id="para0029" class="elsevierStylePara elsevierViewall">Regarding the team&#39;s support for the family after death&#44; 61&#37; &#40;29&#47;48&#41; of physicians agree or totally agree with sending a letter of condolences&#44; but 54&#37; &#40;48&#47;89&#41; of other HCPs are neutral&#44; do not think it is necessary or disagree with the measure &#40;<span class="elsevierStyleItalic">p</span>&#160;&#61;&#160;0&#46;10&#41;&#46; As for a postmortem closure meeting with the families to review the child&#180;s PICU stay&#44; 35&#37; &#40;31&#47;89&#41; of the other HCPs see such meetings as not possible&#46; Only 10&#37; &#40;13&#47;136&#41; reported that this had already been done in their PICU&#46; As for a celebration of life or memorial service for the deceased children&#44; 14&#37; &#40;19&#47;136&#41; reported that it is a regular or sporadic practice&#46;</p></span></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0016">Discussion</span><p id="para0030" class="elsevierStylePara elsevierViewall">This study describes the results of a survey on practices surrounding EOLC by the multidisciplinary team of three Brazilian PICUs&#46; Most professionals have already witnessed withholding or withdrawal of LST without&#44; however&#44; adequate training in EOLC to feel comfortable with it themselves&#46; Discomfort with withdrawing treatment was evident&#44; with non-escalation being preferred&#46; This was especially evident by the physician&#39;s unanimity on not being comfortable with palliative extubation and the rarity of this procedure in their PICUs&#46; Even after the diagnosis of terminality and knowing that this could prolong the patient&#39;s suffering&#44; most professionals would maintain or even adjust ventilatory support&#46;</p><p id="para0031" class="elsevierStylePara elsevierViewall">There were some differences between the studied hospital&#39;s PICUs regarding EOLC practices&#46; At the private institution&#44; there was support for the limitation of LST&#44; however a greater resistance to removing LST and palliative extubation&#46; At the Oncologic PICU&#44; there was resistance to limitation and no support for the withdrawal of LST&#44; and no palliative care extubation had been witnessed&#46;</p><p id="para0032" class="elsevierStylePara elsevierViewall">Confidence and comfort with EOLC practices by PICU professionals were not statistically correlated to previous experiences or training in PICU in this small sample&#46; Communication skills between the multidisciplinary team&#44; the patient&#44; and the family are considered one of the relevant domains in the provision of EOLC <a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">15</span></a> and are recognized as a challenge by health professionals&#46; This training is associated with the acquisition of self-confidence&#44; controlling emotional reactions&#44; and improving teamwork&#46;<a class="elsevierStyleCrossRef" href="#bib0016"><span class="elsevierStyleSup">16</span></a> Lautrette et al&#46; in 2007<a class="elsevierStyleCrossRef" href="#bib0017"><span class="elsevierStyleSup">17</span></a> studied late family &#8220;end points&#8221; of a proactive communication strategy in EOL family conferences&#44; with a significant reduction of scores with specific training&#44; suggesting the benefit of EOLC training programs&#46; The National Curriculum Guidelines for the Undergraduate Course in Medicine recommended communication skills in its curriculum since 2001&#44; however&#44; teaching facilitated by communication skills simulation is still incipient&#46;<a class="elsevierStyleCrossRef" href="#bib0018"><span class="elsevierStyleSup">18</span></a> Few medical schools&#44; residencies&#44; and multidisciplinary programs have specific teaching in this area&#46;<a class="elsevierStyleCrossRef" href="#bib0019"><span class="elsevierStyleSup">19</span></a><a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">20</span></a> This study corroborates these findings and suggests the need to expand pediatric PC training programs for health professionals in Brazil&#46; Goals of care conversations between the PICU team and the family should incorporate details about advanced care planning and preferences of EOLC&#44;<a class="elsevierStyleCrossRef" href="#bib0021"><span class="elsevierStyleSup">21</span></a> including documenting choices regarding resuscitation&#44; invasive ventilation and even withdrawal of LST when certain circumstances arise&#46;<a class="elsevierStyleCrossRef" href="#bib0021"><span class="elsevierStyleSup">21</span></a> A Brazilian adult ICU study showed that the variability in EOLC is directly associated with differences in the characteristics of physicians&#44; with those who reported training in EOLC and PC showing a greater probability of applying to forgo LST measures and documenting a &#8220;do not resuscitate order&#8221; in medical records&#46;<a class="elsevierStyleCrossRef" href="#bib0022"><span class="elsevierStyleSup">22</span></a></p><p id="para0033" class="elsevierStylePara elsevierViewall">Although there is no ethical or legal difference between withholding or withdrawing therapies&#44;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a> most surveyed professionals felt more comfortable not starting or continuing something than suspending it&#44; even knowing that this could prolong suffering&#46; The act of withdrawal of LST holds the perception of taking an attitude that can &#8220;accelerate&#8221; death&#44; being often misinterpreted as euthanasia&#44; contrary to their professional values&#46;<a class="elsevierStyleCrossRef" href="#bib0011"><span class="elsevierStyleSup">11</span></a> When analyzing a fictitious scenario about a terminal patient&#44; this discomfort was evident with the unanimity among physicians not to perform palliative extubation&#44; a method acceptable by 5&#37; of other professionals&#46; And&#44; although all physicians agreed not to perform additional tests in patients undergoing EOLC&#44; 25&#37; of them and 42&#37; of other HCPs agreed with the alternative of adjusting the ventilatory parameters following laboratory exams&#44; waiting for an eventual cardiorespiratory arrest&#46; The fear of palliative extubation being interpreted as euthanasia&#44; an illegal practice in Brazil&#44; may be the underlying explanation for this practice since 36&#37; of physicians reported fear of legal consequences as one of the barriers to implementing EOLC&#46; It is noteworthy that the Brazilian legislation and the CFM &#40;Brazilian Council of Medicine&#41; support the implementation of palliative care &#40;including withholding and withdrawal of LST&#41; on irreversible life-threatening illness and terminally ill patients when the family agrees&#46;<a class="elsevierStyleCrossRef" href="#bib0023"><span class="elsevierStyleSup">23</span></a> The main barrier to the implementation of EOLC mentioned by 65&#37; of professionals was the resistance of families to discuss PC&#46; Brazilian studies have already pointed to a culture that considers parents unprepared to participate in the discussion about EOLC&#44; highlighting a paternalistic bias by the team&#46;<a class="elsevierStyleCrossRef" href="#bib0022"><span class="elsevierStyleSup">22</span></a> The presumption that the family does not have enough information or education&#44; combined with a lack of training in the PC approach by the team&#44; can aggravate and prolong the family&#39;s grief&#46;<a class="elsevierStyleCrossRef" href="#bib0024"><span class="elsevierStyleSup">24</span></a> Furthermore&#44; in Latin America&#44; there is a greater tendency to maintain rather than withdraw LST than in other parts of the world&#46;<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">25</span></a> This resistance to performing palliative extubation was also described in a Chilean pediatric study&#46;<a class="elsevierStyleCrossRef" href="#bib0026"><span class="elsevierStyleSup">26</span></a> In reality&#44; some pediatric Brazilian centers are already practicing palliative extubation&#44;<a class="elsevierStyleCrossRef" href="#bib0027"><span class="elsevierStyleSup">27</span></a><a class="elsevierStyleCrossRef" href="#bib0028"><span class="elsevierStyleSup">28</span></a> with a significant increase in the percentage of situations of forgoing LST in Brazil over the last 2 decades&#46; These findings signal that education and better knowledge&#44; associated with legislation changes&#44; may challenge the pervasive idea that the resistance to pursuing better EOLC is socio-cultural in nature&#46;<a class="elsevierStyleCrossRef" href="#bib0029"><span class="elsevierStyleSup">29</span></a> A recent study on EOLC practices in a Southern Brazilian PICU highlighted the presence of parents at the time of death in most cases&#44;<a class="elsevierStyleCrossRef" href="#bib0028"><span class="elsevierStyleSup">28</span></a> a significant change in practice&#46;</p><p id="para0034" class="elsevierStylePara elsevierViewall">In addition to the resistance of the families&#44; the resistance of the other specialists in initiating the discussion about EOLC planning was one of the main barriers highlighted&#44; being one of the particularities noted in the oncology hospital&#46; This difficulty in approaching EOLC for cancer patients is described worldwide&#44; often related to the paradoxical fear of bringing more suffering at the time of diagnosis or during cancer treatment&#46;<a class="elsevierStyleCrossRef" href="#bib0024"><span class="elsevierStyleSup">24</span></a> The emotional and clinical investment in the oncological patient and the complexity of the treatment may explain the professional&#39;s difficulty in accepting therapeutic exhaustion and terminality&#46;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">30</span></a></p><p id="para0035" class="elsevierStylePara elsevierViewall">This study showed that it was infrequent to contact the family after the death or to carry out any kind of memorial ceremony&#46; Unlike other professionals&#44; the physicians were willing and interested in contacting the families to review the death&#46; Not surprisingly&#44; 60&#37; of bereaved families in one study expressed a desire to meet with their child&#39;s intensivist in the weeks after death<a class="elsevierStyleCrossRef" href="#bib0031"><span class="elsevierStyleSup">31</span></a> to revisit their child&#39;s trajectory&#44; make sure the decisions were correctly made and give feedback to the medical team&#46; These meetings can clarify final events&#44; offer a sense of &#8220;closure&#8221;&#44; and are an important support for them&#46; They also provide an opportunity for evaluation of possible abnormal grief&#46; The holding of &#8220;celebration of life&#8221; or memorial services&#44; letters sending by the team&#44; and formal family follow-up by defined periods after the child&#39;s death in the PICU are common practices in North American centers but rarely practiced in Brazil&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a></p><span id="sec0011" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0017">Strengths and limitations</span><p id="para0036" class="elsevierStylePara elsevierViewall">This study has some limitations&#46; It included just three hospitals&#44; with a relatively low response rate&#44; in an economically developed urban area of Brazil&#44; perhaps not reflecting the reality of less privileged areas&#46; In some questions&#44; the interpretation of the statement may have influenced the participant&#39;s response&#46; Also&#44; local policies or guidelines about EOLC were not requested formally&#46; As a strength&#44; the survey was multidisciplinary&#44; properly tested and validated&#44; and included PICUs in hospitals with different models of care&#46;</p></span></span><span id="sec0012" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0018">Conclusion</span><p id="para0037" class="elsevierStylePara elsevierViewall">This study reveals that EOLC in Brazil has been carried out with professionals that feel rather unprepared for it&#46; They also expressed their preference for no escalation rather than withdrawal of LST&#44; which was corroborated by the finding that palliative extubation is still rarely performed&#46; After a child&#39;s death&#44; there is no culture of celebrating the child&#39;s life&#44; follow up&#44; or memory building&#46; These results point to the need to invest in education and research in this area&#46;</p></span></span>"
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              "titulo" => "Participants profile"
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            1 => array:2 [
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              "titulo" => "Confidence in EOLC approach"
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            2 => array:2 [
              "identificador" => "sec0007"
              "titulo" => "Barriers to EOLC implementation"
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            3 => array:2 [
              "identificador" => "sec0008"
              "titulo" => "Decisions of withholding and withdrawing LST"
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            4 => array:2 [
              "identificador" => "sec0009"
              "titulo" => "Creating memories and posturing after death"
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          "titulo" => "Discussion"
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          "titulo" => "Acknowledgments"
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          "titulo" => "References"
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      ]
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    "pdfFichero" => "main.pdf"
    "tienePdf" => true
    "fechaRecibido" => "2022-09-04"
    "fechaAceptado" => "2023-02-23"
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        0 => array:4 [
          "clase" => "keyword"
          "titulo" => "KEYWORDS"
          "identificador" => "xpalclavsec1668919"
          "palabras" => array:5 [
            0 => "Terminal care"
            1 => "End-of-life care"
            2 => "Biomedical ethics"
            3 => "Palliative care"
            4 => "Pediatric intensive care units"
          ]
        ]
      ]
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    "resumen" => array:1 [
      "en" => array:3 [
        "titulo" => "Abstract"
        "resumen" => "<span id="abss0001" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0002">Objective</span><p id="spara005" class="elsevierStyleSimplePara elsevierViewall">Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment&#46; Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures&#46; This study aims to assess topics related to the end of life care in Brazilian pediatric intensive care units from the perspective of a multidisciplinary team&#46;</p></span> <span id="abss0002" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0003">Method</span><p id="spara006" class="elsevierStyleSimplePara elsevierViewall">The authors used a tested questionnaire&#44; utilizing Likert-style and open-ended questions&#46; After ethics committee approval&#44; it was sent by email from September to November&#47;2019 to three Pediatric Intensive Care Units in the South and Southeast of Brazil&#46; One unit was exclusively dedicated to oncology patients&#59; the others were mixed units&#46;</p></span> <span id="abss0003" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0004">Results</span><p id="spara007" class="elsevierStyleSimplePara elsevierViewall">From 144 surveys collected &#40;23&#37; response rate&#41; 136 were analyzed&#44; with 35&#37; physicians&#44; 30&#37; nurses&#44; 21&#37; nurse technicians&#44; and 14&#37; physiotherapists responding&#46; Overall&#44; only 12&#37; reported enough end-of-life care training and 40&#37; reported never having had any&#44; albeit this was not associated with the physician&#39;s confidence in forgoing life-sustaining treatment&#46; Furthermore&#44; 60&#37; of physicians and 46&#37; of other professionals were more comfortable with non-escalation than withdrawing therapies&#44; even if this could prolong suffering&#46; All physicians were uncomfortable with palliative extubation&#59; 15&#37; of all professionals have witnessed it&#46; The oncologic team uniquely felt that &#8220;resistance from the teams of specialists&#8221; was the main barrier to end-of-life care implementation&#46;</p></span> <span id="abss0004" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="cesectitle0005">Conclusion</span><p id="spara008" class="elsevierStyleSimplePara elsevierViewall">Most professionals felt unprepared to forego life-sustaining treatment&#46; Even for terminally ill patients&#44; withholding is preferred over the withdrawal of treatment&#46; Socio-cultural barriers and the lack of adequate training may be contributing to insecurity in the care of terminally ill patients&#44; diverging from practices in other countries&#46;</p></span>"
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        "nota" => "<p class="elsevierStyleNotepara" id="notep0001">Institution to which the work is linked&#58; Instituto PENSI - Funda&#231;&#227;o Jos&#233; Luiz Egydio Setubal&#46;</p>"
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        "tipo" => "MULTIMEDIAFIGURA"
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          "en" => "<p id="spara002" class="elsevierStyleSimplePara elsevierViewall">Confidence in withholding and&#47;or withdrawing LST&#46;</p>"
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          "en" => "<p id="spara003" class="elsevierStyleSimplePara elsevierViewall">Types of therapies agreed to be withheld or withdrawn&#46; &#42;&#58; <span class="elsevierStyleItalic">p</span> &#60; 0&#44;05&#59; &#42;&#42;&#58; <span class="elsevierStyleItalic">p</span> &#60; 0&#44;01&#59; ECMO&#61; Extracorporeal membrane oxygenation&#46;</p>"
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                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><a name="en0002"></a><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Physicians &#40;48&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><a name="en0003"></a><th class="td" title="\n
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                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Nurses &#40;41&#41;<a class="elsevierStyleCrossRef" href="#tb1fn1"><span class="elsevierStyleSup">1</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><a name="en0004"></a><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Physiotherapists &#40;19&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><a name="en0005"></a><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Nurse technicians &#40;28&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t  " align="" valign="top" scope="col" style="border-bottom: 2px solid black">Totals<a class="elsevierStyleCrossRef" href="#tb1fn2"><span class="elsevierStyleSup">2</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><a name="en0007"></a><td class="td-with-role" title="\n
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                  \t\t\t\t ; entry_with_role_rowhead colgroup " colspan="6" align="left" valign="top">Time from graduation</td></tr><tr title="table-row"><a name="en0008"></a><td class="td-with-role" title="\n
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                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>&#8804; 5 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0009"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0010"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">22&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0011"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0012"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0013"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">42 &#40;31&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0014"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>5&#8211;9 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0015"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">16&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0016"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0017"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">9&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0018"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0019"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">39 &#40;29&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0020"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>10&#8211;19 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0021"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">19&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0022"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">7&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0023"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0024"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">10&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0025"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">40 &#40;30&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0026"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>&#8805; 20 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0027"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">6&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0028"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0029"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">3&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0030"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0031"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">14 &#40;10&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><a name="en0032"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead colgroup " colspan="6" align="left" valign="top">Participation in end-of-life care cases</td></tr><tr title="table-row"><a name="en0033"></a><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="" valign="top"><span class="elsevierStyleHsp" style=""></span>Never participated&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0034"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">4&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0035"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">1&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><a name="en0036"></a><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="" valign="top">1&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t  " align="" valign="top">6 &#40;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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Article information
ISSN: 00217557
Original language: English
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Jornal de Pediatria (English Edition)
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