Continuous Palliative Sedation Research Articles

Continuous Sedation in Palliative Care in Portugal: A Prospective Multicentric Study.

Objective: This study aimed to survey the practice of palliative sedation in Portugal, where data on this subject were lacking. Methods: This was a prospective multicentric study that included all patients admitted to each team that agreed to participate. Patients were followed until death, discharge, or after 3 months of follow-up. Results: The study included 8 teams: 4 as palliative care units (PCU), 1 as a hospital palliative care team (HPCT), 2 as home care (HC), and 1 as HPCT and HC. Of the 361 patients enrolled, 52% were male, the median age was 76 years, and 285 (79%) had cancer. Continuous sedation was undergone by 49 (14%) patients: 26 (53%) were male, and the median age was 76. Most patients, 46 (94%), had an oncological diagnosis. Only in a minority of cases, the family, 16 (33%), or the patient, 5 (10%), participated in the decision to sedate. Delirium was the most frequent symptom leading to sedation. The medication most used was midazolam (65%). In the multivariable analysis, only age and the combined score were independently associated with sedation; patients <76 years and those with higher levels of suffering had a higher probability of being sedated. Conclusions: The practice of continuous palliative sedation in Portugal is within the range reported in other studies. One particularly relevant point was the low participation of patients and their families in the decision-making process. Each team must have a deep discussion on this aspect.

Continuous palliative sedation until death: a qualitative study of palliative care clinicians' experiences.

The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. We conducted a qualitative study based on focus group discussions. We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

Continuous palliative sedation in terminally ill patients with cancer: a retrospective observational cohort study from a Chinese palliative care unit

ObjectiveThis study aimed to describe a 4-year practice of continuous palliative sedation (CPS) in a palliative medicine ward of an academic hospital in China. To compare the survival time of...

Dyspnea in Oncological Patients: a Brain Teaser.

Dyspnea is one of the most common symptoms in oncological patients with greater prevalence in lung cancer and advanced disease states. Causes of dyspnea can be directly or indirectly associated with cancer, anti-neoplastic therapies and comorbidities unrelated to cancer. Routine screening of dyspnea is suggested for all oncological patients by using unidimensional, simple scales and multidimensional tools to capture more domains affected by this symptom and to assess the effectiveness of interventions. The first step in the treatment algorithm of dyspnea is the identification of potentially reversible causes; if no specific cause is depicted, symptomatic treatment with non-pharmacological and pharmacological interventions is suggested. Referral to palliative care and continuous palliative sedation are the last resort in patients with a very limited life expectancy of not more than a few days for symptomatic relief and to decrease of the distress of patients and caregivers.

A Pragmatic Review of the General Population’s Attitude, Knowledge and Representations with Regard to Continuous Palliative Sedation

Continuous palliative sedation is an end-of-life practice that consists of inducing a state of unconsciousness in patients who are approaching death to relieve them of severe and refractory symptoms. The Act Respecting End-of-life Care has provided a framework for continuous palliative sedation in the Canadian province of Quebec since 2015. Understanding the general population’s complex attitudes, and knowledge and representations with respect to continuous palliative sedation can contribute to more informed end-of-life care decision-making. Social workers play a crucial role in promoting and implementing enlightened end-of-life choices. The aim of this paper is to explore the general population’s attitude, knowledge and representations with regard to continuous palliative sedation. We used a pragmatic methodology, seeking to explore a real-life knowledge gap while considering resource and time constraints. Two research team members independently selected related studies and extracted their content. We included eight articles involving a total of 18,961 participants. Participants with a positive attitude towards continuous palliative sedation represented 25% to 81% of the study populations. Attitude seems positively affected by the use of euphemisms (i.e. sleep) to describe the intervention. The term “continuous palliative sedation” is unfamiliar to most and is often confused with euthanasia. In the discussion, we offer recommendations for social workers when accompanying patients and families in making end-of-life decisions.

Do Socioeconomic Factors Influence Knowledge, Attitudes, and Representations of End-of-Life Practices? A Cross-Sectional Study.

Access to palliative and end-of-life (EOL) care might be influenced by knowledge, attitudes, and representations of these practices. Socioeconomic factors might then affect what people know about EOL care practices, and how they perceive them. This study aims to compare knowledge, attitudes, and representations regarding EOL practices including assisted suicide, medical assistance in dying, and continuous palliative sedation of adults, according to socioeconomic variables. A cross-sectional community-based questionnaire study featuring two evolving vignettes and five end-of-life practices was conducted in Quebec, Canada. Three sample subgroups were created according to the participants' perceived financial situation and three according to educational attainment. Descriptive analysis was used to compare levels of knowledge, attitudes, and representations between the subgroups. Nine hundred sixty-six (966) people completed the questionnaire. Two hundred and seventy participants (28.7%) had a high school diploma or less, and 42 participants (4.4%) were facing financial hardship. The majority of respondents supported all end-of-life options and the loosening of eligibility requirements for medical assistance in dying. Differences between subgroups were minor. While respondents in socioeconomically disadvantaged subgroups had less knowledge about EOL practices, those with lower educational attainment were more likely to be in favor of medical assistance in dying, and less likely to favor continuous palliative sedation. People living with situational social and economic vulnerabilities face multiple barriers in accessing health care. While they may have poorer knowledge about EOL practices, they have a positive attitude towards medical assistance in dying and assisted suicide, and a negative attitude towards continuous palliative sedation. This highlights the need for future research and interventions aimed at empowering this population and enhancing their access to EOL care.

Quebec population highly supportive of extending Medical Aid in Dying to incapacitated persons and people suffering only from a mental illness: Content analysis of attitudes and representations

In 2015, the province of Quebec in Canada became one of the few jurisdictions to legalize medically assisted dying. Thereafter, a public commission was mandated to study the extension of Medical Aid in Dying (MAiD) to incapacitated persons and people suffering from only a mental illness. To better understand debates concerning different forms of assisted dying and their eligibility conditions, we assessed the attitudes of the Quebec general population toward extending Medical Aid in Dying to incapacitated persons and those suffering only from a mental illness and their representations of those practices. We conducted an interpretative content analysis of 31 semi-structured interviews conducted as part of a large-scale study aimed at documenting Knowledge, Attitudes, and Representations of Quebecers regarding MAiD, continuous palliative sedation, and palliative care (KAR Study). Our analysis was complexified since participants often mixed responses regarding different current and proposed end-of-life practices, and they frequently declared a lack of knowledge of practices. To illustrate this emerging aspect of our results, we quantitated the content of the interview transcripts to create a structured qualitative dataset. Of the 31 participants, 29 were in favour of MAiD. All those in favour considered that the practice should be accessible to incapacitated persons and 27 of them believed that access should be granted to those who suffer only from a mental illness. However, 20 of the 31 participants (64.5%) confused the term Medical Aid in Dying with other legal forms of end-of-life practices such as palliative care, withdrawing, and withholding of life-sustaining treatments, and advance directives about treatment. Sixteen (51.6%) said they lacked knowledge about one or several of the end-of-life practices discussed in the interview. Although the participants were very favorable toward MAiD, there was widespread confusion in participants’ understanding of what constitutes MAiD, thinking it includes other currently legal end-of-life practices. It is not possible to determine whether our participants were in favour of the extension of MAiD to incapacitated persons and people suffering from mental illnesses, or if they were in favour of various currently legal end-of-life interventions for those populations.

Relieving suffering.

![Figure][1]</img> There is a kind of void that fills my soul whenever I think about the concept of continuous palliative sedation. That void is not the result of a lack of technical or theoretical knowledge, or the feeling of facing new situations, which medical students must grow accustomed to

Continuous Palliative Sedation Until Death: The Development of a Practice Protocol for Nursing Homes

ObjectivesChallenges inherent in the practice of continuous palliative sedation until death appear to be particularly pervasive in nursing homes. We aimed to develop a protocol to improve the quality of the practice in Belgian nursing homes. MethodsThe development of the protocol was based on the Medical Research Council Framework and made use of the findings of a systematic review of existing improvement initiatives and focus groups with 71 health care professionals [palliative care physicians, general practitioners (GPs), and nursing home staff] identifying perceived barriers to the use of continuous palliative sedation until death in nursing homes. The protocol was then reviewed and refined by another 70 health care professionals (palliative care physicians, geriatricians, GPs, and nursing home staff) through 10 expert panels. ResultsThe final protocol was signed off by expert panels after 2 consultation rounds in which the remaining issues were ironed out. The protocol encompassed 7 sequential steps and is primarily focused on clarification of the medical and social situation, communication with all care providers involved and with the resident and/or relatives, the organization of care, the actual performance of continuous sedation, and the supporting of relatives and care providers during and after the procedure. Although consistent with existing guidelines, our protocol describes more comprehensively recommendations about coordination and collaboration practices in nursing homes as well as specific matters such as how to communicate with fellow residents and give them the opportunity to say goodbye in some way to the person who is dying. Conclusions and ImplicationsThis study succeeded in developing a practice protocol for continuous palliative sedation until death adapted to the specific context of nursing homes. Before implementing it, future research should focus on developing profound implementation strategies and on thoroughly evaluating its effectiveness.

Medicalisation, suffering and control at the end of life: The interplay of deep continuous palliative sedation and assisted dying.

Medicalisation is a pervasive feature of contemporary end of life and dying in Western Europe and North America. In this article, we focus on the relationship between two specific aspects of the medicalisation of dying: deep continuous palliative sedation until death and assisted dying. We draw upon a qualitative interview study with 29 health professionals from three jurisdictions where assisted dying is lawful: Flanders, Belgium; Oregon, USA; and Quebec, Canada. Our findings demonstrate that the relationship between palliative sedation and assisted dying is often perceived as fluid and complex. This is inconsistent with current laws as well as with ethical and clinical guidelines according to which the two are categorically distinct. The article contributes to the literature examining health professionals’ opinions and experiences. Moreover, our findings inform a discussion about emergent themes: suffering, timing, autonomy and control – which appear central in the wider discourse in which both palliative sedation and assisted dying are situated, and which in turn relate to the wider ideas about what constitutes a ‘good death’.

Continuous Palliative Sedation in Nursing Home Residents With Dementia and Refractory Neuropsychiatric Symptoms

ObjectivesExtreme neuropsychiatric symptoms can be a heavy burden for nursing home (NH) residents, relatives, and caregivers. Sometimes, when extreme neuropsychiatric symptoms are considered refractory, continuous palliative sedation is administered. The aim of this study was to explore the trajectory leading to continuous palliative sedation and its administration in NH residents with dementia and refractory neuropsychiatric symptoms. DesignA qualitative interview and explorative study was performed. Setting and ParticipantsRelatives, elderly care physicians, and other staff members involved with 3 NH residents with dementia and extreme refractory neuropsychiatric symptoms who received continuous palliative sedation were interviewed. These NH residents lived on dementia special care units of 3 NHs in the Netherlands. MethodsConsecutive sampling was used to select participants. Medical files were studied. Semistructured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis. ResultsNine in-depth interviews with 13 participants were held. Analysis resulted in 6 main themes, with several subthemes reflecting phases of the continuous palliative sedation trajectory: (1) run-up, describing an unbearable struggle of the resident; (2) turning point, at which hope was lost; (3) considering continuous palliative sedation and administration of intermittent sedation; (4) decision to start continuous palliative sedation based on 1 decisive trigger; (5) administration of continuous palliative sedation with stakeholders experiencing relief; and (6) evaluation. Conclusions and ImplicationsThe trajectory leading up to continuous palliative sedation in NH residents with dementia and extreme refractory neuropsychiatric symptoms was complex and burdensome, but the initiation led to relief and contentment for all those involved. This study highlights that continuous palliative sedation can be a valuable treatment option among these residents. A recommendation is to include external consultation in the decision process and to administer intermittent sedation as a preceding step when continuous palliative sedation is considered.

Continuous palliative sedation in nursing home residents with dementia suffering from extreme refractory BPSD symptoms: A qualitative study

AbstractBackgroundBPSD are highly prevalent in nursing home (NH) residents with dementia. Sometimes these BPSD are very severe or even extreme resulting in the application of continuous palliative sedation (CPS) CPS is defined as “the deliberate lowering of a patient’s level of consciousness in the last stages of life”. The aim of this study was to explore the trajectory leading to CPS and its application NH‐residents with dementia and case of so called ‘refractory BPSD’.MethodA qualitative interview study on dementia special care units of three NHs in the Netherlands was performed in 2017. Relatives, elderly care physicians and other staff members involved with three NH‐residents with dementia and extreme refractory NPS who received CPS. We used consecutive sampling to select participants. Medical files were studied. Semi‐structured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis.ResultNine in‐depth interviews with fourteen participants were held. Analysis resulted in five main themes with several subthemes reflecting phases of the trajectory leading to CPS and the CPS application itself, a sixth main theme concerned evaluations thereof. According to the first theme (run‐up), the suffering of the NH‐resident was described as unbearable/an inner struggle. Participants still had hope for improvement. Concerning the second theme (turning point), hope was lost, participants were convinced they had tried everything and experienced feelings of powerlessness and failure. Regarding theme three (considering CPS), intermittent sedation was applied in all three cases and peer consultation was employed. Honoring the wish of the NH‐resident and therapeutic uncertainties, among others, were important subthemes. According to theme four (decision to start CPS), in each case one specific aspect was a decisive trigger for administering CPS. Concerning theme five (applying CPS) feelings of relief were experienced after starting with CPS.ConclusionThe trajectory leading up to CPS in NH‐residents with dementia and extreme refractory BPSD was complex and burdensome, but the application led to relief and contentment of all those involved. We recommend to include external consultation in the decision process and to apply intermittent sedation as a preceding step when CPS is considered.

210 - Palliative Care in Dementia

Introduction:Extreme neuropsychiatric symptoms (NPS) can be a heavy burden for nursing home (NH)-residents, relatives and caregivers. When conventional treatments are ineffective or have intolerable side effects, extreme NPS can be considered refractory. In these situations, continuous palliative sedation (CPS) is sometimes administered. We explored the trajectory leading to CPS and its application in NH-residents with dementia and refractory NPS.Methods:A qualitative interview study was performed in 2017. Relatives, elderly care physicians and other staff members involved with three NH-residents with dementia and extreme refractory NPS who received CPS were interviewed. These NH-residents lived on dementia special care units of three NHs in the Netherlands. We used consecutive sampling to select participants. Medical files were studied. Semi-structured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis.Results:Nine in-depth interviews with fourteen participants were held. Analysis resulted in five main themes with several subthemes reflecting phases of the trajectory leading to CPS and the CPS application itself, a sixth main theme concerned evaluations thereof. According to the first theme (run-up), the suffering of the NH-resident was described as unbearable/an inner struggle. Participants still had hope for improvement. Concerning the second theme (turning point), hope was lost, participants were convinced they had tried everything and experienced feelings of powerlessness and failure. Regarding theme three (considering CPS), intermittent sedation was applied in all three cases and peer consultation was employed. Honoring the wish of the NH-resident and therapeutic uncertainties, among others, were important subthemes. According to theme four (decision to start CPS), in each case one specific aspect was a decisive trigger for administering CPS. Concerning theme five (applying CPS) feelings of relief were experienced after starting with CPS.Conclusions:The trajectory leading up to CPS in NH-residents with dementia and extreme refractory NPS was complex and burdensome, but the application led to relief and contentment of all those involved. We recommend to include external consultation in the decision process and to apply intermittent sedation as a preceding step when CPS is considered.

Hypodermoclysis as a Strategy for Patients With End-of-Life Cancer in Home Care Settings.

The increase in the elderly population associated with a higher incidence of cancer strongly endorses palliative care (PC). Hypodermoclysis (HDC) is a feasible technique for drugs and fluids delivery at the home care setting. To assess the use and benefits of HDC in patients with end-of-life cancer assisted by a single home-based palliative care program (HPCP) in Belo Horizonte, Brazil. This was a retrospective study that analyzed medical charts from patients with end-of-life cancer who were assisted by an HPCP in a 1-year period of time. A total of 333 patients, 81.7% with advanced cancer, were included. The most frequent symptoms were fatigue (44.4%) and pain (43.2%). Hypodermoclysis was used in 77.5% of the patients for the administration of fluids or medicines. Continuous palliative sedation was applied to 70.5% of patients. The place of death was home for 90.2% of the patients. Receiving home care assistance with palliative intention may decrease the need for dying patients with cancer to visit emergency units, as their symptoms were well controlled. Hypodermoclysis was a safe and effective alternative for hydration and drug delivery when provided and supervised by an experienced team. The place of death is a reliable indicator of the quality of death, and, in this study, the HPCP allowed patients to die at home with their families. It is essential for PC professionals to understand the impact of HDC use at home care setting for patients with end-of-life cancer allowing the increase of quality of death indicators.

Morire senza coscienza. La giustificazione morale della sedazione palliativa profonda continua

Un recente disegno di legge sulle cure alla fine della vita ha proposto di estendere l’opzione della sedazione palliativa profonda continua anche a pazienti che non siano in fase terminale di malattia. Questo sviluppo del dibattito sulle cure alla fine della vita richiede un nuovo sforzo per chiarire i termini della questione e risolvere alcune persistenti ambiguità. Il presente articolo sottolinea come la sedazione palliativa profonda continua sia eticamente lecita, e in effetti parte integrante delle cure palliative, solo quando eseguita in modo conforme alle principali linee guida. Daremo argomenti per mostrare come ‘l’imminenza di morte’, generalmente intesa come morte attesa entro poche ore/giorni, sia un importante criterio clinico per decidere della liceità etica di questa pratica medica. Nella nostra argomentazione (1) spiegheremo come la Dottrina del Duplice effetto, cui frequentemente si fa ricorso nei dibattiti etici su questa pratica, non sia invece necessariamente applicabile al caso della sedazione palliativa; (2) identificheremo una giustificazione alternativa, etica e clinica, per il ricorso alla sedazione in situazioni di fine vita; infine (3) discuteremo l’eventuale liceità del ricorso alla sedazione palliativa in casi di sofferenza esistenziale. Contiamo in tal modo di contribuire allo sviluppo del dibattito bioetico in corso su questi temi.

A response to critics: weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation

My essay ‘Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation’ has recently generated some critique which I will attempt to address in this response. Regarding the...

Clinical Patterns of Continuous and Intermittent Palliative Sedation in Patients With Terminal Cancer: A Descriptive, Observational Study

ContextLimited information is available regarding the detailed clinical patterns of palliative sedation (PS), that is, the symptom control rate, salvage medication, and the effectiveness of intermittent PS (IPS) versus continuous PS (CPS). ObjectivesThe primary aim was to investigate clinical outcomes of PS in a real clinical setting. MethodsClinical information was prospectively collected for patients who were treated according to a prescribed protocol and assessment tools in a hospice unit affiliated with a tertiary cancer center between September 2015 and March 2017. Data were analyzed retrospectively. Midazolam was used as the first medication for PS, and propofol and phenobarbital were subsequently used as salvage medications. Indications of PS, the depth of sedation, the quality of sleep, and the level of consciousness were assessed. ResultsA total of 306 patients were enrolled, 89 of whom (29.1%) received PS. No difference in survival time was found between patients with and without PS (median survival, 34.0 vs 25.0 days, P = 0.109). Delirium was the most common indication of PS. The symptoms of 73 (82.0%) of 89 patients with PS were relieved with midazolam. Twelve (75.0%) of 16 midazolam-failure patients responded to propofol, five of whom (31%) exhibited respiratory depression. Of the 89 patients receiving PS, 61 (68.5%) received IPS and 28 patients (31.5%) received CPS. The median survival times from PS initiation to death were six days in the IPS group and one day in the CPS group (P < 0.001). Interestingly, consciousness levels were significantly improved after IPS in the delirium group compared with those in the other group (41.7% vs 16.7%, P = 0.002). ConclusionThe refractory symptoms of end-of-life patients with cancer can ultimately be relieved with various medications for PS. IPS may improve the consciousness level of patients with delirium.

Medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law

BackgroundFor the year 2018, the French government plans a revision of bioethics laws, including certainly the recent Claeys-Leonetti law introducing the right to deep and continuous sedation at the request of palliative patients and prohibiting euthanasia for end-of-life patients. Because there is no published data on medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law, we believe this report may give insight into physicians’ decision making, into the role of criteria for prudent practice, and thus contribute to the bioethical debate.Case presentationWe report a 70-year-old patient with squamous cell carcinoma of the hypopharyngeal region, who categorically refused any treatment since one year and asked for deep and continuous palliative sedation until death after attempting suicide. The patient’s request was examined and denied by palliative multidisciplinary board, in accordance with by the French Oncology Coordination Centre guidelines. This situation did not fulfil the criteria requested by Claeys-Leonetti law.ConclusionsAs highlighted by the present case-report, patient’s expectation regarding palliative sedation can be ambivalent with properly so called euthanasia or assisted suicide. This ambivalent perception was part of the controversy surrounding the parliamentary debate, which is still relevant. This case report supports that deep and continuous sedation under Claeys-Leonetti law need to meet specific criteria defined by the law and documented in the medical files as a safeguard against inappropriate practice. In fact, one of the shortcomings of the current arrangements of Claeys-Leonetti law is a lack of objective medical-based criteria. So it is necessary that scientific peer-reviews papers be published quickly in order to deepen the bioethical debate on the end of life.

Palliative sedation in clinical scenarios: results of a modified Delphi study.

To explore the consistency in international expert opinions about palliative sedation. A modified electronic-Delphi procedure was carried out in two rounds. On hundred nine eligible experts were identified from their publications in MEDLINE related with terminal delirium, dyspnea and palliative sedation in the last 3years. Delphi study included three vignettes of cancer patients and two non-cancer patients, with an estimated survival of days and severe suffering secondary to refractory complications. Experts were asked about whether they would perform continuous sedation and sedation level (described as Richmond Agitation Sedation Scale or defined as patient/family report of symptom relief). Consensus was considered when 70% or more of the experts agreed on a certain topic. Thirty-four and 27 panellists completed the 2 Delphi rounds, respectively. Participants were from the USA, Canada, Europe, Australia and Asia. One hundred per cent, 97% and 88% of the respondent agreed use of sedatives, continuously or temporary, in cases of refractory delirium, dyspnea secondary to lung cancer and GOLD IV-EPOC. There were discrepancies for cases of dementia and psycho-existential suffering. Expert selection of continuous palliative sedation was 93% for delirium, 41% for cancer dyspnea, 66% for EPOC dyspnea, 22% for agitation/pain in dementia and 19% for existential suffering. Responses about types and levels of sedation did not achieve consensus in any cases. The Delphi study failed to reach consensus in continuous palliative sedation and sedation levels for patients with refractory symptoms described in hypothetical clinical scenarios.

Abstract P-395: A STRUCTURED APPROACH TO REFRACTORY PAIN AND OTHER DISTRESSING SYMPTOMS IN CRITICALLY-ILL CHILDREN

Aims & Objectives: Pain refractory to properly titrated multimodal analgesics, and other difficult-to-control distressing symptoms may occur in the PICU, usually in children with advanced cancer causing malignant effusions, obstruction or osseous metastases, and in children with sequelae of neurologic disorders. This may constitute a barrier to transfer to other healthcare settings. Methods Methods: A literature search was performed utilizing the PubMed engine through January of 2018, querying terms relevant to refractory symptoms in critically-ill patients. Results There is an emerging body of experience in critical care. Impeccable assessment, appropriate integration of pharmacologic (non-opioid, opioid and adjuvant medications) and non-pharmacologic (integrative) measures consistent with WHO guidelines are key. Inadequate perioperative analgesia may precipitate refractory pain and dystonia. Delirium, opioid-associated neurotoxicity and hyperalgesia should be considered when escalating pain is encountered. Titratable intravenous agents may be effective. Dexmedetomidine, along with environmental measures, may mitigate delirium. This agent, Ketamine and lidocaine can be transitioned to enteral formulations or analogs, facilitating transfer. Medications (dexamethasone, octreotide) and Interventions to vent, stent and decompress may palliate malignant effusions or obstruction. Neuroaxial (epidural, intrathecal) techniques using opioids, adjuvants or ziconotide may be appropriate. Recently described image-guided percutaneous neuroablative procedures (myelotomy, cordotomy) appear to be safe and effective. Respite (overnight) or intermittent (hours / days) sedation can be attempted in selected patients prior to institution of traditional unidirectional, continuous palliative sedation. Conclusions A structured, multidisciplinary, individualized approach to care may achieve rapid control of complex symptoms, facilitating transfer from PICU to other inpatient or hospice settings.