Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure.

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.

Comparing situational influences on differential healthcare utilization trajectories in patients on home palliative care: A qualitative study.

OBJECTIVES: Patients with terminal cancer receiving home palliative care present differential healthcare utilization trajectories before death. It remains unclear which situational elements influence these trajectories among disparate patient groups. The aim of this study was to compare situational influences on "persistently high" and "low stable" trajectories of healthcare utilization in patients who received palliative care support at home. METHODS: Bereaved family caregivers were recruited from our prior quantitative study investigating healthcare utilization trajectories in oncology patients on home-based palliative care. In-depth interviews were conducted with 30 family caregivers. Data were analyzed using thematic analysis. RESULTS: Analysis of data uncovered how the 2 utilization trajectories were influenced by the interplay of 1 or more of 4 situational elements. Perceived symptom control in patients, influenced by their determination to die at home, shapes the susceptibility to situational contingencies, resulting in differential utilization trajectories. Caregivers' mental readiness in dealing with unexpected circumstances has a significant impact on the overall manageability of care, ultimately affecting decisions related to healthcare utilization. The concordance between symptom needs and scope of homecare services in a given situation proves to be an important determinant. Lastly, perceived accessibility to informal support in times of need acts as a contextual reinforcement, either preventing or precipitating decisions regarding healthcare utilizations. SIGNIFICANCE OF RESULTS: Our findings hold important implications for the provision of homecare services, in particular, the need for comprehensive assessment of end-of-life wishes during homecare enrolment and strengthening psychological preparedness of caregivers. Expansion of home-based clinical interventions tailored to high utilizers, and funding for temporary in-home respite should be considered to optimally manage potentially preventable acute healthcare utilization.

Longitudinal patterns and predictors of healthcare utilization among cancer patients on home-based palliative care in Singapore: a group-based multi-trajectory analysis.

BACKGROUND: Home-based palliative care (HPC) is considered to moderate the problem of rising healthcare utilization of cancer patients at end-of-life. Reports however suggest a proportion of HPC patients continue to experience high care intensity. Little is known about differential trajectories of healthcare utilization in patients on HPC. Thus, we aimed to uncover the heterogeneity of healthcare utilization trajectories in HPC patients and identify predictors of each utilization pattern. METHODS: This is a cohort study of adult cancer patients referred by Singapore Health Services to HCA Hospice Service who died between 1st January 2018 and 31st March 2020. We used patient-level data to capture predisposing, enabling, and need factors for healthcare utilization. Group-based multi-trajectory modelling was applied to identify trajectories for healthcare utilization based on the composite outcome of emergency department (ED) visits, hospitalization, and outpatient visits. RESULTS: A total of 1572 cancer patients received HPC (median age, 71 years; interquartile range, 62-80 years; 51.1% female). We found three distinct trajectory groups: group 1 (31.9% of cohort) with persistently low frequencies of healthcare utilization, group 2 (44.1%) with persistently high frequencies, and group 3 (24.0%) that begin with moderate frequencies, which dropped over the next 9 months before increasing in the last 3 months. Predisposing (age, advance care plan completion, and care preferences), enabling (no medical subsidy, primary decision maker), and need factors (cancer type, comorbidity burden and performance status) were significantly associated with group membership. High symptom needs increased ED visits and hospitalizations in all three groups (ED visits, group 1-3: incidence rate ratio [IRR] 1.74-6.85; hospitalizations, group 1-3: IRR 1.69-6.60). High home visit intensity reduced outpatient visits in all three groups (group 1-3 IRR 0.54-0.84), while it contributed to reduction of ED visits (IRR 0.40; 95% CI 0.25-0.62) and hospitalizations (IRR 0.37; 95% CI 0.24-0.58) in group 2. CONCLUSIONS: This study on HPC patients highlights three healthcare utilization trajectories with implications for targeted interventions. Future efforts could include improving advance care plan completion, supporting care preferences in the community, proactive interventions among symptomatic high-risk patients, and stratification of home visit intensity.

Utilisation of after-hours telephone support in a home-based hospice service.

BACKGROUND: After-hours support from hospice providers is instrumental to patients with serious illness who choose to remain at home, particularly at end of life. Utilisation of out-of-hours support has been much characterised in terms of frequency and nature of calls, but more needs to be known to inform service customisation and resource allocation to optimise care. To this end, we stratify reasons for using the after-hours helpline according to time sensitivity, and to explore disease and person factors associated with urgent calls. METHOD: Electronic medical records for incoming calls from external parties outside workhours within a large home hospice in Singapore were analysed inductively, to identify patterns and associations along study objectives. Individual code books for caller type and call reasons were created and tested in vivo, and later administered to extracted data. Patients that accessed the helpline were tracked for different outcomes, including hospital admissions and on-call home visits. Logistic regression modelling was performed to categorise call reasons by urgency and to identify disease and person factors associated with time sensitive calls. RESULTS: More than 5,000 calls to the helpline were made over a two-year period (2019-2020), predominantly by family caregivers (88.4%). These were in relation to 2,303 unique patients (38.9% of total patients served). After-hours calls were made an average of 2.3 times by patients across various lengths of service. Only 11.9% of calls were deemed time sensitive or urgent, requiring home visits by on-call staff (4%) or resulting in admission to hospital (7.9%). The majority were managed by primary care teams on the next workday (65.1%) and the remainder sorted during the after-hours call itself (22.3%). Call reasons or presenting issues were classified into two groups according to urgency. Calls in the year 2020, from the younger patient, preferred place of death outside the home, and caller types other than patient or healthcare worker were significantly associated with urgent calls. CONCLUSION: Deeper characterisation of after-hours calls offers possibilities: service redesign for optimal resourcing and customised training for better care. Ultimately, planners, providers, and patients all stand to benefit.

Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals.

BACKGROUND: Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. METHODS: Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields". Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. RESULTS: Three themes emerged - healthcare professionals' discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. CONCLUSION: Healthcare professionals' sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions.

A good death in the child with life shortening illness: A qualitative multiple-case study.

BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear. AIM: Explore how a good death for children can occur in the real-world context and identify factors influencing it. DESIGN: A qualitative multiple-case study. The case was defined as family and professional caregivers of children who died, stratified across disease categories (cancer or non-cancer) and palliative care contact. Data collection included (1) interviews, (2) artefacts, (3) clinical notes. Framework Analysis facilitated in-depth within and cross-case analysis. SETTING/PARTICIPANTS: Singapore health-care context. Respondents included bereaved parents, health and social care providers from hospital, and a community palliative care service. RESULTS: Five cases were constituted, with eight parents and 14 professionals as respondents. Eight common themes were identified, sub-categorised under three domains and interpreted theoretically: (1) Antecedents: Letting go, Acknowledging the child, Closure (2) Determinants: Suffering, Control, Systems and processes (3) Attributes: Comfort, Dying not prolonged. These factors were consistent across all cases, regardless of individual diagnoses, place of care and palliative care access. CONCLUSIONS: Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.

First pediatric organ donation after circulatory determination of death in Singapore: Facing challenges in the absence of a local practice guideline.

Pediatric organ donation represents only a low proportion of overall organ donation in many parts of world, unable to match the needs for pediatric organ transplantation. Pediatric organ donation after circulatory determination of death (DCD) is increasingly explored in pediatric transplantation, as it increases the availability of organ grafts. A 6-year-old Caucasian boy with a history of arteriovenous malformation presented with a catastrophic intracranial bleed, resulting in severe brainstem dysfunction despite maximal medical and surgical measures. He did not fulfill the criteria for brain death, which must be met for pediatric organ donation in Singapore. Due to parental request, his organs were donated after withdrawal of life support and determination of death by circulatory criteria. Pediatric organ DCD poses many challenges in the pediatric population, especially in the absence of a local practice guideline. We present the first case of a pediatric organ DCD that has occurred in Singapore. Further work is needed, particularly in establishing a national policy for pediatric organ DCD and increasing overall awareness and acceptance toward pediatric organ donations.

Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS).

BACKGROUND: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore. METHODS: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment. RESULTS: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed. CONCLUSION: The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.

Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore.

BACKGROUND: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child's chronic life-threatening illness, there is no such study within the Asian context. METHODS: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018. RESULTS: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants' lived experience of their child's chronic life-threatening illness and death, starting from the diagnosis of their child's chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child's death and the losses which accompanied the death (Theme 3) and participants' experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or 'rituals' that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7). CONCLUSION: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.

Burnout, psychological morbidity and use of coping mechanisms among palliative care practitioners: A multi-centre cross-sectional study.

BACKGROUND: The prevalence of burnout, psychological morbidity and the use of coping mechanisms among palliative care practitioners in Singapore have not been studied. AIM: We aimed to study the prevalence of burnout and psychological morbidity among palliative care practitioners in Singapore and its associations with demographic and workplace factors as well as the use of coping mechanisms. DESIGN: This was a multi-centre, cross-sectional study of all the palliative care providers within the public healthcare sector in Singapore. SETTING/PARTICIPANTS: The study was conducted in hospital palliative care services, home hospice and inpatient hospices in Singapore. The participants were doctors, nurses and social workers. RESULTS: The prevalence of burnout among respondents in our study was 91 of 273 (33.3%) and psychological morbidity was 77 (28.2%). Working >60 h per week was significantly associated with burnout (odds ratio: 9.02, 95% confidence interval: 2.3-35.8, p = 0.002) and psychological morbidity (odds ratio: 7.21, 95% confidence interval: 1.8-28.8, p = 0.005). Home hospice care practitioners (41.5%) were more at risk of developing psychological morbidity compared to hospital-based palliative care (17.5%) or hospice inpatient care (26.0%) (p = 0.007). Coping mechanisms like physical well-being, clinical variety, setting boundaries, transcendental (meditation and quiet reflection), passion for one's work, realistic expectations, remembering patients and organisational activities were associated with less burnout. CONCLUSION: Our results reveal that burnout and psychological morbidity are significant in the palliative care community and demonstrate a need to look at managing long working hours and promoting the use of coping mechanisms to reduce burnout and psychological morbidity.

Burnout Prevalence and Associated Factors Among Palliative and Hospice Care Professionals During the COVID-19 Endemic: An Exploratory Survey.

BACKGROUND: Burnout is a significant issue for palliative and hospice professionals, exacerbated by the impact of Coronavirus Disease 2019 (COVID-19) on healthcare professionals. It is crucial to update our understanding of prevalence data, identify associated factors, and evaluate support resources during the COVID-19 pandemic. METHODS: We aimed to explore the prevalence of burnout among palliative and hospice care workers, 2 years into the COVID-19 pandemic by using the Maslach's Burnout Inventory; anxiety, using General Anxiety Disorder-7 (GAD-7), workload, risk perception of COVID-19, confidence in protective measures (personal, workplace, and government), and usage and perceived helpfulness of support resources. Univariate logistic regression analysis was conducted to analyse burnout against these factors. RESULTS: Of the 115 respondents encompassing doctors, nurses and social workers (76.5% female; average age 40.9), 48.7% experienced burnout. Burnout correlated with increased anxiety, higher COVID-19 risk perception, heavier workload, and reduced confidence in protective measures. Peer support, COVID information, and psychological programs were rated as the most effective for coping. CONCLUSION: The study indicates considerable levels of burnout among palliative and hospice care workers, linked to workload, anxiety, and perceived risk. Traditional mental health interventions had limited efficacy; respondents favoured peer support and organisational changes. The findings stress the need for a holistic approach, including diverse resources, workload management, and regular mental health assessments.

"I don't know whether I will be alive or not" - An interpretative phenomenological analysis of young adult males with Duchenne Muscular Dystrophy making sense of self and life.

BACKGROUND: With ventilatory support, boys with Duchenne Muscular Dystrophy (DMD) now live longer. The emerging adulthood offers unanticipated opportunities for identity exploration. Existing literature has raised issues around transitions and implicit obligations within structural and sociological domains; intrinsic challenges are posed, while concurrently engendering possibilities in an uncertain future. OBJECTIVE: Reveal lived experience and meaning making among men with advanced DMD living outside the western context. METHODS: Secondary data, essentially transcripts of semi-structured interviews with five young men with DMD, age ranging from 23 to 37 years, conducted as part of a larger study were analysed iteratively in depth. Given their underlying vulnerability associated with significant physical dependencies, all respondents were receiving palliative care from the local hospice, and lived with family caregivers at home. RESULTS: Three themes encapsulated the essence of their lifeworld at this juncture. Each shared poignant stories of having survived adverse circumstances in the past, learning to live with themselves in the current state of disabilities and disconnection with peers. Yet, moments of yearning surface, to make new friends and find gainful employment like everyone else. Ambivalence notwithstanding, they navigated societal marginalization through digital media, or found meaning in family bonding and existential dimensions. Faced with uncertainty, most embraced the status quo in silent resignation, to minimise disappointment or as pragmatic responses to enduring systemic and personal barriers. CONCLUSIONS: Study findings expounded challenges men with advanced DMD grappled that ultimately shaped self-identity. Healthcare professionals could support this group of precarious survivors even better through individualised person-centred care.

PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses.

OBJECTIVES: To determine the measurement properties of PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS), a parent-reported measure of Quality of Care for seriously ill children across care settings and illness trajectories. STUDY DESIGN AND SETTING: Parents self-administered baseline and 2-week follow-up surveys online. Exploratory Factor Analysis was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients, and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care and Quality of Children's Palliative Care Instrument. RESULTS: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. Exploratory Factor Analysis grouped PRECIOUS into five scales: collaborative and goal-concordant care (12 items), caregiver support and respectful care (15 items), access to financial and medical resources (five items), reducing caregiving stressors (nine items), and hospitalization-specific processes (four items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. Intraclass correlation coefficients ranged from 0.72 to 0.86. Significant correlations with Measure of Processes of Care and Quality of Children's Palliative Care Instrument confirmed convergent validity. The original 56-item tool was reduced to 45 items. CONCLUSION: PRECIOUS demonstrates satisfactory measurement properties for assessing Quality of Care for seriously ill children.

Gabapentin for Pain in Pediatric Palliative Care.

OBJECTIVE: Gabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). METHODS: A prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. RESULTS: Data were collected from 127 children with a median age of 4.7 years (IQR 0.1-17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. CONCLUSIONS: Gabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.

A qualitative exploration of parental perspectives on quality of care for children with serious illnesses.

Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care. Methods: This qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework. Results: 31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the "PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)" framework which summarizes elements contributing to the parental perception of quality of care. Discussion: The identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.

Public sentiments and the influence of information-seeking preferences on knowledge, attitudes, death conversation, and receptiveness toward palliative care: results from a nationwide survey in Singapore.

Background: Low awareness about palliative care among the global public and healthcare communities has been frequently cited as a persistent barrier to palliative care acceptance. Given that knowledge shapes attitudes and encourages receptiveness, it is critical to examine factors that influence the motivation to increase knowledge. Health information-seeking from individuals and media has been identified as a key factor, as the process of accessing and interpreting information to enhance knowledge has been shown to positively impact health behaviours. Objective: Our study aimed to uncover public sentiments toward palliative care in Singapore. A conceptual framework was additionally developed to investigate the relationship between information-seeking preferences and knowledge, attitudes, receptiveness of palliative care, and comfort in death discussion. Design and Methods: A nationwide survey was conducted in Singapore with 1226 respondents aged 21 years and above. The data were analysed through a series of hierarchical multiple regression to examine the hypothesised role of information-seeking sources as predictors. Results: Our findings revealed that 53% of our participants were aware of palliative care and about 48% were receptive to receiving the care for themselves. It further showed that while information-seeking from individuals and media increases knowledge, attitudes and receptiveness to palliative care, the comfort level in death conversations was found to be positively associated only with individuals, especially healthcare professionals. Conclusion: Our findings highlight the need for public health authorities to recognize people's deep-seated beliefs and superstitions surrounding the concept of mortality. As Asians view death as a taboo topic that is to be avoided at all costs, it is necessary to adopt multipronged communication programs to address those fears. It is only when the larger communicative environment is driven by the media to encourage public discourse, and concurrently supported by timely interventions to trigger crucial conversations on end-of-life issues between individuals, their loved ones, and the healthcare team, can we advance awareness and benefits of palliative care among the public in Singapore.

A nationwide survey to understand public sentiments and the extent that information-seeking preferences can increase knowledge, attitudes, receptiveness of palliative care, and comfort level in death discussion in Singapore Low awareness of palliative care is a barrier that persistently hinders palliative care acceptance among populations in developing and developed countries. As knowledge shapes attitudes and encourages receptiveness, it is vital that researchers uncover factors that influence the motivation to increase knowledge. Health information-seeking is a factor that deserves greater attention in palliative care research because the process of seeking out information on health concerns from other people or the media can greatly increase individuals' knowledge. As such, this nationwide survey involving 1226 participants was carried out in Singapore to understand the public sentiments toward palliative care. It further statistically analyzed if information-seeking (from individuals and the media) will increase knowledge, attitudes, receptiveness toward palliative care, and comfort level in death discussion. Our findings indicated that 53% of our participants were aware of palliative care and about 48% were receptive to receiving the care for themselves. Furthermore, while information-seeking from individuals and media increases knowledge, attitudes, and receptiveness to palliative care, people are only comfortable to engage in death discussion with individuals, especially healthcare professionals. Exposure to media alone is not enough to encourage individuals to want to talk about end-of-life issues including palliative care. As Asians view death as a taboo topic, it is important for public health authorities to recognize people's deep-seated beliefs and superstitions surrounding the concept of mortality. A multipronged communication program is therefore needed to address these fears. It is only when the larger communicative environment driven by the media to encourage public discourse, and concurrently supported by timely interventions to trigger crucial conversations on end-of-life issues between individuals, their loved ones, and the healthcare team, can we advance awareness and benefits of palliative care among the public in Singapore.

An open-label clinical trial of oral transmucosal haloperidol and oral transmucosal olanzapine in the treatment of terminal delirium at home.

BACKGROUND: The phenomenon of restlessness, agitation, or cognitive disturbances experienced by dying patients is well-known in palliative care; more than half of these patients will experience delirium symptoms at end-of-life. When not identified early and effectively managed, delirium symptoms could lead to caregiver and patient distress and harm. METHODS: Eighty patients with a prognosis of 7 days or less will be recruited for an open-label randomised control trial. The two arms compare oral-transmucosal haloperidol 2.5 mg vs olanzapine 5 mg over 72 h. The severity of agitation, delirium and toxicities of treatments will be compared at the 24th, 48th and 72nd hour after drug administration. DISCUSSION: This trial is the first to compare anti-psychotics in the management of delirium at the dying stage in the home hospice setting using the oral transmucosal route. Ethical considerations, as well as recruitment procedures, are discussed. TRIAL REGISTRATION: This study was registered in ClinicalTrials.gov - identifier NCT04750395.

Education in Palliative and End-of-Life Care-Pediatrics: Curriculum Use and Dissemination.

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.

Parenteral Lidocaine for Complex Cancer Pain in the Home or Inpatient Hospice Setting: A Review and Synthesis of the Evidence.

Background: Cancer pain can remain refractory despite escalating opioids and adjuvants. Systemic Lidocaine is an option, but current approaches are hospital centered. While advantageous in advanced cancer, evidence is lacking for parenteral Lidocaine use in community-based care. Objectives: Review evidence for parenteral lidocaine in complex cancer pain outside the hospital setting. Design: Systematic review of peer-reviewed articles of any study design, including reviews. Search in four databases used keyword variations of "cancer," "pain," "Lidocaine," and "parenteral." Search was extended through reference lists of full texts assessed. Abstracted data from articles screened and selected were synthesized narratively by a palliative care clinician in Singapore. Results: Eight hundred eighty-three articles identified were screened by title and abstract. Twenty-eight full texts were assessed. Seven articles fulfilled criteria for synthesis of findings. A total of 73 patients received parenteral Lidocaine for mixed pains, reported collectively in 1 retrospective chart review, 3 practice guidelines, 2 case series, and 1 case study. Intravenous or subcutaneous Lidocaine was commenced in hospital or hospice and continued at home. Dosages and administration schedules varied, involving slow bolus with continuous infusion or the latter alone, for up to 240 days. All produced positive outcomes, with no severe adverse events. Monitoring included routine vital signs and conscious levels; electrocardiogram, liver, and renal function tests were uncommon. Lidocaine levels were not consistently assessed. Conclusion: Parenteral Lidocaine can be effective and safe in the community setting. More empirical studies are needed to inform patient selection and treatment protocol, and to validate expected outcomes.