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Background: Critically ill neonates receive care in the neonatal intensive care unit (NICU). Unfortunately, some neonates pass away in the NICU. Providing comprehensive neonatal palliative care and hospice services is crucial in supporting parents through the loss of their offspring. In our NICU, we identified that only 74.5% of nurses are able to properly recognize the need for palliative care and only 55% are able to implement the necessary procedures., Purpose: A project was designed and implemented to enhance the ability of nursing staff to recognize the need for and properly implement palliative care to improve the quality of this care in the NICU., Resolutions: We organized an on-the-job education and training program within our NICU with the goals of heightening awareness among nursing staff. In addition, a specialist palliative care operation flow chart, process preparation checklist, and palliative-care-related tools were created to facilitate the care process., Results: After program implementation, among nursing staff in our NICU, the palliative care recognition accuracy rate rose to 100% (from 74.5%) and the implementation rate rose to 94.8% (from 55%). The quality of provided neonatal palliative care and hospice services was significantly improved., Conclusions: The developed program was shown to significantly improve nursing staff recognition and implementation of neonatal palliative care in our NICU. This experience provides a reference for improving palliative care quality and for helping families effectively manage end-of-life challenges.

Abstract: As advanced practice registered nurses (APRNs) enter practice, support is crucial for success. Formal mentorship has been shown to improve employee turnover, job satisfaction, and clinical competence. In the wake of the COVID-19 pandemic, an APRN team specializing in palliative care experienced an unprecedented rate of staff turnover. As a result, the team decided to create a formal mentorship program to support newly hired colleagues and assist their transition to practice. A subcommittee of APRNs within the palliative care practice met to establish a mentorship practice framework, expectations for the program, and a methodology for matching mentors and mentees. The mentorship program was implemented with two cohorts comprising a total of five mentors and six mentees. It was evaluated by participants using surveys asking open-ended, qualitative questions. Both mentors and mentees reported finding the program valuable. Mentees felt the program helped their transition to practice, created a forum for peer support, and improved their clinical competence. Mentors said the program furthered their own professional development, advanced their clinical growth, and fostered a connection to colleagues. Employee engagement and alignment improved, and staff turnover decreased. Further work is needed to improve on the program framework and analyze the outcomes of mentorship., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

The integration of palliative care into routine oncology practice is the standard of care by most leading cancer organizations. Palliative medicine helps to deliver higher quality of care at a lower cost. However, there are barriers to implementing palliative oncology at many institutions for myriad reasons. In this article, we discuss an innovative strategy that ASCO implemented called the Communities of Practice (CoP). We share our experiences as the Palliative Care CoP and how our group seeks to develop processes and structures to collectively promote systemic change and enhance palliative care delivery for people with cancer. Our Palliative Care CoP engages with senior leaders, administrators, and those in power to achieve a shared vision of delivering holistic health care for people with serious illness. We continue to evolve to meet our members' growing needs by addressing eight main domains: (1) increasing palliative care education and resources; (2) creating opportunities for global palliative care research; (3) providing peer mentorship and community building; (4) engaging with patient advocates; (5) supporting and developing interdisciplinary teams; (6) assisting with professional development and identity formation, especially for trainees and early career faculty; (7) extending our outreach through social media; and (8) enhancing the clinical practice of palliative oncology. The ASCO CoP has been a vital forum to realize ASCO's mission of conquering cancer and advancing the Art and Science of Cancer Care: From Comfort to Cure.

People with advanced lung cancer represent a distinct group whose needs remain understudied, especially compared with people diagnosed with limited-stage disease. Fortunately, novel treatments such as tyrosine kinase inhibitors and immune checkpoint inhibitors are leading to significant advances in prognosis and survival, even among those with advanced disease at the time of diagnosis. However, there are known gaps in symptom management, psychosocial and nutritional support, complex care coordination, health behavior coaching, and health care delivery efforts among patients living with advanced lung cancer. Many of these patients would benefit from survivorship and palliative care approaches. In particular, survivorship care may include health care maintenance, treatment of immune-related adverse events and late- or long-term effects, frailty assessment and rehabilitation, and care coordination. Palliative care may be best suited to discuss ongoing symptom management, advanced care planning, and end-of-life considerations, as well as psychosocial well-being. To this end, we share a review of the current status of the palliative and survivorship care infrastructure for patients with advanced lung cancer and provide suggestions across the care continuum for this diverse group of patients and families.

Patients with hematologic malignancies (HMs) struggle with immense physical and psychological symptom burden, which negatively affect their quality of life (QOL) throughout the continuum of illness. These patients are often faced with substantial prognostic uncertainty as they navigate their illness course, which further complicates their medical decision making, especially at the end of life (EOL). Consequently, patients with HM often endure intensive medical care at the EOL, including frequent hospitalization and intensive care unit admissions, and they often die in the hospital. Our EOL health care delivery models are not well suited to meet the unique needs of patients with HMs. Although studies have established the role of specialty palliative care for improving QOL and EOL outcomes in patients with solid tumors, numerous disease-, clinician-, and system-based barriers prevail, limiting the integration of palliative care for patients with HMs. Nonetheless, multiple studies have emerged over the past decade identifying the role of palliative care integration in patients with various HMs, resulting in improvements in patient-reported QOL, symptom burden, and psychological distress, as well as EOL care. Importantly, these studies have also identified active components of specialty palliative care interventions, including strategies to promote adaptive coping especially in the face of prognostic uncertainty. Future work can leverage the knowledge gained from specialty palliative care integration to develop and test primary palliative care interventions by training clinicians caring for patients with HMs to incorporate these strategies into their clinical practice.

Many adults cycle between the hospital and skilled nursing facilities (SNFs) near the end of life. However, palliative care services, which can provide specialized support for patients with serious illness, are often limited at SNFs. The "3C's Palliative Care Program," a 5-month pilot, aimed to improve palliative care access for patients admitted to subacute rehabilitation at an SNF affiliated with an urban academic medical center. This manuscript focuses on the pilot's feasibility, acceptability based on SNF clinician feedback from interviews, and lessons learned. The 3C's Program featured primary palliative care skill coaching, virtual palliative care consultations, and continuity via referrals to home-based palliative care at discharge. Ninety percent of SNF clinicians surveyed recommended the continuation of the pilot. SNF clinicians felt the program improved their ability to identify patients for PC consultation, to understand the role and value of palliative care, and to appreciate their patients' illness trajectories. Lessons learned from this pilot suggest SNF-Palliative Care clinician relationship building and simple patient identification mechanisms for palliative care are key to the success of palliative care at SNF integration., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2023 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

This study examined the effects of intrathecal analgesia (ITA) using an extracorporeal pump with a subcutaneous port system in cancer patients with bone metastasis. Among the patients who died of cancer with bone metastasis at the palliative care unit of our institution, 11 who received ITA were selected. Changes in pain, opioid doses, the palliative prognostic index (PPI), and Eastern Cooperative Oncology Group Performance Scale　after ITA were assessed. Pain, opioid doses, and PPI decreased after ITA (P = 0.002, 0.002, and 0.017). ITA for cancer patients with increased PPI due to refractory cancer bone pain decreased pain, opioid doses, and PPI.(100 words)., (© 2024. The Author(s) under exclusive licence to Japanese Society of Anesthesiologists.)

Patients undergoing external beam radiation therapy for the palliative treatment of painful bony metastases may have difficulty maintaining a still position on a rigid uncovered couch top, both during CT simulation as well as during patient setup, image guidance, and treatment on the linear accelerator. For these patients, a thin foam pad or mattress is sometimes used to mitigate patient discomfort. It was desired to quantify the effect of the padding in cases in which the patient is to be treated supine with posterior beams when the majority of the beam weighting traverses both the couch and the pad. Ion chamber measurements in-phantom were acquired with 6 MV, 10 MV, and 15 MV photon beams. At depths of maximum dose, the pad resulted in a difference of signal collected ≤1%. At the phantom surface, the pad resulted in an increase in signal ranging from 1% to 6.5% for the measured beams. CT data of the pad, both with and without applied pressure, indicated that the pad had average HU values close to air., Competing Interests: Conflict of Interest The authors declare no conflicts of interest., (Copyright © 2023 American Association of Medical Dosimetrists. Published by Elsevier Inc. All rights reserved.)

Context: Driven by concerns about care quality, patient experience, and national metrics, health systems are increasingly focusing on identifying risk factors for patients who are hospitalized in the last month of life., Objective: To evaluate patient factors associated with hospital admission in the last month (30 days)., Methods: We analyzed a retrospective cohort of 8488 patients with a primary care visit in a tertiary health system in the last year of life using a linked electronic health record and decedent dataset. We examined healthcare utilization (primary care, emergency, hospital, intensive care unit encounters) and end-of-life related outcomes (palliative care consultation, do-not-resuscitate orders, advance care planning documentation, hospice at hospital discharge, death in health system). Multivariable logistic regressions identified patient factors associated with admission in the last month., Results: About 2202 (25.9%) patients had a hospital admission in the last month. Among the 1282 (15.1%) who died in a health system facility, most (1103/1282, 86.0%) were admitted to the hospital in the last month. Among patients with a hospital admission and discharged in the last month, 60.9% (686/1126) were discharged on hospice. Compared to those without these diseases, metastatic cancer, liver disease, or heart failure had the highest odds of admission in the last month (adjusted OR 2.36 95%CI 2.05-2.72; 2.28, 95%CI 1.98-2.62; and 2.17 95%CI 1.93-2.45 respectively)., Conclusions: As patients with heart or liver disease or metastatic cancer had the highest odds of admission in the last month, collaborative interventions between primary, palliative, and specialty care may improve quality of care at the end of life., Competing Interests: Disclosures The authors have no conflicts of interest to disclose., (Published by Elsevier Inc.)

Objectives: This pilot project replicated a self-compassion program to support health-care professionals in palliative care settings. We anticipated that undertaking this program would enhance participants' psychological well-being., Methods: Participants were recruited by convenience sampling from palliative care services in an area of Melbourne, Australia. Because of the COVID-19 pandemic, the program was offered online and comprised six once-weekly gatherings. Three survey rounds with identical questions were conducted prior to, immediately after, and 3 months after the training. The surveys consisted of 6 scales: the Self-Compassion Scale, the Santa Clara Brief Compassion Scale, the Cognitive and Affective Mindfulness Scale, the Depression Anxiety Stress Scale, the Professional Quality of Life Scale, and the Interpersonal Reactivity Index Scale. Paired-sample t-test and repeated measures analysis of variance analyses were used to compare participant responses., Results: Nine participants working in palliative care completed the training and 3 surveys and included qualitative responses. The experience was overwhelmingly positive. Self-compassion ( F  = 14.44; p  < 0.05) and mindfulness ( F  = 18.44; p  < 0.05) scores significantly increased post-training, were picked up in a short time and endured. The emotional state improved by compassion satisfaction, showing a positive improvement 3 months post-training, along with there being no changes in compassion satisfaction, burnout, and dispositional empathy., Significance of Results: Participants all worked in a supportive environment, which encouraged self-care. Even against the pandemic difficulties, a short online program was effective, assisting participants to cultivate their inner resources in mindfulness and self-compassion. While a small sample size, expansion of the training may benefit the wider palliative care workforce.

Objectives: The objective of this study was to compare the attitudes and beliefs of PCU physicians leaders in the United States versus Canada regarding the subcutaneous method in the administration of medications and hydration in order to gain a better understanding as to why variations in practice exist., Methods: This survey trial took place from November 2022 to May 2023. The MD Anderson Cancer Center institutional review board in Houston, Texas, approved this study. The participants were the physician leaders of the acute palliative care units (PCUs) in the United States and Canada. The survey comprised questions formulated by the study investigators regarding the perceived comfort, efficiency, and preference of using the subcutaneous versus the intravenous method. The consent form and survey links were emailed to the participants., Results: Sixteen PCUs were identified in the United States and 15 PCUs in Canada. Nine US and 8 Canadian physicians completed the survey. Physicians in Canada were more likely to use the subcutaneous route for administering opioids, antiemetics, neuroleptics, and hydration. They preferred subcutaneous over intravenous or intramuscular routes ( p = 0.017). Canadian physicians felt their nursing staff was more comfortable with subcutaneous administration ( p = 0.022) and that it was easier to administer ( p = 0.02). US physicians felt the intravenous route was more efficient ( p = 0.013)., Significance of Results: The study results suggest that exposure to the subcutaneous route influences a physician's perception. Further research is needed to explore ways to incorporate its use to a greater degree in the US healthcare system.

Purpose: For sexual and gender minority (SGM) individuals who identify as lesbian, gay, bisexual, transgender, queer, or any other sexual orientation or gender identity (LGBTQ+), the quality of palliative care can depend upon how clinicians view and communicate with this historically minoritized group. Prior literature has demonstrated that SGM patients access care at lower rates, and palliative care clinicians have suggested that SGM patients are more likely to experience discrimination than heterosexual patients. This study examined palliative care clinicians' perspectives and experiences regarding patient communication, care settings, the built environment, and inclusive care for SGM older adults with serious illness., Methods: The health disparities research framework informed a descriptive qualitative analysis of interview data with palliative care professionals (N = 20) across diverse healthcare settings within Colorado regarding their experiences and beliefs about communication and the care of SGM patients., Results: Three main themes emerged: (1) Limited sexual orientation and gender identity (SOGI) data collection; (2) Organizational and environmental inclusivity, and the "neutral" space viewed as safe; (3) Missing training platforms regarding SGM patients and a lack of opportunity to identify and discuss SGM patient needs., Conclusion: Study findings illuminated the following barriers to providing SGM-inclusive care: perspectives around (1) limitations and preferences regarding collection of SOGI data, (2) organizational and environmental inclusivity, and (3) education and training regarding cultural humility and communication with SGM patients. Findings indicate the need for multidimensional research to better understand and address SGM health disparities and promote equitable care., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Context: People living with serious illness and their care partners rely on team-based specialty hospice and palliative care (HPC) in order to achieve high quality end of life outcomes. In HPC, physician and nurse practitioner (NP) scope of practice has significant overlap so training together may offer benefits to clinicians and patients., Objectives: Assessment of clinical competencies in a post-graduate training program consisting of NPs and physicians training and learning side-by-side., Methods: A crosswalk assured NP and physician HPC clinical competencies were captured in evaluation questions used by interprofessional program faculty to observe and assess trainees. Six clinical competencies were calculated based on aggregated evaluations for each physician and NP HPC post-graduate trainee at 3, 6, 9, and 12 months annually for 3 years. For NPs and physicians, the mean slopes of the best fit lines, the final numeric score, and the mean net change between 12 and three month competencies were compared. Learner experience was captured qualitatively., Results: There was no statistical difference in the change of competency scores, the final competency scores, or the trajectory of improvement in the six competencies between physician to NP trainees. Adding NP trainees was considered by post-graduate trainees as a strength of the program, and did not detract from physician competence achievement., Conclusion: Assessing an IPE post-graduate training program in HPC was possible using a shared clinical competency framework, and revealed similar clinical gains for NPs and physicians enrolled in the program., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Palliative surgery (PS) is defined as any surgical procedure aimed at improving quality of life or relieving symptoms caused by an advanced or metastatic cancer. The involvement of patients, caregivers, and other professional figures is crucial for obtaining optimal symptom relief and avoiding complications. This study aims to evaluate the short-term outcome and related factors in patients undergoing PS., Patients and Methods: A retrospective analysis was performed in consecutive patients who underwent palliative gastrointestinal surgery at our surgical unit during the period June 2018 to May 2023. Demographic, clinical, pathological and follow-up data were collected from a prospectively maintained department database. The main outcomes were complications, symptoms palliation, symptoms recurrence and return to systemic chemotherapy. Standard statistical analysis was performed., Results: During the study period, 127 patients underwent palliative surgery. The Clavien-Dindo 3-5 complication rate and mortality rate were 19.7 % and 6 %, respectively. The resolution of symptoms was achieved in 109 patients (89 %). Successful symptom palliation was significantly related to the possibility of returning to systemic chemotherapy (SC) (OR 9.30 95 % CI 0.1.83-47.18, p 0.007). The only factor related to survival in multivariate analysis was the return to systemic chemotherapy (HR 0.25 95 % CI 0.15-0.42 0.001)., Conclusion: PS in selected patients is effective for symptom resolution and improving overall survival, if the result is making anticancer therapy possible. Prospective data collection is in any case warranted in every institution performing PS for the purpose of monitoring appropriateness and quality of surgical care., (© 2024 Published by Elsevier Ltd.)

Introduction: The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home., Methods: This study had a qualitative descriptive design based on the data from open-ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis., Results: The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support., Conclusions: It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home., (© 2024 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Background: Faced with rising needs for patient support, palliative care is shifting towards a more community-based approach. Yet the profile of volunteers in this field is poorly known., Aim: To explore psychosocial characteristics of palliative care volunteers, by comparing them to two groups, volunteers from the health and social sector without contact with palliative patients, and people from the general population without volunteer activity., Design: Observational comparative study. Data were analyzed using descriptive statistics and logistic regression analysis., Participants: The 3 groups of participants were recruited in France between September 2020 and June 2021. They completed an online survey assessing sociodemographic characteristics and psychological resources (self-efficacy, hope, optimism, resilience, mindfulness, self-compassion, empathy, forgivingness, and gratitude)., Results: Data from 559 participants were analyzed. Palliative care volunteers had overall significantly higher levels of psychological resources than control groups. Multivariate analysis revealed, among sociodemographic and psychological characteristics that showed differences between groups at the univariate level, the most efficient predictors of group status. The best criteria to distinguish palliative care volunteers from health and social sector volunteers were older age, having received training, and lower levels of self-compassion. To distinguish palliative care volunteers from people with no volunteer activity, older age and non-active professional status were the best criteria., Conclusions: Palliative care volunteers displayed more psychological resources than controls. However, older age and being trained for volunteering, emerged as stronger factors for distinguishing palliative care volunteers from controls. Pursuing research about these volunteers should facilitate recruitment, training, and retention., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient's death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver's meaning-making that occurred after the patient's death., Methods: In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver's perspective before and after the death of the patient. Thematic content analysis method was conducted., Results: A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers' recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort , and Impact on family ties . Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, "Have I done enough?," Significance in the timing of events , and Gaining strength and personal growth ., Significance of Results: The deathbed is a salient time for family caregivers as they prepare for patient's death. There are opportunities to provide support to the family based on the study findings.

Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams., Objectives: This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues., Methods: Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC., Results: As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being., Conclusions: With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families., Competing Interests: Disclosure The authors have no conflicts of interest to disclose., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Today, many older adults use health technologies, approach their final days with laptops, smartphones, and tablets. Telepalliative care is a service that remotely delivers palliative care through videoconferencing, telephonic communication, or remote symptom monitoring. The service meets the needs of patients who want to die at home and reducing unnecessary hospitalizations. The objective of this study is to map the literature on the use of technology by the terminally ill older adult population being cared for at home, to identify which technology systems are in use, to determine how technology can change communication between palliative care professionals and patients, and to explore the strengths or weaknesses patients perceive regarding the use of technology., Methods: We conducted a scoping review following the methodology of Arksey and O'Malley. A literature search was conducted in the MEDLINE, Embase, Web of Science, SCOPUS, PsycINFO, CINAHL, Ilisi and Google Scholar databases., Results: Fourteen eligible papers identified various tools available in clinical practice and found that most older adults are comfortable and satisfied using them. Despite being physically distanced from clinicians, patients felt cared for even though eye contact was lacking. Being unfamiliar with technology emerged as a barrier to telepalliative care in addition to difficulties caused by screen size and internet connection problems., Conclusions: Older adults in palliative care at home perceive technology as a means of receiving efficient care. However, future research is needed to investigate what they look for in a technological tool and to develop more suitable technologies for them., Clinical Trial Registration: The protocol of this study has been published in the Open Science Framework (OSF) preregistrations at https://osf.io/acv7q to enhance replicability and transparency and reduce any publication or reporting bias., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Surgical palliative care (PC) facilitates communication between surgeons and patients/family about prognosis, symptom control, and therapeutic goals. Surgical critical care (SCC) fellows are at the forefront of the intensive care team; thus, we aim to assess previous and ongoing experiences in delivering PC by surveying fellows at a large academic center. Seventeen surveys were completed in which 59% of fellows reported no previous PC education. Six fellows (35%) reported participating in goals of care/end-of-life (GOC/EOL) discussions "a few times a year" during residency, while 41% responded the same for transitioning patients to comfort-focused care (CFC). When asked if respondents felt comfortable facilitating GOC/EOL discussions prior to fellowship, 7 (41%) answered "disagree" or "strongly disagree." Most fellows reported that more training in navigating GOC/EOL discussions (88%) and transitioning patients to CFC (76%) is needed. This assessment demonstrates variability in fellows' prior PC exposure and a strong desire for more structured training., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Evaluating the visual functions of children with an easy-to-use and evidence-based method during the preverbal period will enable early diagnosis and intervention of visual impairments. The aim of this study is to determine the utility and reliability of the Turkish version of the Preverbal Visual Assessment (PreViAs) questionnaire, which was developed to evaluate the visual functioning of preverbal infants. Population and Methods: The PreViAs questionnaire was administered to primary caregivers of term infants under 24 months of age, and their responses were recorded. Results: Data from the 278 participating infants were analyzed to assess the internal consistency of the PreViAs questionnaire. Results showed a high level of consistency with Cronbach's alpha value of 0.958 for the total score, suggesting strong internal coherence. In addition, the Cronbach's alpha values for each domain were 0.890, 0.913, 0.951, and 0.922 for visual attention, visual communication, visual processing, and visual-motor coordination, respectively, indicating good internal consistency for each subdomain. Conclusion: The Turkish version of the PreViAs questionnaire is useful and reliable for assessing functional vision during the preverbal period., (Sociedad Argentina de Pediatría.)

Context: Use of palliative care interventions in chronic obstructive pulmonary disease (COPD) has increased in recent years and inclusion criteria used to identify patients with COPD appropriate for palliative care vary widely. We evaluated the inclusion criteria to identify ways to improve enrollment opportunities for patients with COPD., Objectives: To determine inclusion criteria used to select patients with COPD for palliative care trials., Methods: A systematic review was conducted to determine criteria used to select patients with COPD for palliative care randomized controlled trials. A narrative synthesis was conducted for all trials., Results: Inclusion criteria were highly heterogeneous. Most studies (n = 11, 79%) used a combination of criteria to identify patients with COPD. Commonly used criteria included hospitalization for an acute exacerbation of COPD (n = 8, 57%), home supplemental oxygen use (n = 8, 57%), and spirometry values confirming COPD (n = 6, 43%). Three studies (21.4%) used Modified Medical Research Council score and two studies (21%) used physician prognosis or a performance scale., Conclusion: The most common criteria, a hospitalization for acute exacerbation of COPD or supplemental oxygen use at home, both have the benefit of selecting patients who have a higher symptom burden or higher healthcare utilization who might therefore benefit more from palliative care. By describing the landscape and variability of previously used inclusion criteria, this article serves as a resource for clinicians and researchers. Developing a consistent set of inclusion criteria in the future would help generate generalizable results that can be translated into clinical practice to improve the lives of patients with COPD., Prospero Registration Number: CRD42022306752., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. All rights reserved.)

Objectives: Prolonged distress is a risk factor for burnout among health-care providers (HCP) and may contribute to demoralization. We examined sources of distress during the COVID-19 pandemic and associations with demoralization., Methods: This prospective cross-sectional survey of HCP was conducted among palliative care providers of an academic medical center. Participants completed a survey evaluating sources of distress and the Demoralization Scale-II (DS-II) to measure the intensity of demoralization., Results: Of 106 eligible participants, 74 (70%) completed the survey. DS-II median (range) score was 2 (0-19). There were no statistically significant associations with demographic characteristics. Participants reported high rates of distress for multiple reasons and high rates of sense of fulfillment (90%) and satisfaction (89%) with their profession., Significance of Results: Our study identified high levels of distress but low demoralization rates. Further study to evaluate fulfillment and satisfaction as protective factors against demoralization and burnout is indicated.

The study aimed to explore experiences of encounters with health care professionals among patients receiving palliative cancer care in specialist palliative care inpatient units. A qualitative explorative study design was conducted in a specialist palliative care inpatient setting. Data collection was implemented using semi-structured individual interviews (20 palliative care cancer patients) and analysed with inductive content analysis. Palliative care patients experienced both meaningful and disrespectful encounters with healthcare professionals. The meaningful encounters encompassed authentic and supportive experiences, while the disrespectful encounters included indifferent and inadequate experiences. Caring for a patient receiving palliative care requires care beyond tending to a patient's physical needs. Patients should be encountered holistically and as equal human beings without highlighting their roles as patients. The healthcare professionals and the organisations should also acknowledge the importance of time and effort spent for encounters and conversations with the patients instead of concentrating resources mainly on physical care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: Recent studies on the quality of life in women with breast cancer show a high prevalence of signs and symptoms that should be the focus of palliative care (PC), leading us to question the current role they play in addressing breast cancer. Therefore, the objective of this review is to map the scope of available literature on the role of PC in the treatment of women with breast cancer., Methods: This is a methodologically guided scoping review by the Joanna Briggs Institute and adapted to the PRISMA Extension for Scoping Reviews (PRISMA-ScR) Checklist for report writing. Systematic searches were conducted in 8 databases, an electronic repository, and gray literature. The searches were conducted with the support of a librarian. The study selection was managed through the RAYYAN software in a blind and independent manner by 2 reviewers. The extracted data were analyzed using the qualitative thematic analysis technique and discussed through textual categories., Results: A total of 9,812 studies were identified, of which only 136 articles and 3 sources of gray literature are included in this review. In terms of general characteristics, the majority were published in the USA (35.7%), had a cross-sectional design (44.8%), and were abstracts presented at scientific events (19.6%). The majority of interventions focused on palliative radiotherapy (13.6%). Thematic analysis identified 14 themes and 12 subthemes., Significance of Results: Our findings offer a comprehensive view of the evidence on PC in the treatment of breast cancer. Although a methodological quality assessment was not conducted, these results could guide professionals interested in the topic to position themselves in the current context. Additionally, a quick synthesis of recommendations on different palliative therapies is provided, which should be critically observed. Finally, multiple knowledge gaps are highlighted, which could be used for the development of future studies in this field.

Objectives: The PoET (Prevention of Error-based Transfers) project seeks to align long-term care (LTC) home informed consent practices to existing legislation, thereby reducing consent-related error-based transfers to acute care. We sought to measure changes in resident-level palliative care provision after participating in the PoET Southwest Spread Project (PSSP), and to identify patient and LTC home characteristics associated with palliative care provision., Design: Quasi-experimental matched (1:1 ratio) cohort study design using linked population-based health administrative data., Setting: Sixty LTC homes (PSSP = 30; Control = 30) in Ontario, Canada, from November 2019 to December 2021., Methods: We matched 30 PSSP to 30 control homes and described incidence rates for resident-level palliative care provision (ie, physician palliative care encounters and palliative medication prescriptions) during the 7-month postimplementation period. We used generalized linear mixed models to evaluate the association between PSSP implementation and palliative care provision during the postimplementation period. We adjusted for resident-level characteristics (ie, age, sex, comorbidity status) and home-level characteristics (ie, rurality status, profit model, COVID-19 impact). We identified a decedent subcohort to measure palliative care provision patterns during the last 2 months of life., Results: We captured a matched cohort of 8894 residents (PSSP = 4103; Control = 4791). Incidence rates of palliative care encounters increased during the postimplementation period for PSSP (82.6 to 85.4 per 100 person-months) but not for control residents (68.8 to 65.3 per 100 person-months). After adjusting for key covariates, PSSP exposure was associated increased palliative care provision (incidence rate ratio 2.47, 95% CI 2.31-2.64) and palliative care medication prescription (1.16, 95% CI 1.12-1.20). Larger home size, certain health regions, and higher number of comorbidities were associated with increased physician palliative care encounters., Conclusions and Implications: By promoting correct informed consent practices in LTC, PSSP participation increased palliative care provision for PSSP LTC residents across all settings., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: The demand of palliative care is increasing due to the aging population and treatment hesitancy or intentional avoidance compromises symptom management., Objectives: To identify patient beliefs associated with medication hesitancy by using the theory of planned behavior (TPB) namely, attitudes, subjective norms, behavioral intention, and perceived behavioral control associated with medication hesitancy or intentional noncompliance by avoidance., Methods: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis guideline was followed to conduct a systematic literature search involving the CINAHL, Embase, MEDLINE, and PsycINFO databases from inception until March 2022. Hand-searched articles from reference lists and gray literature were included. Thematic analysis was conducted on qualitative data and triangulated with quantitative data., Results: About 554 articles were retrieved from the literature search and 17 articles were included based on the eligibility criteria. Three subthemes that were identified under TPB constructs were attitude : negative attitude toward medications, passive attitude toward illness and inaccurate information about disease or medication; one subtheme was identified under subjective norms : perceived negative opinions from others; and one subtheme was identified under perceived behavioral control : perception of manageable symptoms. Quantitative data provided triangulation of qualitative findings related to fear of addiction and side effects, feelings of hopelessness, unclear direction and information, social stigma, endurable symptoms, and illness as determinants for medication avoidance., Significance of Results: This systematic review highlighted some patient beliefs related to medication hesitancy or avoidance. Clinicians should take patient beliefs and concerns into consideration when creating treatment regimens for people receiving palliative care to optimize medication adherence and the quality of care.

Congenital heart disease (CHD) is a well-established risk factor for inferior waitlist and post-heart transplant survival in children. Differences in outcomes between CHD subgroups are understudied. The present study compared outcomes for palliated hypoplastic left heart syndrome (HLHS) patients to other non-single ventricle CHD (non-SVCHD) and non-CHD patients. United Network for Organ Sharing was used to identify children (age < 18) listed for heart transplant in the United States between 2016 and 2021. CHD sub-diagnoses were only available for United Network for Organ Sharing status 1a after 2015, thereby defining the cohort. Waitlist outcomes were studied using competing-risk time-to-event analysis for transplantation, mortality/decompensation, and alive-on-waitlist. Multivariable Cox proportional hazards regression analyses were used to identify factors associated with inferior post-transplant survival. Patients included: palliated-HLHS (n = 477), non-SVCHD (n = 686), and non-CHD (n = 1261). At listing, Palliated-HLHS patients were older than non-SVCHD (median 2-year [IQR 0-8] vs median 0-year [0-3], respectively) and younger than non-CHD (median 7-year [0-14]) (P < 0.001 vs both), and were more likely to be white (P < 0.01 vs both). Upon time-to-event analysis, rates of waitlist mortality/decompensation rates were greater among non-SVCHD than palliated-HLHS. Post-transplant survival was comparable between palliated-HLHS and non-SVCHD (P = 0.920) but worse compared to non-CHD (P < 0.001). Both palliated-HLHS (HR 2.40 [95% CI 1.68-3.42]) and non-SVSCHD (2.04 [1.39-2.99]) were independently associated with post-transplant mortality. Palliated-HLHS patients with heart failure experience significantly worse post-transplant outcomes than non-CHD but, compared to other CHD patients, experience superior waitlist and comparable post-transplant survival. While a high-risk cohort, HLHS patients can achieve gratifying waitlist and post-transplant survival., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Introduction: Palliative care is a medical and humanitarian approach that improves the quality of life of patients, and their families, who are facing problems associated with chronic and life-threatening illnesses. Few studies have evaluated the effectiveness of mindfulness-based interventions for terminally ill or incurable patients. The aim of this study was to systematically review the literature on the effect of mindfulness-based interventions on symptom control and quality of life in patients in palliative care., Methods: PubMed, Web of Science and Cochrane databases were searched for articles, published between January 2017 and December 2022, in English, including randomized controlled and clinical trials. Participants : terminally ill or incurable patients. Interventions : any mindfulness-based intervention. Comparators : any. Outcomes : symptom control and quality of life. The risk of bias was analysed through Cochrane's ROB-2 tool., Results: Eight studies were included involving 609 patients and 75 dyads patients-spousal caregivers. The overall risk of bias was low to moderate. Mindfulness-based interventions are helpful in managing suffering, anxiety and depressive symptoms, fatigue, insomnia, drowsiness, appetite, and spiritual well-being., Conclusion: Mindfulness-based interventions control several symptoms and improve spiritual quality of life in patients in palliative care. Additionally, their informal caregivers also benefit from these interventions. Future trials are crucial to investigate other effects of mindfulness-based interventions, and their long-term benefits, in patients in palliative care., Competing Interests: Declaration of Conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: AS and HJC declare no potential conflicts of interest regarding the research, authorship, and/or publication of this article. PRP received honoraria for lectures from Angelini Farmacêutica Lda Portugal and from Grünenthal, S.A. Portugal.

Background: Few studies have examined patient preferences for telehealth in palliative care after the availability of COVID-19 vaccines. We examined patient preferences for video versus in-person visits and factors contributing to preferences in the postvaccine era., Methods: This is a cross-sectional survey of patients who were seen at our palliative care clinic between April 2021 and March 2022. Patients were surveyed directly their preference for either video or in-person visits for outpatient palliative care (primary outcome). We also surveyed preferences including convenience, cost, wait time, and perceptions of COVID-19 safety regarding their palliative virtual-video visit. We examined clinical factors associated with preferences with multivariate logistic regression., Results: About 200 patients completed the survey. 132 (67%, 95% confidence interval [CI]: 60%, 74%) preferred virtual-video, while 16 (8%) preferred in-person visits during the COVID-19 pandemic. About 120 (61%, 95%CI: 54%, 68%) preferred virtual-video after the pandemic. Patients perceived virtual-video favorably regarding travel and related costs (179 [91%]), convenience (175 [88%]), and wait time (136 [69%]). Multivariable analysis showed concerns for catching COVID-19 from healthcare providers (odds ratio [OR]: 4.20; 95%CI: 1.24-14.25; P = 0.02) and feeling comfortable with computers or mobile devices (OR: 4.59; 95%CI: 1.02, 20.60; P = 0.047) were significantly associated with preferring virtual-video. Patients who were of Hispanic or Latino ethnicity (OR: 0.25; 95%CI: 0.09, 0.71) and had increased dypsnea (OR: 0.74; 95%CI: 0.59, 0.93) were less likely to prefer video over in-person., Conclusion: Patients expressed strong preference for video over in-person visits in the outpatient palliative care setting., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Aim: Dignity in older persons is a goal of palliative care. This study aimed to perform a process evaluation of the Swedish Dignity Care Intervention (DCI-SWE) in municipal palliative care in Sweden, focusing on implementation, context, and mechanism of impact., Methods: This study had a process evaluation design. The Knowledge to Action framework supported the implementation of the DCI-SWE. The intervention was used by community nurses with older persons (n = 18) in home healthcare and nursing homes. Data were collected by focus groups- and individual interviews with community nurses (n = 11), health care professionals (n = 5) and managers (n = 5), reflective diaries, and field notes., Results: Grasping the DCI-SWE was challenging for some community nurses. Enhanced communication training and increased engagement from managers were requested. However, the DCI-SWE was perceived to enhance professional pride in nursing. In terms of fidelity, dose and reach the project was not fully achieved. Regarding mechanism of impact the DCI-SWE contributes to address older persons' loneliness and existential life issues, as it put conversations with older persons on community nurses' agenda., Conclusions: The DCI-SWE provided opportunities to maintain older persons' dignity and quality of life. However, with refinements of design and the DCI-SWE, the sustainability in the context may increase., (© 2023 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Objectives: Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called "informal caregivers." The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed., Methods: An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals., Results: Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness., Significance of Results: This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between "roles." It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one's illness, given how important it is to address the family's needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people's needs.

In palliative care in the UK, occupational and/or physiotherapists consult with patients to assess how they are managing their activities for daily living in light of their life-limiting condition(s), and to identify any activities that might benefit from therapeutic intervention. In this paper we use conversation analysis to describe a patient's practice in these consultations, which we call "procedural detailing," whereby they produce a step-by-step description of how they do some everyday activity, such that it is depicted as adequate, stable, and unproblematic. Based on a collection of 15 cases identified in video recordings of consultations in a large English hospice, we demonstrate how patients use this practice to normalize their routine conduct and thereby reject or rule out an actual or anticipated therapeutic recommendation. Our analysis suggests that such descriptions let patients participate in shared decision-making by revealing their preference for routines that preserve their level of independence and dignity.

Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF on patient-centered outcomes is poorly understood. The present study sought to assess the association of programmatic implementation of palliative care into the heart transplant evaluation process with hospital-free days (HFD) and end of life (EOL) treatment choices. The study included patients less than 19 years of age who underwent a heart transplant evaluation between February 2012 and April 2020 at a single center. Patients evaluated in the programmatic palliative care (PPC) era (January 2016-April 2020) were compared to patients evaluated in the pre-PPC era (February 2012-December 2015). The study included 188 patients, with 91 (48%) in the PPC era and 97 (52%) in the pre-PCC era. Children < 1 year of age at the time of the evaluation represented 32% of the cohort. 52% of patients had single ventricle physiology. PPC was not significantly associated with increased HFD (IRR 0.94 [95% CI 0.79-1.2]). PPC was however associated with intensity of EOL care with decreased mechanical ventilation (OR 0.12 [95% CI 0.02-0.789], p = 0.03) and decreased use of ionotropic support (OR 0.13 [95% CI 0.02-0.85], p =0.03). PPC in pediatric heart transplant evaluations may be associated with less invasive interventions at EOL., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objectives: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs' psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League ( SGL ), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs' lived experiences., Methods: We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL . Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews., Results: AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences., Significance of the Results: Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.

Context: Studies suggest the feasibility and acceptability of telehealth in outpatient pediatric palliative care. However, there is a need for data that describes the implementation and quality of telehealth, relying on objective and validated measures., Objective: We sought to compare the provision of pediatric palliative care by delivery method., Methods: We conducted a retrospective electronic health record review of patients seen by our outpatient palliative care team over a two-year period. Demographic, diagnostic, and health utilization data as well as encounter characteristics were compared between patients seen in person (IP), through telehealth (TH), and both (IP/TH)., Results: Three hundred ninety-four patients were evaluated with 889 outpatient pediatric palliative care encounters. Non-English speaking patients were less likely to receive palliative care through TH, as were patients without active patient portals. Median follow-up time was longer for patients seen through TH or IP/TH. Patients with malignancies were seen more frequently IP while children with neurologic diagnoses, technology dependence, and a higher number of complex chronic conditions were seen more frequently via TH. Health outcomes, end of life quality metrics, and encounter-level quality indicators were similar across care delivery methods. Review of systems, pain, and mood management, and advance care planning happened more frequently IP while goals of care discussions and medical decision-making happened more through TH., Conclusion: Despite differences in patients seen and palliative interventions provided in person compared to telehealth, health outcomes, and quality indicators were similar across care delivery methods. These data support the continued practice of telehealth in palliative care and highlight the need for equity in its evolution., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: Triggers have been developed internationally to identify intensive care patients with palliative care needs. Due to their work, nurses are close to the patient and their perspective should therefore be included. In this study, potential triggers were first identified and then a questionnaire was developed to analyse their acceptance among German intensive care nurses., Methods: For the qualitative part of this mixed methods study, focus groups were conducted with intensive care nurses from different disciplines (surgery, neurosurgery, internal medicine), which were selected by convenience. Data were analysed using the "content-structuring content analysis" according to Kuckartz. For the quantitative study part, the thus identified triggers formed the basis for questionnaire items. The questionnaire was tested for comprehensibility in cognitive pretests and for feasibility in a pilot survey., Results: In the qualitative part six focus groups were conducted at four university hospitals. From the data four main categories (prognosis, interprofessional cooperation, relatives, patients) with three to 15 subcategories each could be identified. The nurses described situations requiring palliative care consults that related to the severity of the disease, the therapeutic course, communication within the team and between team and patient/relatives, and typical characteristics of patients and relatives. In addition, a professional conflict between nurses and physicians emerged. The questionnaire, which was developed after six cognitive interviews, consists of 32 items plus one open question. The pilot had a response rate of 76.7% (23/30), whereby 30 triggers were accepted with an agreement of ≥ 50%., Conclusion: Intensive care nurses see various triggers, with interprofessional collaboration and the patient's prognosis playing a major role. The questionnaire can be used for further surveys, e.g. interprofessional triggers could be developed., (© 2024. The Author(s).)

Background: Palliative care remains key in assisting patients who have life-threatening conditions. In most low- and middle-income countries, it is often offered through a centralized system with limitations, including Malawi. In 2014, the World Health Organization called for improving palliative care access through primary health care and community models. Malawi and Neno District subsequently decentralized palliative care delivery to local health centers. This qualitative study explored the decentralization of palliative care services in Neno District, Malawi., Methods: The descriptive qualitative study was conducted between 2021 and 2022 in two conveniently selected health centers providing palliative care in the Neno District. Fourteen healthcare workers were purposefully selected to participate in two focus groups. Fifteen patients were conveniently selected and participated in three focus groups. Data was analyzed using deductive and inductive approaches. Focused group discussions were conducted in Chichewa (Malawi's official local language), audio recorded, transcribed, translated into English, and analyzed thematically., Results: Four main themes emerged from the focus groups. Patients described positive relationships with healthcare workers built on trust and holistic care over time. Accessing care included transport, social support, time constraints, and distance issues. Facilities effectively responded to needs through coordinated care and follow-up. Decentralization was perceived to benefit patients by reducing travel challenges and improving local access to efficient and inclusive palliative care services. However, challenges with resources, distance, and social support remained. Limitations in sampling and missing participant details necessitate further research with broader sampling., Conclusion: Overall, the study provides empirical evidence that can optimize palliative care delivery in similar low-resource contexts by informing policies to address barriers through decentralized approaches., (© 2024. The Author(s).)

Background: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advance care planning (ACP) and patterns of end-of-life care for patients who died in the hospital., Methods: This is a retrospective cohort study of medical records extracted from a clinical data warehouse, covering patients who died aged 0-24 in an academic tertiary children's hospital in South Korea. Participants were categorized into before (2011-2013; pre-period) and after (2017-2019; post-period) the introduction of an SPC service. Within the post-period, patients were further categorized into SPC recipients and non-recipients., Results: We identified 274 and 205 patients in the pre-period and post-period, respectively. ACP was conducted more and earlier in the post-period than in the pre-period, and in patients who received palliative care than in those who did not. Patients who received SPC were likely to receive less mechanical ventilation or cardiopulmonary resuscitation and more opioids. A multivariable regression model showed that earlier ACP was associated with not being an infant, receiving SPC, and having a neurological or neuromuscular disease., Conclusions: SPC involvement was associated with more and earlier ACP and less intense end-of-life care for children and young adults who died in the hospital. Integrating palliative care into routine care can improve the quality of end-of-life care by reflecting patients' and their families' values and preferences., (© 2024. The Author(s).)

Objectives: To better understand the type of care offered to Italian patients with advanced breast cancer at the End-of-Life (EoL), we conducted a retrospective observational study. EoL was defined as the period of six months before death., Methods: One hundred and twenty-one patients with advanced breast cancer (ABC) treated at IRCCS San Martino Policlinic Hospital who died between 2017 and 2021 were included. Data about patient, disease, and treatment characteristics from breast cancer diagnosis to death, along with information about comorbidities, medications, imaging, specialist evaluations, hospitalization, palliative care and home care, hospice admissions, and site of death were collected., Results: 98.3% of the patients received at least one line of active treatment at EoL; 52.8% were hospitalized during the selected period. Palliative (13.9%), psychological (7.4%), and nutritional evaluations (8.2%) were underutilized. Palliative home care was provided to 52% of the patients. Most of the patients died at home (66.1%) and fewer than one out of five (18.2%) died at the hospital. Among the patients who died at home, 27.3% had no palliative support., Conclusions: Our findings indicate that palliative care in EoL breast cancer patients is still inadequate. Only a minority of patients had psychological and nutritional support While low nutritional support may be explained by the fact that typical symptoms of ABC do not involve the gastrointestinal tract, the lack of psychological support suggests that significant barriers still exist. Data on the site of death are encouraging, indicating that EoL management is increasingly home centered in Italy., (© 2024. The Author(s).)

Background: Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care referral. Strategic solutions to develop integrated palliative care was a critical study theme. In this paper, we have explained and interpreted these strategic solutions through the lens of feedback intervention theory., Methodology: The study findings were interpreted using Kumar's six-step approach that enabled systematic evaluation of a theory's appropriateness and alignment with the researcher's paradigm, methodology, and study findings. It also explained how theory informed analysis and elucidated challenges or the development of new models. The feedback intervention theory appraises the discrepancy between actual and desired goals and provides feedback to improve it., Results: Strategic solutions generated from the study findings were coherent with the aspects elucidated in theory, like coping mechanisms, levels of feedback hierarchy, and factors determining the effect of the feedback intervention on performance. Paediatric oncologists suggested integrating palliative care providers in the team innocuously, improving communication between teams, relabelling palliative care as symptom control, and working with a skilled and accessible palliative care team. The paper proposes an infinite loop model developed from the study, which has the potential to foster integrated palliative care through excellent collaboration and continuous feedback., Conclusion: Applying feedback intervention theory can bridge the gap between actual and desired practice for integrated cancer palliative care in paediatric oncology., (© 2024. The Author(s).)

Background: Nursing homes and other long-term care services account for a disparate share of COVID-19 cases and casualties worldwide. During COVID-19 there is a distinct need to preserve a holistic view of the wellbeing of residents of nursing homes, be mindful of their rights as citizens, and to be aware of protecting residents from infection. The delivery of health and social care throughout a pandemic must remain person-centred and adhere to a human rights-based approach., Methods: This study aimed to capture nursing home residents, their families and staff's perspective of the nursing homes residents experience, approaches of staff and the nursing home environment. An online survey was distributed via stakeholder networks and online platforms across Ireland. This study was performed and reported in line with the Consensus-Based Checklist for Reporting of Survey Studies (CROSS)., Results: 25 residents, 42 family members and 51 staff completed the survey (n = 118). Across the domains measured all but one aspect scored above 50% (residents get up and go to bed when they want 41.5%) with the highest score of 89.1% scored for the nursing home is comfortable and well-kept. Results highlight evidence of positive experiences and endeavours to preserve social connections, residents were in a safe place cared for by staff who did their best in a difficult position and who went above and beyond their duty of care. However, some families reported poor communication, no internet connections, not enough phones or tablets, and that staff were busy and unable at times to assist residents who needed help using phones/tablets., Conclusion: This study highlights the importance of human rights and how they ought to inform and shape the advancement of public health advice and policy documents. Overall, nursing home residents, their families and staff reported favourably on the study measures. However, issues pertaining to communication are essential and there is a need to address issues such as the provision of accurate timely information, communication infrastructure and resources, and inconsistencies in communications. Of note is that while healthcare professionals have a duty to uphold the rights of nursing home residents, they themselves have human rights which must also be protected and supported., (© 2024. The Author(s).)

Background: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care., Methods: This cross-sectional study was conducted in five cities in China (Shanghai, Suzhou, Chongqing, Chengdu and Yunnan) between November 2022 and December 2022., Results: The analysis included 204 participants (122 females), with 158 nurses and 46 physicians. The average knowledge, attitude and practice scores were 9.75 ± 2.90 points (possible range, 0-13 points), 38.30 ± 3.80 points (possible range, 12-60 points) and 35.48 ± 5.72 points (possible range, 9-45 points), respectively. Knowledge score was higher for physicians than for nurses (P < 0.001) and for personnel with previous training in pediatric palliative care (P = 0.005). According to structural equation modelling knowledge had a direct positive effect on attitude (β = 0.69 [0.28-1.10], p = 0.001), and indirect on practice (β = 0.82 [0.36-1.28], p < 0.001); attitude had significant effect on practice as well (β = 1.18 [0.81-1.56], p < 0.001)., Conclusions: There is room for improvement in the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care. The findings of this study may facilitate the design and implementation of targeted education/training programs to better inform physicians and nurses in China about pediatric palliative care., (© 2024. The Author(s).)

This study aimed to present a new approach to predict to delirium admitted to the acute palliative care unit. To achieve this, this study employed machine learning model to predict delirium in patients in palliative care and identified the significant features that influenced the model. A multicenter, patient-based registry cohort study in South Korea between January 1, 2019, and December 31, 2020. Delirium was identified by reviewing the medical records based on the criteria of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. The study dataset included 165 patients with delirium among 2314 patients with advanced cancer admitted to the acute palliative care unit. Seven machine learning models, including extreme gradient boosting, adaptive boosting, gradient boosting, light gradient boosting, logistic regression, support vector machine, and random forest, were evaluated to predict delirium in patients with advanced cancer admitted to the acute palliative care unit. An ensemble approach was adopted to determine the optimal model. For k-fold cross-validation, the combination of extreme gradient boosting and random forest provided the best performance, achieving the following accuracy metrics: 68.83% sensitivity, 70.85% specificity, 69.84% balanced accuracy, and 74.55% area under the receiver operating characteristic curve. The performance of the isolated testing dataset was also validated, and the machine learning model was successfully deployed on a public website ( http://ai-wm.khu.ac.kr/Delirium/ ) to provide public access to delirium prediction results in patients with advanced cancer. Furthermore, using feature importance analysis, sex was determined to be the top contributor in predicting delirium, followed by a history of delirium, chemotherapy, smoking status, alcohol consumption, and living with family. Based on a large-scale, multicenter, patient-based registry cohort, a machine learning prediction model for delirium in patients with advanced cancer was developed in South Korea. We believe that this model will assist healthcare providers in treating patients with delirium and advanced cancer., (© 2024. The Author(s).)

The scope of artificial intelligence (AI) in healthcare is promising, and AI has the potential to revolutionise the field of palliative care services also. Consumer satisfaction in palliative care is a critical aspect of providing high-quality end-of-life support. It encompasses various elements that contribute to a positive experience for both patients and their families. AI-based tools and technologies can help in early identification of the beneficiaries, reduce the cost, improve the quality of care and satisfaction to the patients with chronic life-limiting illnesses. However, it is essential to ensure that AI is used ethically and in a way that complements, rather than replaces, the human touch and compassionate care, which are the core components of palliative care. This article tries to analyse the scope and challenges of improving consumer satisfaction through AI-based technology in palliative care services., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)