Oncology Palliative Care Research Articles

Bereaved parents’ perceptions of their cancer-ill child’s last month with or without palliative care - a nationwide study

BackgroundCancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to palliative care should be available to children and adults. Yet communication and prognostic disclosure may influence the timing of involvement in palliative care. Purpose: To investigate whether parents perceived that their child received palliative care and to what extent that contrasted parents’ perceptions of their child’s care and symptoms in the last month of life.MethodsA nationwide population-based parental questionnaire study in Sweden, one to five years after their child’s death (n=226). Descriptive statistics were used.ResultsA majority of parents (70%) reported that they were aware that their child received palliative care and they were informed about the incurable disease (57%) within 3 months before the child died. The most common diagnosis among children receiving palliative care was a brain tumor (45%) with a disease related death (90%) and the care was often received at home (44%). Based on the reports of parents who felt that their child did not receive palliative care, 45% were informed within days or hours about the child’s incurable disease, 45% of these children were diagnosed with leukemia, 60% died at the intensive care unit, and 49% died of treatment-related complications. It was most common for families who lived in urban areas (28%) to report their child received palliative care, in comparison to families living in sparsely populated areas (11%). A significant proportion of parents whose child received palliative care (96%) stated that the healthcare professionals were competent in caring for their child, for those who reported no palliative care it was slightly lower (74%). In both groups many children were affected by multiple symptoms the last month of life.ConclusionsThe study findings highlight the role of understanding parental perceptions of pediatric palliative oncology care, the role of initiating palliative care early, the need of access to national equitable PC and professional competence across the lifespan, regardless of diagnosis and place of residence.

Roles of pediatric surgeons in palliative pediatric oncology.

Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology palliative care, underscoring how the surgeon's expertise can be exploited to significantly benefit children with cancer. Specific examples of skills (procedural, communication, and coordination) that surgeons can provide to the multidisciplinary palliative care teams are described and the importance of collaboration is highlighted.

Recommended Physiotherapy Modalities for Oncology Patients with Palliative Needs and Its Influence on Patient-Reported Outcome Measures: A Systematic Review.

This review aims to explore the role of physiotherapy in early and traditional palliative care (PC) for oncology patients, focusing on its impact on six patient-reported outcomes (PROMs), namely fatigue, pain, cachexia, quality of life (QoL), physical functioning (PHF), and psychosocial functioning (PSF). The purpose is to assess the effectiveness of various physiotherapy interventions and identify gaps in the current research to understand their potential benefits in PC better. A systematic literature search was conducted across PubMed, Embase, and Web of Science, concluding on 21 December 2023. Two independent reviewers screened the articles for inclusion. The Cochrane Risk of Bias Tool 2 was employed to assess the risk of bias, while the GRADE approach was used to evaluate the certainty of the evidence. Nine randomized controlled trials (RCTs) were included, with most showing a high risk of bias, particularly in outcome measurement and missing data. Cognitive behavioral therapy (CBT) was the only intervention that significantly reduced fatigue, enhanced PHF, and improved QoL and emotional functioning. Graded exercise therapy (GET) did not yield significant results. Combined interventions, such as education with problem-solving or nutritional counseling with physical activity, showed no significant effects. Massage significantly improved QoL and reduced pain, while physical application therapies were effective in pain reduction. Mindful breathing exercises (MBE) improved QoL but had a non-significant impact on appetite. The overall certainty of the evidence was low. Physiotherapy can positively influence PROMs in oncology PC; however, the low quality and high risk of bias in existing studies highlight the need for more rigorous research to confirm these findings and guide clinical practice.

Fatality from COVID-19 does not affect palliative care duration among patients with advanced cancer: a retrospective cohort study.

Jomar et al. demonstrated that death due to COVID-19 did not affect the time under exclusive palliative care among patients with advanced cancer, even during the first year of the pandemic caused by a hitherto little-known disease. ◼ Fatality due to COVID-19 does not alter the time under oncological palliative care. ◼ The retrospective design of this pioneering study allows causal inference. ◼ Access to oncological palliative care frequently approaches terminality of life. This study aimed at investigating the extent to which COVID-19-induced fatalities affect the duration of palliative care among patients with advanced cancer. A retrospective cohort study was conducted at the Palliative Care Unit of the Brazilian Instituto Nacional de Câncer in Rio de Janeiro, Brazil, on 1,104 advanced cancer patients who died under exclusive palliative care between March 11, 2020, and March 31, 2021. Wilcoxon rank-sum (Mann-Whitney U) and log-rank tests were performed to examine statistical differences between the medians of time, and the Kaplan-Meier estimator was used to graphically illustrate survival over time under exclusive palliative care contingent upon the underlying causes of death of the two experimental groups (cancer versus COVID-19). A total of 133 (12.05%) patients succumbed to COVID-19. In both groups, the median time under exclusive palliative care was less than one month. The exclusive palliative care survival curves did not exhibit any statistically significant difference between the groups. Death due to COVID-19 did not modify the duration of exclusive palliative care among patients with advanced cancer.

Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review.

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care.

DEprescribing: Perceptions of PAtients living with advanced cancer. A multicentre, prospective mixed observational study protocol.

Polypharmacy in patients with advanced cancer represents a major public health problem, leading to risk of iatrogenesis, decrease of quality of life and increase of healthcare costs. In the field of geriatrics, health policies have been developed to address polypharmacy through the use of deprescribing tools. Recently, palliative care initiatives have been introduced, yet these have not fully considered the specificities of this population, particularly their perceptions. It is therefore important to better understand patients' perceptions of deprescribing in order to adapt tools and actions to make these approaches more effective. The aim is to investigate patients' perceptions of deprescribing in palliative oncology care, and to explore factors that may influence patients' attitudes and beliefs about deprescribing and to validate a specific questionnaire (rPATD) in this population. An ancillary study will investigate the relationship between patients' health literacy and their perception of deprescribing. A prospective, observational, multicenter study will be conducted using a sequential mixed exploratory design in a population of patients living with advanced cancer and with a physician-estimated life expectancy of less than 1 year. The study will include an initial qualitative phase. Individual semi-structured interviews using a descriptive approach (thematic analysis) will be conducted (upon saturation). Following analysis of the qualitative data, a quantitative study including 300 patients will be realized to meet secondary objectives. Several data will be collected and 2 self-questionnaires will be administered: the BMQ (beliefs about medicine) and rPATD (perception of deprescribing) possibly supplemented by additional items if required by the qualitative analysis. The auxiliary study will be conducted during this second phase, using a validated self-questionnaire to assess patients' level of literacy. The disparate outcomes will facilitate the understanding of the perception of deprescribing in palliative oncology care, enabling the development of tailored approaches adapted to this population. ClinicalTrials Identifier: NCT06193083.

Preserving the integrity of personhood in people with advanced cancer: An in-depth qualitative study among patients, relatives, and care professionals

Background: Every advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking. Aim: To understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers. Design: A qualitative study using in-depth interviews with patients, relatives, and care professionals. Interviews were transcribed verbatim and analysed using a conventional content analysis. Setting/participants: Fifty-four interviews with 17 patients from a university oncology department and palliative care service, 15 relatives and 22 care professionals from physicians to funeral directors. All interviewees were recruited by a German university hospital. Results: We developed a novel model describing the diagnosis with advanced cancer as a highly disruptive experience that threatens to challenge the integrity of personhood in cancer patients through four areas: communication, knowledge, relationships, and confidence. We were able to identify factors leading to disintegration in these areas and factors supporting a restoration of integrity of personhood. Conclusions: The developed model provides a more thorough understanding of patients lived experiences. It can help to develop new interventions along the cancer care continuum to support patients in the complex challenges they face. These interventions should focus on supporting the integrity of personhood.

Knowledge and training among nursing students regarding the conspiracy of silence in palliative care: A participatory action research

AimTo develop and implement specific training based on the knowledge and management of conspiracy of silence among nursing students. BackgroundConspiracy of silence refers to the concealment of information from a patient on the family’s request, under the influence of a paternalistic culture that seeks to protect the patient. DesignParticipatory action research. MethodsWas conducted in the following stages: reconnaissance (focus groups); planning, action and observation (theoretical sessions); and reflection (analysis of care plans). The focus group consisted of six fourth year and eight second-year students. The intervention was conducted with 42 s-year students and a total of 93 s-year students participated in the resolution of the clinical case. The study was conducted between October 2022 and June 2023 at the Faculty of Nursing, University of Valencia. For data analysis, the process described by Carrillo et al. (2011) was followed, involving coding and the creation of categories and subcategories. ResultsThe focus group deficiencies were detected in the students' learning of palliative care competence, breaking bad news and the conspiracy of silence (reconnaissance stage). Therefore, an intervention was conducted to reinforce these knowledge areas, specifically addressing the conspiracy of silence (planning, action and observation stages). The resolution of the case showed how students with training approached the situation more comprehensively, including the family and proposed activities that were consistent with managing the situation (reflection stage). ConclusionsAn active feedback process was successfully established, where the students' feedback helped create specific training on oncological palliative care and provided the students with tools to manage the conspiracy of silence. The results underscore the importance of providing students with training in palliative care and managing conspiracy of silence, through therapeutic communication training, active training or enhancing emotional intelligence. This training is essential for cultivating the attitudes and skills required to deliver high-quality palliative care.

Educational Needs and Perspectives about Palliative Care in Oncology: Interviews with Primary Care Physicians and Nurses

Educational Needs and Perspectives about Palliative Care in Oncology: Interviews with Primary Care Physicians and Nurses

Quality indicators for integrating oncology and home palliative care in Japan: modified Delphi study.

Home palliative care service increases the chance of dying at home, particularly for patients with advanced cancer, but late referrals to home palliative care services still exist. Indicators for evaluating programs that can facilitate the integration of oncology and home palliative care have not been defined. This study developed quality indicators for the integration of oncology and home palliative care in Japan. We conducted a systematic literature review (Databases included CENTRAL, MEDLINE, EMBASE, and Emcare) and a modified Delphi study to develop the quality indicators. Panelists rated a potential list of indicators using a 9-point scale over three rounds according to two criteria: appropriateness and feasibility. The criterion for the adoption of candidate indicators was set at a total mean score of 7 or more. Final quality indicators with no disagreement were included. Of the 973 publications in our initial search, 12 studies were included. The preliminary list of quality indicators by systematic literature review comprised 50 items. In total, 37 panelists participated in the modified Delphi study. Ultimately, 18 indicators were identified from the following domains: structure in cancer hospitals, structure in home palliative care services, the process of home palliative care service delivery, less aggressive end-of-life care, patient's psychological comfort, caregiver's psychological comfort, and patient's satisfaction with home palliative care service. Comprehensive quality indicators for the integration of oncology and home palliative care were identified. These indicators may facilitate interdisciplinary collaboration between professional healthcare providers in both cancer hospitals and home palliative care services.

Pediatric Palliative Care of a Transgender Adolescent.

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navigated the immense difficulty of a cancer diagnosis and began to understand their child's gender identity. Literature on the care of gender diverse pediatric patients with terminal illness is minimal, but applications from adult literature, and research on supporting gender diverse adolescents more broadly, provided guidance for palliative care, oncology, and gender-affirming care teams. We believe that honoring and supporting the gender identity of adolescents with terminal illness is an essential aspect of end-of-life care. This case report outlines challenges faced by multidisciplinary pediatric team members who provided gender-affirming care for a minor under hospice care and amplifies the need for future research and guidelines pertinent to this patient population.

Behavioral economic interventions to embed early palliative care in community oncology (BE-EPiC): A pragmatic cluster-randomized trial.

Behavioral economic interventions to embed early palliative care in community oncology (BE-EPiC): A pragmatic cluster-randomized trial.

Oncologic outpatient specialty palliative care referral utilization: A single institution quality improvement project.

e23205 Background: ASCO recommends that late-stage and/or recurrent disease patients with a prognosis of 6-24 months receive specialty palliative care within eight weeks of diagnosis. Prior studies suggest only 30% of eligible patients are referred to outpatient palliative care. Little is known about existing referral patterns to direct quality improvement initiatives. Our aim was to characterize outpatient palliative care referral sources, timeliness, and completion rates across our cancer center. More broadly, this investigation may serve as a model for outpatient palliative care utilization improvement at other cancer centers. Methods: A single institution retrospective quality improvement study was conducted of patients in the seven oncology subspecialties with the most palliative care referrals from 2019 – 2022. Data collected included demographics, referral source, and utilization metrics. Outcomes were rate of referral completion and time from referral to first palliative care visit, hospice enrollment, and/or death. Descriptive statistics were performed. Results: 1671 outpatient specialty palliative care referrals were placed. 57% were initiated by medical oncologists, 21% by inpatient palliative care consulting service at hospital discharge, and 14% by surgical oncology. 27% of referred patients did not schedule an appointment. Gynecologic and breast cancer patients had the highest rates of being scheduled. Median time from referral to appointment was 20 days (interquartile range 9 – 30 days). Reasons patients did not utilize palliative care included transition to hospice (41%), lack of interest (41%), or death prior to visit (7%). 79% of patients seen by palliative care who died were enrolled in hospice. Median time from palliative care referral to hospice enrollment was 66 days (IQR 22 – 164 days), and median time from hospice enrollment to death was 13 days (IQR 5 – 31 days). Conclusions: In a single institution self-evaluation, most patients referred to outpatient specialty palliative care completed referral within thirty days. Within the context of this institution, relevant goals for quality improvement interventions include increasing palliative care referrals among surgical oncologists and shifting palliative care referrals earlier in the disease course and prior to need for inpatient hospital admission. Understanding the elements of the creation of our palliative care referral database and relevant data tracking may serve as a method for other institutions to target interventions that may improve uptake of outpatient palliative care referrals at cancer centers more broadly.

Mistletoe Extract in Patients With Advanced Pancreatic Cancer.

Patients with advanced pancreatic cancer have limited survival and few treatment options. We studied whether mistletoe extract (ME), in addition to comprehensive oncological treatment and palliative care, prolongs overall survival (OS) and improves health-related quality of life (HRQoL). The double-blind, placebo-controlled MISTRAL trial was conducted in Swedish oncology centers. The main inclusion criteria were advanced exocrine pancreatic cancer and Eastern Cooperative Oncology Group (ECOG) performance status 0-2. The subjects were randomly assigned to ME (n=143) or placebo (n=147) and were stratified by study site and by eligibility (yes/no) for palliative chemotherapy (June 2016-December 2021). ME or placebo was injected subcutaneously three times a week for nine months. The primary endpoint was overall survival (OS); one of the secondary endpoints was the HRQoL dimension global health/QoL (EORTC-QLQ-C30), as assessed at seven time points over nine months. Trial registration: EudraCT 2014-004552-64, NCT02948309. No statistically significant benefit of adding ME to standard treatment was seen with respect to either OS or global health/ QoL. The adjusted hazard ratio for OS was 1.13 [0.89; 1.44], with a median survival time of 7.8 and 8.3 months for ME and placebo, respectively. The figures for the HRQoL dimension "global health/QoL" were similar in the two groups (p=0.86). The number, severity, and outcome of the reported adverse events were similar as well, except for more common local skin reactions at ME injection sites (66% vs. 1%). ME is unlikely to have a clinically significant effect on OS or the HRQoL dimension global health/QoL when administered in patients with advanced pancreatic cancer in addition to comprehensive cancer care.

Paediatric oncologists' perspectives on Strategic solutions to develop Integrated Cancer Palliative Care: feedback intervention theory as an explanatory Framework.

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. 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. 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. Applying feedback intervention theory can bridge the gap between actual and desired practice for integrated cancer palliative care in paediatric oncology.

Towards proactive palliative care in oncology: developing an explainable EHR-based machine learning model for mortality risk prediction

BackgroundEx-ante identification of the last year in life facilitates a proactive palliative approach. Machine learning models trained on electronic health records (EHR) demonstrate promising performance in cancer prognostication. However, gaps in literature include incomplete reporting of model performance, inadequate alignment of model formulation with implementation use-case, and insufficient explainability hindering trust and adoption in clinical settings. Hence, we aim to develop an explainable machine learning EHR-based model that prompts palliative care processes by predicting for 365-day mortality risk among patients with advanced cancer within an outpatient setting.MethodsOur cohort consisted of 5,926 adults diagnosed with Stage 3 or 4 solid organ cancer between July 1, 2017, and June 30, 2020 and receiving ambulatory cancer care within a tertiary center. The classification problem was modelled using Extreme Gradient Boosting (XGBoost) and aligned to our envisioned use-case: “Given a prediction point that corresponds to an outpatient cancer encounter, predict for mortality within 365-days from prediction point, using EHR data up to 365-days prior.” The model was trained with 75% of the dataset (n = 39,416 outpatient encounters) and validated on a 25% hold-out dataset (n = 13,122 outpatient encounters). To explain model outputs, we used Shapley Additive Explanations (SHAP) values. Clinical characteristics, laboratory tests and treatment data were used to train the model. Performance was evaluated using area under the receiver operating characteristic curve (AUROC) and area under the precision-recall curve (AUPRC), while model calibration was assessed using the Brier score.ResultsIn total, 17,149 of the 52,538 prediction points (32.6%) had a mortality event within the 365-day prediction window. The model demonstrated an AUROC of 0.861 (95% CI 0.856–0.867) and AUPRC of 0.771. The Brier score was 0.147, indicating slight overestimations of mortality risk. Explanatory diagrams utilizing SHAP values allowed visualization of feature impacts on predictions at both the global and individual levels.ConclusionOur machine learning model demonstrated good discrimination and precision-recall in predicting 365-day mortality risk among individuals with advanced cancer. It has the potential to provide personalized mortality predictions and facilitate earlier integration of palliative care.

Palliative Care for Patients With Cancer: ASCO Guideline Update.

To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer. ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations. The literature search identified 52 relevant studies to inform the evidence base for this guideline. Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.

Safety and Efficacy of Surgical Implantation of Intrathecal Drug Delivery Pumps in Patients With Cancer With Refractory Pain.

Pain management in patients with cancer is a critical issue in oncology palliative care as clinicians aim to enhance quality of life and mitigate suffering. Most patients with cancer experience cancer-related pain, and 30%-40% of patients experience intractable pain despite maximal medical therapy. Intrathecal pain pumps (ITPs) have emerged as an option for achieving pain control in patients with cancer. Owing to the potential benefits of ITPs, we sought to study the long-term outcomes of this form of pain management at a cancer center. We retrospectively reviewed medical records of all adult patients with cancer who underwent ITP placement at a tertiary comprehensive cancer center between 2013 and 2021. Baseline characteristics, preoperative and postoperative pain control, and postoperative complication rate data were collected. A total of 193 patients were included. We found that the average Numerical Rating Scale (NRS) score decreased significantly by 4.08 points (SD = 2.13, P < .01), from an average NRS of 7.38 (SD = 1.64) to an average NRS of 3.27 (SD = 1.66). Of 185 patients with preoperative and follow-up NRS pain scores, all but 9 experienced a decrease in NRS (95.1%). The median overall survival from time of pump placement was 3.62 months (95% CI: 2.73-4.54). A total of 42 adverse events in 33 patients were reported during the study period. The 1-year cumulative incidence of any complication was 15.6% (95% CI: 10.9%-21.1%) and for severe complication was 5.7% (95% CI: 3.0%-9.7%). Eleven patients required reoperation during the study period, with a 1-year cumulative incidence of 4.2% (95% CI: 2.0%-7.7%). Our study demonstrates that ITP implantation for the treatment of cancer-related pain is a safe and effective method of pain palliation with a low complication rate. Future prospective studies are required to determine the optimal timing of ITP implantation.

Psychotropic Medication Prescriptions for Home-Based Palliative Care Oncology Patients.

Psychotropic Medication Prescriptions for Home-Based Palliative Care Oncology Patients.

Reducing Bias in Opioid Risk Mitigation: Piloting a Pharmacy-Led Mitigation Strategy in Oncology Palliative Care

Reducing Bias in Opioid Risk Mitigation: Piloting a Pharmacy-Led Mitigation Strategy in Oncology Palliative Care