Médecin de famille formée aux soins palliatifs, l'auteure expose trois conditions dont le respect peut garantir de connaître une mort sereine tout en assurant une préparation à cette ultime étape de l'existence à travers une vie épanouie. Ces conditions, liées à la joie profonde, à l'ouverture aux autres et à la paix intérieure, sont accompagnées de nombreux exercices afin d'apprendre à les vivre.
BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care.
METHODS: Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services.
RESULTS: Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors.
CONCLUSIONS: Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
BACKGROUND: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved.
AIM: To explore healthcare professionals' experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members.
DESIGN: Qualitative design, including focus group discussions.
SETTING/PARTICIPANTS: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital's palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals (n = 53) from different care settings.
RESULTS: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement.A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals.
CONCLUSION: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.
BACKGROUND: Patients with end-stage liver disease (ESLD) have limited treatment options and have a deteriorated quality of life with an uncertain prognosis. Early identification of ESLD patients with a poor prognosis is valuable, especially for palliative care. However, it is difficult to predict ESLD patients that require either acute care or palliative care.
OBJECTIVE: We sought to create a machine-learning monitoring system that can predict mortality or classify ESLD patients. Several machine-learning models with visualized graphs, decision trees, ensemble learning, and clustering were assessed.
METHODS: A retrospective cohort study was conducted using electronic medical records of patients from Wan Fang Hospital and Taipei Medical University Hospital. A total of 1214 patients from Wan Fang Hospital were used to establish a dataset for training and 689 patients from Taipei Medical University Hospital were used as a validation set.
RESULTS: The overall mortality rate of patients in the training set and validation set was 28.3% (257/907) and 22.6% (145/643), respectively. In traditional clinical scoring models, prothrombin time-international normalized ratio, which was significant in the Cox regression (P<.001, hazard ratio 1.288), had a prominent influence on predicting mortality, and the area under the receiver operating characteristic (ROC) curve reached approximately 0.75. In supervised machine-learning models, the concordance statistic of ROC curves reached 0.852 for the random forest model and reached 0.833 for the adaptive boosting model. Blood urea nitrogen, bilirubin, and sodium were regarded as critical factors for predicting mortality. Creatinine, hemoglobin, and albumin were also significant mortality predictors. In unsupervised learning models, hierarchical clustering analysis could accurately group acute death patients and palliative care patients into different clusters from patients in the survival group.
CONCLUSIONS: Medical artificial intelligence has become a cutting-edge tool in clinical medicine, as it has been found to have predictive ability in several diseases. The machine-learning monitoring system developed in this study involves multifaceted analyses, which include various aspects for evaluation and diagnosis. This strength makes the clinical results more objective and reliable. Moreover, the visualized interface in this system offers more intelligible outcomes. Therefore, this machine-learning monitoring system provides a comprehensive approach for assessing patient condition, and may help to classify acute death patients and palliative care patients. Upon further validation and improvement, the system may be used to help physicians in the management of ESLD patients.
PURPOSE OF REVIEW: Palliative care is increasingly acknowledged as beneficial in supporting patients and families affected by heart failure, but policy documents have generally focused on the chronic form of this disease. We examined palliative care provision for those with acute heart failure, based on the recently updated National Consensus Project Clinical Practice Guidelines for Quality Palliative Care.
RECENT FINDINGS: The commonest reason for hospitalization in those > 65 years, acute heart failure admissions delineate crisis points on the unpredictable disease trajectory. Palliative care is underutilized, often perceived as limited to end-of-life care rather than determined by regular systematic needs assessment. No dominant paradigm of palliative care provision has emerged from the nascent evidence base related to this clinical cohort, underscoring the need for further research. Embedding palliative support as mainstream to heart failure care from the point of diagnosis may better ensure treatment strategies for those admitted with acute heart failure remain consistent with patients' preferences and values.
Palliative care research raises a host of ethical concerns. Obtaining informed consent from seriously ill patients and their families is often perceived as an additional burden. Alternative approaches to traditional written informed consent reflects the changing nature of modern trial design, embracing real-world effectiveness and pragmatic clinical trials with those who are seriously ill. Ethicists, clinical investigators, and regulatory bodies have acknowledged the challenges to rigorous, meaningful, and generalizable research across diverse patient populations in real-world settings. The purpose of this paper is to describe how these clinical trial designs have driven innovation in methods for achieving informed consent, with a focus on palliative care research. In this paper, we describe, and provide examples of consent waivers and three types of alternative approaches to consent, including broadcast notification, and integrated and targeted consent. We also present our experiences in an ongoing palliative care clinical trial, specifically using broadcast notification. Working with participants and regulatory oversight organizations, investigators can address the limits of traditional written informed consent and adopt innovative consent models to advance the science of palliative care. Research is now needed to determine the impact of these differing consent models on clinical trial recruitment, enrollment, and retention, as well as participants' informed understanding of their research participation using such models.
Context: The development of palliative care services is a public health priority. The Japanese Cancer Control Act has been promoting palliative care services nationwide for over 10 years.
Objectives: To evaluate long-term changes in the structure and processes of hospital palliative cancer care services nationwide.
Methods: This was an observational study using three representative questionnaire surveys between 2008 and 2018. The questionnaire consisted of domains on the structure and process regarding hospital palliative cancer care services. The changes over time were assessed using the MacNemar test. The differences between groups, namely community hospitals and designated cancer hospitals, were determined using 2 tests.
Results: We analyzed changes over time from 281 designated cancer hospitals and compared the services between 1395 community hospitals and 380 designated cancer hospitals. The development of the structure and processes for designated cancer hospital's palliative cancer care services was greater for 10 years including the number of Palliative Care Consultation Teams (PCTs) with more than 50 patient referrals annually (from 2010 to 2018: 76.2% to 85.4%, P < 0.001). The palliative cancer care services of community hospitals were poorly prepared compared with designated cancer hospitals in 2018, such as the “direct medical care by any member of the Palliative Care Consultation Team at least 3 times a week (41.7% vs. 81.3%; P < 0.001).
Conclusion: Hospital palliative cancer care services in designated cancer hospitals have developed significantly from 2008 to 2018. Building a system to promote palliative care services in community hospitals is a challenge for the next decade.
BACKGROUND: Medical Assistance in Dying comprises interventions that can be provided by medical practitioners to cause death of a person at their request if they meet predefined criteria. In June 2016, Medical Assistance in Dying became legal in Canada, sparking intense debate in the palliative care community.
AIM: This study aims to explore the experience of frontline palliative care providers about the impact of Medical Assistance in Dying on palliative care practice.
DESIGN: Qualitative descriptive design using semi-structured interviews and thematic analysis.
SETTINGS/PARTICIPANTS: We interviewed palliative care physicians and nurses who practiced in settings where patients could access Medical Assistance in Dying for at least 6 months before and after its legalization. Purposeful sampling was used to recruit participants with diverse personal views and experiences with assisted death. Conceptual saturation was achieved after interviewing 23 palliative care providers (13 physicians and 10 nurses) in Southern Ontario.
RESULTS: Themes identified included a new dying experience with assisted death; challenges with symptom control; challenges with communication; impact on palliative care providers personally and on their relationships with patients; and consumption of palliative care resources to support assisted death.
CONCLUSION: Medical Assistance in Dying has had a profound impact on palliative care providers and their practice. Communication training with access to resources for ethical decision-making and a review of legislation may help address new challenges. Further research is needed to understand palliative care provider distress around Medical Assistance in Dying, and additional resources are necessary to support palliative care delivery.
Background: According to the Latin America Association for palliative care, Brazil offers only 0.48 palliative care services per 1 million inhabitants. In 2012, no accredited physicians were working in palliative care, while only 1.1% of medical schools included palliative care education in their undergraduate curricula. As a reflection of the current scenario, little research about end-of-life care has been published so that studies addressing this subject in the Brazilian setting are crucial.
Methods: A cross-sectional study study conducted with students applying for the medical residency of the Federal University of São Paulo were invited to voluntarily participate in an anonymous and self-administered questionnaire survey. The latter included demographic information, attitudes, prior training in end-of-life care, prior end-of-life care experience, the 20-item Palliative Care Knowledge Test (PCKT) and a consent term.
Results: Of the 3086 subjects applying for residency, 2349 (76%) answered the survey, 2225 were eligible for analysis while 124 were excluded due to incomplete data. Although the majority (99,2%) thought it was important to have palliative care education in the medical curriculum, less than half of them (46,2%) reported having received no education on palliative care. The overall performance in the PCKT was poor, with a mean score of 10,79 (± 3). While philosophical questions were correctly answered (81,8% of correct answers), most participants lacked knowledge in symptom control (50,7% for pain, 57,3% for dyspnea, 52,2% for psychiatric problems and 43,4% for gastrointestinal problems). Doctors that had already concluded a prior residency program and the ones that had prior experience with terminal patients performed better in the PCKT (p < 0,001). The high-performance group (more than 50% of correct answers) had received more training in end-of-life care, showed more interest in learning more about the subject, had a better sense of preparedness, as well as a higher percentage of experience in caring for terminal patients (p < 0,001).
Conclusions: Our study showed that Brazilian physicians lack not only the knowledge, but also training in end-of-life medicine. Important factors to better knowledge in end-of-life care were prior training, previous contact with dying patients and prior medical residency. Corroborating the literature, for this group, training showed to be a key factor in overall in this area of knowledge. Therefore, Brazilian medical schools and residency programs should focus on improving palliative training, especially those involving contact with dying patients.
Depuis plusieurs décennies, de nombreux rapports insistent sur la nécessité de diffuser les soins palliatifs en formant les étudiants en médecine à cette pratique. Dans ce contexte, l’évaluation des dispositifs pédagogiques est un impératif. Une recherche qualitative est réalisée auprès de 18 internes en médecine ayant effectué un stage de 6 mois dans une équipe de soins palliatifs, fixe ou mobile. Cette étude exploratoire vise à recueillir le retour qu’ils font sur leurs vécus lors du stage, les compétences qu’ils ont acquises, leurs appréciations sur les modalités pédagogiques. Après analyse des entretiens, cinq thématiques sont identifiées. Les internes décrivent une déstabilisation initiale en début de stage. Ils relatent un renforcement de leurs compétences professionnelles avec l’apprentissage d’un meilleur rapport à leurs émotions. Ils font le constat que de nombreuses compétences sont transférables dans leur spécialité, mais que, bien souvent, la compétence délibérative ne peut être vécue qu’individuellement. Ils mentionnent une expérience de questionnement et de réflexivité sur leur parcours professionnel et personnel. Ils soulignent le rôle favorable de l’accompagnement pédagogique. Si l’apport d’un stage en équipe de soins palliatifs apparaît manifeste, il importe que les référents pédagogiques mènent une réflexion éthique afin de bien comprendre les fondements de la clinique palliative mais aussi les décalages, les tensions, voire les paradoxes vis-à-vis du référentiel médical actuel.
Background: The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services.
Methods: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests.
Results: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments.
Conclusions: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Cases of coronavirus disease 2019 (COVID-19) are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multi-morbidity. The immunosuppressed status of some cancer patients increases their risk of infection compared with the general population, and cancer treatment within 2 weeks of COVID-19 diagnosis was reported as a risk factor for developing severe events. Palliative care workers have an essential role in the response to COVID-19 by responding rapidly and flexibly; ensuring protocols for symptom management are available, considering redeploying staffs and volunteers to provide psychosocial and bereavement care and using technology to communicate with patients and carers.
Introduction : L’anémie est un problème fréquemment rencontré chez les patients relevant des soins palliatifs. Elle peut être responsable de nombreux symptômes inconfortables comme l’asthénie, la dyspnée ou des douleurs. L’objectif de cette étude était d’analyser la prise en charge de l’anémie par les praticiens d’équipe mobile de soins palliatifs et d’unité de soins palliatifs.
Méthode : Une étude observationnelle, déclarative et descriptive, a été menée de septembre à décembre 2017, sur la base d’un questionnaire électronique, adressé aux médecins d’équipe mobile de soins palliatifs et d’unité de soins palliatifs en France métropolitaine. Le recueil concernait l’indication, le choix du traitement, la méthode de surveillance et le recours à des référentiels.
Résultats : Nous avons recueilli les réponses de 140 médecins. Parmi ces praticiens, 87 % traitaient l’anémie des patients relevant de soins palliatifs uniquement en cas de symptômes et 95 % n’avaient recours à aucun référentiel. Les symptômes amenant le plus à traiter l’anémie étaient la dyspnée et l’asthénie. Le traitement utilisé en première intention par 95 % des répondeurs était la transfusion de concentré de globules rouges, essentiellement pour le besoin d’une efficacité plus rapide.
Conclusion : Les praticiens ayant répondu à notre questionnaire ont déclaré en majorité ne pas avoir recours à des référentiels concernant la prise en charge de l’anémie, mais leurs pratiques se rapprochaient des rares recommandations et données disponibles sur le sujet. De nouvelles études sont nécessaires sur ce sujet et plus précisément sur l’utilisation des agents stimulants l’érythropoïèse et sur la correction des carences vitaminiques et martiales.
Background: Rehabilitation and palliative care may play an important role in addressing the problems and needs perceived by socioeconomically disadvantaged patients with advanced cancer. However, no study has synthesized existing research on rehabilitation and palliative care for socioeconomically disadvantaged patients with advanced cancer. The study aimed to map existing research of rehabilitation and palliative care for patients with advanced cancer who are socioeconomically disadvantaged.
Material and Methods: A scoping review was conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). A systematic literature search was performed in CINAHL, PubMed and EMBASE. Two reviewers independently assessed abstracts and full-text articles for eligibility and performed data extraction. Both qualitative and quantitative studies published between 2010 and 2019 were included if they addressed rehabilitation or palliative care for socioeconomically disadvantaged (adults =18 years) patients with advanced cancer. Socioeconomic disadvantage is defined by socioeconomic position (income, educational level and occupational status).
Results: In total, 11 studies were included in this scoping review (138,152 patients and 45 healthcare providers) of which 10 were quantitative studies and 1 was a qualitative study. All included studies investigated the use of and preferences for palliative care, and none focused on rehabilitation. Two studies explored health professionals’ perspectives on the delivery of palliative care.
Conclusion: Existing research within this research field is sparse. Future research should focus more on how best to reach and support socioeconomically disadvantaged people with advanced cancer in community-based rehabilitation and palliative care.
INTRODUCTION: We hypothesized that trauma providers are reticent to consider palliative measures in acute trauma care.
METHODS: An electronic survey based on four patient scenarios with identical vital signs and serious blunt injuries, but differing ages and frailty scores was sent to WTA and EAST members.
RESULTS: 509 (24%) providers completed the survey. Providers supported early transition to comfort care in 85% old-frail, 53% old-fit, 77% young-frail, and 30% young-fit patients. Providers were more likely to transition frail vs. fit patients with (OR = 4.8 [3.8-6.3], p < 0.001) or without (OR = 16.7 [12.5-25.0], p < 0.001) an advanced directive (AD) and more likely to transition old vs. young patients with (OR = 2.0 [1.6-2.6], p < 0.001) or without (OR = 4.2 [2.8-5.0], p < 0.001) an AD.
CONCLUSIONS: In specific clinical situations, there was wide acceptance among trauma providers for the early institution of palliative measures. Provider decision-making was primarily based on patient frailty and age. ADs were helpful for fit or young patients. Provider demographics did not impact decision-making.
BACKGROUND: Palliative care is typically performed in-hospital. However, Emergency Medical Service (EMS) providers are uniquely positioned to deliver early palliative care as they are often the first point of medical contact. The aim of this study was to gather the perspectives of advanced life support (ALS) providers within the South African private EMS sector regarding pre-hospital palliative care in terms of its importance, feasibility and barriers to its practice.
METHODS: A qualitative study design employing semi-structured one-on-one interviews was used. Six interviews with experienced, higher education qualified, South African ALS providers were conducted. Content analysis, with an inductive-dominant approach, was performed to identify categories within verbatim transcripts of the interview audio-recordings.
RESULTS: Four categories arose from analysis of six interviews: 1) need for pre-hospital palliative care, 2) function of pre-hospital healthcare providers concerning palliative care, 3) challenges to pre-hospital palliative care and 4) ideas for implementing pre-hospital palliative care. According to the interviewees of this study, pre-hospital palliative care in South Africa is needed and EMS providers can play a valuable role, however, many challenges such as a lack of education and EMS system and mindset barriers exist.
CONCLUSION: Challenges to pre-hospital palliative care may be overcome by development of guidelines, training, and a multi-disciplinary approach to pre-hospital palliative care.
PURPOSE: ASCO recommends early integration of palliative care in treating patients diagnosed with metastatic lung cancer. Our study sought to examine utilization of timely specialty palliative care (SPC) and its association with survival and cost outcomes in patients diagnosed with metastatic non-small-cell lung cancer (NSCLC).
METHODS: The 2001-2015 SEER-Medicare data were used to determine the baseline characteristics and outcomes of 79,253 patients with metastatic NSCLC. The predictors of early SPC use were examined using logistic regression. Mean and adjusted total and SPC-related costs were calculated using generalized linear regression. We used Cox regression model to determine the survival outcomes by SPC service settings. All statistical tests were two sided.
RESULTS: The time from cancer diagnosis to the first SPC use has reduced significantly, from 13.7 weeks in 2001 to 8.3 weeks in 2015 (P < .001). SPC use was associated with lower health care costs compared with those who had no SPC, from -$3,180 in 2011 (P < .001) to -$1,285 in 2015 (P = .059). Outpatient SPC use was associated with improved survival compared with patients who received SPC in other settings (hazard ratio, 0.83; 95% CI, 0.79 to 0.88; P < .001).
CONCLUSION: Patients diagnosed with metastatic NSCLC now have more timely SPC service utilization, which was demonstrated to be a cost-saving treatment. Strategies to improve outpatient palliative care use might be associated with longer survival in patients with metastatic NSCLC.
Background: In the United States, the percentage of hospitals over 50 beds with palliative care programs has risen substantially from 7% of hospitals in 2001 to 72% in 2017. Yet the dynamic nature of program adoption and closure over time is not known.
Objective: To examine the rate of palliative care program adoption and closure and associated hospital and geographic characteristics in a national sample of U.S. hospitals.
Design: Adoption and closure rates were calculated for 3696 U.S. hospitals between 2009 and 2017. We used multivariable logistic regression models to examine the association between adoption and closure status and hospital, geographic, and community characteristics.
Setting/Subjects: All nonfederal general medical and surgical, cancer, heart, and obstetric or gynecological hospitals, of all sizes, in the United States in operation in both 2009 and 2017.
Results: By 2017, 34.9% (812/2327) of the hospitals without palliative care in 2009 had adopted palliative care programs, and 15.0% (205/1369) of the hospitals with programs had closed them. In multivariable models, hospitals in metropolitan areas, nonprofit and public hospitals (compared to for-profit hospitals), and those with residency training approval by the Accreditation Council for Graduate Medical Education were significantly more likely to adopt and significantly less likely to close palliative care programs during the study period.
Conclusions: This study indicates that palliative care is not equitably adopted nor sustained by hospitals in the United States. Federal and state interventions may be required to ensure that high-quality care is available to our nation's sickest patients.
Introduction: This study assessed the feasibility of integrating telehealth-assisted home-based specialist palliative care (TH-SPC) into a rural community setting.
Methods: This was a prospective mixed-methods pilot study conducted in rural Victoria, Australia. Newly engaged adult patients and their caregivers of a community palliative-care service received video consultations with metropolitan-located specialist palliative-care physicians, alongside standard care. Those eligible patients who failed to receive TH-SPC were treated as a control group upon analysis. Data were collected over three months and at 30 days prior to death. Feasibility outcomes included efficiency of process, user satisfaction, clinical outcome and health-care metrics.
Results: A total of 21 patients completed the study, with an average age of 70.4 years and an average survival of 5.8 months. Fourteen patients received TH-SPC, and seven received standard care alone. Patient–caregiver feedback for TH-SPC showed a high level of overall satisfaction. Compared to standard care, the TH-SPC group demonstrated less functional decline from baseline at two weeks (Australia-modified Karnofsky Performance Status: –1.35 vs. –12.30, p = 0.067) and three months (8.48 vs. –10.79, p = 0.04) after the intervention. At 30 days prior to death, functional status remained better in the TH-SPC group, with fewer per capita community palliative-care nursing visits (5.46 vs. 9.32, effect size = 0.7), general practitioner visits (0.13 vs. 3.88, effect size = 1.34) and hospital admissions (0.02 vs. 0.2, effect size = 0.65).
Discussion: TH-SPC was successfully integrated into rural community-based palliative care, with potential benefits in performance status preservation and health-care resource utilisation.
Objective: Develop and pilot-test a nurse-led primary palliative care intervention for patients with advanced hematologic malignancies.
Background: Nurse-led primary palliative care interventions may improve outpatient palliative care provision for patients with advanced hematologic malignancies.
Methods: This two-phase, single-arm pilot study involved patients with recurrent or resistant hematologic malignancies, their caregivers, and oncology clinicians at two US-based urban, university-affiliated oncology clinics. Measurements included feasibility (enrollment rates, intervention fidelity, and outcome assessment rates) and acceptability (patient, caregiver, and clinician surveys).
Results: In Phase 1 we developed and implemented an oncology nurse-led primary palliative care intervention for patients with recurrent or resistant hematologic malignancies and their caregivers. In Phase 2, we tested feasibility and acceptability. Twenty-six patient participants enrolled. Consent-to-approach rate was 78% and enrolled-to-consent rate was 84%. All enrolled participants received the intervention per protocol. Sixty-nine percent of patients and 100% of caregivers reported that the intervention helped them better understand the patient's illness and cope. Seventy-five percent of oncologists reported that the intervention improved their patients' quality of care, and 25% reported that it helped them take better care of patients.
Conclusions: Although our pilot of oncology nurse-led primary palliative care for patients with advanced hematologic malignancies met some of its secondary feasibility endpoints, it did not meet its primary feasibility endpoint (enrollment) and acceptability was mixed. Protecting nursing staff time, increasing patient and clinician involvement in intervention development, and identifying patients with highest supportive needs may improve feasibility and acceptability of future primary palliative care in hematologic malignancy trials.