Palliative Care Experts Research Articles

End of life care in paediatric settings: UK national survey

ObjectivesTo describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are...

A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and shared decision-making

BackgroundIn paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands.MethodsA multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences.ResultsWe identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment.ConclusionThe identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries.

Consensus palliative care referral criteria for people with chronic obstructive pulmonary disease

ObjectivePeople with advanced chronic obstructive pulmonary disease (COPD) have substantial palliative care needs, but uncertainty exists around appropriate identification of patients for palliative care referral.We conducted a Delphi study of...

Generating Consensus on Good Practices in the Care of Portuguese Internal Medicine Patients Facing Imminent Death: A Delphi Study

Context: Modern medicine aims to ensure a world in which all people experience a good end of life as an integral part of their life journey. A good end-of-life experience means dying with dignity and receiving the best healthcare based on scientific evidence. Objective: This study aims to reach a consensus about the contents of a comprehensive instrument based on the 10/40 Model of the International Collaborative for the Best Care for the Dying Person for evaluating inpatients facing imminent death in Portuguese internal medicine wards and a proposal for anticipatory medication for symptom control in inpatient and home care settings. Methods: We employed the Delphi method and conducted various rounds of questionnaire administration to 23 Portuguese internists competent in palliative medicine. Data were obtained in July and September of 2022. Results: Consensus was reached among the expert panel on the diagnostic, initial assessment, monitoring, and after-death care items of the tool, with minor adjustments to wording or content. However, it was not possible to reach a consensus on most of the proposals presented for anticipatory medication for symptomatic control. Conclusion: We present the consensus about the contents of a comprehensive instrument for evaluating inpatients facing imminent death in Portuguese internal medicine wards. Best practices in this setting were defined from the point of view of internists with expertise in palliative care. However, the best pharmacological practices still require further reviews of the literature and consensus.

Palliative care-based arguments against assisted dying.

Opponents of legalised assisted dying often assert that palliative care is worse in countries where assisted dying has been legalised, and imply that legalised assisted dying makes palliative care worse. This study considers five versions of this claim: that it is difficulty to access expert palliative care in countries where assisted dying has been legalised, that those countries rank low in their quality of end-of-life care; that legalising assisted dying doesn't expand patient choice in respect of palliative care; that growth in palliative care services has stalled in countries where assisted dying has been legalised; and that legalised assisted dying impedes the growth of palliative care or causes it to decline. In each case, it concludes that neither argumentation nor evidence supports these claims.

Advancing quality of care using a knowledge transfer approach to foster the use of single-fraction radiation therapy.

288 Background: There are significant barriers between the publication of scientific evidence and its adoption in clinical practice. Research in bone metastasis has demonstrated the effectiveness of single-fraction radiation therapy for uncomplicated cases. A persistent reluctance to adopt this approach in favor of multi-treatment courses remain. The aim of this project was to advocate for a better treatment method by employing a knowledge transfer approach to disseminate information, gather clinician feedback, and change practices. Methods: Initially, experts were invited to share best practices and raise awareness about the issue. Quality measures were developed with help from a consortium-wide working group and were introduced in 2020. The performance metric was steadily increased from 20% to a consortium-wide rate of ≥45% in 2023. The knowledge transfer project involved using video presentations to educate clinicians on the benefits of single-fraction treatment, a post-session survey to assess the impact of the information provided, and a 30-minute virtual discussion that followed days after the presentation. The 30-minute recorded video presentation by a radiation oncologist with expertise in palliative care presented evidence in support of the treatment and dispelled myths surrounding single-fraction treatment. This was first piloted at four sites before being rolled out consortium wide. Results: The project was effective. Physicians at 22 radiation oncology centers reported an increased awareness of single-fraction treatment and a willingness to try it. The table shows: 100% reported the topic was relevant, 94% were prompted to reflect on their current practice, 63% reported their thoughts about fractionation changed and 84% acknowledged an increase in their knowledge of the evidence supporting single-fraction treatment. Annual rates of single-fraction use increased over time. The consortium wide target promoting the use of single fraction for uncomplicated patients was met in 2023– single fraction was used 46% of the time for the treatment of uncomplicated bone metastases patients as compared to about 37% in 2021. Conclusions: Patient care can be enhanced by supporting providers who make health care decisions daily. Quality care can be encouraged by conveying evidence-based knowledge to providers, who are responsible for making healthcare treatment decisions. This project illustrates that sustained efforts in knowledge transfer can effectively change clinical practice patterns to align with evidence-based recommendations. Knowledge transfer project. Physician participation vs. those invited to participate 22/24 (91.67%) Survey Responses: a. Relevant to Practice 100% b. Usefulness to practice and reflection on current practice 94% c. Thoughts changed about fractionation treatment 63% d. Knowledge of evidence supporting treatment increased 84%

Improving goal-concordant care via a uniquely collaborative and multi-site PFAC model.

265 Background: Studies reveal a mismatch between the goals of care (GOC) of cancer patients and actual care received. The 10 members of the Alliance of Dedicated Cancer Centers (ADCC) convened the Improving Goal Concordant Care (IGCC) initiative to address system gaps. IGCC was led by palliative care and oncology experts, with guidance from patient and family advisors. Uniquely, the advisors were identified from patient family advisory councils (PFAC) at each center, forming a collaborative Advisory Group (AG) with the lived experience of each center and the knowledge of advocating for the patient/family voice locally. Methods: PFAC members were recruited from each site to serve on the AG. The 19 member AG met quarterly, with minutes shared with the IGCC oversight group, the Implementation Workgroup (IWG). In September 2023, all AG members were surveyed about perceptions of PFAC engagement and local impact of IGCC. In May 2024, 20 IWG members were surveyed about implementation successes and barriers, including items related to PFAC engagement. Results: AG evaluation and recommendations altered IGCC planned core implementation and evaluation actions meaningfully; for example in 1) selection of structured fields in electronic health record (EHR) and universally accessible GOC documentation and in 2) centering patients in the GOC measure set, including incorporating “Heard & Understood” survey into IGCC evaluation. Other AG guidance around direct patient engagement readiness for GOC conversations and implementing patient GOC surveys was left to individual sites to consider with variable adoption. AG Survey: 63% response rate. 80% noted that the GOC program was discussed with their local PFAC and 92% experienced changed routine patient care after GOC implementation. IWG Survey: 100% response rate. 68% agreed that their center sought guidance from their PFAC during GOC implementation and that leadership presented to their PFAC about their GOC implementation. 26% indicated reporting data to their PFAC; of those that did, 80% agreed that this positively impacted their GOC implementation. Conclusions: While PFACs are occasionally included in quality interventions, this model centered the patient/family voice by supporting a PFAC stakeholder feedback loop working collaboratively and locally to support implementation and evaluation of IGCC objectives. While not all AG recommendations were formally integrated into IGCC, all were considered and many adopted at individual centers. Despite ongoing IGCC-level involvement, center-specific engagement of PFACs varied. Future efforts can track this during process evaluation as local PFAC engagement was highly valued. Consensus building for national best practice implementation and evaluation by recruiting local experts including PFAC members into national collaborative efforts is a successful model for local change.

Asynchronous education improves emergency medical services clinician confidence and knowledge in caring for patients near the end-of-life.

To evaluate the impact of a nationally available continuing education online curriculum on Emergency Medical Services (EMS) clinician confidence and knowledge in caring for end-of-life (EOL) patients. This is a prospective observational study of EMS clinicians (emergency medical technicians [EMTs], advanced EMTs [AEMTs], and paramedics). EMS clinicians and physicians with both EMS and palliative care expertise developed two 20-min modules regarding: (1) communication skills (including death notification) and (2) hospice knowledge. EMS clinicians' subject confidence (modified Likert-scale) and knowledge were assessed electronically immediately before and after each module. Data analysis compared before and after module improvements in knowledge and confidence. Linear regressions analyzed baseline EOL skill confidence scores based on EMS agency, level of certification, and years of experience. We analyzed completed datasets for 1825 EMS clinicians (979 EMTs, 112 AEMTs, and 734 paramedics) representing a heterogeneous cohort across different EMS agencies (617 private, 545 fire-based, 298 hospital-based, 61 third service, and 304 other) and all 50 states and the District of Columbia. After the communication module, the number of EMS clinicians who reported confidence in delivering bad news increased from 62% (1131/1825) to 80% (1468/1825) (p<0.001). After the hospice module, the number of EMS clinicians who reported confidence in knowing what services hospice provides increased from 51% (925/1825) to 75% (1375/1825) (p<0.001) and confidence in knowing what active dying patients look like from 57% (1033/1825) to 78% (1429/1835) (p<0.001) in knowing what active dying patients look like. Linear regression demonstrated that before modules, EMS clinicians with more monthly EOL calls, those with more years of experience, and paramedics were more confident in their EOL skills than their peers. After module completion, those with the fewest years of experience (0-3 years) and EMTs gained significantly more confidence in communication skills than their peers. Asynchronous, online continuing education improves EMS clinician knowledge and confidence in caring for patients near the EOL. The greatest benefit in improved confidence was for EMTs and those with the fewest years of EMS experience.

Destigmatizing Palliative Care among Young Adults-A Theoretical Intervention Mapping Approach.

Background: In medicine, stigmatization pertains to both afflicted individuals and diseases themselves but can also encompass entire medical fields. In regard to demographic change and the rising prevalence of oncological diseases, palliative care will become increasingly important. However, palliative care faces multiple stigmas. These include equating of palliative care with death and dying. A timely integration of palliative care would have the potential to alleviate symptom burden, diminish the risk of overtreatment, and thus save healthcare-related costs. Several interventions have been developed to destigmatize palliative care. However, they have mainly focused on the general public. Aim: The aim of this work is to develop a theoretical framework for an interventional campaign targeted at young adults to systematically destigmatize palliative care. Methods: The basis for the development of the campaign is a systematic review conducted by our working group that assessed the perception and knowledge of palliative care of young adults aged 18 to 24 years. To design a possible intervention, the Intervention Mapping approach was used. Results: The target group of young adults can be effectively reached in secondary schools, vocational schools, and universities. The target population should be able to discuss the content of palliative care and openly talk about death and dying. At the environmental level, palliative care should be more present in public spaces, and death and dying should be freed from taboos. Within an intervention with palliative care experts and patients serving as interventionists, these changes can be achieved by incorporating evidence-based methods of behavioral change. Conclusions: An early engagement with palliative care could contribute to the long-term reduction of stigmas and address the demographic shift effectively. A multimodal intervention approach comprising knowledge dissemination, exchange, and media presence provides an appropriate framework to counter the existing stigmatization of palliative care within the peer group of young adults.

Integrating Health Equity in the ASCO Guideline Agenda: Recommendations From Members of the Palliative Care Expert Panel.

Integrating Health Equity in the ASCO Guideline Agenda: Recommendations From Members of the Palliative Care Expert Panel.

Avoidable emergency admissions: defining the concept.

The transfer of end-of-life patients to hospital via admission to an emergency service mainly happens because of a lack of community support nearby and a lack of resources in palliative care. This study aimed to define the concept of avoidable admission to an emergency department for palliative patients. An integrative literature review was performed. The results of this were put to a panel of palliative care experts via a Delphi process to determine their consensus and agreement with the statements. The results of the two-step Delphi process reached a high level of consensus and agreement that patients with palliative needs accompanied by home palliative care teams should not go to the emergency department. There was a low level of consensus and agreement about the appropriate admission of a patient in pain in the absence of any information about previous community support. The findings allowed the definition of an 'avoidable emergency admission', which is an emergency admission for any symptom or condition that could be supported in a home context or primary health care, or any emergency admission that does not require immediate nursing or medical intervention, nor leads to greater comfort or quality of life for the patient.

Understanding and addressing symptoms for those with kidney failure managed conservatively, without dialysis: considerations and models of care.

For those who have kidney failure and are managed conservatively without dialysis, symptoms are often prevalent, multiple, and troublesome. They interfere with quality of life, reduce wellbeing, and can affect family carers too. Symptoms can sometimes be difficult to manage, and-for professionals-they are often hard to assess and not always amenable to management with medications appropriate for use in kidney failure. Fatigue is one of the most common symptoms; alongside a general overview of symptoms in this population, we include a more detailed discussion of this often-neglected symptom. The solutions to the main symptoms experienced by those with kidney failure managed conservatively without dialysis lie in detailed assessment and monitoring of symptoms, working as a multi-disciplinary team to the maximum to draw on the full range of skills and expertise, and use of non-pharmacological, as well as pharmacological, approaches. Both nephrology and palliative care skills and expertise are important to optimise the recognition, assessment, and management of symptoms. There are few published descriptions of models of conservative kidney management (CKM) or supportive kidney care and there is a lack of evidence to suggest which model is most effective. We therefore consider the evidence on optimal models of CKM and make suggestions for best practice.

Report on palliative sedation medication usage: a survey of palliative care experts in Eight European countries

BackgroundThe practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania).MethodsA specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data.ResultsOf the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used “almost always”, while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were “almost always” used during palliative sedation. The perceived use of IV hydration and artificial nutrition “almost always” was generally low, while the country where both IV hydration and artificial nutrition were considered to be “very often” given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively.ConclusionsOur study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.

NURS-22. NAVIGATING DISPARITIES: COMPREHENSIVE CARE AND ACCESS TO CLINICAL TRIALS FOR ADOLESCENTS AND YOUNG ADULTS WITH CENTRAL NERVOUS SYSTEM TUMORS

Abstract BACKGROUND Central nervous system (CNS) tumors are one of the most common causes of cancer-related death in the adolescent and young adult (AYA) age group. Despite being a prevalent cancer diagnosis, adolescents and young adults continue to be underrepresented in clinical trials. Literature review shows a notable lack of research focused on clinical care, reproductive health, and psychosocial aspects specific to this population. The longstanding issue of low AYA participation in clinical trials persists across various cancer types, with a particular scarcity of data regarding CNS tumors. Notably, the lack of participation in clinical trials has been associated with worse survival outcomes and increase in frequency and severity of treatment-related toxicity, emphasizing the critical impact of this issue on patients’ overall morbidity and mortality. The literature underscores the under-representation of AYAs with CNS tumors in neuro-oncology trials.. METHODS This talk will review challenges faced by adolescents and young adults (AYAs) diagnosed with central nervous system (CNS) tumors.We will discuss the necessity for molecular profiling in the diagnostic workup of CNS patients to delineate tumor biology and guide treatment plans, including clinical trial access. To address the insufficient understanding of best practices for this group, there is a crucial call for expanding access to clinical trials. We will explore barriers to clinical trial access and provide case examples of successful and unsuccessful work with AYA patients with CNS tumors with ideas to improve access. Finally, we will discuss the holistic care of AYAs with CNS tumors through a multidisciplinary approach, incorporating expertise in neuro-oncology, oncofertility, palliative care, and psychosocial aspects within both pediatric and adult care settings RESULTS N/A CONCLUSIONS By the end of this presentation, pediatric RNs and APPs will have an understanding of the differences in caring for this unique population of patients including benefits of enrolling adolescents and young adults with CNS tumors in clinical trials.

How to talk about dying? The development of an evidence-based model for communication with patients in their last days of life and their family caregivers

ObjectiveTo help healthcare professionals (HCP) act with more confidence when communicating about approaching death, we sought to develop a communication model for HCP to facilitate conversations with dying patients and family caregivers (FC) in nonemergency situations. MethodsWe used a four-phase integrative approach: (1) creation of a preliminary model based on a systematic literature review and expert knowledge, (2) review of the model draft by international palliative care experts, (3) review by key stakeholders, and (4) final appraisal by communication experts. ResultsAfter the clinical recognition of dying, the communication model provides a structure and practical communication aids for navigating the conversation based on three phases. It describes the content and relational level as core dimensions of effective conversations about approaching death and highlights the importance of HCP self-awareness and self-care when caring for the dying. ConclusionBased on systematic involvement of key stakeholders, the model supports clinicians navigating challenging conversations about approaching death with dying patients and their FC successfully and with more confidence. InnovationThis study expands the theoretical basis for communication about approaching death and offers a pragmatic model for educational interventions and clinical use.

Adapting the serious illness conversation guide for unhoused older adults: a rapid qualitative study

BackgroundOlder adults experiencing homelessness (OAEH) age quickly and die earlier than their housed counterparts. Illness-related decisions are best guided by patients’ values, but healthcare and homelessness service providers need support in facilitating these discussions. The Serious Illness Conversation Guide (SICG) is a communication tool to guide discussions but has not yet been adapted for OAEH.MethodsWe aimed to adapt the SICG for use with OAEH by nurses, social workers, and other homelessness service providers. We conducted semi-structured interviews with homelessness service providers and cognitive interviews with OAEH using the SICG. Service providers included nurses, social workers, or others working in homeless settings. OAEH were at least 50 years old and diagnosed with a serious illness. Interviews were conducted and audio recorded in shelters, transitional housing, a hospital, public spaces, and over Zoom. The research team reviewed transcripts, identifying common themes across transcripts and applying analytic notetaking. We summarized transcripts from each participant group, applying rapid qualitative analysis. For OAEH, data that referenced proposed adaptations or feedback about the SICG tool were grouped into two domains: “SICG interpretation” and “SICG feedback”. For providers, we used domains from the Toolkit of Adaptation Approaches: “collaborative working”, “team”, “endorsement”, “materials”, “messages”, and “delivery”. Summaries were grouped into matrices to help visualize themes to inform adaptations. The adapted guide was then reviewed by expert palliative care clinicians for further refinement.ResultsThe final sample included 11 OAEH (45% Black, 61 ± 7 years old) and 10 providers (80% White, 8.9 ± years practice). Adaptation themes included changing words and phrases to (1) increase transparency about the purpose of the conversation, (2) promote OAEH autonomy and empowerment, (3) align with nurses’ and social workers’ scope of practice regarding facilitating diagnostic and prognostic awareness, and (4) be sensitive to the realities of fragmented healthcare. Responses also revealed training and implementation considerations.ConclusionsThe adapted SICG is a promising clinical tool to aid in the delivery of serious illness conversations with OAEH. Future research should use this updated guide for implementation planning. Additional adaptations may be dependent on specific settings where the SICG will be delivered.

Quality of palliative and end-of-life care: a qualitative study of experts’ recommendations to improve indicators in Quebec (Canada)

BackgroundIn 2021, the National Institute of Public Health (INSPQ) (Quebec, Canada), published an update of the palliative and end-of-life care (PEoLC) indicators. Using these updated indicators, this qualitative study aimed to explore the point of view of PEoLC experts on how to improve access and quality of care as well as policies surrounding end-of-life care.MethodsSemi-directed interviews were conducted with palliative care and policy experts, who were asked to share their interpretations on the updated indicators and their recommendations to improve PEoLC. A thematic analysis method was used.ResultsThe results highlight two categories of interpretations and recommendations pertaining to: (1) data and indicators and (2) clinical and organizational practice. Participants highlight the lack of reliability and quality of the data and indicators used by political and clinical stakeholders in evaluating PEoLC. To improve data and indicators, they recommend: improving the rigour and quality of collected data, assessing death percentages in all healthcare settings, promoting research on quality of care, comparing data to EOL care directives, assessing use of services in EOL, and creating an observatory on PEoLC. Participants also identified barriers and disparities in accessing PEoLC as well as inconsistency in quality of care. To improve PEoLC, they recommend: early identification of palliative care patients, improving training for all healthcare professionals, optimizing professional practice, integrating interdisciplinary teams, and developing awareness on access disparities.ConclusionsResults show that PEoLC is an important aspect of public health. Recommendations issued are relevant to improve PEoLC in and outside Quebec.

Improving access to palliative care to mitigate multi-dimensional breast cancer suffering.

e24084 Background: The breast cancer (BC) divide persists as a global health and equity challenge. IARC data show that in low human development index (HDI) countries – 1/27 women is diagnosed with BC in their lifetime and 1/48 die from it. In very high HDI countries, BC is more common (1/12), but death is much less so (1/71). Hence, BC generates a substantial burden of serious health-related suffering (SHS) worldwide, and a particularly high and unmet demand for end-of-life care in poorer countries. This research links to three Lancet Commissions (LC): the forthcoming report of LC on BC, follow-up to LC Global Access to Palliative Care (PC), and LC on Cancer and Health Systems. We apply the concept of SHS to delineate and measure PC need for BC. This research is the first to explore disease-specific SHS, building on previous estimates that did not differentiate across cancers. Focusing on BC adds knowledge on: experiences of suffering across the cancer continuum including survivorship; dimensions of suffering specific to women and especially young women; and, differences in symptoms of suffering by stage of diagnosis. Methods: To identify symptoms and dimensions of suffering and to estimate the BC-specific SHS burden, 14 experts, most from the Lancet BC Commission, based in 12 countries of varying HDI, participated in: 1) an online survey on days of SHS and days receiving PC; 2) focus groups to discuss BC need for generalist and specialist PC from time of diagnosis; and 3) structured interviews to refine and deepen data. Results: Stage IV disease and end-of-life account for most PC consultations; no PC consultations were recommended in earlier stages. Experts concluded BC-specific SHS must be differentiated for metastatic disease based on staging, and highlighted symptoms of suffering associated with gender, reproductive age and sexuality ignored in previous work. They estimated an annual average PC need of approximately 175 days for decedents, and over 50 days per year for non-decedents estimated to live 4 years with SHS. Unmet need is high as BC decedents reported receive about 75 days, and non-decedents about 90 days of PC prior to the last year of life. Oncology experts focus on PC being only for final disease stage, yet PC experts stress the need for earlier PC integration into the BC trajectory, including survivorship. Conclusions: With 669,500 deaths in 2023, the burden of BC-specific SHS total is estimated at over 118 million days a year. These numbers represent suffering from pain, dyspnea, fatigue, as well as range of other symptoms that could benefit from PC. Yet, PC is unavailable for the majority in low- and middle-income countries. In addition, some BC symptoms of suffering are under-recognized globally. Health and cancer should prioritize this substantial opportunity to respond to patient, family and caregiver suffering by investing in appropriate PC access and capacity development.

Generalist, specialist, or expert in palliative care? A cross-sectional open survey on healthcare professionals’ self-description

BackgroundIn the Netherlands, palliative care is provided by generalist healthcare professionals (HCPs) if possible and by palliative care specialists if necessary. However, it still needs to be clarified what specialist expertise entails, what specialized care consists of, and which training or work experience is needed to become a palliative care specialist. In addition to generalists and specialists, ‘experts’ in palliative care are recognized within the nursing and medical professions, but it is unclear how these three roles relate. This study aims to explore how HCPs working in palliative care describe themselves in terms of generalist, specialist, and expert and how this self-description is related to their work experience and education.MethodsA cross-sectional open online survey with both pre-structured and open-ended questions among HCPs who provide palliative care. Analyses were done using descriptive statistics and by deductive thematic coding of open-ended questions.ResultsEight hundred fifty-four HCPs filled out the survey; 74% received additional training, and 79% had more than five years of working experience in palliative care. Based on working experience, 17% describe themselves as a generalist, 34% as a specialist, and 44% as an expert. Almost three out of four HCPs attributed their level of expertise on both their education and their working experience. Self-described specialists/experts had more working experience in palliative care, often had additional training, attended to more patients with palliative care needs, and were more often physicians as compared to generalists. A deductive analysis of the open questions revealed the similarities and distinctions between the roles of a specialist and an expert. Seventy-six percent of the respondents mentioned the importance of having both specialists and experts and wished more clarity about what defines a specialist or an expert, how to become one, and when you need them. In practice, both roles were used interchangeably. Competencies for the specialist/expert role consist of consulting, leadership, and understanding the importance of collaboration.ConclusionsAlthough the grounds on which HCPs describe themselves as generalist, specialist, or experts differ, HCPs who describe themselves as specialists or experts mostly do so based on both their post-graduate education and their work experience. HCPs find it important to have specialists and experts in palliative care in addition to generalists and indicate more clarity about (the requirements for) these three roles is needed.

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.