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BACKGROUND: Symptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an Other problem. METHODS: This retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one Other problem. Seven similar symptoms were listed in both versions. RESULTS: In 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and

Introduction: Financial toxicity has negative implications for patient well-being and health outcomes. There is a gap in understanding financial toxicity for patients undergoing palliative radiotherapy (RT). Methods: A review of patients treated with palliative RT was conducted from January 2021 to December 2022. The FACIT-COST (COST) was measured (higher scores implying better financial well-being). Financial toxicity was graded according to previously suggested cutoffs: Grade 0 (score ≥26), Grade 1 (14-25), Grade 2 (1-13), and Grade 3 (0). FACIT-TS-G was used for treatment satisfaction, and EORTC QLQ-C30 was assessed for global health status and functional scales. Results: 53 patients were identified. Median COST was 25 (range 0-44), 49% had Grade 0 financial toxicity, 32% Grade 1, 15% Grade 2, and 4% Grade 3. Overall, cancer caused financial hardship among 45%. Higher COST was weakly associated with higher global health status/Quality of Life (QoL), physical functioning, role functioning, and cognitive functioning; moderately associated with higher social functioning; and strongly associated with improved emotional functioning. Higher income or Medicare or private coverage (rather than Medicaid) was associated with less financial toxicity, whereas an underrepresented minority background or a non-English language preference was associated with greater financial toxicity. A multivariate model found that higher area income (HR .80, P = .007) and higher cognitive functioning (HR .96, P = .01) were significantly associated with financial toxicity. Conclusions: Financial toxicity was seen in approximately half of patients receiving palliative RT. The highest risk groups were those with lower income and lower cognitive functioning. This study supports the measurement of financial toxicity by clinicians.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the persons capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

In critical care, the specific, structured approach to patient care known as a time-limited trial has been promoted in the literature to help patients, surrogate decision makers, and clinicians navigate consequential decisions about life-sustaining therapy in the face of uncertainty. Despite promotion of the time-limited trial approach, a lack of consensus about its definition and essential elements prevents optimal clinical use and rigorous evaluation of its impact. The objectives of this American Thoracic Society Workshop Committee were to establish a consensus definition of a time-limited trial in critical care, identify the essential elements for conducting a time-limited trial, and prioritize directions for future work. We achieved these objectives through a structured search of the literature, a modified Delphi process with 100 interdisciplinary and interprofessional stakeholders, and iterative committee discussions. We conclude that a time-limited trial for patients with critical illness is a collaborative plan among clinicians and a patient and/or their surrogate decision makers to use life-sustaining therapy for a defined duration, after which the patients response to therapy informs the decision to continue care directed toward recovery, transition to care focused exclusively on comfort, or extend the trials duration. The plans 16 essential elements follow four sequential phases: consider, plan, support, and reassess. We acknowledge considerable gaps in evidence about the impact of time-limited trials and highlight a concern that if inadequately implemented, time-limited trials may perpetuate unintended harm. Future work is needed to better implement this defined, specific approach to care in practice through a person-centered equity lens and to evaluate its impact on patients, surrogates, and clinicians.

BACKGROUND: Palliative care has the potential to address significant unmet needs in people with Parkinsons disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. AIM: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinsons disease. DESIGN: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. SETTING/PARTICIPANTS: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinsons disease and related disorders conducted at nine sites. RESULTS: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. CONCLUSIONS: Clinicians caring for people with Parkinsons disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

BACKGROUND & AIMS: There is growing acceptance that principles of palliative care should be integrated into the management of serious illnesses affecting the liver, such as acute-on-chronic liver failure (ACLF). However, rates, patterns, and predictors of specialty palliative care consultation among patients with ACLF have not been well-described. METHODS: We performed a retrospective cohort study of patients hospitalized with ACLF between 1/1/2008 and 12/31/2018 using the VOCAL cohort. Patients were followed until 6/2021. We used mixed-effects regression analyses to identify significant patient and facility factors associated with palliative care consultation. We examined timing of consultation, the influence of ACLF characteristics, and facility-level variation on receipt of palliative care consultation. RESULTS: We identified 21,987 patients hospitalized with ACLF, of whom 30.5% received specialty palliative care consultation. Higher ACLF grade (ACLF-2 [odds ratio (OR) 1.82, 95% CI 1.67-1.99], ACLF-3 [OR 3.06, 95% CI 2.76-3.40]), prior specialty palliative care consultation (OR 2.62, 95% CI 2.36-2.91), and hepatocellular carcinoma (OR 2.10, 95% CI 1.89-2.33) were associated with consultation. Consultation occurred latest and closest to the time of death for patients with ACLF-3 compared to ACLF-1 and ACLF-2. Significant facility-level variation in consultation persisted among patients with ACLF-3, despite adjusting for multiple patient and facility factors. CONCLUSION: In this large cohort of hospitalized patients with ACLF, specialty palliative care consultation was rare, more common in patients with higher grade ACLF, and tended to occur closer to the time of death for the sickest patients. Greater attention should be placed on earlier integration of palliative care during acute hospitalizations in patients with ACLF. IMPACT AND IMPLICATIONS: Though palliative care consultation is recommended for patients with acute-on-chronic liver failure, there is no data demonstrating how often this occurs during hospitalizations, on a population level. We found that consultation occurs in only 30.5% of patients and occurs later for patients with grade 3 acute-on-chronic liver failure. Our data should provoke clinicians to urgently consider quality improvement efforts to integrate palliative care into the management of these seriously ill patients.

CONTEXT: Parkinsons disease and related disorders (PDRD) are fatal neurodegenerative disorders characterized by a fluctuating course that can complicate prognostication. The surprise question (SQ: Would you be surprised if your patient died in the next year?) has been used to identify patients with limited prognosis but has not been assessed in PDRD. OBJECTIVES: To determine the validity of the SQ in predicting 12-month mortality in PDRD. METHODS: Data was analyzed from 301 patients and 34 community-based neurologists who were participating in a clinical trial of outpatient palliative care for patients with PDRD. Clinicians answered the SQ for each patient at baseline. Descriptive statistics at baseline, chi-square tests of independence, 2 × 2 and 2 × 3 cross tables were used. Survival analysis compared SQ responses using Kaplan-Meier curves. Risk estimate analyses identified patient characteristics associated with clinicians responses. RESULTS: Mortality was 10.3% (N = 31) at 1 year. The sensitivity and specificity of the SQ was 80.7% and 58.9%, respectively with AUC = 0.70, positive predictive value of 18.4% and negative predictive value of 96.4%. Older age, atypical parkinsonism, and dementia were associated with responding no to the SQ. CONCLUSION: The SQ is sensitive to 12-month mortality in PDRD, with a high negative predictive value. The SQ may be useful for identifying patients less likely to die within a year and may be useful for identifying patients with palliative care needs outside of end-of-life care. This latter use may assist in mobilizing early and timely referral to specialist palliative care.

Background: Several clinical trials support the efficacy of music therapy (MT) for improving outcomes in hospitalized patients, but few studies have evaluated the real-world delivery and integration of MT across multiple medical centers. This article describes the rationale, design, and population characteristics of a retrospective study examining the delivery and integration of MT within a large health system. Methods: A retrospective electronic health record (EHR) review was conducted of hospitalized patients seen by and/or referred to MT between January 2017 and July 2020. MT was provided across ten medical centers, including an academic medical center, a freestanding cancer center, and eight community hospitals. Discrete demographic, clinical, and MT treatment and referral characteristics were extracted from the EHR, cleaned, and organized using regular expressions functions, and they were summarized using descriptive statistics. Results: The MT team (average 11.6 clinical fulltime equivalent staff/year) provided 14,261 sessions to 7378 patients across 9091 hospitalizations. Patients were predominantly female (63.7%), White (54.3%) or Black/African American (44.0%), 63.7 ± 18.5 years of age at admission, and insured under Medicare (51.1%), Medicaid (18.1%), or private insurance (14.2%). Patients hospitalizations (median length of stay: 5 days) were primarily for cardiovascular (11.8%), respiratory (9.9%), or musculoskeletal (8.9%) conditions. Overall, 39.4% of patients hospital admissions included a mental health diagnosis, and 15.4% were referred to palliative care. Patients were referred by physicians (34.7%), nurses (29.4%), or advanced practice providers (24.7%) for coping (32.0%), anxiety reduction (20.4%), or pain management (10.1%). Therapists provided sessions to patients discharged from medical/surgical (74.5%), oncology (18.4%), or intensive care (5.8%) units. Conclusions: This retrospective study indicates that MT can be integrated across a large health system for addressing the needs of socioeconomically diverse patients. However, future research is needed to assess MTs impact on health care utilization (i.e., length of stay and rates of readmission) and immediate patient-reported outcomes.

Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trials healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the projects inception to completion. The study team wanted to understand the impact this project had on the SAC members. In this narrative, we use reflective dialogue to share SAC members lived experiences and the impact the EMPallA study has had on members both personally and professionally. We detail the (1) benefits SAC members, specifically patients, and caregivers, have had through working on this project. (2) The importance of recruiting diverse SAC members with different lived experiences and leveraging their feedback in clinical research. (3) Value of community capacity building to ensure the common vision of the clinical trial is promoted.

BACKGROUND: During acute health deterioration, emergency medicine and palliative care clinicians routinely discuss code status (e.g., shared decision making about mechanical ventilation) with seriously ill patients. Little is known about their approaches. We sought to elucidate how code status conversations are conducted by emergency medicine and palliative care clinicians and why their approaches are different. METHODS: We conducted a sequential-explanatory, mixed-method study in three large academic medical centers in the Northeastern United States. Attending physicians and advanced practice providers working in emergency medicine and palliative care were eligible. Among the survey respondents, we purposefully sampled the participants for follow-up interviews. We collected clinicians self-reported approaches in code status conversations and their rationales. A survey with a 5-point Likert scale (very unlikely to very likely) was used to assess the likelihood of asking about medical procedures (procedure based) and patients values (value based) during code status conversations, followed by semistructured interviews. RESULTS: Among 272 clinicians approached, 206 completed the survey (a 76% response rate). The reported approaches differed greatly (e.g., 91% of palliative care clinicians reported asking about a patients acceptable quality of life compared to 59% of emergency medicine clinicians). Of the 206 respondents, 118 (57%) agreed to subsequent interviews; our final number of semistructured interviews included seven emergency medicine clinicians and nine palliative care clinicians. The palliative care clinicians stated that the value-based questions offer insight into patients goals, which is necessary for formulating a recommendation. In contrast, emergency medicine clinicians stated that while value-based questions are useful, they are vague and necessitate extended discussions, which are inappropriate during emergencies. CONCLUSIONS: Emergency medicine and palliative care clinicians reported conducting code status conversations differently. The rationales may be shaped by their clinical practices and experiences.

Background: Members of racial or ethnic minority groups utilize palliative care (PC) services less than non-Hispanic White patients and multiple factors contribute to this disparity. The impact of racial, ethnic, and language (REL) concordance between patients and clinicians has been demonstrated in general medical populations, but not in PC populations. We characterized the racial and ethnic composition and languages spoken of California PC clinicians and patients to examine clinical impacts of REL concordance. Methods: Using Palliative Care Quality Network data, 15 inpatient teams were identified in California that had collected data on patient race/ethnicity and language. Patient and clinician data were analyzed using means and medians for continuous variables, and chi-squared tests to explore similarities and differences between clinician and patient data. Results: 51 clinicians from nine teams completed the survey. The largest non-White and non-English speaking groups among patients and clinicians identified as Hispanic/Latinx (31.5% of patients, 16.3% of clinicians) and as Spanish speakers (22.6% of patients, 7.5% of clinicians). There was a significantly higher proportion of Hispanic/Latinx patients compared to clinicians (p-value 0.01), with Southern California demonstrating the largest difference (30.4% of patients vs. 10.7 % of clinicians, p-value 0.01). Similar proportions of patients and clinicians reported Spanish fluency (22.6% vs 27.5%, p-value 0.31). Discussion: We found significant differences in the racial/ethnic distributions of Hispanic/Latinx patients and clinicians in California, prompting consideration of whether a lack of representation of Hispanic/Latinx clinicians relative to the patient population may contribute to lower palliative care utilization among Hispanic/Latinx patients.

BACKGROUND: Morning and evening fatigue are distinct and distressing symptoms experienced during chemotherapy that demonstrate a large amount of interindividual variability. OBJECTIVES: The objectives of this study were to identify subgroups of patients with distinct morning and evening fatigue co-occurrence profiles and evaluate for differences among these subgroups in demographic, clinical, and symptom characteristics and quality of life. METHODS: Oncology patients ( n = 1,334) completed the Lee Fatigue Scale to self-report morning and evening fatigue, six times over two cycles of chemotherapy. Latent profile analysis was used to identify subgroups of patients with distinct morning and evening physical fatigue profiles. RESULTS: Four distinct morning and evening fatigue profiles were identified (i.e., Both Low, Low Morning + Moderate Evening, Both Moderate, and Both High). Compared to the Both Low profile, the Both High profile was significantly younger, less likely to be married or partnered, more likely to live alone, had a higher comorbidity burden, and lower functional status. The Both High profile had higher levels of anxiety, depressive symptoms, sleep disturbance, and pain and lower levels of quality of life. DISCUSSION: The variability in the morning and evening severity scores among the four profiles supports the hypothesis that morning and evening fatigue are distinct but related symptoms. Clinically meaningful levels of both morning and evening fatigue were reported by 50.4% of our sample, which suggests that the co-occurrence of these two symptoms is relatively common. Patients in Both Moderate and Both High profiles experienced an extremely high symptom burden that warrants ongoing assessments and aggressive symptom management interventions.

Abstract Background Patients with palliative care needs live with the reality of limited time due to illness or age, eliciting emotional and existential responses. A failure to address their existential needs can lead to significant suffering. A person-centred approach is paramount to effectively address these needs, emphasising holistic care and effective communication. Although existing communication models focus on predefined frameworks, a need exists to explore more spontaneous and confidential conversations between patients and nurses. Confidential conversations have the potential to build therapeutic relationships and provide vital emotional support, highlighting the need for further research and integration into palliative care practice. This study aims to more deeply understand the meaning of confidential conversations for patients with palliative care needs. Methods In-depth interviews were conducted with 10 patients in the context of specialised palliative care. A hermeneutic analysis was used to gain a deeper understanding of the meanings of the conversations. Results The patients had varying experiences and wishes concerning confidential conversations. They strived for self-determination in finding confidants, seeking trust and comfort in their interactions with nurses. Trust was crucial for creating a safe space where patients could express themselves authentically. In shared belonging, confidential conversations with a nurse provided validation and relief from life’s challenges. Experiences of feeling unheard or rejected by a nurse could intensify loneliness, prompting individuals to withdraw and remain silent. Regardless of the motives behind their choices, it was crucial that patients felt respect and validation in their decisions. Their autonomy could thus be recognised, and they felt empowered to make decisions based on their unique preferences. Conclusions Patients value trust and understanding, particularly in confidential conversations with nurses, which offer solace, validation and empowerment. However, indifference can increase patients’ suffering, fostering self-doubt and reluctance to engage further. To address this, health care can prioritise empathic communication skills, offer ongoing support to nurses, and promote continuity in care through investment in training and resources. Additionally, adopting a person-centred approach in confidential conversations is crucial, considering patients’ varying preferences.

Abstract Background Patient-Reported Outcomes (PROs) are recommended for use in clinical oncology. However, they are not routinely used in professional palliative care practices in Japan. The reasons include both patient and healthcare provider factors and the implementation of PROs. This study aimed to develop and validate clinical implementation methods for PROs in Japanese palliative care units. Methods The Consolidated Framework for Implementation Research (CFIR) was conducted with four palliative care units in Japan. The study was conducted in six steps: unit assessment, development and implementation of a PRO implementation plan, PRO post-implementation survey and analysis of its utilization, a review of the PRO implementation process, creation of a PRO implementation method in a palliative care unit, and use and verification of the implementation method. Steps 1–5 were the development phase, and step 6 was the verification phase. Results Interviews were conducted with healthcare providers prior to PRO implementation. Intervention characteristics, patient needs in the palliative care unit, and factors related to the organization were identified as barriers. The implementation plan was developed, and the core members were selected. The implementation procedures were created in the above mentioned steps. PROs were used in the palliative care units. The same was true in the validation phase. Conclusions This study guided PROs in specialized palliative care unit in a clinical setting. The method was developed and validated for the implementation of PROs in the palliative care unit. In the PRO implementation process, it was important to assess the unit, address the barriers to implementation, and reduce the burden on healthcare providers. Furthermore, healthcare providers had to be supported by the champion, a person responsible for the implementation of PROs in the palliative care unit.

Abstract Background In 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. Methods A 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. Results Eight 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. Conclusions Although 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.

Abstract Background In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. Aim The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. Methods In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. Results From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. Conclusions Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.

Abstract Background Annually, approximately five per cent of dependent children — aged under eighteen years — in the United Kingdom (UK), experience parental death. Nurses and social workers caring for parents with life-limiting illnesses, including cancer, help families support their children. However, these professionals have been found to lack confidence and competence in fulfilling this role. Methods We conducted three rounds of a classic-Delphi survey to identify and measure a panel of topic experts’ consensus on the priorities and issues for nurses and social workers when supporting families and children through parental death. The Delphi survey was conducted with a panel of UK topic experts (n=43) including lead health and social care professionals (n=30), parents bereaved of a partner whilst parenting dependent children (n=6), academics (n=4) and bereaved young adults (n=3). Results Ninety per cent (n=18/20) of the issues for nurses and social workers and all (7/7) of the priorities rated and ordered in the survey achieved consensus. Key priorities were 1) training in opening conversations with families about dependent children, 2) training and support for nurses and social workers to manage their own and others’ emotions arising from conversations with parents about children’s needs regarding parental death, and 3) increasing nurses’ and social workers’ knowledge of sources of information to support families before the death of a parent. Conclusion We identified priorities for UK nurses and social workers. Further research is needed to identify which of these nurses and social workers would benefit most from support, and how any resultant interventions could enhance confidence and competence in helping families to support children through parental death.

Abstract Background Indigenous palliative persons and their families often have different values, spiritual traditions, and practices from Western culture and Canadian health systems. Additionally, many healthcare policies and practices have been established without adequate consultation of the Indigenous populations they are meant to serve. This can result in barriers to Innu receiving culturally safe end-of-life care. Innu community leaders from Sheshatshiu, Labrador, have identified a need for further research in this area. The purpose of this study is to: (1) describe the cultural and spiritual practices related to death and dying of the Innu in Sheshatshiu; (2) identify aspects of current end-of-life care delivery that serve and/or fail to meet the cultural and spiritual needs of the Innu in Sheshatshiu; and (3) explore ways to integrate current end-of-life care delivery practices with Innu cultural and spiritual practices to achieve culturally safer care delivery for the Innu. Methods This qualitative patient-oriented research study was co-led by Innu investigators and an Innu advisory committee to conduct semi-structured interviews of 5 healthcare providers and 6 decision-makers serving the community of Sheshatshiu and a focus group of 5 Innu Elders in Sheshatshiu. Data was analyzed thematically from verbatim transcripts. The codebook, preliminary themes, and final themes were all reviewed by Innu community members, and any further input from them was then incorporated. Quotations in this article are attributed to Innu Elders by name at the Elders’ request. Results The findings are described using eight themes, which describe the following: relationships and visitation support a “peaceful death”; traditional locations of death and dying; the important role of friends and community in providing care; flexibility and communication regarding cultural practices; adequate and appropriate supports and services; culturally-informed policies and leadership; and Innu care providers and patient navigators. Conclusions The Innu in Sheshatshiu have a rich culture that contributes to the health, care, and overall well-being of Innu people approaching end of life. Western medicine is often beneficial in the care that it provides; however, it becomes culturally unsafe when it fails to take Innu cultural and spiritual knowledge and traditions into account.

Background: The overall level of physical and psychological symptom burden of advanced cancer patients (ACP) in an outpatient setting is notoriously difficult to assess. Therefore, more efficient and objective assessment is needed to accomplish this important task. Objectives: The aim of this study was to compare the physical and psychological symptom burden rated by palliative care nurse (PCN) versus patient?s self-rating. Design: This retrospective German cohort study analyzed symptom burden using an electronic patient-reported outcome measure (ePROM). After referral to an outpatient specialized palliative care team, a PCN assessed the patient?s symptoms both up to three months before initial presentation (IP) and at IP. Group differences were identified using analyses of variance (ANOVA). Further descriptive analysis of patient characteristics was used. Subjects: The study enrolled 164 ACP who were referred to a specialized palliative care (SPC) team. Mean age was 62 (? 12.6) years. Gastrointestinal (n = 46; 28.0%), lung (n = 32; 19.5%), and breast cancer (n = 34; 20.7%) were the most common entities. Results: Most frequent reasons for referral were pain (n = 55; 33.5%) and social care problems (n = 36; 22.0%). Patients reported significantly higher grades on depression (n = 144; Z = ?2.8, p = 0.005), anxiety (n = 144; Z = ?2.376, p = 0.018), and worsened general condition (n = 139; Z = ?7.005, p < 0.001). Conclusion: ACP in an outpatient setting were more frequently referred to SPC for pain management and assistance with social problems with regard to the cancer and its limitations. Psychological distress was underrated by the PCN in comparison with patient self-reporting through ePROM. This underlines the importance of self-reported outcome measurement.

Xun-Wei Liu,1,&ast; Zhi-Guo Wang,1,&ast; Peng Jin,1 Li-Li Yu,2 Gang Sun1 1Department of Radiology, The 960th Hospital of Joint Logistics Support Force of PLA, Jinan, Shandong Province, People’s Republic of China; 2Department of Information, The 960th Hospital of Joint Logistics Support Force of PLA, Jinan, Shandong Province, People’s Republic of China&ast;These authors contributed equally to this workCorrespondence: Gang Sun, Department of Radiology, The 960th Hospital of Joint Logistics Support Force of PLA, No. 25, Shifan Road, Jinan, Shandong Province, 250031, People’s Republic of China, Email cjr.sungang@vip.163.comBackground: Although percutaneous osteoplasty (POP) has been widely accepted and is now being performed for the treatment of painful bone metastases outside the spine. It is emerging as one of the most promising procedures for patients with painful bone metastasis who are unsuitable for surgery or who show resistance to radiotherapy and/or analgesic therapies. However, there are only scarce reports regarding osteoplasty in painful sternal metastases.Subjects and Method: We report four patients with sternal metastases suffered with severe pain of anterior chest wall. The original tumors included lung cancer and thyroid cancer. For the initially pain medication failing, all the four patients received POP procedure under fluoroscopic and cone-beam CT (CBCT) guidance, and obtained satisfying resolution of painful symptoms at 6-month postop follow-up.Conclusion: POP is a safe and effective treatment for pain caused by metastatic bone tumors in the sternum. In practice, however, percutaneous puncture of pathologic sternal fractures can be a challenge because of the long flat contour and the defacement by lytic tumor of bony landmarks. We find that the use of fluoroscopic and CBCT can facilitate POP for flat bone fractures with displacing the trajectory planning, needle advancement, and cement delivery in time.Keywords: osteoplasty, bone metastasis, Pain, palliative care, sternum

Abstract Background Ethical decision-making in end-of-life care is one of the most challenging aspects of healthcare: providing ethical care to the society is one of the most important responsibilities of healthcare professionals. In order to assess nurses’ ethical decision-making in end-of-life care, researchers need a specialized and comprehensive instrument which is sufficiently valid and reliable. The present study was conducted to translate and test the psychometric properties of the Persian version of Nurses’ Ethical Decision-Making in End-of-Life Care Scale (NEDM-EOLCS). Methods This is a cross-sectional, multi-centric study with a methodological design The participants were selected via convenience sampling from five hospitals located in Iran. In total, 1320 nurses (660 for exploratory factor analysis and 660 for confirmatory factor analysis) participated in the study. The original NEDM-EOLCS was translated into Persian and subsequently the psychometric properties of the scale were assessed according to COSMIN criteria. Results Exploratory factor analysis (EFA) showed the factor loading of the 55 items to be between 0.62 and 0.88, all of which were significant. Also, exploratory factor analysis showed that 3 factors (perceived professional accountability, moral reasoning/moral agency and moral practice) explained 74.51% of the variance. Confirmatory factor analysis (CFA) results verified the good fit of the data (a chi-square of 21.74, df = 7, P = 0.001) RMSEA = 0.01, CFI = 0.96, NFI = 0.95, and TLI = 0.97). The reliability of the scale was measured in terms of its internal consistency and the Cronbach’s alpha of the whole instrument was found to be 0.98. Conclusion The Persian version of NEDM-EOLCS for nurses is sufficiently valid and reliable. Thus, this instrument can be used to measure nurses’ ethical decision-making in end-of-life care and identify the most effective strategies, e.g. educational interventions, to improve ethical decision-making skills in end-of-life care in these healthcare professionals as necessary.

Abstract Introduction Advanced age is associated with life-threatening conditions at the end of life. Many of these persons at the end of their lives cannot make decisions because of the variable consciousness. They are able to make decisions and identify their care priorities, in a process called advanced care planning. So, an instrument is required for investigating ACP of the elderly population. This study was performed to determine the psychometric properties of the Persian version of the advanced care planning questionnaire(ACPQ) in elderly population referring to Tehran. Method This methodological study was performed in five hospitals in 2021–2022. A total of 390 eligible elderlies were included. The psychometric assessment including translation, face validity, content validity were performed Alsothe exploratory factor analysis and confirmatory factor analysis were assessed. Reliability were done by internal consistency by assessing Cronbach alpha and stability was performed using test-retest. Results The face validity of the instrument was performed with minor changes. The content validity index for all of the items was above 0.79. In EFA four factors was extracted also CFA showed that the four-factor model has a good fit of the data (RMSEA: 0.04; NFI: 0.97 CFI: 0.99; IFI: 0.99; RFI: 0.96; AGFI: 0.87; GFI 0/90; standardized RMR: 0.02). Cronbach alpha and ICC were 0.72–0.94 and 0.85–0.96, respectively. Conclusion The Persian version of the advance care planning questionnaire has desirable psychometric properties for measuring the advanced care planning of the elderly population. In addition, healthcare providers in Iran can employ this questionnaire in their practice and research.

Abstract Background The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. Methods Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. Keywords: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. Results Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. Conclusion Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.

Background: Hemoglobin (Hb) has been reported as a prognostic factor in many cancer patients. However, its effect on the prognosis of patients with advanced cancer receiving palliative treatment is still unclear. Objective: The aim of this study was to assess whether Hb can be used as a prognostic indicator for patients with advanced cancer receiving palliative treatment. Methods: From July 2013 to October 2015, 368 consecutive patients were treated in the Palliative Treatment Center of Shanghai Cancer Center, Fudan University. The data of 105 patients were extended in the follow-up. The cutoff value selected for Hb was 100?g/L. Results: The median survival time of patients with low hemoglobin (LHb) was shorter than that of patients with high hemoglobin (HHb; 41 days vs. 84 days). In addition, in the follow-up readmission cohort (n?=?105), the median survival time of patients with HHb (HHb ? HHb) was 3.44 times longer than that of patients with LHb (HHb ? LHb). To sum up, both LHb and descending Hb were identified as independent prognostic factors for poor prognosis. Conclusions: In palliative treatment, Hb can be used as a stratification factor to judge poor prognosis in advanced cancer patients.

Abstract The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records of PPC clinic during the years 2001 to 2021 and the IMD outpatients. We established a parallel with the world scientific literature concerning the epidemiology of PPC and IMD. Among outpatients, 14% were diagnosed with IMD, which were referred to the PPC service earlier compared to Non‐IMD cases. The Group 3 (complex molecules) was the most frequent (64.7%), following by Group 1 representing by small molecules (21.6%), the latter having a lower median age at diagnosis when compared to the former (0.7 vs. 5.2 years, p = 0.001). The sphingolipidoses were the pathologies most frequent in our cohort, in line with what was observed in the literature. There were no differences between IMD groups in terms of diagnosis and PPC referral age, however in Non‐IMD conditions, the age of diagnosis were earlier than IMD. Nevertheless, IMD group showed lower age of referral to PPC. The IMD comprises large fraction of outpatients in the PPC setting, thus further studies are needed in this field.

Abstract Background Despite a large burden of life-limitingillness, there exists a dearth of services of palliative care in Pakistan. International guidelines have questionable applicability in Pakistan due to the socioeconomic differences. We generated a protocol describing the process of developing comprehensive palliative care guidelines and palliative care referral pathways for primary care practitioners to adopt in Pakistan. Methods A GRADE-ADOLOPMENT approach with modification has been employed to create guidelines for a Pakistani context. The “National Comprehensive Cancer Network Guidelines Insights: Palliative Care, Version 2.2021” was used as the source guideline. Recommendations from the source guideline were reviewed by two local palliative care specialists to either “Adopt,” “Adapt” or “Exclude”. The finalized recommendations were incorporated into the local palliative care guideline. Clinical diagnosis and referral pathways were made from the finalized guideline. Any gaps in management found in the pathways were filled by taking existing recommendations from other credible guidelines. Results Twenty-seven recommendations were adopted without modification. No recommendations were deemed to be adapted and 15 were excluded. The referral care pathways created were reflective of the local guideline and included elements of initial assessment, preliminary management, reassessment, and referral. 6 additional recommendations were made. Conclusion The described clinical practice guidelines and primary care clinical referral pathways will aid to standardize palliative care provision in Pakistan. These can be used by other resource constrained settings to develop guidelines within their own local context.

Abstract Background Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany. Methods Recommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility. Results A total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants’ comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations. Conclusions The Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures. Trial registration The present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).

Background: Nursing practice must include palliative care (PC) as an essential component. The main obstacles to quality PC are nurses’ lack of knowledge, negative attitudes, and gaps in evidence-based practice (EBP). Accordingly, the present study aims to evaluate nurses’ knowledge of PC, their attitude towards caring for dying patients, and its relationship with EBP (knowledge/skills, attitude, and performance) in primary health care (PHC) organizations in Astana City, Kazakhstan. Methods: The data were collected through a cross-sectional study design from 565 nurses working in primary health care organizations in Astana, Kazakhstan, from January 2022 to March 2023. The subjects were recruited by convenience sampling. The study data were collected using an online questionnaire with four parts: Demographic and professional characteristics, the palliative care quiz for nurses (PCQN), the Frommelt attitudes towards care of the dying (FATCOD), and the evidence-based practice questionnaire (EBPQ). The independent t-test, a one-way ANOVA, and Kendall tau rank correlation coefficient were employed to analyze data. Hierarchical multiple regression was also developed to identify variables influencing nurses’ PC knowledge. SPSS software, version 24, was used for data analysis. The significance level was set at 0.05. Results: The nurses’ PC knowledge level was low (mean score=9.06±2.93). Most nurses (93%) had a neutral or negative attitude towards caring for dying patients (mean score=94.50±12.41). The obtained score (4.39±1.05) on the EBPQ indicated a moderate level of competence in EBP. Work experience (β=0.534; P=0.000) and competencies in EBP (β=0.136, P=0.001) were associated with knowledge of PC. The aspect of knowledge/skills in EBP had the most significant impact on nurses’ competence level in the PC field (β=0.122, P=0.005). Conclusion: An insufficient level of nurses’ knowledge about PC and a neutral or negative attitude towards caring for dying patients were revealed. The results also indicated that much attention and resources should be directed to improving nurses’ knowledge level in the field of EBP because this aspect significantly affects the level of knowledge on PC.

Abstract Background Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals’ experiences with assisted dying set against the backdrop of legislative expansion. Methods A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. Results Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals’ decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. Conclusions The interplay of multiple factors and their degree of influence on healthcare professionals’ decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals’ uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational.

Jiraporn Sri-on,1 Jesda Phumsrisawat,2 Rapeeporn Rojsaengroeng2 1Geriatric Emergency Medicine Unit, The Department of Emergency Medicine, Vajira Hospital, Navamindradhiraj University, Bangkok, Thailand; 2The Department of Emergency Medicine, Vajira Hospital, Navamindradhiraj University, Bangkok, ThailandCorrespondence: Jiraporn Sri-on, Geriatric Emergency Medicine Unit, The Department of Emergency Medicine, Vajira Hospital, Navamindradhiraj University, 681 Samsen road, Bangkok, Dusit, 10130, Thailand, Tel +66 896840010, Email Jiraporn.rew@gmail.comPurpose: This study aimed to determine the percentage of missed opportunities (MOs) to identify and treat older adults presenting with palliative care (PC) needs at one emergency department (ED). The secondary objective was to determine the rate of treatment interventions regardless of whether the patients received a PC plan as well as the direct cost of treatment.Patients and Methods: In this retrospective study, PC need was determined using broad and narrow criteria. The subjects comprised patients aged 65 or older who had out-of-hospital cardiac arrest and/or died in the ED (Group 1) or within 72 hours after ED disposition (Group 2) over a 3-year period (2016– 2018). Overall, 17,414 older adults visited the ED, 60 died in the ED, and 400 died within 72 hours after ED disposition and admitted to in-hospital ward. In total, 200 patients were randomly selected; of these, 15 were excluded.Results: Of the remaining 185 patients enrolled, 161/185 (87%) met the PC criteria and 60/161 (37.3%) were missed opportunities for PC planning. Group 1, had thirty patients, and 8 of those 30 (27%) were missed opportunities for PC planning. Group 2, 131/161 (81.4%), died within 72 hours, and there were 52 missed opportunities (39.7%) of ED PC planning. By comorbidity (Group 2), providers considered PC planning most often for cancer patients (PC: 41.8%; missed opportunities: 15.4%; p = 0.001) and there were more missed opportunities for PC planning among those with ischemic heart disease (PC: 19.0%; missed opportunities: 36.5%; p = 0.025).Conclusion: Of the older adults who visited the ED, 87% merited palliative care; further, 37% of opportunities for PC planning were missed. Providers considered PC planning most often for cancer patients. Recognizing PC needs and initiating care in the ED can improve end-of-life quality for dying patients.Keywords: elderly patients, emergency department, palliative care

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8–12 and 13–18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people’s comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.

AbstractBackground Advance care planning (ACP) allows patients to define their goals and preferences. Spending more time at home and less time in the hospital, along with avoiding death in the hospital, are often considered desirable outcomes of palliative care (PC). In 2015, 36% of cancer patients died in the hospital and 13% died at home in Norway.Method From 2015 to 2022, this prospective controlled non-randomized intervention trial observed 144 cancer patients with or without an organized ACP conversation in primary health care and a summarizing palliative plan (ClinicalTrials.gov Identifier: NCT02170168, 23 June 2014). The patients were identified through contact with the local cancer outpatient clinic or hospital-based PC team.Results A total of 128 patients died during the observation period. Of these, 67 patients had an organized ACP conversation and summarizing palliative plan (intervention (I) group) and 61 had not (control (C) group). Dying in the hospital was significantly less common for patients in the I group compared to the C group (17.9% vs. 34.4%; X2 (1, n = 128) = 4.55, p = 0.033). There were no differences between the groups in terms of where they spent their time in the last 90 days of life (home, nursing home, or hospital). Most patients (62%) preferred to die at home. The observed differences between the groups regarding preferred and actual places of death did not reach statistical significance.Conclusion With organized ACP conversations in primary health care and a summarizing palliative plan, cancer patients died less often in the hospital in our observational study. A structured ACP approach integrating palliative care for cancer patients into primary health care can support patients´ preferences at the end of life.

Abstract Purpose Chemotherapy-induced nausea and vomiting (CINV) is a common adverse events in cancer patients and can negatively affect their quality of life (QoL). This study aimed to evaluate the clinical efficacy of an electric massage chair (EMC) for the treatment of CINV. Methods A randomized phase II cross-over trial was conducted on solid cancer patients who received moderate (MEC) to high emetogenic chemotherapy (HEC). The participants were randomly assigned to receive their first chemotherapy either on a standard bed (Group A) or in an EMC (Group B) during the infusion. The patients were then crossed over to the next cycle. CINV and QoL questionnaires were collected from the participants. Results A total of 59 patients completed the trial protocol and were included in the analysis, with 29 and 30 patients in Groups A and B, respectively. The mean INVR (Index of Nausea, Vomiting, and Retching) score in the 2nd day of the first cycle was higher in Group B (3.63 ± 5.35) than Group A (2.76 ± 4.78), but the difference was not statistically significant (p = 0.5367). The complete response rate showed little difference between the groups. Among the high-emetic risk subgroups, patients who received HEC (p = 0.04595), younger patients (p = 0.0108), and non-colorectal cancer patients (p = 0.0495) presented significantly lower CINV scores when EMC was applied. Conclusion Overall, there was no significant difference in INVR scores between standard care and EMC. Applying EMC at the first chemotherapy infusion may help preserve QoL and reduce CINV in high-risk patients. Trial registration KCT0008200, 17/02/2023, Retrospectively registered.

Abstract Palliative care is essential to global health services as it improves the quality of life of patients, their families and caregivers. The ATLANTES Global Observatory of Palliative Care (University of Navarra) was created a decade ago to promote a positive attitude towards patients with advanced illness in society and medicine. To do so, and over the past 15 years, ATLANTES has mapped palliative care data worldwide using public health, macro and comparative perspectives in different atlases. These have enabled data to be contextualised and good examples to be identified concisely and graphically. Atlases have been widely employed as advocacy tools within international institutions and ministries of health. While the aim and the perspective have remained unalterable over time, the methods and design have evolved throughout the publications from sober cartography and static infographics to big interactive data visualisation web tools. By embracing technology, ATLANTES has developed an open-access web mapping tool reuniting information from regional atlases, favouring global access to data. In 2022, matching the increasingly recognised need for robust monitoring of palliative care worldwide, ATLANTES became a WHO Collaborating Centre for the Global Monitoring of Palliative Care Development. This attempt to bridge the gap and ensure equitable care information in countries with limited palliative care access has resulted today in more accessible, self-explanatory, and visually appealing palliative care data.

Abstract Background Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. Methods For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. Results We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. Conclusions These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model.

Abstract Background This study addresses the issue of shared decision-making (SDM) in a Norwegian home-based palliative care setting. The significance of patient involvement in SDM is widely acknowledged, and many patients want to participate in decisions about care and treatment. Yet, it remains a need for more knowledge regarding the initiators and approaches of SDM in the context of home-based palliative care, particularly from the patients’ perspective. The aim of this study is to understand patients' experiences and preferences for SDM in home-based palliative care, seeking to enhance the quality of care and direct the planning of healthcare services. Methods We used a qualitative explorative design. A hermeneutic approach was employed, and data was collected through in-dept interviews with 13 patients. Results The study uncovered an overarching theme of "Navigating to reach own decisions," comprising three sub-themes: “To be trapped in life without decisions to act on”; “To surrender to others and let others deal with decisions”; “To continue to be oneself without focusing on disease and decision-making”. Conclusions The findings underscore the need for flexible, person-centered approaches in SDM, tailored to the fluctuating health literacy and changing preferences of patients in palliative care settings. Our study contributes to the understanding of SDM in palliative care by highlighting how patients navigate the balance between autonomy and reliance on HCPs. Future research should explore how healthcare systems, including HCPs’ roles in the system, can adapt to the patients’ dynamic needs, to ensuring that SDM will remain a supportive and empowering process for patients at all stages of their disease.

Abstract Background The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. Aim This study aims to gain a better understanding of palliative care clinicians’ experiences with continuous palliative sedation. Design We conducted a qualitative study based on focus group discussions. Setting/participants We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. Results An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. Conclusions Interaction with the patient’s family, uncertainty about the patient’s prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

Abstract Background The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. Objective The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. Methods Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016–2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. Results Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p = .077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p

Abstract Background Breathlessness is a prevalent symptom affecting the quality of life (QOL) of Amyotrophic Lateral Sclerosis (ALS) patients. This systematic review explored the interventions for controlling breathlessness in ALS patients, emphasizing palliative care (PALC), non-invasive ventilation (NIV), opioids, and non-pharmacological strategies. Methods A comprehensive search of PubMed, Cochrane Library, and Web of Science databases was conducted. Eligibility criteria encompassed adults with ALS or motor neuron disease experiencing breathlessness. Outcomes included QOL and symptom control. Study designs comprised qualitative studies, cohort studies, and randomized controlled trials. Results Eight studies were included, most exhibiting low bias risk, comprising one randomized controlled trial, three cohort studies, two comparative retrospective studies, and two qualitative studies (interviews). Most studies originated from Europe, with one from the United States of America. The participants totaled 3423, with ALS patients constituting 95.6%. PALC consultations significantly improved symptom assessment, advance care planning, and discussions about goals of care. NIV demonstrated efficacy in managing breathlessness, with considerations for device limitations. Opioids were effective, though predominantly studied in non-ALS patients. Non-pharmacological strategies varied in efficacy among patients. Conclusion The findings underscore the need for individualized approaches in managing breathlessness in ALS. PALC, NIV, opioids, and non-pharmacological strategies each play a role, with unique considerations. Further research, especially ALS-specific self-management studies, is warranted.

Background: In Switzerland, palliative care (PC) clinical training is well established at undergraduate and specialist postgraduate levels. However, postgraduate nonspecialist training curricula are less documented. Local Problem: A structured curriculum for nonspecialist rotation within internal medicine (IM) in specialized PC wards is lacking. Objective: To pilot two versions of a PC nonspecialist curriculum for IM residents in Swiss PC units. Methods: In the pilot phase, two curricula?short immersion (3?10 weeks, based on the University of Toronto's Internal-Medicine PC Rotation) and standard nonspecialist (11?18 weeks, based on the Canadian Society of Palliative Care Physician Competencies)?were assessed using a mixed-method online survey. One university and two nonuniversity sites participated. The analysis was descriptive. Results: Five residents and eight supervisors of five training rotations (July?October 2023) responded. Overall, curriculum quality and feasibility (content and time) received positive ratings across all groups, with high satisfaction concerning organization, educational design, learning support, climate, experience, and facilities. Nonuniversity sites were generally rated more positively than university sites. Qualitative feedback paralleled these findings, highlighting the curriculum's relevance and fit with learners' needs and suggesting potential simplifications and more personalized planning. Conclusions: Establishing short and standard duration curricula for a PC program is viable and well received by nonspecialist trainees. Future implementation should concentrate on personalized learning objectives and streamlining the content and structure of the competencies. Cooperation within various training settings (university and regional hospitals) as well as on an international level (e.g., Canada?Switzerland) may further improve the quality of the proposed training formats.