Palliative Care Framework Research Articles

Spiritual needs of family caregivers in palliative care

ObjectiveThe primary aim of this study is to elucidate the spiritual needs encountered by family members who intricately engage in the progression of illness within the palliative care framework, thus assuming the paramount responsibility of caregiving.MethodsThis study was approved by the Institutional Review Board and Ethics Committee of the University of Health Sciences İzmir Tepecik Training and Research Hospital (17/01/2022–2022/01–16). The research was designed as a prospective study. It was conducted through face-to-face, interactive interviews with family caregivers of patients admitted to the palliative care unit at Tepecik Training and Research Hospital between April 2022 and December 2022. The interviews were performed using a phenomenological approach and structured in a question-and-answer format. Data from twenty family caregivers were analyzed using thematic analysis. The questions were specifically designed to explore the psychological processes, spirituality, conceptions of God, meaning-making, and coping strategies of the family caregivers.ResultsCaregivers experienced various psychological and emotional states progressing through stages of denial, anger, and acceptance. Spirituality emerged as a critical coping mechanism providing strength and meaning amidst caregiving challenges. Caregivers’ perceptions of God varied from loving to punitive, influencing their interpretations of suffering and caregiving roles.ConclusionThis study underscores the importance of integrating spiritual support into palliative care practices. Recognizing and addressing caregivers’ spiritual needs is crucial for enhancing their well-being and improving the quality of palliative care delivery. Training healthcare professionals in spiritual care and implementing targeted interventions can effectively support family caregivers in their caregiving journey.

Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes-the EMBED-Care Framework. A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

High prevalence of severe pain is associated with low opioid availability in patients with advanced cancer: Combined database study and nationwide questionnaire survey in Japan.

Opioid availability for the palliative care of patients with advanced cancer is increasing globally. However, opioid availability remains extremely low in Japan. We investigated whether pain is appropriately controlled by low-dose opioid prescriptions in patients with advanced cancer in Japan. A web-based nationwide survey for caregivers from 2000 community comprehensive support care centers was performed in Japan to assess details about pain in the 30 days before patients died of end-stage cancer. Separately, the data for opioid prescription doses and medical services in the 90 days before the death of patients with cancer were extracted from a health insurance claim database. Responses from 1034 responders were retrieved and 665 patients were included. In total, 254 patients (38.2%) complained of severe-to-intolerable cancer-related pain. The median cumulative prescription dose of opioids in the 90 days before patient death was 311.0 mg by oral morphine equivalent doses. Multiple regression analyses across prefectures revealed that the proportion of patients with severe-to-intolerable cancer-related pain was negatively associated with the cumulative opioid consumption expressed as morphine-equivalent doses within 90 days before death. The very low availability of opioids for patients with end-stage cancer could result in high rate of severe-to-intolerable cancer-related pain patients. There were several limitations in this study, and the interpretations of the findings should be carefully. However, the increase in the absolute dose of opioids could improve the palliative care framework to the pain control levels of the global standard.

Benchmarking palliative care practices in neurooncology: a german perspective

PurposeTo benchmark palliative care practices in neurooncology centers across Germany, evaluating the variability in palliative care integration, timing, and involvement in tumor board discussions. This study aims to identify gaps in care and contribute to the discourse on optimal palliative care strategies.MethodsA survey targeting both German Cancer Society-certified and non-certified university neurooncology centers was conducted to explore palliative care frameworks and practices for neurooncological patients. The survey included questions on palliative care department availability, involvement in tumor boards, timing of palliative care integration, and use of standardized screening tools for assessing palliative burden and psycho-oncological distress.ResultsOf 57 centers contacted, 46 responded (81% response rate). Results indicate a dedicated palliative care department in 76.1% of centers, with palliative specialists participating in tumor board discussions at 34.8% of centers. Variability was noted in the initiation of palliative care, with early integration at the diagnosis stage in only 30.4% of centers. The survey highlighted a significant lack of standardized spiritual care assessments and minimal use of advanced care planning. Discrepancies were observed in the documentation and treatment of palliative care symptoms and social complaints, underscoring the need for comprehensive care approaches.ConclusionThe study highlights a diverse landscape of palliative care provision within German neurooncology centers, underscoring the need for more standardized practices and early integration of palliative care. It suggests the necessity for standardized protocols and guidelines to enhance palliative care's quality and uniformity, ultimately improving patient-centered care in neurooncology.

A Palliative Care Framework for Unmet Spiritual Needs of Patients with ALS (GP101)

A Palliative Care Framework for Unmet Spiritual Needs of Patients with ALS (GP101)

Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations

PurposePeople with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer.MethodsAn expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process.ResultsA systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations.ConclusionStandards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.

Survivorship Care for People Affected by Advanced or Metastatic Cancer: MASCC-ASCO Standards and Practice Recommendations.

People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared with those with early-stage disease or those nearing the end of life. These Multinational Association for Supportive Care in Cancer (MASCC)-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. A MASCC-ASCO expert panel was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including eight people with lived experience) across 33 countries (33% were low- to middle-resource countries) participated in the Delphi study and achieved ≥94.8% agreement for seven standards, (1) Person-Centered Care; (2) Coordinated and Integrated Care; (3) Evidence-Based and Comprehensive Care; (4) Evaluated and Communicated Care; (5) Accessible and Equitable Care; (6) Sustainable and Resourced Care; and (7) Research and Data-Driven Care, and ≥84.2% agreement across 45 practice recommendations. Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards support optimization of health outcomes and care experiences by providing guidance to stakeholders (health care professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers). Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.Additional information is available at www.mascc.org, www.asco.org/standards and www.asco.org/survivorship-guidelines.

Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.

Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners. A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model. Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work.

Realist Evaluation of Home-Based Palliative Care Programme for Non-Cancer Patients

Introduction: Disproportionately higher deaths attributed to non-cancer causes in Singapore highlight the need for palliative beyond those with cancers. The Violet Program (ViP) was developed to provide home-based palliative to non-cancer patients residing in the Eastern region of Singapore. VIP aims to (i) reduce unnecessary acute hospital utilization (ii) improve symptoms management (iii) reduce caregiver burden through caregiver support (iv) honour patient preferences better through integrated care while (v) keeping healthcare cost affordable. It is acknowledge that successful implementation and the long-term sustainability of ViP is contingent on its ability to effectively attract, grow and develop its manpower resources. However, identifying, attracting, developing, and retaining competent and engaged community-based palliative care workforce staff remains a major challenge. The aim of this study is to understand attributes of staff and contextual factors well suited for ViP and factors leading to sustainability of such a workforce
 Methods: This study was conducted in 2 phases according to realist evaluation principles. First, initial programme theories (IPT) related to sustainability of palliative care manpower were developed through a scoping review and semi-structured interviews with those who were involved in the conceptualization of ViP. IPTs were expressed in Context (C) Mechanism (M) and Outcome (O) configurations. Then, IPTs were tested using interviews with healthcare care workers (HCW) who were involved in ViP. Only CMO configurations supported by substantial evidence were elicited and refined. 
 Results: 36 HCW of varied roles were interviewed. At the HCW level, (i) familiarity with palliative care framework (ii) comfort in dealing with death (iii) passion for palliative care field (iv) exposure to palliative care during medical/nursing training and (iv) ability to self-care were found to be important attributes for ViP care team. At the institutional level, (continuous) training and provision of socio-emotional support to staff were found to contribute to retention of staff. Self-efficacy for the required tasks, empathy for affected patients/family, passion-driven motivation and dedication to go the extra mile and strong emotional resilience were found to be the key driving forces behind the sustainability of workforce for ViP for the longer term. 
 Implications: This study illustrated the applicability of using realist evaluation for assessment of context specific insights for the identification of suitable workforce and how to sustain them in the longer term. These insights can potentially be used as selection criteria for recruitment of staff for ViP and points to area for training of staff. 

From Cultural Safety to Anti-Racism: Reflections on Addressing Inequities in Palliative Care.

The purpose of palliative care is to ease the suffering of individuals with a serious and often life-limiting illness throughout the course of their disease by providing holistic care that considers the physical, spiritual, and psychosocial dimensions of health and well-being. Research shows that a palliative approach to care is cost-effective for the healthcare system and results in improved quality of life for patients and their loved ones. However, it is well-documented in the literature that structurally vulnerable populations have greater difficulty accessing equitable and culturally safe palliative care. Several domains are identified as contributing factors to the disparities seen in the literature, including systemic racism, cultural differences around death and suffering, and language barriers. Although Canada has had a national palliative care framework since 2018, ongoing issues of access and equity continue to disproportionately impact certain groups, including racially marginalized, immigrant, and low-income communities. In this commentary, successes and ongoing gaps in providing culturally safe and anti-racist palliative care are explored. In these proposed interventions, we advocate for a palliative approach to care that is grounded in equity, justice, and human rights.

Providers' Understanding of Cancer Aetiology and Supportive Features for Indigenous Palliative Cancer Care Service Provision in Kenya.

Palliative care is a fundamental component of providing people-centred health services to cancer patients. However, the primary pillars of indigenous palliative care such as provider understanding of cancer, its aetiology, and features are undocumented. We sought to understand Traditional Health Providers (THPs) understanding of cancer aetiology, and the functional features that support indigenous palliative cancer care service provision in Kenya. The study used a mixed methods cross-sectional design. A semi-structured questionnaire was administered to 193 THPs, who self-reported to manage cancer patients. The findings were enriched and validated through member checking in 6 focus group discussions and five journey mapping in-depth interviews. Despite diversity in culture and experience among the indigenous providers in Kenya, their description of cancer etiology and their management practices and primary goal were similar. Cancer was consistently described as a deadly life-deforming disease by 61.1% of THPs (n = 118/193) and attributed to chemicals and toxins in the body 41.5% (n = 80). The indigenous palliative-care system was reported to be characterized by five tiered levels of care, diversity in expertise and experience, shared and consultative process (60%) and family involvement in medical decision (59.5%). Herbal regimen (60.1%) was found to be the cornerstone of informal palliative care blended with nutrition management 78.2% (n = 151), lifestyle changes 63.7% (n = 123) and counseling services 55.9% (n = 108). Payments for service were arbitrarily made in cash or in kind. The features of indigenous palliative care services are informed by the providers' distinctive cultural terms and descriptions of cancer and cancer aetiology. Shared and consultative protocols, regimen exchange, referral to cascaded care, and caregiver involvement were all important palliative-care clues to saving and enhancing lives. The features provide context for development of indigenous palliative care framework, engagement of policy makers, and promotion of culturally-inclusive indigenous palliative care model for adoption.

Improving palliative care for people with intellectual disability: a self-assessment of policies, practices and competencies in care services

BackgroundProviding care for ageing and vulnerable people with intellectual disability (ID) is challenging, and professionals working in ID care often have limited experience in palliative care. The current study provides insight into palliative care practices in ID care services and competencies of professionals and identifies ways to improve palliative care for people with ID.MethodsFor this study ten services in the Netherlands were recruited that provide care for people with mild to profound ID. Professionals in each of these services conducted a self-assessment of their palliative care policies and practices based on nine core element of palliative care described in the Dutch Quality Framework for Palliative Care. The self-assessment included a medical file review of a total of 100 people with ID who died non-suddenly. In addition, 424 professionals from the services returned a digital questionnaire on palliative care competencies and training needs.ResultsThe self-assessments showed that individual care plans were recorded for people with ID and that multidisciplinary teams provided physical, psychological, social and spiritual care. However, other core elements of palliative care, such as cooperation with other organisations and expertise in palliative care, were less present in ID care services. Only half of the services collaborated with regional organisations in palliative care, and most services listed no requirements for the palliative care skills of their professionals. The questionnaire showed that almost 10% of the professionals reported that they were not at all competent in providing palliative care, and 74% felt that they needed training in palliative care. Reported areas for improvement in the provision of palliative care were increasing the quality of palliative care, improving the expertise of professionals and identifying palliative care needs earlier.ConclusionsTo improve palliative care in ID care services changes are required both in competencies of professionals, and organisational policies and practices. Services should enhance awareness about palliative care for people with ID, strengthen collaboration with palliative care services, and offer training or support for professionals in assessing and meeting the needs of people with ID at the end of life.

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope.

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.

Dignity in Action in the Home Hospice: The Narrative Selection of a Multidisciplinary Staff.

Home hospice (HH) is a palliative care framework that is becoming more and more common in Western countries. HH staff face unique challenges, resulting mainly from their multiple clients and the provision of care in a private territory. Despite the recognized role of professionals in preserving end-of-life (EOL) dignity, how HH staff conceive of EOL dignity has remained unexplored. To fill this lacuna, we invited the multidisciplinary staff of an Israeli HH to recount unguided narratives of dignity and indignity in the HH. We analyzed the mechanisms of narrative selection in each story and in the entire dataset, particularly regarding two dimensions of dignity: situation-whether the recounted cases present dignity, indignity, or both; and relations-who provides (in)dignity to whom. The analysis revealed four interconnected end-points: HH is a dignity-providing framework; HH staff provide and promote dignity; HH dignity as relations and communication; and HH dignity as a holistic process whose boundaries are expanded and blurred, both spatially and temporally. The differences between these and other findings on healthcare professionals' perspectives of EOL dignity highlight the uniqueness of HH staff, and possibly the distinctiveness of the Israeli case with its traditional familial values. Importantly, the findings were generated due to the narrative paradigm guiding the study. The unique attributes of the narrative text enabled us to capture the dynamic temporal nature of dignity-in-action, as embedded in the staff's daily practice. Implications for training professionals to preserve EOL dignity in HH and other EOL care frameworks are discussed.

Commentary: Goldilocks Revisited: Do We Need More Practice Competencies in Pediatric Psychology?

The publication of the Thompson et al. competencies framework for pediatric palliative care marks a third set of practice guidelines published. There is essential tension between specialist training in clinical child psychology (our "home" discipline) leading to further subspecialty training in pediatric psychology, the desired balance between the two, and impact on teaching, training, and patient care. A purpose of this invited commentary is to stimulate further awareness and subsequent discussion of the integration of more narrow practice skills in a growing and developing field, as the tendency toward greater specialization and siloed practice increases.

Building an action plan to tackle palliative care inequality through multi-stakeholder platforms.

To achieve universal care and overcome existing barriers, the most effective strategy is to devise an action plan that incorporates palliative care into primary health care (PHC), as recommended by the World Health Organization's (WHO) Astana Declaration. In Colombia, a country with an upper-middle-income status, about 128,000 individuals experience severe health-related suffering (SHS) that necessitates palliative care. Although the country's healthcare system has made steady strides in the integration and development of palliative care, there is still no national plan in place for palliative care. Build up Colombia's palliative care plan through stakeholder consensus. Based on the participatory action research method and the multi-stakeholder platforms model, this study convened 142 stakeholders from different levels of the health system (patient representatives, journalists, health professionals, government entities, insurance companies, universities, and drug regulatory authorities). The national plan aims to achieve its objectives through a series of strategic actions. These include integrating and diversifying palliative care services, improving access to opioids, increasing palliative care education, promoting community-based palliative care programs, securing funding, and implementing a regulatory framework for palliative care by public policymakers. The national palliative care is an alliance that aims to reduce palliative care inequity in Colombia by 2026 by empowering stakeholders nationwide to collaborate around specific goals and objectives.

Regulations on palliative sedation: an international survey across eight European countries.

Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines.

Is progress being made on Canada’s palliative care framework and action plan? A survey of stakeholder perspectives

BackgroundThe legalization of Medical Assistance in Dying in Canada in 2016 provided new impetus for improving palliative care. This commitment to improvement included the development of a National Palliative Care Framework and Action Plan. The purpose of this study was to understand the progress made in palliative care since 2016 from the perspective of persons working and volunteering in palliative care and compare geographic differences.MethodsA digital survey was developed from goals identified in Canada’s Palliative Care Framework and Action Plan and administered online using Qualtrics. Participants were recruited through national palliative care organizations. The survey included both quantitative survey items designed to evaluate improvements across 5 domains and 29 items and included open-ended questions about impacts, innovations, and ongoing challenges. Descriptive statistics were generated for survey domains, items, and demographic variables. Geographic differences were compared using Independent-Samples Kruskal–Wallis test. Qualitative data was analyzed inductively into themes.ResultsOne hundred fifty surveys met inclusion criteria and were analysed. Overall, the most improvement was reported in palliative care education and the least improvement was reported in support for family caregivers. Items on which respondents reported the most improvement included healthcare provider education in palliative care, advance care planning, and use of technology. Items on which respondents reported the least improvement were respite for family caregivers, access to bereavement services, and in-home support for family caregivers. Notably, rural participants reported more statistically significant improvements in the domains of education, access, and research and data collection than their urban counterparts. However, rural participants reported less improvement in places to die when home is not preferable. The COVID-19 pandemic was a significant contributor to these perceived improvements and ongoing challenges.ConclusionCanada’s Framework and Action Plan sets out a roadmap for improving palliative care in Canada. Participants in this survey noted significant improvements in key areas, a notable accomplishment amidst the effects of the COVID-19 pandemic. Some improvements were a result of greater use of distance technology. Further leveraging these improvements will make an important contribution to solving some of the rural and remote palliative care issues that have arisen from Canada’s unique geography.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Review of European Guidelines on Palliative Sedation: A Foundation for the Updating of the European Association for Palliative Care Framework.

In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making process. Several weaknesses were highlighted, particularly in areas of rigor of development and applicability. The identified points of debate and methodological weaknesses should be considered in any update or revision of the guidelines analyzed to improve the quality of their content and the applicability of their recommendations.