The International Gynecologic Cancer Society consensus statement on palliative care.

At the International Gynecologic Cancer Society (IGCS) Global Meeting in 2023 held in Seoul, South Korea, we held a Presidential Plenary Session focusing on palliative care (https://www.youtube.com/watch?v=TBDIoQ50xgI). We hereby reaffirm the significance of this session, express the Palliative Care Declaration made by the IGCS, and describe our action plan for the future.

The Third Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to unify the global palliative care community.

OBJECTIVES: On 3-4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: "healing hearts and communities." We describe lessons learned in anticipation of the fourth annual conference to be held on 3-4 October 2023. METHODS: Description of the third annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event. SIGNIFICANCE OF RESULTS: The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.

Supporting the Bereaved in the COVID-19 Era: A Scoping Review of Interventions.

People whose family member(s) friend(s) have died from COVID-19 or other causes have been deeply affected by the physical and social restrictions imposed during the pandemic. These limitations have affected end-of-life care and support for the bereaved. The purpose of this review is to identify: the published studies of evaluated programs about interventions for people who have experienced bereavement during the COVID-19 pandemic, and to develop recommendations for researchers and policy makers. Using scoping review methodology, a literature review was undertaken for articles published from January 1, 2020 through February 28, 2023 to identify interventions shown to be beneficial to people who have experienced the death of loved ones during the COVID-19 pandemic. The search yielded 1588 articles of which three studies met the criteria of utilizing a pre and post-test design with only one of these, a randomized controlled trial. The interventions included in this review demonstrate preliminary efficacy.

The 2nd Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to support equity in palliative care access.

OBJECTIVE: On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022. METHODS: Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines. SIGNIFICANCE OF RESULTS: The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

The inaugural United States World Hospice and Palliative Care Day Celebration: A virtual coming together.

OBJECTIVE: On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5-6, 2021. METHODS: Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses. RESULTS: The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development. SIGNIFICANCE OF RESULTS: Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.

First Medicare Demonstration of Concurrent Provision of Curative and Hospice Services for End-of-Life Care.

Hospice developed in the United States in the 1970s as a way to address unmet needs for end-of-life care: support for pain and symptom management provided in the location and manner that the patient and family prefer. In Europe and Australia, hospice is available from the time of diagnosis of an advanced life-limiting illness onward, but in the United States, the Medicare hospice benefit restricts eligibility for these services to patients who no longer receive curative treatment. We provide background and analysis of the first Medicare hospice demonstration in 35 years that will test the concurrent provision of curative and hospice services for terminally ill individuals with a life expectancy of six months or less. This demonstration is a harbinger of potential policy changes to hospice and palliative care in the United States that could reduce barriers to end-of-life care that aligns with patient and family preferences as the demand for care increases with an aging population.

Alternative routes to oral opioid administration in palliative care: a review and clinical summary.

OBJECTIVE: A major goal of palliative care is to provide comfort, and pain is one of the most common causes of treatable suffering in patients with advanced disease. Opioids are indispensable for pain management in palliative care and can usually be provided by the oral route, which is safe, effective, and of lowest cost in most cases. As patients near the end of life, however, the need for alternate routes of medication increases with up to 70% of patients requiring a nonoral route for opioid administration. In order to optimize patient care, it is imperative that clinicians understand existing available options of opioid administration and their respective advantages and disadvantages. METHODS: We performed a literature review to describe the most commonly used and available routes that can substitute for oral opioid therapy and to provide a summary of factors affecting choice of opioid for use in palliative care in terms of benefits, indications, cautions, and general considerations. RESULTS: Clinical circumstances will largely dictate appropriateness of the route selected. When the oral route is unavailable, subcutaneous, intravenous, and enteral routes are preferred in the palliative care population. The evidence supporting sublingual, buccal, rectal, and transdermal gel routes is mixed. CONCLUSIONS: This review is not designed to be a critical appraisal of the quality of current evidence; rather, it is a summation of that evidence and of current clinical practices regarding alternate routes of opioid administration. In doing so, the overarching goal of this review is to support more informed clinical decision making.

Evaluation of the performance improvement CME paradigm for pain management in the long-term care setting.

OBJECTIVE: A performance improvement continuing medical education (PI CME) activity was designed to assist clinicians with accurately identifying and appropriately managing persistent pain in long-term care facility (LTCF) residents. DESIGN: Volunteer LTCFs participated in a three-stage PI CME model consisting of: 1) baseline assessment, 2) implementation of practice improvement interventions, and 3) reassessment. Expert faculty chose performance measures and interventions for the activity. A champion was designated ateach LTCF to collect resident charts and enter data into an online database. SETTING: Eight LTCFs located across the United States participated in the activity. PATIENTS: Fifty resident charts were randomly selected by each LTCF champion (25 for stage 1 and 25 for stage 3); a total of 350 charts were reviewed. INTERVENTIONS: In addition to a toolkit containing numerous performance improvement resources, an in-service meeting led by an expert faculty member was conducted at each LTCF. OUTCOME MEASURES: Stage 3 data were collected 6 weeks after implementation of interventions and compared with stage 1 baseline data to measure change in performance. RESULTS: Aggregate data collected from seven LTCFs completing the PI CME activity through stage 3 revealed improvements from baseline in four of five performance measures. CONCLUSIONS: This CME activity allowed for collection of data demonstrating performance improvement in persistent pain management. The tools used as part of the intervention (available at http://www.achlpicme.org/LTC/toolkit) may help other clinicians enhance their management of LTCF residents with persistent pain.

Creation of Minimum Standard Tool for Palliative Care in India and Self-evaluation of Palliative Care Programs Using It.

BACKGROUND: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. AIMS: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. MATERIALS AND METHODS: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. RESULTS: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. CONCLUSIONS: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.

Investing in bereavement care as a public health priority.

Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient's death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority.

Impact of Community Palliative Care on Quality of Life among Cancer Patients in Bangladesh.

Cancer, a leading cause of mortality worldwide, is often diagnosed at late stages in low- and middle-income countries, resulting in preventable suffering. When added to standard oncological care, palliative care may improve the quality of life (QOL) of these patients. A longitudinal observational study was conducted from January 2020 to December 2021. Thirty-nine cancer patients were enrolled in the Compassionate Narayanganj community palliative care group (NPC), where they received comprehensive palliative care in addition to oncological care. Thirty-one patients from the Dept. of Oncology (DO) at BSMMU received standard oncological care. In contrast to the DO group, the NPC group had a higher percentage of female patients, was older, and had slightly higher levels of education. At 10 to 14 weeks follow-up, a significant improvement in overall QOL was observed in the NPC group (p = 0.007), as well as in the psychological (p = 0.003), social (p = 0.002), and environmental domains (p = 0.15). Among the secondary outcomes, the palliative care group had reduced disability and neuropathic pain scores. Additionally, there were statistically significant reductions in pain, drowsiness, and shortness of breath, as well as an improvement in general wellbeing, based on the results of the Edmonton Symptom Assessment Scale-Revised. At the community level in Bangladesh, increased access to palliative care may improve cancer patient outcomes such as QOL and symptom burden.

Challenges for Developing Palliative Care Services in Resource- Limited Settings of Kazakhstan.

Background: Approximately 40 million people in need of palliative care worldwide, while 80% of them live in low- and middle-income countries. Kazakhstan, a low-to middle-income country with a reforming healthcare system, is committed to improving quality and accessibility of care for its 100,000 terminal patients in need of palliative care. Policy Options and Recommendations: To join the group of countries where palliative care is available, accessible, and affordable, Kazakhstan must integrate palliative services into the mainstream healthcare system at all levels, from primary healthcare to hospices, and from major cities to remote villages. Based on the evidence thoroughly collected directly from the Ministry of Health, authors propose a feasible set of recommendations regarding palliative policy, pain relief, infrastructure, workforce, and education, which could be implemented in LMICs beyond Kazakhstan. Conclusion: This study presents an analysis of challenges, recent developments, and needs of palliative care in Kazakhstan, including funding, policy, workforce, education, and infrastructure, providing an evidence base and recommendations for future development of palliative care in Kazakhstan and in other LMICs.

Cross Country Comparison of Expert Assessments of the Quality of Death and Dying 2021.

CONTEXT: Few efforts have attempted to quantify how well countries deliver end-of-life (EOL) care. OBJECTIVES: To score, grade, and rank countries (and Hong Kong and Taiwan) on the quality of EOL care based on assessments from country experts using a novel preference-based scoring algorithm. METHODS: We fielded a survey to country experts around the world, asking them to assess the performance of their country on 13 key indicators of EOL care. Results were combined with preference weights from caregiver-proxies of recently deceased patients to generate a preference-weighted summary score. The scores were then converted to grades (from A-F) and a ranking was created for all included countries. RESULTS: The final sample included responses from 181 experts representing 81 countries with 2 or more experts reporting. The 6 countries who received the highest assessment scores and a grade of A were United Kingdom, Ireland, Taiwan, Australia, Republic of Korea, and Costa Rica. Only Costa Rica (upper middle) is not a high income country. Not until Uganda (ranked 31st) does a low-income country appear on the ranking. Based on the assessment scores, twenty-one countries received a failing grade, with only two - Czech Republic (66th), and Portugal (75th) - being high income countries. CONCLUSION: This study provides an example of how a preference-based scoring algorithm and input from key stakeholders can be used to assess EOL health system performance. Results highlight the large disparities in assessments of the quality of EOL care across countries, and especially between the highest income countries and others.

The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care.

Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare systems throughout the world. Although the value of life-affirming palliative care (PC) has been shown across many domains, funding and acceptance of palliative care teams have been variable: some hospital systems have free-standing, dedicated interdisciplinary teams while, in many instances, palliative care services are provided "pro bono" by individuals with a special interest in the discipline, who provide PC in addition to other responsibilities. In this article, we hope to highlight some of the observations on the early effects of the COVID-19 pandemic on the provision of PC in children.

Estimating the Number of Patients Receiving Specialized Palliative Care Globally in 2017.

CONTEXT: Palliative care is an emerging health-care service essential for every health-care system. Information on the current status of palliative care service delivery is needed to understand the gap between need for palliative care and current capacity to deliver. OBJECTIVES: To estimate the number of providers delivering palliative care worldwide and the patients they served in 2017. METHODS: Estimates were obtained from a sample of countries from each World Bank income group using typical case purposive sampling methods. Reliable data from the United States and eight additional countries were used for the high-income group. For low- and middle-income countries (LMICs), to determine an estimate of the number of patients served, 30 countries representative of palliative care service delivery in each region and income group were surveyed. RESULTS: Results from the mapping levels of palliative care development survey identified a total of approximately 25,000 palliative care service delivery teams globally. The total estimate of patients served in 2017 was approximately seven million. CONCLUSION: Significant disparities in palliative care access exist both by region and income group. The European and Pan-American regions had most while the Eastern Mediterranean, Southeast Asian, and African regions had least. Much more needs to be done to develop and deliver palliative care in LMICs where 80% of the need for palliative care exists. With about 70% of operating palliative care services in high-income countries and only 30% in LMICs, a major effort to develop palliative care in these settings is urgently needed.

Program evaluation: improving the quality of life of older people in an urban slum in Bangladesh.

AIMS: The study aimed to explore the quality and impact of care provided through an innovative palliative care project to improve the quality of life of older people in an urban informal settlement in Bangladesh. METHODS: Center for Palliative Care (CPC) at Bangabandhu Sheikh Mujib Medical University (BSMMU), Dhaka, in collaboration with the Worldwide Hospice Palliative Care Alliance (WHPCA) has been operating this community project since 2015. A cross-sectional observational design was used in this program evaluation study. A total of 594 people received services including 227 patients (Group-1) receiving regular and intensive palliative care and 367 patients with less intense needs (Group-2) receiving relatively less support based on need. In addition, current group-1 patients (total 114) and a matched cohort of 58 group-2 patients were interviewed with an experience of care survey questionnaire. Baseline and demographic data were presented in tables. The Z-test was used to measure mean statistical differences between two groups. RESULTS: Multiple comorbidities were common. Pain was the most frequently noted physical symptom along with anxiety, sadness, and depression as common psychological concerns. Compassionate palliative care for the older people had significant (p < 0.05) impact on psycho-social and spiritual care, caregiver training, responding to emergencies, and reduction of out of pocket healthcare expenditure among the intensive intervention group. CONCLUSION: Using a community-based approach following this model may play a significant part in expansion of palliative care throughout Bangladesh to meet the huge need and scarcity of such services.

The threat of the COVID-19 pandemic on reversing global life-saving gains in the survival of childhood cancer: a call for collaborative action from SIOP, IPSO, PROS, WCC, CCI, St Jude Global, UICC and WHPCA.

The COVID-19 pandemic poses an unprecedented health crisis in all socio-economic regions across the globe. While the pandemic has had a profound impact on access to and delivery of health care by all services, it has been particularly disruptive for the care of patients with life-threatening noncommunicable diseases (NCDs) such as the treatment of children and young people with cancer. The reduction in child mortality from preventable causes over the last 50 years has seen childhood cancer emerge as a major unmet health care need. Whilst survival rates of 85% have been achieved in high income countries, this has not yet been translated into similar outcomes for children with cancer in resource-limited settings where survival averages 30%. Launched in 2018, by the World Health Organization (WHO), the Global Initiative for Childhood Cancer (GICC) is a pivotal effort by the international community to achieve at least 60% survival for children with cancer by 2030. The WHO GICC is already making an impact in many countries but the disruption of cancer care during the COVID-19 pandemic threatens to set back this global effort to improve the outcome for children with cancer, wherever they may live. As representatives of the global community committed to fostering the goals of the GICC, we applaud the WHO response to the COVID-19 pandemic, in particular we support the WHO's call to ensure the needs of patients with life threatening NCDs including cancer are not compromised during the pandemic. Here, as collaborative partners in the GICC, we highlight specific areas of focus that need to be addressed to ensure the immediate care of children and adolescents with cancer is not disrupted during the pandemic; and measures to sustain the development of cancer care so the long-term goals of the GICC are not lost during this global health crisis.

Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy".

Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700 hospice programs. We use an illustrative case of a palliative care hospitalization and intervention for a middle-aged man with severe pain from spinal metastases to discuss 4 key questions that a primary care physician faces in caring for the seriously ill patient with difficult symptom management: (1) Should I refer a patient to a hospital-based palliative care team or to hospice services for difficult symptom management? (2) If the patient is referred to a hospital-based palliative care team, what should I, as the primary care physician, expect? (3) When should I refer to hospice services a patient initially referred to a hospital-based palliative care team? and (4) How can I choose a hospice program that will provide competent, coordinated, and compassionate patient- and family-centered care? Primary care physicians now may choose among hospice programs, and the programs may vary in their quality of care. Validated tools to measure patient and family perceptions of the quality of hospice care are now available but progress in defining and measuring the quality of hospice care is still needed before actionable information will be available to guide the choice of hospice programs for physicians and consumers.

Hospice care for patients with dementia: does volume make a difference?

Using the repository of 2005 Family Evaluation of Hospice Care data, this study examined whether bereaved family members report higher quality of care when hospices care for greater vs. lesser proportions of dementia patients. This organization-level analysis included 396 hospices meeting the study's eligibility criteria. Using hospice percentages of the "proportion of decedents with dementia," categories representing the lower three, the fourth and highest quintile values were created (i.e., <13%, > or =13%-19%, and > or =19%). Analyses were stratified by for-profit vs. not-for-profit because preliminary analyses showed differential associations by profit status. In for-profit hospices, hospices with the highest vs. lowest proportion of dementia patients (> or =19% vs. <13%) had significantly lower unmet pain needs (-1.7%, 95% confidence interval [CI] -3.1%, -0.2%). However, for both profit groups, caring for > or =19% dementia decedents (vs. <13%) was associated with a lower proportion of "excellent" care ratings (-2.3%, 95% CI -4.5%, -0.2%). Statistically significant associations between higher volume and better ratings were not observed for the remaining (six) outcomes, although this trend was found more among for-profit hospices. Thus, profit status appears to modify the association between volume of dementia care and care ratings. Further study is needed to understand the nonintuitive negative association between higher volume and lower satisfaction. This study emphasizes the need for examination of quality outcomes by profit status.