Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

CONTEXT: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. OBJECTIVES: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. METHODS AND RESULTS: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. CONCLUSIONS: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

Mapping Palliative Care Availability and Accessibility: A First Step to Eradicating Access Deserts in the Low- and Middle-Income Settings.

OBJECTIVE: Palliative care is unavailable and/or inaccessible for the majority of people in low- and middle-income countries (LMIC). This study aims to determine the availability and accessibility of palliative care services in Malaysia, a middle-income country that has made good progress toward universal health coverage (UHC). METHOD: Publicly available data, and databases of registered palliative care services were obtained from governmental and nongovernmental sources. Google Maps and Rome2Rio web-based applications were used to assess geographical disparities by estimating the median distance, travel time, and travel costs from every Malaysian district to the closest palliative care service. RESULTS: Substantial variations in availability, components, and accessibility (distance, time, and cost to access care) of palliative care services were observed. In the highly developed Central Region of Peninsular Malaysia, specialty care was available within 4 km whereas in the less-developed East Coast of Peninsular Malaysia, patients had to travel approximately 46 km. In the predominantly rural East Malaysia, basic palliative care services were 82 km away and, in some instances, where land connectivity was scarce, it took 2.5 h to access care via boat. The corresponding median travel costs were USD2 (RM9) and USD23 (RM114) in Peninsular Malaysia and East Malaysia. CONCLUSION: The stark urban-rural divide in the availability and accessibility of palliative care services even in a setting that has made good progress toward UHC highlights the urgent need for decentralization of palliative care in the LMICs. This may be achieved by capacity building and task shifting in primary care and community settings.

Applying Key Lessons from the Hospice and Palliative Care Movement to Inform Psychedelic-Assisted Therapy.

Background: Psychedelic-assisted therapy (PAT) has re-emerged as a promising intervention for addressing mental health conditions and existential concerns. Despite growing enthusiasm, PAT may be difficult to integrate into mainstream health systems. The rich sacramental traditions of psychedelics, their centering of the human experience, proposed substrates of action, context-dependent outcomes, and highly relational method of therapy all challenge dominant reductionistic approaches of the biomedical model. Hospice and palliative care are well established as holistic evidence-based standards of care, yet they began as a radical grassroots movement. Hospice and palliative care models may offer unique insights to support the growing field of PAT. Purpose: The intention of this commentary is to articulate the deep synergies between hospice and palliative care and PAT, with the intention of fostering interdisciplinary dialogue that may aid in implementation of human-centered high-quality PAT. Conclusions: Various aspects of hospice and palliative care models were identified and explored, which may support the implementation of human-centered high-quality PAT at scale. These include a focus on truly interdisciplinary care, applying a holistic lens to health and illness, bearing witness to suffering and healing, customized care, centering human relationships, decentralized models of care, generalist/specialist competencies, fostering spirituality, organizing as a social moment around shared goals, and growth from grassroots community organizations to mature care systems. Although hospice and palliative care can offer practical lessons for scaling human-centered experiential therapies, PAT, with its radical centering of meaning-making and relationship in the healing process, may also mutually innovate the fields of hospice and palliative care.

Adaptation and psychometric testing of the end-of-life professional caregiver survey in Jamaica.

BACKGROUND: Using a validated instrument to measure palliative care (PC) educational needs of health professionals is an important step in understanding how best to educate a well-versed PC workforce within a national health system. The End-of-life Professional Caregiver Survey (EPCS) was developed to measure U.S. interprofessional PC educational needs and has been validated for use in Brazil and China. As part of a larger research project, this study aimed to culturally adapt and psychometrically test the EPCS among physicians, nurses, and social workers practicing in Jamaica. METHODS: Face validation involved expert review of the EPCS with recommendations for linguistic item modifications. Content validation was carried out by six Jamaica-based experts who completed a formal content validity index (CVI) for each EPCS item to ascertain relevancy. Health professionals practicing in Jamaica (n = 180) were recruited using convenience and snowball sampling to complete the updated 25-item EPCS (EPCS-J). Internal consistency reliability was assessed using Cronbach's [Formula: see text] coefficient and McDonald's [Formula: see text]. Construct validity was examined through confirmatory factor analysis (CFA) and exploratory factor analysis (EFA). RESULTS: Content validation led to elimination of three EPCS items based on a CVI < 0.78. Cronbach's [Formula: see text] ranged from 0.83 to 0.91 and McDonald's [Formula: see text] ranged from 0.73 to 0.85 across EPCS-J subscales indicating good internal consistency reliability. The corrected item-total correlation for each EPCS-J item was > 0.30 suggesting good reliability. The CFA demonstrated a three-factor model with acceptable fit indices (RMSEA = 0.08, CFI = 0.88, SRMR = 0.06). The EFA determined a three-factor model had the best model fit, with four items moved into the effective patient care subscale from the other two EPCS-J subscales based on factor loading. CONCLUSIONS: The psychometric properties of the EPCS-J resulted in acceptable levels of reliability and validity indicating that this instrument is suitable for use in measuring interprofessional PC educational needs in Jamaica.

Project ECHO in the Caribbean: Building a Virtual Community for Palliative Care Education Needs.

Despite a growing need, palliative care education tools tailored to providers in the Caribbean remain extremely limited. We conducted a mixed methods analysis of the first Project ECHO (Extension for Community Healthcare Outcomes) model adapted for palliative care providers in the Caribbean. These virtual, case-based sessions were held to enhance regional palliative care providers' knowledge of symptom management, communication, and psychosocial support. Participants reported strong satisfaction and significant impacts on their practices. They described significant improvements in their sense of community (1.23, P ≤ 0.01), confidence in palliative care skills (0.64, P ≤ 0.01), and knowledge for each monthly topic. Our findings suggest that the ECHO model has been successfully adapted to the needs of palliative care providers in the Caribbean, though further capacity building, public policy, and research are needed to broaden access to palliative care across the region.

Implementing Palliative Care Training in the Caribbean: Development and Assessment of a Basic Palliative Care Training Course in Jamaica.

CONTEXT: The majority of people in need of palliative care (PC) in low- and middle-income countries lack access to it and suffer unnecessarily as a consequence. This unmet need is due, in part, to the lack of trained PC providers. OBJECTIVES: This study aims to assess the effects of regional training in PC for doctors, nurses, and pharmacists in the Caribbean through assessment of participant satisfaction, anticipated course impact on participants' clinical practice, barriers to changing practice, and perceived course impact on achievement of key PC milestones. METHODS: We created and taught a course in basic PC for clinicians from the Caribbean region and collected and analyzed postcourse quantitative and qualitative data on satisfaction and expected impact. RESULTS: Eighty-three clinicians from five Caribbean countries participated in this workshop. Thirty participants completed the post-course survey. One hundred percent of these participants ranked the quality of the course as "very high quality" or "high quality." The majority of participants anticipated changing their practice as a result of this course. Several barriers were reported, including lack of formal PC training in participants' home countries. Results of participants' retrospective pre- and postcourse self-assessment for achievement of key PC milestones showed a statistically significant mean increase of at least one point on the seven-point Likert scale for each milestone. CONCLUSION: Overall satisfaction with the course was high, and self-assessed competency in PC improved. These data suggest that an intensive training over several days is an effective format for increasing providers' perceived efficacy in delivering PC.

Cervical Cancer-Associated Suffering: Estimating the Palliative Care Needs of a Highly Vulnerable Population.

PURPOSE: To enable design of optimum palliative care for women with cervical cancer, we studied the most common types of suffering and their severity, prevalence, and duration. METHODS: We first reviewed the literature on the major types, severity, prevalence, and duration of suffering associated with cervical cancer. We then conducted a modified Delphi process with experts in cervical cancer care to supplement the literature. For each type of suffering, we distinguished between decedents (those who die from cervical cancer in a given year) and nondecedents (those who have cervical cancer in a given year but do not die). By applying the suffering prevalence and duration estimates to the number of decedents, nondecedents, and family caregivers in 2017, we were able to estimate their palliative care needs and the intensity of palliative care needed to respond adequately to this suffering. RESULTS: There is a high prevalence among decedents of moderate or severe pain (84%), vaginal discharge (66%), vaginal bleeding (61%), and loss of faith (31%). Among both decedents and nondecedents, there is a high prevalence of clinically significant anxiety (63% and 50%, respectively), depressed mood (52% and 38%, respectively), and sexual dysfunction (87% and 83%, respectively). Moderate or severe financial distress is prevalent among decedents, nondecedents, and family caregivers (84%, 74%, and 66%, respectively). More than 40% of decedents and nondecedents are abandoned by their intimate partners. Most patients experience some combination of moderate or severe physical, psychological, social, and spiritual suffering. In total, 258,649 decedents and 2,558,857 nondecedents needed palliative care in 2017, approximately 85% of whom were in low- and middle-income countries where palliative care is rarely accessible. CONCLUSION: Among women with advanced cervical cancer, suffering is highly prevalent and often severe and multifaceted.

Essential Package of Palliative Care for Women With Cervical Cancer: Responding to the Suffering of a Highly Vulnerable Population.

Women with cervical cancer, especially those with advanced disease, appear to experience suffering that is more prevalent, complex, and severe than that caused by other cancers and serious illnesses, and approximately 85% live in low- and middle-income countries where palliative care is rarely accessible. To respond to the highly prevalent and extreme suffering in this vulnerable population, we convened a group of experienced experts in all aspects of care for women with cervical cancer, and from countries of all income levels, to create an essential package of palliative care for cervical cancer (EPPCCC). The EPPCCC consists of a set of interventions, medicines, simple equipment, social supports, and human resources, and is designed to be safe and effective for preventing and relieving all types of suffering associated with cervical cancer. It includes only inexpensive and readily available medicines and equipment, and its use requires only basic training. Thus, the EPPCCC can and should be made accessible everywhere, including for the rural poor. We provide guidance for integrating the EPPCCC into gynecologic and oncologic care at all levels of health care systems, and into primary care, in countries of all income levels.

Augmented Package of Palliative Care for Women With Cervical Cancer: Responding to Refractory Suffering.

The essential package of palliative care for cervical cancer (EPPCCC), described elsewhere, is designed to be safe and effective for preventing and relieving most suffering associated with cervical cancer and universally accessible. However, it appears that women with cervical cancer, more frequently than patients with other cancers, experience various types of suffering that are refractory to basic palliative care such as what can be provided with the EPPCCC. In particular, relief of refractory pain, vomiting because of bowel obstruction, bleeding, and psychosocial suffering may require additional expertise, medicines, or equipment. Therefore, we convened a group of experienced experts in all aspects of care for women with cervical cancer, and from countries of all income levels, to create an augmented package of palliative care for cervical cancer with which even suffering refractory to the EPPCCC often can be relieved. The package consists of medicines, radiotherapy, surgical procedures, and psycho-oncologic therapies that require advanced or specialized training. Each item in this package should be made accessible whenever the necessary resources and expertise are available.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

The central role of provider training in implementing resource-stratified guidelines for palliative care in low-income and middle-income countries: Lessons from the Jamaica Cancer Care and Research Institute in the Caribbean and Universidad Católica in Latin America.

Individuals in low-income and middle-income countries (LMICs) account for approximately two-thirds of cancer deaths worldwide, and the vast majority of these deaths occur without access to essential palliative care (PC). Although resource-stratified guidelines are being developed that take into account the actual resources available within a given country, and several components of PC are available within health care systems, PC will never improve without a trained workforce. The design and implementation of PC provider training programs is the lynchpin for ensuring that all seriously ill patients have access to quality PC services. Building on the Breast Health Global Initiative's resource-stratified recommendations for provider education in PC, the authors report on efforts by the Jamaica Cancer Care and Research Institute in the Caribbean and the Universidad Católica in successfully developing and implementing PC training programs in the Caribbean and Latin America, respectively. Key aspects of this approach include: 1) fostering strategic academic partnerships to bring additional expertise and support to the effort; 2) careful adaptation of the curriculum to the local context and culture; 3) early identification of feasible metrics to facilitate program evaluation and future outcomes research; and 4) designing PC training programs to meet local health system needs.

Advancing cancer care and prevention in the Caribbean: a survey of strategies for the region.

Cancer is now the second leading cause of death in the Caribbean. Despite this growing burden, many Caribbean small island nations have health systems that struggle to provide optimal cancer care for their populations. In this Series paper, we identify several promising strategies to improve cancer prevention and treatment that have emerged across small island nations that are part of the Caribbean Community. These strategies include the establishment of a Caribbean cancer registry hub, the development of resource-appropriate clinical guidelines, innovations in delivering specialty oncology services (eg, paediatric oncology and palliative care), improving access to opioids, and developing regional training capacity in palliative medicine. These developments emphasise the crucial role of public-private partnerships in improving health care for the region and show how fostering strategic collaborations with colleagues and centres in more developed countries, who can contribute specialised expertise and improve regional collaboration, can improve care across the cancer control continuum.

Cancer control in the Caribbean island countries and territories: some progress but the journey continues.

Cancer causes a fifth of deaths in the Caribbean region and its incidence is increasing. Incidence and mortality patterns of cancer in the Caribbean reflect globally widespread epidemiological transitions, and show cancer profiles that are unique to the region. Providing comprehensive and locally responsive cancer care is particularly challenging in the Caribbean because of the geographical spread of the islands, the frequently under-resourced health-care systems, and the absence of a cohesive approach to cancer control. In many Caribbean countries and territories, cancer surveillance systems are poorly developed, advanced disease presentations are commonplace, and access to cancer screening, diagnostics, and treatment is often suboptimal, with many patients with cancer seeking treatment abroad. Capacity building across the cancer-control continuum in the region is urgently needed and can be accomplished through collaborative efforts and increased investment in health care and cancer control.

Cancer control in small island nations: from local challenges to global action.

Cancer is a leading cause of death in small island nations and is forecast to increase substantially over the coming years. Governments, regional agencies, and health services of these nations face daunting challenges, including small and fragile economies, unequal distribution of resources, weak or fragmented health services, small population sizes that make sustainable workforce and service development problematic, and the unavailability of specialised cancer services to large parts of the population. Action is required to prevent large human and economic costs relating to cancer. This final Series paper highlights the challenges and opportunities for small island nations, and identifies ways in which the international community can support efforts to improve cancer control in these settings. Our recommendations focus on funding and investment opportunities to strengthen cancer-related health systems to improve sharing of technical assistance for research, surveillance, workforce, and service development, and to support small island nations with policy changes to reduce the consumption of commodities (eg, tobacco and unhealthy food products) that increase cancer risk.