ArticleLiterature Review

Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: The Lancet Commission report

Authors:
  • International Association for Hospice and Palliative Care (IAHPC)
To read the full-text of this research, you can request a copy directly from the authors.

No full-text available

Request Full-text Paper PDF

To read the full-text of this research,
you can request a copy directly from the authors.

... Globally, this need is estimated at 75% of deaths from chronic diseases [3]. Additionally, according to The Lancet report "Alleviating the access abyss in palliative care and pain reliefan imperative of universal health coverage, " the need for palliative care among those who died in 2015 was estimated at 45% (25.5 out of 56.2 million) [4]. More recent data from the Global Atlas of Palliative Care in 2017 estimated this need at 82% [5]. ...
... Estimation of the demand for palliative care in a hospital in southern Peru palliative care [4]. In contrast, other methods, such as the one proposed by Gómez-Batiste, exhibit less flexibility in adjusting to various local realities [15]. ...
... The method's ability to integrate new weighting factors, such as those proposed by the Lancet Commission, allows estimates to be dynamically updated without compromising the analysis [4]. ...
Article
Full-text available
Objective To estimate the need for palliative care in deceased patients at the Daniel Alcides Carrión Hospital (Tacna, Peru) during 2023. Methodology An analytical cross-sectional study was conducted with data from adult patients who died in a Peruvian hospital in 2023. Data were collected through the review of death certificates and medical records using the EsSalud Intelligent Health Service. Two methods were used to estimate the need for palliative care: the Rosenwax method (medium estimation) and the Murtagh method (medium-high estimation). Results Out of 255 deaths, 239 were analyzed. The median age was 76 years. 58.2% had two or more comorbidities, and only 3.8% had received palliative care previously. According to the Murtagh method, 82.9% of the patients required palliative care, while the Rosenwax method estimated a need of 74.1%. The most common diagnoses requiring palliative care were: neoplasms (33.5%), chronic obstructive pulmonary disease (15.1%), and renal disease (11.3%). An association was found between having two or more comorbidities and a greater need for palliative care. Conclusion It was found that between 7 and 8 out of every 10 patients needed palliative care, an estimate higher than in other regions. Additionally, having two or more comorbidities was associated with the need for these services. These findings highlight the urgent need for palliative care services in Peru, suggesting that their proper implementation is crucial for improving end-of-life care.
... Lack of access to palliative care is an opprobrium of global health; it continues to be one of the most neglected and inequitable facets of health systems, despite stark evidence of enormous, preventable global suffering and disparity. [1][2][3] Indeed, increasing access to palliative care, a core component of universal health coverage, is essential to achieving Sustainable Development Goal (SDG) 3.8 and continues to be a challenge for health systems of countries throughout the world and at all income levels. 4,5 In 2017, The Lancet Commission 1 on global access to palliative care and pain relief developed a measure of the need for palliative care-serious health-related suffering (SHS)-defined as health-related suffering that becomes serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, or emotional functioning. ...
... Yet, more than 80% of individuals with SHS reside in low-income and middle-income countries (LMICs) with little or no access to the palliative care that could reduce their suffering burden. 1 Incorporating the SHS data, researchers projected a near doubling of SHS by 2060, concentrated in LMICs and with the largest rise in lowincome countries (LICs), where health systems are least prepared. 8 The Commission produced a blueprint for national and global health systems to develop palliative care policies aligned with the 2014 World Health Assembly resolution that declared palliative care as an essential component of comprehensive health coverage. ...
... 3,5,10 This Article advances the Commission's research agenda by strengthening the measurement of SHS as a necessary input to accurately monitor palliative care need and evaluate health system performance. 1,6,[11][12][13][14][15][16][17][18][19] Using data from the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD), we present SHS version 2.0-a strengthened method that includes information on prevalence, reduces double counting across a subset of diseases, and revises non-decedent estimates for several conditions. 6 Decedents are individuals who died during the year the estimate was calculated; nondecedents are individuals who did not die within that year. ...
Article
Full-text available
Background The Lancet Commission on global access to palliative care and pain relief introduced the concept of serious health-related suffering (SHS) to measure the worldwide dearth of palliative care. This Article provides an extended analysis of SHS from 1990 to 2021 and the corresponding global palliative care need.
... WHO upholds morphine as the low-cost, essential medicine for relieving moderate to severe pain-especially in LMICs-in alignment with the Lancet Commission on global access to palliative care and pain relief. 8 Data consistently show that little headway has been made to address unrelieved pain since World Health Assembly Resolution 67.19, [8][9][10][11] which means that calls for a balanced approach go unheeded. ...
... WHO upholds morphine as the low-cost, essential medicine for relieving moderate to severe pain-especially in LMICs-in alignment with the Lancet Commission on global access to palliative care and pain relief. 8 Data consistently show that little headway has been made to address unrelieved pain since World Health Assembly Resolution 67.19, [8][9][10][11] which means that calls for a balanced approach go unheeded. ...
... 24,25 More than 70 million people worldwide with serious illness or injury experience health-related suffering that is amenable to palliative care, making the full range of universal health coverage elusive for almost all countries. 8,26,27 The opioid access abyss affects about 80% of those in need-and primarily over 50 million people with serious health-related suffering living in LMICs. 8 This access desert is primarily driven by poor policy making at national and global levels. ...
... Sub-group analysis showed that the impact of palliative care varied by region, with Asian and African studies reporting the highest standard mean difference. This could be attributed to the fact that, in many African and Asian countries, access to cancer care services, especially curative treatments such as radiotherapy and chemotherapy is often constrained by economic and infrastructural limitations [28]. Integrated palliative care programs help address this gap by prioritizing symptom control, psychological support, and end-of-life care, which significantly improve patients' quality of life [24]. ...
... Standard Care on the Quality of Life in Cancer Patients infrastructure, cultural attitudes, and demographic characteristics. In resource-limited settings, inadequate healthcare infrastructure often results in poor access to essential palliative care services such as pain management, psychosocial support, and trained personnel, thereby limiting improvements in QoL [28,35]. Cultural attitudes also play a significant role; in many Asian and African societies, discussing end-of-life care remains taboo, delaying palliative care interventions, while strong family involvement in these regions enhances holistic care that aligns with cultural values, improving satisfaction and outcomes [29,36]. ...
Article
Full-text available
IntroductionCancer is a leading cause of global morbidity and mortality, significantly impairing patients’ quality of life (QoL). Integrated Palliative Care (IPC) has been proposed as a holistic approach to enhance quality of life by addressing patients’ physical, emotional, and psychosocial needs. While some studies suggest Integrated Palliative Care improves quality of life more than standard care, the evidence remains inconclusive. This systematic review and meta-analysis aim to evaluate the comparative impact of Integrated Palliative Care versus standard care on the quality of life in cancer patients. MethodsA comprehensive search of databases including PubMed, Cochrane Library, and Embase was conducted. We selected randomized controlled trials (RCTs) comparing Integrated Palliative Care and standard care for cancer patients, focusing on the quality of life as measured by validated tools such as the EORTC QLQ-C30 and FACT-G. Data were pooled using a random-effects model to account for study heterogeneity. Subgroup and sensitivity analyses were also performed. ResultsNine randomized controlled trials involving 1,794 patients met the inclusion criteria. Meta-analysis showed that Integrated Palliative Care significantly improved quality of life compared to standard care (SMD = 3.25; 95% CI: 1.20–5.30; p < 0.001). Studies conducted in Asia showed the highest standardized mean difference (SMD = 6.15; 95% CI: 3.07–9.23; p < 0.001), followed closely by studies from Africa (SMD = 6.0; 95% CI: 5.13–6.87; p < 0.001), compared to those from other regions. Similarly, research focusing on lung cancer patients showed the greatest standardized mean difference of (SMD = 6.15; 95% CI: 3.07–9.23; p < 0.001) relative to other cancer types. Furthermore, studies involving newly diagnosed cancer patients recorded the highest standardized mean difference of (SMD = 5.69; 95% CI: 4.57–6.80; p < 0.001). ConclusionIntegrated Palliative Care significantly enhances the quality of life in cancer patients compared to standard care. These findings support integrating Integrated Palliative Care into oncology practices to provide comprehensive, patient-centered care that addresses both physical and emotional needs. Further research should explore long-term benefits across diverse populations.
... Crisis situations compounded with limited access to curative treatments result in greater numbers of people in need of palliative care [10]. Despite medical humanitarian response and palliative care being guided by moral imperatives to "alleviate suffering and maintain human dignity" [10], it was not until recent years that palliative care was recognized as a key pillar of the humanitarian medical response [11]. The 2018 edition of the 'Sphere Handbook, Humanitarian Charter and Minimum Standards in Humanitarian Response' was the first to include a chapter on the alleviation of suffering and palliative care [12,13]. ...
... The 2018 edition of the 'Sphere Handbook, Humanitarian Charter and Minimum Standards in Humanitarian Response' was the first to include a chapter on the alleviation of suffering and palliative care [12,13]. The 2018 Lancet Commission report on pain relief and palliative care recognized palliative care as "an essential component of any response to humanitarian emergencies and crises" [11]. In the same year, the WHO issued a guide on 'Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises' [12]. ...
Article
Full-text available
Background Alleviating suffering and preserving dignity are essential components of healthcare. Patients in need of palliative care often require opioid medication to relieve breathlessness and pain. However, a lack of access to essential opioids, particularly morphine, remains a major challenge in low- and middle-income countries (LMICs). This is notably critical in the humanitarian context. We conducted two case studies to identify the barriers and facilitators of access to opioids, particularly morphine, for palliative care patients in humanitarian settings while exploring humanitarian healthcare workers’ perceptions and experiences with opioids. Methods Two case studies were conducted based on two Médecins Sans Frontières (MSF) projects which integrated palliative care: advanced HIV care in Patna, Bihar, India, and paediatric and neonatal care in the refugee context in Cox’s Bazar, Bangladesh. Six semi-structured interviews were conducted with key MSF healthcare professionals. Interviews were conducted in English, video- and/or audio-recorded and transcribed verbatim. Transcripts were coded and analysed using the grounded theory approach. Results Several barriers impeding access to and use of essential opioids in palliative care were reported by the participants. These included limited availability, accessibility obstacles, sociocultural challenges such as low awareness and misconceptions, lack of healthcare providers’ training on opioid use, and burdensome regulatory processes. Most participants reported that clinical guidelines, familiarity with the use of opioids and interdisciplinary teamwork were important facilitators of opioid prescribing. Participants expressed the urgency for further educational and advocacy initiatives to improve access to essential opioids for patients requiring palliative care. Conclusion Humanitarian healthcare workers face multiple challenges, leading to inadequate access to essential opioid medication, which undermines effective palliative care delivery. Further training on the use of opioids and strong advocacy efforts led by humanitarian organizations and the medical community are critical to improving access to these essential medicines for the relief of pain and suffering.
... The disparity is stark, with developed nations like the United States and European countries having established guidelines to ensure opioid availability in palliative care, contrasted with the limited access in countries like Bangladesh, where annual morphine consumption is just 0.05 mg per capita [1,[3][4][5][6]. Barriers in low-and middle-income countries include strict regulations, addiction fears, and insufficient education among healthcare providers about opioid use [6][7][8][9]. The Lancet Commission has added opioids to the essential service package for LMCI countries [10,11]. ...
... Physicians who receive more comprehensive education in palliative care are better equipped to manage pain using opioids, though their numbers remain negligible [5,[18][19][20]. Research by Knaul et al. indicates that higher education levels among healthcare professionals are linked to better knowledge and practices in palliative care [9]. The survey showed that 98.5% of respondents work with late-stage cancer patients, indicating the crucial role of opioids in palliative care. ...
Article
Full-text available
Background Palliative care aims to alleviate suffering and improve the quality of life for patients with life‐limiting illnesses through effective pain management with opioids. Despite its global importance, opioid use in palliative care faces significant challenges, particularly in resource‐poor settings like Bangladesh. In Bangladesh, opioid use is notably low, with disparities between urban and rural areas. Cultural stigmas, strict regulations, and inadequate healthcare provider training further obstruct effective pain management. Objective This study aims to explore the challenges healthcare providers face regarding opioid use in both hospital and home‐based palliative care settings. Method A descriptive cross‐sectional study was conducted using face‐to‐face semistructured interviews with 135 licensed healthcare providers from August to September 2022. Results The respondents, predominantly young (57% aged 20–39) and female (68.9%), primarily manage late‐stage cancer patients (98.5%), with pain (100%) being the primary symptom treated. Morphine syrup is commonly used (68.1%), whereas oxycodone and buprenorphine are unavailable. Side effects such as deep sedation (43.7%) and addiction (34.1%) highlight the need for careful monitoring. Limited awareness (10.4%) of national opioid policies results in inconsistent practices (p = 0.001) and (p = 0.004). Prescribing restrictions (60.7%) and dispensing rights issues contribute to operational challenges, affecting patient access to pain management. Misconceptions about palliative care (32.6%) and inter‐departmental non‐cooperation (38.5%) hinder patient referrals (p = 0.001) and continuity of care. Conclusion Inconsistent awareness of opioid policies causes varied practices and attitudes. Addressing referral challenges and prescribing restrictions requires interdisciplinary solutions, enhanced education, better policy dissemination, and standardized guidelines for effective palliative care opioid management.
... 5 Furthermore, at least 25.7 million adults and 2.5 million children, including at least 80% of adults and 98% of children residing in low-and-middle-income countries, experience serious health-related suffering at the end of life. 5,7 The need for palliative care at the end of life is projected to double by 2060. 4 In Africa, disparities in access to palliative care are vast, with an estimated 5% of those in need able to access services. 8 Cancer cases are rising exponentially and are projected to rise by 400% by the year 2050. ...
... 10 Furthermore, an estimated 84% and 80% of adult and children cancer patients respectively require palliative care (pain relief) as an integral component of their cancer care. 7 But only 11% of Ugandans in need of palliative care can access services. 5,11 This phenomenon highlights an urgent need for a correspondingly significant increase in the availability of palliative care services. ...
Article
Full-text available
Introduction About a decade after the introduction of palliative care teaching for undergraduate nurses and medical students in Uganda, no research has examined students’ knowledge and self-efficacy to provide palliative and end-of-life care and their correlates. Aims To: (1) estimate final-year undergraduate nursing and medical students’ knowledge of and self-efficacy to provide palliative and end-of-life care, (2) identify correlates of knowledge and self-efficacy to provide palliative and end-of-life care. Design A multicentre cross-sectional quantitative study. Setting/participants Final-year undergraduate medical and nursing students in eight medical and nursing schools in Uganda. Instruments included biodata sheet, the Palliative Care Quiz for Nursing questionnaire and the Palliative Care Self-Efficacy scale. Statistical analyses were performed using STATA version 14.0. Results The mean age of the participants (n = 466) was 24.45 ± 3.31 years. Participants’ knowledge of palliative care scores was low in all domains ‘Philosophy and principles of palliative care’ 1.46 ± 0.93 (range: 0–4), ‘Psychosocial and spiritual care’ 0.61 ± 0.73 (range: 0–3) and ‘Management of pain and other symptoms’ 6.32 ± 1.75 (range: 0–13). Predictors of knowledge were Gender (p = 0.0242), course of study (p = 0.0001) and religion (p = 0.0338). Participants had very low self-efficacy scores in the three domains of the Palliative Care Self-Efficacy scale. Conclusion Participants generally demonstrated limited knowledge and insufficient self-efficacy in providing palliative and end-of-life care. There is a need to integrate and strengthen practical, pedagogical and experiential teaching, review the palliative care curriculum. Future evaluative, longitudinal and interventional as well as qualitative studies are needed to gain deeper insights into this topic.
... Serious health-related suffering (SHS) is the "pain, suffering, and severe distress associated with life-threatening or life-limiting health conditions and with the end of life" that cannot be relieved without medical intervention and that is potentially amenable to relief through palliative care [1]. Morphine is the most effective and affordable drug to address SHS [2]. ...
... India is the second largest cultivator of legal opium for the pharmaceutical industry but less than 4% of people who need morphine in India receive it [1,3]. The impact of the Single Convention on creating restrictive national policies in LMICs was evident following the enactment of the Narcotic Drugs and Psychotropic Substances (NDPS) Act in 1985 in India. ...
... Finally, EOL care also represents a context in which low-value care is common, yet palliative care remains underutilized [32]. Thus, deimplementation presents an opportunity to replace low-value practices with palliative care, a highvalue alternative. ...
... In this debate piece, we focus on pain, which, due to high prevalence worldwide [12,14], drives considerable costs for both society and individuals [15]. The prevalence of undiagnosed and untreated pain in nursing home patients with dementia is high, with around 43% to 80% experiencing clinically significant pain [14,16,17]. ...
Article
Full-text available
Background The increasingly older world population presents new aging-related challenges, especially for persons with dementia unable to express their suffering. Pain intensity and the effect of pain treatment are difficult to assess via proxy rating and both under- and overtreatment lead to neuropsychiatric symptoms, inactivity, care-dependency and reduced quality of life. In this debate piece, we provide a rationale on why valid digitalization, sensing technology, and artificial intelligence should be explored to improve the assessment of pain in people with dementia. Main text In dementia care, traditional pain assessment relies on observing the manifestations of typical pain behavior. At the same time, pain treatment is complicated by polypharmacy, potential side effects, and a lack of around-the-clock, timely measures. But proper pain treatment requires objective and accurate measures that capture both the levels of pain and the treatment effects. Sensing systems research for personalized pain assessment is underway, with some promising results regarding associations between physiological signals and pain. Digital phenotyping, making use of everyday sensor data for monitoring health behaviors such as patterns of sleep or movement, has shown potential in clinical trials and for future continuous observation. This emerging approach requires transdisciplinary collaboration between medical and engineering sciences, with user involvement and adherence to ethical practices. Conclusion Digital phenotyping based on physiological parameters and sensing technology may increase pain assessment objectivity in older adults with dementia. This technology must be designed with user involvement and validated; however, it opens possibilities to improve pain relief and care.
... 1 Although palliative care is known to effectively relieve SHS, and the World Health Organization (WHO) endorsed Resolution 67.19 calling for its integration into healthcare systems and health professional education, it is not yet widely available, particularly in Africa. 2,3 Primary health care has been recognised as an effective means to enhance access to palliative care and achieve universal health coverage. 4 As family physicians play an important role in the delivery of primary health care, this article seeks to illustrate how the family medicine speciality is contributing to efforts to ensure palliative care services are provided throughout the African continent. ...
Article
Full-text available
Although palliative care is known to effectively relieve serious health-related suffering (SHS), it is not yet widely available, particularly in Africa. Primary health care has been recognised as an effective means to enhance access to palliative care and achieve universal health coverage. As family physicians play an important role in the delivery of primary health care, this article seeks to illustrate how the family medicine speciality is contributing to efforts to ensure palliative care services are provided throughout the African continent. The World Health Organization recommends three tiers of training for healthcare providers to enhance competencies in palliative care. This training has played out differently in various African countries. This article focuses on the countries represented by the authors, namely South Africa, Ethiopia, Sudan and Ghana. In providing continuous, coordinated, holistic care to patients along the life course, family physicians can anticipate and relieve suffering in a timely manner in ways that no other specialities have been trained to do. We propose that all family physicians’ training programmes in Africa prioritise palliative care training along with other leading clinical areas, to ensure that the significant numbers of people dying from SHS receive holistic care and die with dignity.
... Health-related suffering is serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. [39] In a cross-sectional study involving 1549 terminally ill patients (mean age 77.4 years), [40] the top five distressing symptoms identified through Relative Importance Index analysis were poor mobility (64.4%), family anxiety (63.5%), difficulty sharing feelings with family/friends (61.4%), weakness/lack of energy (58.1%), and hardly feeling at peace (50.7%). Among patients with dementia, the most distressing symptom was poor mobility (67.8%), while cancer patients rated perceived family anxiety (66.1%) as the most distressing symptom. ...
Article
Full-text available
Introduction: Palliative care (PALC) interventions are pivotal in enhancing the quality of life and quality of care (QOC) for patients with terminal illnesses. Assessing their impact across diverse settings is essential for improving patient outcomes and family satisfaction with care (SWC). This systematic review examined the impact of PALC interventions on end-of-life care outcomes. Methods: Articles from PubMed, Web of Science, and Scopus published between 2013-2023 were reviewed. Participants included staff and/ or family members of adult individuals who have recently died. Interventions encompassed any PALC intervention in end-of-life care compared to usual care. Outcomes assessed included symptom management/burden, comfort around dying, QOC, and SWC. The risk of bias was evaluated using Cochrane tools. Results: Five studies (n=1905 patients) were included reporting deaths occurring either in nursing homes (n=3) or hospital wards (n=2). Some studies showed improved symptom management, particularly for discomfort and anxiety, while others found no significant differences between groups. Variability was noted in comfort around dying, with improvements reported by healthcare professionals but inconsistent support from family assessments. QOC outcomes varied, with some studies indicating improvements while others did not. SWC outcomes were heterogeneous, influenced by acute comorbidities. Conclusions: PALC interventions demonstrate potential in enhancing aspects of end-of-life care, though findings are varied. Further research is essential to address methodological limitations and standardize intervention protocols to optimize PALC's impact on patient and family outcomes. KEY SUMMARY POINTS: Aim: This systematic review investigated the impact of palliative care interventions on symptom management, comfort around dying, quality of care, and satisfaction with care in patients receiving end-of-life care. Findings: The review found that palliative care interventions improved symptom management for discomfort and anxiety in some studies, while others showed no significant differences. Additionally, comfort around dying was reported to improve by healthcare professionals, but family support remained inconsistent. Quality of care outcomes varied, with satisfaction influenced by acute comorbidities. Message: These findings highlight the need for consistent support from family members and healthcare providers to optimize the effectiveness of palliative care interventions at the end of life.
... Care should be developmentally adequate and in accordance with family values. Despite variations in the definition of children's palliative care [3,4], the concept and philosophy of care are consistent with care provided for children with life-threatening and life-limiting conditions and their families. diverse pediatric nursing care contexts and demonstrated that the most studied pediatric nursing contexts were pediatric inpatient services, pediatric palliative care, and neonatal intensive care [17]. ...
Article
Full-text available
Citation: Costa, A.I.L.d.; Barros, L.; Diogo, P. Emotional Labor in Pediatric Palliative Care: A Scoping Review. Nurs. Rep. 2025, 15, 118. Abstract: Background: Caring for children in palliative care especially impacts healthcare professionals' personal and professional lives. Their emotional experience and needs are frequently forgotten. Healthcare professionals face emotional demands when caring for children with palliative needs and their parents. Objective: This scoping review aims to identify and map the scientific production about the emotional labor of healthcare professionals in pediatric palliative care. Methods: This scoping review was conducted according to the JBI recommendations and the PRISMA Extension for Scoping Reviews. We searched 16 electronic databases in August 2023 and updated the search on 17 February 2025. Articles were screened according to eligibility criteria, and a content analysis allowed for a summary of key findings. Results: Eleven publications were selected. Most studies were conducted in the United States of America and with nurses as the professionals involved. Many publications were qualitative studies and developed in a neonatal intensive care context. Using content analysis, five themes were identified: (1) emotional experience of healthcare professionals, (2) relational context involved, (3) managing professional and personal boundaries, (4) intrapersonal strategies of emotional labor, and (5) social and organizational strategies of emotional labor. Conclusions: The importance of implementing emotional labor strategies is highlighted, especially intrapersonal, social, and organizational strategies. Education, training, and reflection are needed within a workplace culture that recognizes emotional experiences and supports the emotional management of healthcare professionals. Emotional labor in pediatric palliative care should be recognized. Further research in this area is needed.
... 3 Palliative care is recognised as an essential health service within universal health coverage (UHC). 4 UHC is the third goal of the sustainable development goals and aims to ensure healthy lives and promote well-being for children and adults including older people. 5 Older people typically experience rising multimorbidity as they age, leading to high usage of informal and formal health services. ...
Article
Full-text available
Background The WHO primary palliative care strategy states that palliative care is ‘an ethical responsibility of health systems’ and calls for integration of palliative care into public healthcare systems to achieve universal health coverage. We aimed to determine stakeholders’ perspectives on the necessary components of and considerations for a feasible and acceptable model of integrated palliative care and primary care for older people living with serious multimorbid illness in Sub-Saharan Africa. Methods We conducted a multicountry cross-sectional qualitative study in Ghana, Malawi and Zimbabwe. In-depth qualitative interviews were conducted with multimorbid older people and family caregivers. Focus groups were conducted with healthcare staff. Verbatim transcripts were subjected to inductive framework analysis to identify stakeholders’ needs and preferences for delivering and receiving palliative care in primary care facilities. Results The coding framework identified five main themes: (i) communication; (ii) coordination of care; (iii) impact of living with chronic illness; (iv) seeking healthcare; and (v) living with chronic illness: coping strategies and resources. The impact of multimorbid illness on older people was multidimensional, including pain and symptom control, catastrophic spending, social exclusion and limitations on activities of daily living. Specific challenges were identified in care pathways and delivery. Communication was sub-optimal, with lack of appropriate information and patient involvement. Conclusion Person-centred approaches are required to deliver palliative care to older multimorbid people in primary care settings. This study informs implementation of the WHO Healthy Ageing Policy intention to deliver person-centred primary palliative care and the WHO primary palliative care guidance.
... The 2018 Lancet Palliative Care Commission Report recognizes an abyss between the need and the access for PC and pain relief in low and middle-income countries. 3 The World Health Organization (WHO) recognizes that basic, intermediate, and specialtylevel training are all needed to make basic PC services universally accessible to patients. However, despite WHO recommendations, many Latin American countries have an insufficient level of development in PC, including Brazil. ...
Article
Full-text available
Objective: To describe the first national project in Brazil to systematically bring palliative care (PC) knowledge and practices to public health services. Materials and Methods: Descriptive case study of “Palliative Care Program in the SUS—hospital care, specialized outpatient care and home care,” based on three main pillars and carried out in five stages. Results: The program took place from 2020 to 2024. Part of its fundamental design was the customization of PC initiatives to be implemented in the health care services based on the local reality of each region and its available resources. The target services were clusters of three public or philanthropic health care services comprising one hospital, one specialized outpatient clinic, and one home care service that allowed for the continual care of the patients. Discussion: Considering the Brazilian territorial extension and the complexity of the public health system, the project was innovative in adding competence and management processes in PC without burdening the services. Remote activities and reduced visits made the project low-cost, allowing it to be scaled up and viable even in a country of continental proportions. Conclusions: The field teams had the opportunity to listen to the health professionals of the public system, who were struggling with work overloads and a population in dire PC needs, giving them a voice and enabling the adjustment of the project’s interventions based on their reality. These ongoing and timely adjustments at the same time engaged local leaders and improved the interventions sought.
... While the study sheds light on the issue of illicit use, it is crucial to also recognize the significant problem of undertreatment of pain in many parts of the world, particularly on the African continent [135,136]. Also, reports and the official data from the United Nations and the World Health Organization (WHO) reveal the stark reality of the undertreatment of pain in Africa [137][138][139], where there is a scarcity and limited availability of opioids for medical use. This shortage of essential medications has dire consequences, leading to thousands of individuals enduring unnecessary suffering and experiencing inhumane deaths due to the lack of access to adequate pain relief. ...
Article
Full-text available
Introduction There is an ongoing global upsurge of opioid misuse, fatal overdose and other related disorders, significantly affecting the African continent, due to resource-limited settings and poor epidemiological surveillance systems. This scoping review maps scientific evidence on epidemiological data on unlawful opioid use to identify knowledge gaps and policy shortcomings. Method The databases (PubMed, Scopus, Web of Sciences) and references were searched guided by Population, Concept, and Context (PCC) and PRISMA-ScR. The extracted characteristics examined were author/year, African country, epidemiological distribution, age group (year), gender, study design and setting, common opioid/s abused, sources of drugs, reasons for misuse, summary outcomes and future engagement. Results A population of 55132 participated in the included studies of 68 articles, with the largest sample size of 17260 (31.31%) in a study done in South Africa, 11281(20.46%) in a study from Egypt and 4068 (7.38%) in a study from Ethiopia. The gender of the participants was indicated in 65(95.59%) papers. The mean and median age reported in 57(83.82%) papers were 15.9-38, and 22-31years. The majority of study-designs were cross-sectional, 44(64.71%), and the most used opioids were heroin, 14articles (20.59%), tramadol, 8articles (11.76%), and tramadol & heroin, 6 articles (8.82%) articles. Study-settings included urban community 15(22.06%), hospital 15(22.06%), university students 11(16.18%), and secondary school learners 6(8.82%). The highest epidemiological distributions were recorded in the South African study, 19615(35.60%), Egyptian study, 14627(26.54%), and Nigerian study 5895(10.70%). Nine (13.24%) papers reported major opioid sources as black market, friends, and drug dealers. To relieve stress, physical pain and premature ejaculation, improve mood and sleep-related problems and help to continue work, were the major reasons for taking these drugs as reported in twenty articles (29.41%). Conclusion The findings of this scoping review show significant knowledge gaps on opioid usage in the African continent. The epidemiological distribution of unlawful use of opioids among young adults, drivers, and manual labourers in both genders is evident in the findings. The reason for use necessity scrutinises the role of social interaction, friends and family influence on illicit opiate use. Therefore, there is a need for regular epidemiological surveillance and investigations into multilevel, value-based, comprehensive, and strategic long-term intervention plans to curb the opioid problem in the region.
... Можна сказати, що в країнах із високим рівнем доходу розроблені дієві комплексні програми паліативної допомоги населенню. В той же час в країнах з низьким і середнім рівнем доходу відстежується обмеженість доступу до належного паліативного догляду, в тому числі забезпеченню ефективними знеболюючими препаратами [13]. Як зазначалося раніше, існують фактори, які безпосередньо впливають на можливості надання ПД. ...
... China currently lacks dedicated legislation for PC, with related documents and regulations scattered across medical and older adult care policies, failing to form a complete and independent system. There remains a significant imbalance between the demand for and access to PC services (42). This may be attributed to the complexity of the PC issue, sharp ethical conflicts, and the difficulty of legislation, as well as a weak societal awareness and insufficient recognition of the necessity for legislation in this area. ...
Article
Full-text available
Objective To explore the palliative care education experiences of doctors, nurses, and community residents. Methods A semi-structured interview was conducted with 2 doctors, 8 nurses and 9 community residents in Jinan. Content analysis and behavior change wheel theory were used to analyze the interview content. Results Motivation: The road to be taken; Emotional touch of personal experiences; Prepare early; Not now. Capability: Multiple cognition; Need for a topic catalyst; Trust bias; Disconnect between learning and application; Treading on thin ice. Opportunity: Willing but unable; The Need for a larger voice and greater participation. Conclusion Community palliative care education requires greater attention. Community residents exhibit diverse perceptions and attitudes toward palliative care, reflecting the influence of personal experiences and sociocultural factors. Innovating the content and format of educational resources and enhancing education for community residents and medical staff will facilitate palliative care.
... In the US, UK and Australia, there is the existence of highly organised and integrated palliative care services, where specialist services are available in many healthcare settings (Knaul et al, 2018;Sharkey et al, 2018;Arias et al, 2019). ...
Article
Full-text available
Background Palliative care provision is a serious challenge for nursing staff as it involves end-of-life care decisions, as well as a very close relationship with the grief and pain of the patient and their relatives. Their beliefs and attitudes regarding palliative care affect the quality of care, and can potentially influence whether a nurse experiences burnout in their career. Aims To investigate the attitudes and beliefs of nursing staff about palliative care and correlation with various demographic factors. Methods The study used a cross-sectional design and included nurses and nursing assistants who worked at Intensive Care Units and High Dependency Units. The authors assessed the attitudes on palliative care using the Frommelt Attitudes Toward Care of the Dying Scale (FATCOD) scale. Findings A total of 150 nurses/nursing assistants. Their satisfaction with care and the months since the patient's initial diagnosis were positively associated with a more positive quality of life. Participants' beliefs about end-of-life care are positively and sometimes negatively influenced by demographic factors, such as their gender and previous work experience. Conclusion The findings of the study may prove valuable in understanding the challenges faced by nurses caring for patients in the final stretch of the patient's life and may be the starting basis for initiating educational programmes on palliative care.
... Randomized Controlled Trials (RCT) are another source of knowledge regarding HRQoL in cancer patients [9,10]. The RCT population often comprises individuals with lowrisk profiles who are younger and less co-morbid than the general cancer population [18]. ...
Article
Full-text available
Purpose Measuring and understanding the determinants of HRQoL is essential to the delivery of effective and high-quality end-of-life (EoL) care to patients with cancer. Despite this, the evidence base remains sparse and with much of the existing literature relying on data from cross-sectional studies and clinical trials. Aim The objective of this study was to describe HRQoL in a population of patients with cancer leading up till death using both the generic preference-based scale European Quality of Life 5 Dimensions 5 Level Version and the disease-specific scale European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire. Methods Using a longitudinal prospective study design, HRQoL data was collected in four waves over the course of one year. The population consisted of all patients who received cancer-targeted drug treatment at the Department of Oncology at Odense University Hospital, Denmark. Only patients who died during the data collection period were included. Results HRQoL in patients with cancer was stable for most months and close to the level of the general Danish population at the same age but deteriorated considerably in the last three months of life. The same pattern was observed for both HRQoL scales. Conclusion Despite current efforts to deliver high-quality EoL care to patients with cancer, we see a general decrease in HRQoL in the months leading up to death. The generic and disease-specific HRQoL scales do capture different dimensions of HRQoL which also, by construct, are weighted differently in the two approaches.
... Palliative care is an integral part of health systems, defended by evidence that it best responds to an increasingly large group of patients [1]. ...
Article
Full-text available
(1) Background: The economic cost of nursing care to palliative patients in avoidable hospital admission is unknown. (2) Methods: An observational, retrospective, and analytical study was used encompassing the economic cost of nursing care in a general hospital emergency department that uses descriptive and inferential statistical analysis. (3) Results: We have a sample of 273 palliative patients in preventable hospital admissions (76.3%, CI 95%: 71.7–80.8), deceased, in 2019. With a median of 84 years, about 80% were admitted home after 5 h of complaints, mainly due to respiratory symptoms. Patients remained for approximately 24 h in the emergency department, totaling a median of EUR 180.98 in nursing care costs per admission. (4) Conclusions: It was evident that with the knowledge obtained about palliative economic nursing costs, we could increase results, manage resources, and consolidate PC integration in health systems, as this study proved. This study was not registered.
... This model focuses on establishing hospices and home-based care programs to deliver palliative care services to communities [18]. Studies demonstrate its success in enhancing the quality of life for patients with advanced HIV/ AIDS and cancer, especially in underserved areas [19,20]. However, challenges persist, including limited funding, inadequate infrastructure, workforce shortages, and the need for culturally sensitive care delivery. ...
Article
Full-text available
Palliative care plays a pivotal role in addressing the complex needs of individuals facing life-threatening illnesses, yet access to these services remains limited, particularly in African healthcare systems. This review explores viable strategies for integrating palliative care into African healthcare systems to enhance accessibility and quality of care. We conducted a search across PubMed, Google Scholar, CINAHL, African Journals Online, and Scopus. After applying inclusion and exclusion criteria, which focused on integration strategies and peer-reviewed, English or French articles related to African healthcare systems, we included 36 studies. It begins by elucidating the pressing need for palliative care integration, highlighting the evolving disease burden, caregiver challenges, and cultural influences on care preferences. The paper then discusses various models for palliative care delivery, including hospice-based approaches and task-shifting models, evaluating their advantages and challenges. It emphasises the importance of a public health approach to palliative care, advocating for integration into existing healthcare systems. The paper explores strategies for training healthcare professionals in palliative care competencies and community-based education programs to promote awareness and acceptance of palliative care services. Furthermore, it outlines future directions and recommendations, including transitioning towards comprehensive health insurance plans, streamlining licensing procedures, embracing technological advancements, advocating for standardised policies, fostering interdisciplinary collaboration, and integrating precision medicine approaches.
... By 2020, it had increased significantly but still fell far below the average global consumption (Average Global 6.1478 mg per capita; 0.88 mg per capita in Nepal) [ Figure 1]. [9,19,20] ...
Article
Full-text available
This study aimed to explore current opioid availability and accessibility for palliative care (PC) practice in Nepal. A narrative review was conducted by performing literature searches in electronic databases, grey literature, policy documents, and pharmaceutical websites. This was supplemented by utilising the authors’ expertise and experience in this field. Six different opioids are available in Nepal, including oral immediate and modified-release morphine formulations. Morphine is produced and distributed by only one manufacturer, which imports all raw materials from Europe. Access to morphine in rural areas is poor, with rural-level healthcare centres rarely stocking morphine, particularly in PC formulations. Fentanyl transdermal (TD) patch and methadone syrup are available in Nepal but are imported. The Fentanyl TD patch is extremely expensive, and methadone syrup is only available for the management of addiction. While opioid availability has increased in Nepal, there is a need to improve opioid accessibility for PC services, particularly in rural areas. Several approaches are explored in this review.
... Según las evaluaciones de la Comisión Lancet en 2015 se notificaron 56,2 millones de muertes en todo el mundo, de estas el 45% que equivale a 25,5 millones de personas se habrían beneficiado de cuidados paliativos. Más de 35,5 millones de personas que murieron en 2015 deberían haber recibido cuidados paliativos o tratamiento para el dolor y otros tipos de sufrimiento (9). ...
Thesis
Objetivo: Diseñar un proceso de atención para consulta de enfermería en cuidados paliativos de pacientes adultos y pediátricos del Hospital Pablo Tobón Uribe. Metodología: Se realizó una pasantía nacional en la ciudad de Medellín durante el mes de abril de 2024. Se desarrolló un cronograma de actividades semanales que permitió el cumplimiento de los resultados generados. Para construir esta propuesta se realizó una búsqueda de literatura científica relacionada con la consulta de enfermería, el contexto histórico, la normatividad existente a nivel internacional y nacional, los tipos de consulta y características relacionadas y el rol que desempeña el profesional de enfermería en esta área. Así como, el rol de la enfermera de Cuidados Paliativos en escenarios de atención ambulatoria. Se utilizaron cuatro bases de datos como fuente: Lilacs, Embase, Pubmed y el buscador Google académico, sin importar el año de publicación debido a una limitada producción científica sobre el desarrollo de la consulta de enfermería. El informe técnico fue construido por la estudiante con el acompañamiento del asesor asignado y se llevó a cabo en paralelo con las actividades propuestas y los productos generados de la pasantía. Conclusiones: Los equipos de consulta de cuidados paliativos requieren de un trabajo interdisciplinario, donde la enfermera juega un rol fundamental en la valoración individual de las necesidades de cuidado paciente/familia. Para lograrlo, los profesionales de enfermería deben adquirir herramientas de pensamiento crítico y de práctica basada en evidencia, así como formación especializada y entrenamiento en habilidades sociales, emocionales, de comunicación y educación. La enfermera ocupa un lugar privilegiado ya que constituye, en muchas oportunidades, el nexo de contacto entre paciente/familia y los miembros del equipo interdisciplinario, lo cual le permite ejercer con total plenitud su rol de cuidador experto. Palabras clave: consulta de enfermería, consultorio de enfermería, enfermera consultora, cuidados paliativos.
Chapter
Palliative care is an approach that aims to improve the quality of life for patients with serious, incurable illnesses by focusing on symptom relief. Oropharyngeal cancer is often diagnosed at advanced stages and presents a range of physical and psychological symptoms. This chapter aims to synthesize information regarding oropharyngeal cancer and its approach through palliative care, emphasizing the importance of an interdisciplinary perspective to improve quality of life by alleviating symptoms such as pain, difficulty swallowing, and breathing problems. Adequate nutritional support is crucial, given the significant impact of the disease on the patient's food intake and nutrition. Furthermore, the need for public policies that ensure equitable access to palliative care and its integration into the healthcare system should be emphasized. It is, therefore, evident the importance of investing in the education and training of professionals in this type of care for global public health.
Article
Full-text available
Abstracts The lack of professional support for patients needing palliative care in Indonesia leads to a heavier reliance on family members for care. However, family tensions often arise from unmet expectations about support from other family members. This study explores implicitness, which we describe as the use of indirect or unspoken methods to communicate messages. We argue that the value of implicitness strongly influences the communication of these expectations and affects family caregiving dynamics. This paper aims to discuss the hidden expectations shaped by implicitness, what makes it an important value in family care, its ethical implications, and strategies for resolving the problems that arise from it. We conducted ethnographic fieldwork in Banyumas, Indonesia, involving in-depth interviews, home observations, and focus group discussions with patients, families, and health professionals. Data were analyzed through an empirical ethics approach. Our findings indicate that implicitness shapes family expectations regarding involvement of other family members in daily caring activities and financial support. Implicitness serves as an important value as it seeks to preserve sincerity and also maintain harmony, by not directly asking for help. However, implicitness can also lead to underlying family tensions that hinder proper care and reduce the well-being of patients and families. Families were able to resolve problems by accepting difficult circumstances or sharing them with health professionals. We suggest that health professionals should acknowledge the role of implicitness and use active listening skills to identify potential problems. If appropriate, they could help persuade family members to be more actively involved in caregiving through indirect communication. By doing so, they may enhance the well-being of both patients and families without needing every expectation to be directly and explicitly articulated.
Article
Full-text available
Background Palliative care is not readily available in many lower middle-income countries and Sri Lanka is not an exemption for this. Morphine is one of the key drug available for symptoms (pain and dyspnoea) alleviation among palliative care patients. However, due to various reasons, it was noted that morphine drug was underutilised in palliation. No studies have been done to identify reasons for underutilisation in Northern Sri Lanka. As such, this study attempts to identify factors that limit the usage of morphine in palliative care among physicians working at Teaching Hospital, Jaffna. Methods This cross-sectional survey was conducted among 216 physicians in March-April 2024 using a self-administrated questionnaire distributed to them. Data was analysed using SPSS (29). Self-rated physicians’ confident level of morphine initiation in palliative care patients was assessed in the scale of 0–10 and reported in mean with standard deviation (SD). Results The majority were females (55.1%) and exactly half of the physicians (50.0%) had less than 5 years of working experience. The mean score of the confident level of physicians in initiating morphine for palliative care patients was 4.84+_2.74. Furthermore, mean score was less among females in comparison to males (P-0.005). Just above 50% of them (50.5%) reported that the undergraduate education about pharmacology and clinical usage regarding morphine may be adequate and 15.2% reported that it was not adequate at all. Conclusion There is a great need for training for physicians on morphine prescribing in palliative care in Northern Sri Lanka. Major reasons for not prescribing morphine among physicians were lack of confident or not familiar with palliative care, shortage of drugs, patient refusal and relative refusal.
Chapter
As defined by the World Health Organization, palliative care is an interdisciplinary specialty aiming to improve the quality of life for people living with life-threatening diseases, by the collaborative contributions from various professionals such as doctors, nurses, social workers, therapists and volunteers. In recent decades, there have been rising demands for palliative care around the world due to the growing ageing population and prevalence of non-communicable diseases, as well as certain communicable diseases. Patients who have terminal illness not only face severe physical sufferings, but also experience significant psychological burdens. A holistic approach incorporating psychological interventions is essential in the provision of quality palliative care. Innovation and development of approaches to improve psychological well-being of palliative care patients has been a major research agenda in the field of palliative care and end-of-life issues. In recent years with the advancement in technology, increasing studies have investigated the applications of virtual reality technology in pain relief and symptom management in the palliative care setting. Extensive efforts have also been applied to research studies regarding the acceptability, feasibility and assessment of virtual reality therapy for palliative care patients. This chapter will reveal relevant studies addressing these critical aspects in palliative care. This chapter will further discuss the implications for the development of effective and integrative approaches in end-of-life care for the community, as well as insights gained from the use of virtual reality in palliative care education.
Conference Paper
Introduction Half of the global population receives less than 1% of global morphine supply,¹ yet 80% of those most in need of palliative care live in low- and middle-income countries² where this scarcity of morphine exists.Ethiopia has a high burden of terminal illness owing to late diagnosis and limited treatment options, yet its palliative care service is nascent and there is minimal availability of oral morphine. The Ethiopian government is currently considering opening its first morphine production unit to address this problem. This audit was undertaken to identify the previously unmeasured burden of uncontrolled pain and access to oral morphine in a cohort of adult patients from Hospice Ethiopia, a community palliative care service in Addis Ababa. Method An audit was completed on 100 patient records from Hospice Ethiopia. The patient records were chosen at random from the archives of patients with a diagnosis of either cancer or HIV who had died between 2010 to 2024. Results 95% of patients with cancer, and 100% of patients with cancer and HIV reported pain. On first assessment visit, the average pain rating was 3.85 out of 5 and only 5% of patients had controlled pain. By final clinical visit, 60% of patients had controlled pain. 33% of patients had constant access, and 15% had intermittent access, to oral morphine. After 2021, only 24% of patients had constant access to oral morphine. Conclusion There is a large and unmet need for effective pain control in patients living with terminal illnesses in Ethiopia. Closing the global morphine access divide by achieving universal access to palliative care and effective pain control is an urgent imperative. Recommendations from the 2018 Lancet Commission Report² should be followed to achieve this and the international community should support the Ethiopian government in opening its first morphine production unit. References • Knaul FM, Bhadelia A, Rodriguez NM, Arreola-Ornelas H and Zimmermann C. The Lancet Commission on Palliative Care and Pain Relief—findings, recommendations, and future directions. The Lancet Global Health 2018; 6 :S5-S6. • Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Kwete XJ, Arreola-Ornelas, H, Gómez-Dantés O, Rodriguez NM, Alleyne GA and Connor SR. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. The Lancet 2018; 391 (10128):1391–1454.
Conference Paper
Introduction Opioids are an effective analgesic for patients with advanced diseases. Recent research indicated a lower median morphine equivalent daily dose (MEDD) among Latin America (LA) cancer patients. However, opioid consumption patterns remain unknown in the broader palliative care (PC) population. Purpose This systematic review and meta-analysis aimed to explore opioid use and prescription pattern for patients in PC settings in LA. Methods A systematic review and meta-analysis was conducted adhering (PRISMA) guidelines. A comprehensive search of MEDLINE, EMBASE, PubMed, LILAC, and Scielo databases was performed from inception to January 2024. We included quantitative studies in English, Portuguese, and Spanish languages, examining opioid prescription patterns in adult PC patients. Two independent reviewers selected the studies, reviewed data extraction and assessed quality using the Effective Public Health Practice Project tool. Narrative synthesis and meta-analysis of MEDD were performed using random-effects models. Categorical variables were presented as frequencies and percentages, and continuous variables as means or medians. Results Of the 2706 records screened, 49 studies from seven countries were included. 36 (73%) were observational, while 13 (27%) were randomised controlled trials. Most studies were of low or moderate evidence quality.A total of 8,834 patients were analysed, with morphine (54%) and tramadol (15%) being the most prescribed opioids, predominantly for cancer pain. Meta-analysis of 27 studies involving 6,539 patients showed a mean MEDD of 82.8 mg, with a 95% confidence interval of 58.2–107.4 mg. Study heterogeneity was considerably high, with an I²=100%. Conclusion This systematic review provides a comprehensive analysis of opioid prescribing patterns for PC patients in LA. The mean MEDD reported was 82.8 mg, though, there are few controlled studies and low dosing variability. Increasing the volume and quality of research on PC in LA is essential to guide clinical practice and inform policy decisions for improved pain management and PC.
Conference Paper
Background Providing emotional and psychological support to relatives at the end of a patient’s life is a key tenet of palliative care. However, it is difficult to delineate (both ethically and professionally) the responsibilities of palliative care healthcare professionals when a relative is describing suicidal ideation specifically due to their loved one’s palliative condition.Our aim is to look at the main underlying factors, spark debate and suggest a potential practical framework for this highly emotive and complex topic. Method This framework has been developed through a combination of sources. This includes discussions with psychiatry, the inpatient palliative care team, the medical defence union and personal historical experience within the team. A recent case prompted this piece of work. Results (Suggested protocol) Consensus suggests the following key interventions outlined in our framework: • Clarify if already known to mental health services. • Signposting towards appropriate mental health services. • Contacting primary care physician to raise concerns (may have additional relevant history not widely known) • Utilise support networks with patient consent (including family and multi-disciplinary teams) • In the event of a crisis episode where risk of harm is demonstrable contact the local authorities for transfer to immediate psychiatric assessment and/or police in-keeping with jurisdictional legislation. Conclusions The main role of the healthcare provider is in timely signposting the suicidal relative to the appropriate services. This framework outlines a pragmatic model which clearly outlines a stepwise approach. Utilising this can be practically helpful in a pressurised situation, keep everyone legally safe and promote an appropriate focus on the individual given the complexity of these issues. References • General Medical Council, Good Medical Practice 2024. • Ward, B, Learning lessons from complaints and claims about suicide, MDU Journal, Summer 2017. • Kustanti CY, Chu H, Kang XL, et al. Anticipatory grief prevalence among caregivers of persons with a life-threatening illness: A meta-analysis. BMJ Supportive & Palliative Care 2023; 13 :e1074-e1083.
Article
Introduction To deliver palliative care, it is important to understand what a “good death” means to the relevant people. Such studies have mostly occurred in high‐income settings that usually live by Western ideals. What matters to people is likely to vary across different regions of the world, influenced by multiple factors. Although there is a great need for palliative care in South Asia, there is a lack of comprehensive understanding of what a good death means in this setting. This study aimed to increase understanding of what is considered a good death in South Asia. Design Systematic review and narrative synthesis. Method A systematic search was conducted across eight databases, an Advanced Google search, and a bibliography search of selected articles. A data‐based convergent synthesis was performed, along with quality appraisal. Results Twenty‐five empirical studies were selected for analysis from India, Pakistan, Bangladesh, Sri Lanka, and Bhutan. Four themes emerged. Mutual care and connection support a continued sense of self : contributing to others, while receiving connection through relationships and spiritual practices, was important for patients and supported by families and healthcare workers. Freedom to choose—privilege or burden ?: the choice to participate in care was necessary for some patients but a burden for others, who preferred the family to lead their care. Severe uncontrolled pain and financial distress precluded choice for some patients, who felt death was the only option. Decisions regarding artificial prolongation of life were complex for patients and healthcare workers. Opportunities in the last days : when actively dying, there was general agreement on the importance of being pain‐free, feeling safe, and having family present. Home was not always the preferred place of death. For family, it was critical to perform last rites. After death matters : What happens after death—influenced by leaving a legacy and religious beliefs—affected all parties before, during, and post‐death. Conclusions To our knowledge, this is the first review of what a good death means in South Asia. There is a dearth of research from most South Asian countries. Although the South Asian perspective has similarities with the Western perspective, we note important nuances around decision‐making, prolongation of life, prognostic awareness, and wanting to end one's life, moderated by culture, religion, and poverty. We support policies that account for these variations. Ongoing work is required to provide good symptom management, thus increasing opportunities for patient participation in care. Further research is needed in areas of ethics and religion at the end of life in South Asia.
Article
Assess the frequency of caregiver burden among patients with advanced cancer receiving palliative anticancer treatment. Compare characteristics of those who show caregiver burden versus those who do not. This is a cross-sectional study in two university hospital oncology departments. Caregivers completed the Reduced Zarit Burden Interview and Emotional Distress Thermometer. Data were analyzed to identify factors associated with caregiver burden. 79 informal primary caregivers participated, mostly women (65%, N = 51), middle-aged (median 57, SD = 9), employed (54%), and spouses (58%, N = 46). Most had medium economic status (70%, N = 55), no other dependents (51%, N = 40), support from other caregivers (56%, N = 44), and good self-rated health (82%, N = 65). Caregiver burden affected 61% (N = 48), more often women (p = 0.049), those with high stress (p = 0.001), and when more people were involved in patient care (p = 0.048). Caregiver burden is common in informal primary caregivers of patients with advanced cancer receiving palliative treatment, especially in highly stressed women.
Article
Background Telemedicine in palliative care is advancing to conquer challenges like staff shortages and limited access. Though feasibility and acceptance are proven, the clinical effects of teleconsultations (a nurse on-site consulting with a remote physician) have yet to be studied. The impact on physicians’ workload or which patients it suits best, remain unclear. Aim This study analyses the effect of teleconsultations on physician quota (number of physician-attended home visits divided by total number of home visits) and hospitalizations in specialized outpatient palliative care (SOPC) after 3 years of use in Aachen, Germany. Design In a single-center, retrospective cohort study (September 2019–March 2023), clinical data was retrieved from a palliative care provider. Setting/Participants 1756 patients with diseases from all medical disciplines received care during the observation period. By clinicians’ choice 384 received teleconsultations, while 1372 did not. Results 833 teleconsultations were conducted. Telemedicine patients were younger (72.8 ± 12.5 years vs. non-telemedicine 74.4 ± 12.8 years, p = 0.011), presented more diagnoses ( p < 0.001), while scope of symptoms and diagnoses was equivalent. Telemedicine patients had a longer duration of stay within the SOPC and more home visits. Physician quota in the telemedicine group was lower ( p < 0.001). A matched pairs analysis ( n = 726) showed no significant difference in hospitalizations. Conclusions Telemedicine can reduce physician quota, alleviating personnel shortages while providing time for care-intensive patients and creating capacity for more patients. Telemedicine seems suited for multimorbid, long-term patients. A matched pairs analysis showed no difference in hospitalizations in telemedicine patients.
Chapter
The palliative and end-of-life care movement worldwide has been a success story in many respects. Palliative care services exist in many countries throughout the world and are increasingly integrated into mainstream health services. Despite these achievements, palliative and end-of-life care continues to face challenges from demographic trends, changing patterns of illness, and social contexts of care, which suggest an increasing need for palliative care services and provision. Questions have been raised regarding the appropriateness of building further services, as compared with new perspectives on care, which see communities and professionals working in partnership. These perspectives are collectively known as the new public health perspective, and this chapter details the emergence of new public health perspectives in end-of-life care.
Article
Full-text available
Background Palliative care (PC) is recognised by the United Nations as a crucial element of universal health coverage. This article explores the cultural beliefs around the acceptability and accessibility of PC in Tanzania, East Africa. Aim To provide insight into barriers for the provision of culturally safe PC in this region. Method Qualitative studies researching adult perspectives on PC in Tanzania between 2010 and 2022 were critically appraised. Findings Of 153 studies identified in the initial search, seven met the inclusion criteria. Four key themes were identified: acceptability of PC for recipients; acceptability of PC for providers; accessibility of PC for recipients and accessibility of PC for providers. Conclusion Cultural beliefs around the acceptability of PC included shared values for individuals at the end of life and challenges around breaking bad news. Barriers to the accessibility of PC included training opportunities and opioid availability. Further research prioritising ‘cultural safety’ is necessary to improve PC provision in Tanzania.
Article
Full-text available
Palliative care is essential for patients with chronic pulmonary diseases, especially in low- and middle-income countries (LMICs). Chronic respiratory diseases (CRDs), such as chronic obstructive pulmonary disease and interstitial lung diseases, cause significant morbidity and mortality globally, with a heavy burden in LMICs. Despite the need, access to palliative care in LMICs is limited, leading to inadequate symptom management and support. Palliative care benefits include improved quality of life, reduced healthcare costs, and increased patient and family satisfaction. However, barriers in LMICs, including limited resources, infrastructure, and trained providers, as well as cultural and regulatory challenges, hinder care delivery. Early integration of palliative care for patients with CRDs can enhance outcomes and reduce healthcare utilization, yet it remains underutilized in these regions. This review highlights the challenges and impact of palliative care for CRDs in these regions. Addressing these issues requires regulatory reforms, provider education, and investments in healthcare infrastructure. Solutions include national policies, training healthcare professionals, telemedicine, and research collaborations. Understanding and addressing barriers to palliative care in LMICs is crucial for improving care quality and outcomes for patients with CRDs.
Article
Full-text available
Background: Measurement of changes in health across locations is useful to compare and contrast changing epidemiological patterns against health system performance and identify specific needs for resource allocation in research, policy development, and programme decision making. Using the Global Burden of Diseases, Injuries, and Risk Factors Study 2016, we drew from two widely used summary measures to monitor such changes in population health: disability-adjusted life-years (DALYs) and healthy life expectancy (HALE). We used these measures to track trends and benchmark progress compared with expected trends on the basis of the Socio-demographic Index (SDI). Methods: We used results from the Global Burden of Diseases, Injuries, and Risk Factors Study 2016 for all-cause mortality, cause-specific mortality, and non-fatal disease burden to derive HALE and DALYs by sex for 195 countries and territories from 1990 to 2016. We calculated DALYs by summing years of life lost and years of life lived with disability for each location, age group, sex, and year. We estimated HALE using age-specific death rates and years of life lived with disability per capita. We explored how DALYs and HALE differed from expected trends when compared with the SDI: the geometric mean of income per person, educational attainment in the population older than age 15 years, and total fertility rate. Findings: The highest globally observed HALE at birth for both women and men was in Singapore, at 75·2 years (95% uncertainty interval 71·9–78·6) for females and 72·0 years (68·8–75·1) for males. The lowest for females was in the Central African Republic (45·6 years [42·0–49·5]) and for males was in Lesotho (41·5 years [39·0–44·0]). From 1990 to 2016, global HALE increased by an average of 6·24 years (5·97–6·48) for both sexes combined. Global HALE increased by 6·04 years (5·74–6·27) for males and 6·49 years (6·08–6·77) for females, whereas HALE at age 65 years increased by 1·78 years (1·61–1·93) for males and 1·96 years (1·69–2·13) for females. Total global DALYs remained largely unchanged from 1990 to 2016 (–2·3% [–5·9 to 0·9]), with decreases in communicable, maternal, neonatal, and nutritional (CMNN) disease DALYs offset by increased DALYs due to non-communicable diseases (NCDs). The exemplars, calculated as the five lowest ratios of observed to expected age-standardised DALY rates in 2016, were Nicaragua, Costa Rica, the Maldives, Peru, and Israel. The leading three causes of DALYs globally were ischaemic heart disease, cerebrovascular disease, and lower respiratory infections, comprising 16·1% of all DALYs. Total DALYs and age-standardised DALY rates due to most CMNN causes decreased from 1990 to 2016. Conversely, the total DALY burden rose for most NCDs; however, age-standardised DALY rates due to NCDs declined globally. Interpretation: At a global level, DALYs and HALE continue to show improvements. At the same time, we observe that many populations are facing growing functional health loss. Rising SDI was associated with increases in cumulative years of life lived with disability and decreases in CMNN DALYs offset by increased NCD DALYs. Relative compression of morbidity highlights the importance of continued health interventions, which has changed in most locations in pace with the gross domestic product per person, education, and family planning. The analysis of DALYs and HALE and their relationship to SDI represents a robust framework with which to benchmark location-specific health performance. Country-specific drivers of disease burden, particularly for causes with higher-than-expected DALYs, should inform health policies, health system improvement initiatives, targeted prevention efforts, and development assistance for health, including financial and research investments for all countries, regardless of their level of sociodemographic development. The presence of countries that substantially outperform others suggests the need for increased scrutiny for proven examples of best practices, which can help to extend gains, whereas the presence of underperforming countries suggests the need for devotion of extra attention to health systems that need more robust support.
Article
Full-text available
Objective: The crisis of prescription opioid (PO) related harms has focused attention toward identifying and treating high-risk populations. This review aims to synthesize systematic reviews on the epidemiology and clinical management of comorbid chronic pain and PO or other substance misuse. Methods: A systematic database search was conducted to identify systematic reviews published between 2000 and 2016. Eligible studies were systematic reviews related to chronic non-cancer pain and PO or other substance misuse. Evidence from the included reviews was synthesized according to epidemiology and clinical management themes. Results: Of 1908 identified articles, 18 systematic reviews were eligible for final inclusion. Two meta-analyses estimated the prevalence of chronic non-cancer pain in individuals using POs non-medically to be approximately 48% to 60%, which is substantially higher than the prevalence of chronic non-cancer pain in general population samples (11% to 19%). Five systematic reviews estimated the rates of PO or other opioid use in chronic pain populations with substantial variation in results (0.05% to 81%), likely due to widely varying definitions of dependence, substance use disorder, misuse, addiction, and abuse. Several clinical assessment and treatment approaches were identified, including: standardized assessment instruments; urine drug testing; medication counts; prescription drug monitoring programs; blood level monitoring; treatment agreements; opioid selection; dosing and dispensing strategies; and opioid agonist treatment. However, the reviews commonly noted serious limitations, inconsistencies, and imprecision of studies, and a lack of evidence on effectiveness or clinical utility for the majority of these strategies. Conclusion: Overall, current systematic reviews have found a lack of high-quality evidence or consistent findings on the prevalence, risk factors, and optimal clinical assessment and treatment approaches related to concurrent chronic pain and substance misuse. Given the role of systematic reviews in guiding evidence-based medicine and health policy, there is an urgent need for high-quality primary research to guide future systematic reviews to address the escalating epidemic of harms related to chronic pain and substance misuse.
Article
Full-text available
Background Previous estimates of global palliative care development have not been based on official country data. Aim The World Health Organization Noncommunicable Disease Country Capacity Survey of World Health Organization member state officials monitors countries’ capacities for the prevention and control of noncommunicable diseases. In 2015, for the first time, questions were included on a number of palliative care development metrics to generate baseline data for monitoring global palliative care development. Design Participants were given instructions, a glossary of terms, and 3 months to complete this closed, non-randomized, online survey. Questions were developed through a consultative process with relevant technical World Health Organization departments. Setting/participants Health ministry officials serving as noncommunicable disease focal points from 177 out of 194 (91%) of World Health Organization Member States completed the voluntary survey. Results This survey reveals that (a) a minority (37%) of countries have an operational national policy for noncommunicable diseases that includes palliative care, (b) palliative care is least likely to have funding available compared with other core noncommunicable disease services, and (c) there is a large country-income gradient for palliative care funding, oral morphine availability, and integration of palliative care services at the primary levels of the health system. Conclusion Palliative care for noncommunicable disease patients must be strengthened in a majority of countries. These data provide a baseline for trend measurement of official country-level and global palliative care development. A repeat assessment is taking place in the first half of 2017.
Article
Full-text available
More than 128·6 million people across 33 countries require life-saving humanitarian assistance, 92·8 million of whom are particularly vulnerable. Palliative care, however, has been omitted from efforts to tackle humanitarian crises. Palliative care is, according to WHO, “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering”. We propose holistic palliative care as an integral component of relief strategies.
Article
Full-text available
The UN High-Level Meeting on Non-Communicable Diseases (NCDs) in September, 2011, is an unprecedented opportunity to create a sustained global movement against premature death and preventable morbidity and disability from NCDs, mainly heart disease, stroke, cancer, diabetes, and chronic respiratory disease. The increasing global crisis in NCDs is a barrier to development goals including poverty reduction, health equity, economic stability, and human security. The Lancet NCD Action Group and the NCD Alliance propose five overarching priority actions for the response to the crisis—leadership, prevention, treatment, international cooperation, and monitoring and accountability—and the delivery of five priority interventions—tobacco control, salt reduction, improved diets and physical activity, reduction in hazardous alcohol intake, and essential drugs and technologies. The priority interventions were chosen for their health effects, cost-effectiveness, low costs of implementation, and political and financial feasibility. The most urgent and immediate priority is tobacco control. We propose as a goal for 2040, a world essentially free from tobacco where less than 5% of people use tobacco. Implementation of the priority interventions, at an estimated global commitment of about US$9 billion per year, will bring enormous benefits to social and economic development and to the health sector. If widely adopted, these interventions will achieve the global goal of reducing NCD death rates by 2% per year, averting tens of millions of premature deaths in this decade.
Article
Full-text available
Background The Surprise Question (SQ) identifies patients with palliative care needs. The NECPAL CCOMS-ICO© (NECPAL) tool combines the Surprise Question with additional clinical parameters for a more comprehensive assessment. The capacity of these screening tools to predict mortality is still unknown. Aim To explore the predictive validity of the NECPAL and SQ to determine 12- to 24-month mortality. Design Longitudinal, prospective and observational cohort study. Setting/participants Three primary care centres, one general hospital, one intermediate care centre, and four nursing homes. Population cohort with advanced chronic conditions and limited life prognosis. Patients were classified according to SQ and NECPAL criteria and followed for 24 months. Results Data available to assess 1059 of 1064 recruited patients (99.6%) at 12 and 24 months: 837 patients were SQ+ and 780 were NECPAL+. Mortality rates at 24 months were as follows: 44.6% (SQ+) versus 15.8% (SQ−) and 45.8% (NECPAL+) versus 18.3% (NECPAL−) (p = 0.000). SQ+ and NECPAL+ identification was significantly correlated with 24-month mortality risk (hazard ratios: 2.719 and 2.398, respectively). Both tools were highly sensitive (91.4, CI: 88.7–94.1 and 87.5, CI: 84.3–90.7) with high negative predictive values (84.2, CI: 79.4–89.0 and 81.7, CI: 77.2–86.2), with low specificity and positive predictive value. The prognostic accuracy of SQ and NECPAL was 52.9% and 55.2%, respectively. The predictive validity was slightly better for NECPAL. Conclusion SQ and NECPAL are valuable screening instruments to identify patients with limited life prognosis who may require palliative care. More research is needed to increase its prognostic utility in combination with other parameters.
Article
Full-text available
Multi-disciplinary palliative care is rarely integrated into the public health care system at all levels in Africa. In Kigali, Rwanda, we have developed palliative care services for cancer patients and other incurable diseases, such as renal and heart failure, progressive neurologic diseases, and late stage HIV/AIDS for pediatric and adult patients in a district hospital and linked these services to home care. This article aims to describe palliative care in Rwanda and to address end-of-life care issues in a post-genocide society.
Article
Full-text available
PurposeThe aim of this paper is to review the existing literature related to the management of nausea and vomiting (N & V) in advanced cancer and derive clinical evidence-based recommendations for its management. Methods Available systematic reviews on antiemetic drug effectiveness were used. One generic systematic review of antiemetics in advanced cancer (to 2009) was updated to February 2016. Agreement on recommendations was reached between panel members, and these were voted in favor unanimously by the larger antiemetic committee membership (n = 37). ResultsThe evidence base in this field is minimal with largely poor quality trials or uncontrolled trials and case studies. The level of evidence in most studies is low. The drug of choice for managing N & V in advanced cancer is metoclopramide titrated to effect. Alternative options include haloperidol, levomepromazine, or olanzapine. For bowel obstruction, the recommendation is to use octreotide given alongside an antiemetic (haloperidol) and where octreotide is not an option to use an anticholinergic antisecretory agent. For opioid-induced N & V, no recommendation could be made. Conclusion These new guidelines, based on the existing (but poor) evidence, could help clinicians manage more effectively the complex and challenging symptoms of N & V in advanced cancer.
Article
Full-text available
Health policy instruments such as the public financing of health technologies (e.g., new drugs, vaccines) entail consequences in multiple domains. Fundamentally, public health policies aim at increasing the uptake of effective and efficient interventions and at subsequently leading to better health benefits (e.g., premature mortality and morbidity averted). In addition, public health policies can provide non-health benefits in addition to the sole well-being of populations and beyond the health sector. For instance, public policies such as social and health insurance programs can prevent illness-related impoverishment and procure financial risk protection. Furthermore, public policies can improve the distribution of health in the population and promote the equalization of health among individuals. Extended cost-effectiveness analysis was developed to address health policy assessment, specifically to evaluate the health and financial consequences of public policies in four domains: (1) the health gains; (2) the financial risk protection benefits; (3) the total costs to the policy makers; and (4) the distributional benefits. Here, we present a tutorial that describes both the intent of extended cost-effectiveness analysis and its keys to allow easy implementation for health policy assessment.
Article
Full-text available
Although research on the epidemiology and ecology of Ebola has expanded since the 2014–15 outbreak in West Africa, less attention has been paid to the mental health implications and the psychosocial context of the disease for providers working in primary health facilities (rather than Ebola-specific treatment units). This study draws on 54 qualitative interviews with 35 providers working in eight peripheral health units of Sierra Leone's Bo and Kenema Districts. Data collection started near the height of the outbreak in December 2014 and lasted 1 month. Providers recounted changes in their professional, personal and social lives as they became de facto first responders in the outbreak. A theme articulated across interviews was Ebola’s destruction of social connectedness and sense of trust within and across health facilities, communities and families. Providers described feeling lonely, ostracized, unloved, afraid, saddened and no longer respected. They also discussed restrictions on behaviors that enhance coping including attending burials and engaging in physical touch (hugging, handshaking, sitting near, or eating with colleagues, patients and family members). Providers described infection prevention measures as necessary but divisive because screening booths and protective equipment inhibited bonding or ‘suffering with’ patients. To mitigate psychiatric morbidities and maladaptive coping mechanisms—and to prevent the spread of Ebola—researchers and program planners must consider the psychosocial context of this disease and mechanisms to enhance psychological first aid to all health providers, including those in peripheral health settings.
Article
Full-text available
The rise of opioid prescriptions and associated deaths ('opioid epidemic') in North America has evoked worldwide discussions on the long-term efficacy and safety of long-term opioid therapy (LtOT) for chronic noncancer pain (CNCP). We discuss if the opioid epidemic is a real worldwide or a more North American phenomenon. We consider reasons of the opioid epidemic. We highlight differences in the appraisal of the evidence of recent systematic reviews on LtOT for CNCP of US and European authors. We discuss similarities and differences of recent North American and European guidelines on LtOT for chronic CNCP. We point out potential indications and contraindications of LtOT in CNCP syndromes.
Article
Full-text available
The 2013-2016 Ebola outbreak in Guinea, Liberia and Sierra Leone was the worst in history with over 28 000 cases and 11 000 deaths. Here we examine the psychosocial consequences of the epidemic. Ebola is a traumatic illness both in terms of symptom severity and mortality rates. Those affected are likely to experience psychological effects due to the traumatic course of the infection, fear of death and experience of witnessing others dying. Survivors can also experience psychosocial consequences due to feelings of shame or guilt (e.g. from transmitting infection to others) and stigmatization or blame from their communities. At the community level, a cyclical pattern of fear occurs, with a loss of trust in health services and stigma, resulting in disruptions of community interactions and community break down. Health systems in affected countries were severely disrupted and overstretched by the outbreak and their capacities were significantly reduced as almost 900 health-care workers were infected with Ebola and more than 500 died. The outbreak resulted in an increased need for health services, reduced quality of life and economic productivity and social system break down. It is essential that the global response to the outbreak considers both acute and long-term psychosocial needs of individuals and communities. Response efforts should involve communities to address psychosocial need, to rebuild health systems and trust and to limit stigma. The severity of this epidemic and its long-lasting repercussions should spur investment in and development of health systems.
Article
Full-text available
Background Cancer is responsible for elevated HIV-related morbidity and mortality. Research on HIV-infected patients with concurrent cancer is rare in China. The purpose of our study was to investigate the prevalence and risk factors associated with cancer among HIV-infected inpatients in Beijing, and to investigate the mortality and risk factors among HIV-infected inpatients with cancer. Methods Hospital records from a total of 1946 HIV-infected patients were collected from the Beijing Ditan Hospital. The data, from 2008 to 2013, were collected retrospectively. The cancer diagnoses included AIDS-defining cancers (ADC) and non-AIDS defining cancers (NADC). Logistic regression was used to identify risk factors predicting the concurrence of cancer with HIV. Mortality was examined using Kaplan-Meier estimates and Cox proportional hazards models. Results 7.7 % (149 cases) of all HIV-infected inpatients had concurrent cancer at their first hospital admission; of those, 33.6 % (50 cases) had ADCs, and 66.4 % (99 cases) had NADCs. The most prevalent NADCs were Hodgkin’s lymphoma, gastrointestinal cancer, liver cancer, and lung cancer. Patients who did not accept antiretroviral therapy (ART) were more likely to suffer from cancer [AOR = 2.07 (1.42–3.01), p = 0.001]. Kaplan-Meier curves indicated that the survival probability of HIV-positive cancer patients was significantly lower than that of HIV-positive cancer-free patients (log-rank test, p < 0.001). For patients diagnosed with cancer, the mortality was also higher among those who did not receive ART [AHR = 2.19 (1.84–2.61), p < 0.001]. Conclusion The prevalence of cancer concurrence among hospitalized HIV-infected patients was 7.7 %. Concurrent cancer also increased mortality among HIV-infected patients. ART was protective against concurrent cancer as well as mortality among HIV-infected cancer patients. These results highlight the importance of promoting cancer screening and early ART initiation among HIV-infected patients.
Article
Full-text available
Background Despite opioid analgesics being essential for pain relief, use has been inadequate in many countries. We aim to provide up-to-date worldwide, regional, and national data for changes in opioid analgesic use, and to analyse the relation of impediments to use of these medicines. Methods We calculated defined daily doses for statistical purposes (S-DDD) per million inhabitants per day of opioid analgesics worldwide and for regions and countries from 2001 to 2013, and we used generalised estimating equation analysis to assess longitudinal change in use. We compared use data against the prevalence of some health disorders needing opioid use. We surveyed 214 countries or territories about impediments to availability of these medicines, and used regression analyses to establish the strength of associations between impediments and use. Findings The S-DDD of opioid analgesic use more than doubled worldwide between 2001–03 and 2011–13, from 1417 S-DDD (95% CI −732 to 3565; totalling about 3·01 billion defined daily doses per annum) to 3027 S-DDD (−1162 to 7215; totalling about 7·35 billion defined daily doses per annum). Substantial increases occurred in North America (16 046 S-DDD [95% CI 4032–28 061] to 31 453 S-DDD [8121–54 785]), western and central Europe (3079 S-DDD [1274–4883] to 9320 S-DDD [3969–14 672]), and Oceania (2275 S-DDD [763–3787] to 9136 S-DDD [2508–15 765]). Countries in other regions have shown no substantial increase in use. Impediments to use included an absence of training and awareness in medical professionals, fear of dependence, restricted financial resources, issues in sourcing, cultural attitudes, fear of diversion, international trade controls, and onerous regulation. Higher number of impediments reported was significantly associated with lower use (unadjusted incidence rate ratio 0·39 [95% CI 0·29–0·52]; p<0·0001), but not when adjusted for gross domestic product and human development index (0·91 [0·73–1·14]; p=0·4271). Interpretation Use of opioid analgesics has increased, but remains low in Africa, Asia, Central America, the Caribbean, South America, and eastern and southeastern Europe. Identified impediments to use urgently need to be addressed by governments and international agencies. Funding International Narcotics Control Board, UN.
Article
Since the last comprehensive review on the development of national palliative care in Africa was undertaken 12 years ago, in 2005, we did a scoping review of peer-reviewed, published articles on palliative care development between 2005-16 for each African country. The scoping review was conducted by assessing the medical literature and including local expert recommendations of suggested articles. We did a basic quality assessment of the articles using the journals' impact factor, journal quartile, and the number of citations as suitable metrics for quality consideration. Articles published in English, Spanish, Portuguese, and French that mentioned at least one dimension of WHO's palliative care public health strategy (implementation of services, education, policies, or medicine availability) and vitality (activity by professionals or advocates) were included. Of the 518 articles found, 49 met the inclusion criteria. Information on 26 (48%) of 54 African countries was found. Most services were concentrated in Kenya, South Africa, and Uganda, and 14 (26%) countries showed an increase in services during this timeframe. Stand-alone palliative care policies exist in Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe. Postgraduate diplomas in palliative care are available in Kenya, South Africa, Uganda, and Tanzania. Restricted access to opioids, prescriber restriction laws, and a low prevalence of morphine use remain common barriers to adequate palliative care provision. Although information on palliative care is unevenly distributed, the available information showed an increased development of palliative care services in a subset of African countries. Despite this growth, however, there is still minimal to no identified palliative care development in most African countries.
Book
For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life. © 2015 by the National Academy of Sciences. All rights reserved.
Article
Each year for nearly two decades, the Pain & Policy Studies Group (PPSG) has received from the International Narcotics Control Board, the global monitoring body for the implementation of the United Nations international drug control conventions, consumption data for six principal opioids used to treat moderate and severe pain: fentanyl, hydromorphone, methadone, morphine, oxycodone, and pethidine. To provide these statistics to a wider audience, PPSG developed an extensive section of its Web site featuring these data in the form of global, regional, and individual country graphs. In recent years, PPSG developed and launched three new interactive Web features for exploring opioid consumption data and generating hypotheses about patterns of opioid consumption. In July 2016, PPSG announced the addition of a new tool on its Web site to explore opioid consumption data: custom consumption graphs for opioid medicines. This tool allows users to select, customize, and create charts of the opioid consumption data and download them for use in presentations or publications. PPSG encourages colleagues to use these tools to explore and study these data to inform their work to improve the accessibility and availability of these important medicines.
Chapter
Pain relief in sub-Saharan Africa and other low-/middle-income countries is an urgent clinical and public health challenge due to the high HIV prevalence, comparatively fewer health resources, and poorer drug availability. We review the available data on pain prevalence and intensity and describe the meaning of the concept of “total pain” in these diverse cultural contexts with high levels of physical, psychological, and social care needs. We report evidence on the importance of pain relief to patients and the public and describe successful efforts to overcome challenges in drug availability. For clinicians, we describe the available and commonly used pain measurement tool validated in Africa. Lastly, we signpost the free online available resources developed within sub-Saharan Africa to guide clinical practice for effective pain relief.
Article
Objective The objectives of the present study were to describe and compare the characteristics and reports of end-of-life experiences (ELEs) by healthcare professionals at different institutions and to investigate the influence of religious beliefs on these reports. Method A multicenter study was carried out in Brazil that included six nursing homes (NHs), a cancer hospital (ONC), and a palliative care (PC) unit. Sociodemographic data, ELE reports (Fenwick's questionnaire), religiosity (the Duke Religion Index), spirituality (the Spirituality Self-Rating Scale), and mental health (the DASS-21 questionnaire) were assessed. The analysis was performed using ANOVA and chi-square tests in order to compare ELE perceptions in these different settings. Results A total of 133 healthcare professionals (46 ONC, 36 PC, and 51 NH) were interviewed, 70% of whom recounted at least one ELE report in the previous five years. The most common ELEs were “visions of dead relatives collecting the dying person” (88.2%), “a desire to mend family rifts” (84.9%), and “visions of dead relatives near the bed providing emotional comfort” (80.6%). Most healthcare professionals (70–80%) believed that these experiences had a spiritual significance and were not due to biological effects. Comparison among settings revealed that those working in the PC unit had more reports, a greater openness about the issue, and more interest in training. Individual religious beliefs had no influence on perception of ELEs. Significance of Results Our study revealed that ELE reports are not uncommon in clinical practice and seem to be little influenced by religious or spiritual beliefs. Although strongly reported in all settings, palliative care professionals tend to be more open to this issue and have a stronger perception of ELEs.
Article
Context: The need for children's palliative care (CPC) globally is unknown. In order to understand the scope of the need and to advocate to meet it, more accurate estimates are needed. Objectives: To create an accurate global estimate of the worldwide need for CPC based on a representative sample of countries from all regions of the world and all World Bank income groups. Methods: This work builds on previously published methods developed by the International Children's Palliative Care Network, UNICEF, and WHO and tested in three African countries. The study used a cross-sectional design with quantitative data obtained from primary and secondary data sources. Estimation of the need used prevalence data from the Institute for Health Metrics and Evaluation, mortality data from the WHO for the specific diseases known to require CPC, and UNAIDS data on HIV prevalence. Representative data were analyzed for twenty-three countries representing 59.5% of the world's population. Results: The findings show estimated need for children's palliative care ranged from almost 120 per 10,000 children in Zimbabwe to slightly more than 20 per 10,000 in the United Kingdom. Overall, among the over 21 million with conditions that will benefit annually from a palliative care approach, more than 8 million need specialized children's palliative care worldwide. Conclusion: The estimation of need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage.
Article
Objective . The goal of this study was to elucidate the attitudes, beliefs, and barriers interfering with cancer pain management, the degree of barrier interference with trainees’ care of patients, and the relationships among prohibitive factors to pain management for physicians in a low–middle-income countries (LMICs) vs high-income countries (HICs). Design and Setting . A multi-institutional cross-sectional survey of physicians in specialties with a focus in pain management training was performed. All surveys were completed anonymously from July 1, 2015, to November 30, 2015. Subjects . One hundred and twenty physicians participated in the survey. Methods . Surveys were based on prior questionnaires published in the literature. Descriptive statistics were calculated, and chi-square (ℵ ² ) analysis, Fisher’s exact test, and Spearman rank correlation analyses were performed. Results . Compared with their peers in HICs, physicians in LMICs reported less experience with cancer pain management despite seeing more cancer patients with advanced disease (41% vs 15.2%, p < 0.05). Some barriers were common to both environments, but a few were unique to each setting. Organized by percentage of severity of interference, cultural values/beliefs about pain (84% vs 76%) and lack of training and expertise (87% vs 78%) were significantly more prohibitive for physicians in LMICs than those in HICs; p < 0.05. Conclusion. There are significant differences in perceived barriers and degree of prohibitive factors to cancer pain management among trainee physicians in low- vs high-resource environments. Understanding these differences may spur further collaboration in the design of contextually relevant solutions, which could potentially help improve the adequacy of cancer pain management
Article
Importance: Evidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes. Objective: To inform how payers and providers should identify patients with "advanced illness" and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system. Evidence review: Systematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015). Results: Randomized controlled trials (124) met inclusion criteria. The majority of studies in cancer (49%, 38 of 77 studies) demonstrated statistically significant patient or caregiver outcomes (e.g., p < 0.05), as did those in congestive heart failure (CHF) (62%, 13 of 21), chronic obstructive pulmonary disease (COPD; 58%, 11 of 19), and dementia (60%, 15 of 25). Most prognostic criteria used clinicians' judgment (73%, 22 of 30). Most interventions included a nurse (70%, 69 of 98), and many were nurse-only (39%, 27 of 69). Social workers were well represented, and home-based approaches were common (56%, 70 of 124). Home interventions with visits were more effective than those without (64%, 28 of 44; vs. 46%, 12 of 26). Interventions improved communication and care planning (70%, 12 of 18), psychosocial health (36%, 12 of 33, for depressive symptoms; 41%, 9 of 22, for anxiety), and patient (40%, 8 of 20) and caregiver experiences (63%, 5 of 8). Many interventions reduced hospital use (65%, 11 of 17), but most other economic outcomes, including costs, were poorly characterized. Palliative care teams did not reliably lower healthcare costs (20%, 2 of 10). Conclusions: Palliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.
Article
Background/purpose: It is important to confirm product use effects on skin health for products intended for prolonged skin contact. This study compared experimental and marketed reference adult incontinence protective underwear. Methods: Randomized, single-blind (examiner), parallel study evaluating skin health effects in predominantly obese incontinent women normally using protective underwear (approximately 20% Type II Diabetes). Subjects wore experimental or marketed reference protective underwear daily, 14 consecutive days. Visual skin grading, transepidermal water loss (TEWL) assessed before, after 1 and 2 weeks of product wear. Overall assessment of comfort assessed. Results: Of the 122 subjects (60 experimental and 62 marketed reference), 22 were diabetic and 88 were postmenopausal. Under the conditions of this study, there were no statistically significant differences in overall change from baseline for visual grading and TEWL between the experimental product and the marketed reference product for all subjects. Changes from baseline for skin erythema and skin marking were generally small for both products for all subjects as well as for both diabetics and non-diabetics. There were no serious adverse events (AEs), and no withdrawals due to AEs. Overall comfort assessments of size and fit were 'just right,' and skin comfort in the leg, waist and crotch areas were 'comfortable' or 'very comfortable' for both products. Conclusions: In-use 14-day testing demonstrated few statistical differences between experimental product with unique odor neutralizing technology and currently marketed product for skin assessments and comfort. Both products were comfortable and well-tolerated.
Article
Remarkable gains have been made in global health in the past 25 years, but progress has not been uniform. Mortality and morbidity from common conditions needing surgery have grown in the world’s poorest regions, both in real terms and relative to other health gains. At the same time, development of safe, essential, life-saving surgical and anaesthesia care in low-income and middle-income countries (LMICs) has stagnated or regressed. In the absence of surgical care, case-fatality rates are high for common, easily treatable conditions including appendicitis, hernia, fractures, obstructed labour, congenital anomalies, and breast and cervical cancer. In 2015, many LMICs are facing a multifaceted burden of infectious disease, maternal disease, neonatal disease, non-communicable diseases, and injuries. Surgical and anaesthesia care are essential for the treatment of many of these conditions and represent an integral component of a functional, responsive, and resilient health system. In view of the large projected increase in the incidence of cancer, road traffic injuries, and cardiovascular and metabolic diseases in LMICs, the need for surgical services in these regions will continue to rise substantially from now until 2030. Reduction of death and disability hinges on access to surgical and anaesthesia care, which should be available, affordable, timely, and safe to ensure good coverage, uptake, and outcomes. Despite growing need, the development and delivery of surgical and anaesthesia care in LMICs has been nearly absent from the global health discourse. Little has been written about the human and economic effect of surgical conditions, the state of surgical care, or the potential strategies for scale-up of surgical services in LMICs. To begin to address these crucial gaps in knowledge, policy, and action, the Lancet Commission on Global Surgery was launched in January, 2014. The Commission brought together an international, multi- disciplinary team of 25 commissioners, supported by advisors and collaborators in more than 110 countries and six continents. We formed four working groups that focused on thedomains of health-care delivery and management; work-force, training, and education; economics and finance; and information management. Our Commission has five key messages, a set of indicators and recommendations to improve access to safe, affordable surgical and anaesthesia care in LMICs, and a template for a national surgical plan.
Article
The 'war on drugs' has left many in developing nations with no access to strong painkillers. But governments in these countries are learning to stop worrying and love the poppy.
Article
Importance To our knowledge, this is the first placebo-controlled randomized clinical trial to evaluate the efficacy of antidepressant pharmacotherapy, with and without complicated grief psychotherapy, in the treatment of complicated grief. Objective To confirm the efficacy of a targeted complicated grief treatment (CGT), determine whether citalopram (CIT) enhances CGT outcome, and examine CIT efficacy without CGT. Design, Setting, and Participants Included in the study were 395 bereaved adults who met criteria for CG recruited from March 2010 to September 2014 from academic medical centers in Boston, Massachusetts; New York, New York; Pittsburgh, Pennsylvania; and San Diego, California. Co-occurring substance abuse, psychosis, mania, and cognitive impairment were exclusionary. Study participants were randomized using site-specific permuted blocks stratified by major depression into groups prescribed CIT (n = 101), placebo (PLA; n = 99), CGT with CIT (n = 99), and CGT with PLA (n = 96). Independent evaluators conducted monthly assessments for 20 weeks. Response rates were compared under the intention-to-treat principle, including all randomized participants in a logistic regression with inverse probability weighting. Interventions All participants received protocolized pharmacotherapy optimized by flexible dosing, psychoeducation, grief monitoring, and encouragement to engage in activities. Half were also randomized to receive manualized CGT in 16 concurrent weekly sessions. Main Outcomes and Measures Complicated grief–anchored Clinical Global Impression scale measurments every 4 weeks. Response was measured as a rating of “much improved” or “very much improved.” Results Of the 395 study participants, 308 (78.0%) were female and 325 (82.3%) were white. Participants’ response to CGT with PLA vs PLA (82.5% vs 54.8%; relative risk [RR], 1.51; 95% CI, 1.16-1.95; P = .002; number needed to treat [NNT], 3.6) suggested the efficacy of CGT, and the addition of CIT did not significantly improve CGT outcome (CGT with CIT vs CGT with PLA: 83.7% vs 82.5%; RR, 1.01; 95% CI, 0.88-1.17; P = .84; NNT, 84). However, depressive symptoms decreased significantly more when CIT was added to treatment (CGT with CIT vs CGT with PLA: model-based adjusted mean [standard error] difference, −2.06 [1.00]; 95% CI, −4.02 to −0.11; P = .04). By contrast, adding CGT improved CIT outcome (CIT vs CGT with CIT: 69.3% vs 83.7%; RR, 1.21; 95% CI, 1.00-1.46; P = .05; NNT, 6.9). Last, participant response to CIT was not significantly different from PLA at week 12 (45.9% vs 37.9%; RR, 1.21; 95% CI, 0.82-1.81; P = .35; NNT, 12.4) or at week 20 (69.3% vs 54.8%; RR, 1.26; 95% CI, 0.95-1.68; P = .11; NNT, 6.9). Rates of suicidal ideation diminished to a substantially greater extent among participants receiving CGT than among those who did not. Conclusions and Relevance Complicated grief treatment is the treatment of choice for CG, and the addition of CIT optimizes the treatment of co-occurring depressive symptoms. Trial Registration clinicaltrials.gov Identifier: NCT01179568
Article
Background: Many patients around the globe do not have access to pain treatment. A series of workshops on the availability and rational use of opioids in Latin America (LA) were implemented. Aim: To evaluate the effectiveness of action plans (APs) resulting from workshops to eliminate barriers to the availability and accessibility of opioids in 13 Latin American countries (Bolivia, Chile, Colombia, Costa Rica, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Nicaragua, Panama, Peru, and Venezuela). Effectiveness was measured qualitatively and quantitatively. Methods: A cross-sectional study was conducted from September to October 2015. Outcome variables were qualitative: the country coordinators (CCs) perceived workshop benefit and effectiveness and ability to implement the resulting AP and quantitative: (1) 2013 opioid consumption; (2) opioid consumption change from 2010 to 2013; (3) formulations available. For analysis we used nonparametric tests [Wilcoxon, Mann-Whitney, Spearman correlation (Rs)] and content analysis. Results: Qualitative: 10 CCs rated the workshop very useful or useful and the resulting AP helpful in eliminating barriers. Communication/collaboration with regulators improved in 11 countries. Content, organization, and methodology were rated positively. Quantitative: no significant difference was found between countries that had one, two, or no workshops and the outcome variables. A positive significant correlation was found between Human Development Index and consumption (Rs [Spearman's rank correlation coefficient] = 0.688; p = 0.009) and in consumption changes: (Rs = 0.445; p = 0.128), but not in number of formulations available. Discussion: The APs were rated useful in eliminating barriers but only four countries were able to implement >75% of their APs, which may suggest that the barriers were overwhelming and beyond their means to eliminate. Conclusion: Limited access to pain treatment is multifactorial, including restrictive laws and regulations. Strategies to eliminate barriers need to be broad and include clinical and government representatives to be effective. It may take several years before results are observed.
Chapter
Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional study designs. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.
Article
The epidemic of opioid abuse is related in part to incomplete understanding of pain-relief management, opioid tolerance, and opioid addiction. Among the prevention strategies are more widespread sharing of data about opioid neuropharmacology and opioid-use patterns.
Article
Health systems vary widely in performance, and countries with similar levels of income, education and health expenditure differ in their ability to attain key health goals. This paper proposes a framework to advance the understanding of health system performance. A First step is to define the boundaries of the health system, based on the concept of health action. Health action is defined as any set of activities whose primary intent is to improve or maintain health. Within these boundaries, the concept of performance is centred around three fundamental goals: improving health, enhancing responsiveness to the expectations of the population, and assuring fairness of financial contribution. Improving health means both increasing the average health status and reducing health inequalities. Responsiveness includes two major components: (a) respect for persons (including dignity, confidentiality and autonomy of individuals and families to decide about their own health); and (b) client orientation (including prompt attention, access to social support networks during care, quality of basic amenities and choice of provider). Fairness of financial contribution means that every household pays a fair share of the total health bill for a country (which may mean that very poor households pay nothing at all). This implies that everyone is protected from financial risks due to health care. The measurement of performance relates goal attainment to the resources available. Variation in performance is a function of the way in which the health system organizes four key functions: stewardship (a broader concept than regulation); financing (including revenue collection, fund pooling and purchasing); service provision (for personal and non-personal health services); and resource generation (including personnel, facilities and knowledge). By investigating these four functions and how they combine, it is possible not only to understand the proximate determinants of health system performance, but also to contemplate major policy challenges.
Article
Purpose: Patients with cancer are more likely to file for bankruptcy than the general population, but the impact of severe financial distress on health outcomes among patients with cancer is not known. Methods: We linked Western Washington SEER Cancer Registry records with federal bankruptcy records for the region. By using propensity score matching to account for differences in several demographic and clinical factors between patients who did and did not file for bankruptcy, we then fit Cox proportional hazards models to examine the relationship between bankruptcy filing and survival. Results: Between 1995 and 2009, 231,596 persons were diagnosed with cancer. Patients who filed for bankruptcy (n = 4,728) were more likely to be younger, female, and nonwhite, to have local- or regional- (v distant-) stage disease at diagnosis, and have received treatment. After propensity score matching, 3,841 patients remained in each group (bankruptcy v no bankruptcy). In the matched sample, mean age was 53.0 years, 54% were men, mean income was $49,000, and majorities were white (86%), married (60%), and urban (91%) and had local- or regional-stage disease at diagnosis (84%). Both groups received similar initial treatments. The adjusted hazard ratio for mortality among patients with cancer who filed for bankruptcy versus those who did not was 1.79 (95% CI, 1.64 to 1.96). Hazard ratios varied by cancer type: colorectal, prostate, and thyroid cancers had the highest hazard ratios. Excluding patients with distant-stage disease from the models did not have an effect on results. Conclusion: Severe financial distress requiring bankruptcy protection after cancer diagnosis appears to be a risk factor for mortality. Further research is needed to understand the process by which extreme financial distress influences survival after cancer diagnosis and to find strategies that could mitigate this risk.
Book
Does health care save lives? Commentators such as McKeown and Illich, writing in the 1960s, argued that it played very little part, and might even be harmful. However they were writing about a period when health care had relatively little to offer compared to today. Since then, several writers have described often quite substantial improvements in death rates from conditions for which effective interventions have been introduced. But the debate continues, with some arguing that health care is making an increasingly important impact on overall levels of health while others contend that it is in the realm of broader policies, such as education, transport and housing, that we should look to for future advances in health. Inevitably this is to a considerable extent a false dichotomy. Both are important. But how much does health care contribute to population health? One way in which this question has been addressed previously is to look at deaths that should not occur in the presence of effective and timely health care, so-called ‘avoidable’ mortality. However much of this work was undertaken in the 1980s and early 1990s, since when health care has advanced considerably. In addition, ‘avoidable’ deaths were often limited to those before, for example, the age of 65, a figure that seems inappropriately low in the light of life expectancies that are now about 80 in many countries. In this review we have traced the evolution of the concept of ‘avoidable’ mortality from its inception in the 1970s. We have undertaken a detailed methodological critique of this concept, examining questions of attribution, issues relating to comparisons over time and place, and relationships with other indicators of health service provision. To help future researchers we have produced a comprehensive, annotated review of the work that has been undertaken worldwide so far. We note that ‘avoidable’ mortality was never intended to be more than an indicator of potential weaknesses in health care that can then be investigated in more depth. We describe examples of where this approach has been successful, drawing attention to problems that might otherwise have been missed. In contrast, many of the critics of ‘avoidable’ mortality, or more specifically, mortality amenable to health care (amenable mortality), have asked that it do something it was not intended to do, to be a definitive source of evidence of differences in effectiveness of health care. Thus, it is not unexpected that studies seeking to link amenable mortality with health care resources have failed to do so, especially when undertaken within countries, although it is notable that where gross differences exist, as between western and eastern Europe, the gap in amenable mortality is especially high. For these reasons, it seems justifiable to continue and extend the extensive body of research that has already been undertaken to look at ‘avoidable’ mortality, updating the list of conditions included to reflect the changing scope of health care and extending the age limit to reflect increasing expectation of life. However it must be recognised that the concept of ‘avoidable’ mortality does have important limitations, relating to comparability of data, attribution of causes, and coverage of the range of health outcomes. Comparisons of health system performance are now firmly on the international policy agenda, especially since the publication of the 2000 World Health Report. Incorporation of concept of mortality amenable to medical care into the methodology used to generate the rankings of health systems in that report would be an advance on the current situation. We show how, within Europe, this would lead to different rankings from those based on overall disability adjusted life expectancy, which is used in the current rankings. However, any approach based on aggregate data would not address one of the major criticisms of such comparisons, that they do not indicate what needs to be done when faced with evidence of sub-optimal performance. This requires a more detailed analysis of the specific issues facing health systems. Here we propose a new method, in which analyses of amenable mortality identify areas of potential concern that are then examined in more detail by studying the processes and outcomes of care for tracer conditions, selected on the basis of their ability to assess a wide range of health system components. The second part of the review applies the refined method of amenable mortality analysis to patterns of mortality in the countries of the European Union over the past two decades. This shows that deaths that could be prevented by timely and effective care were still relatively common in many countries in 1980. Reductions in these deaths contributed substantially to the overall change in life expectancy between birth and age 75 during the 1980s. The largest contribution was from falling infant mortality but in some countries reductions in deaths among the middle aged was equally or even more important. These countries were Denmark, The Netherlands, the United Kingdom, France (for men) and Sweden (for women). In contrast, during the 1990s, reductions in amenable mortality made a somewhat smaller contribution to improved life expectancy, especially in the northern European countries. However they remained important in southern Europe, especially in Portugal and Greece, where the initial death rates had been higher. These findings provide clear evidence that improvements in access to effective health care have had a measurable impact in many countries during the 1980s and 1990s, in particular through reductions in infant mortality and in deaths among the middle aged and elderly, especially women. However the scale of impact has, to a considerable extent, reflected the starting point. Thus, those countries where infant mortality was relatively high at the beginning of the 1980s, and which had the greatest scope for improvement, such as Greece and Portugal, unsurprisingly saw the greatest reductions in amenable mortality in infancy. In contrast, in countries with infant mortality rates that had already reached very low rates by the beginning of the 1990s, such as Sweden, the scope for further improvement was small. Similarly, the scope for improvement in amenable deaths in adulthood was greatest in those countries where initial rates were highest. The corollary of this is that as rates fall in all countries, the extent of variation decreases. As a consequence, it seems likely that, in the 21st century, the ability to compare health system performance using mortality data at the aggregate level is likely to be limited, simply because the differences will be relatively small. This does not, however, mean that there is not scope for analyses that use amenable mortality rates to screen for potential problems that can then be explored in more depth. It also does not exclude the use of amenable mortality to gain new insights into inequalities in access to care within populations.
Article
This study draws upon the methodology of the 1993 World Development Report: Investing in Health to provide analyses of the burden of disease and cost-effectiveness of health interventions. The analysis aims to provide a common framework for the activities of the government of Guinea in prioritizing health care services. The burden of disease analysis presents detailed estimates of mortality in Guinea, by cause of death in 1992, using a new, rapid methodology. The cost-effectiveness analysis compares the costs of forty interventions selected from treatment protocols at health centers, health posts and first referral hospitals' health care intervention with their health impact. These two methodologies complement other methods to measure health system performance. The results of the burden of disease study underscore the need for national health care planners and international donors to focus on diseases that cause the most premature deaths. In 1992, the largely avoidable or treatable communicable disease, maternal, and malnutrition diseases together accounted for 86,400 deaths or seventy percent of all deaths and, with perinatal disease, account for nine in ten deaths before age five. Injuries caused 9,000 deaths (seven percent) and non communicable diseases caused 28,700 deaths (twenty-three percent). Many deaths among the economically-productive adult age group could be also avoided. Detailed data on years of life lost, simplified estimates of years lived with a disability, a comparison to other regions, and estimates of the impact of population growth on burden of disease support these findings. The cost-effectiveness analysis suggests that several affordable interventions already exist for the major causes of death in Guinea. Communicable, maternal, and perinatal diseases, the largest causes of death in Guinea, are subject to several highly cost-effective curative interventions. Those costing less than about one hundred dollars per year of life saved include treatment of childhood pneumonia, rehydration therapy for diarrhea at health centers and at health posts, treatment of childhood malaria at health centers, childhood vaccination at health centers, short-course tuberculosis treatment at health centers, treatment of sexually-transmitted diseases at health centers, and impregnated bed nets against malaria. Maternal and perinatal diseases have slightly less cost-effective interventions, involving prenatal and delivery care at health centers or programs using out reach trained birth attendants. The report concludes with one possible minimum package of health services that includes outreach preventive programs and a package of curative treatments at health center and hospital levels. The total package of services would cost about thirteen dollars per capita and would address about sixty percent of total years of life lost. The analysis confirms that provision of a basic package of health services will require substantial increases in funding from the government of Guinea and donors. The minimum package is about three times the public per capita expenditure of four dollars. The core set of interventions at the outreach, health center, and first referral hospital level, should be the priority for the government of Guinea as it plans further health system reforms.