Availability and Affordability of Essential Palliative Care Medicines in Nepal: A Cross-Sectional Study.

CONTEXT: The government of Nepal adopted the 2017 Nepalese National Strategy for Palliative Care (NSPC), which proposed that Essential Palliative Care Medicines (EPCMs) listed by the International Association for Hospice and Palliative Care (IAHPC) should be available at each healthcare institution. In 2017 after the issuing of NSPC, the Lancet Commission developed an EPCM list. OBJECTIVES: To evaluate the inclusion of EPCMs recommended by both IAHPC and Lancet in national medicinal programmes, their availability, and affordability in Nepal. METHODS: A cross-sectional descriptive study of the availability of EPCMs in Nepal, and their inclusion in the national essential medicines list, government health insurance medicines list, government fixed rate medicines list, and free medicines list. Affordability was assessed using the World Health Organization Daily-Define-Dose and the Nepal Government-defined minimum daily wage. RESULTS: A total of 27 of 33 (82%) of the IAHPC-EPCMs and 41 of 60 (68%) of the recommended formulations were available in Nepal. All the Lancet Commission recommended EPCMs were available in Nepal. Morphine was available in all formulations used in palliative care. 22%, 18%, and 10% of IAHPC-EPCMs were available cost-free via district hospitals, primary healthcare centers, and health posts, respectively. The government had not included opioids on both free and fixed price lists. A total of 24 of 33 (73%) IAHPC-EPCMs were available on the Government Health Insurance Medicines List. A total of 19 of 41 (46%) available EPCMs were affordable. CONCLUSION: Many EPCM formulations included in NSPC of Nepal are not available, and most available EPCMs are unaffordable if purchased out-of-pocket. While the availability is better with the government health insurance scheme, many people are not registered for this. Further improvements should follow the development of a Nepalese palliative care formulary.

Palliative care delivery in India during COVID-19 pandemic: role of faith-based hospitals - a qualitative study.

OBJECTIVES: The COVID-19 pandemic challenged palliative care (PC) services globally. We studied the ways healthcare professionals (HCPs) working in faith-based hospitals (FBHs) experienced and adapted care through the pandemic, and how this impacted patients with PC needs. METHODS: In-depth interviews were conducted with HCPs from FBHs serving rural and urban population across India. Thematic analysis was conducted. RESULTS: A total of 10 in-depth interviews were conducted during the COVID-19 pandemic, first wave (4), second wave (4) and between them (2). HCPs described fear and stigma in the community early in the pandemic. Migrant workers struggled, many local health services closed and cancer care was severely affected. Access and availability of healthcare services was better during the second wave. During both waves, FBHs provided care for non-COVID patients, earning community appreciation. For HCPs, the first wave entailed preparation and training; the second wave was frightening with scarcity of hospital beds, oxygen and many deaths. Eight of the 10 FBHs provided COVID-19 care. PC teams adapted services providing teleconsultations, triaging home visits, delivering medications, food at home, doing online teaching for adolescents, raising funds. Strengths of FBHs were dedicated teamwork, staff care, quick response and adaptations to community needs, building on established community relationship. CONCLUSION: FBHs remained open and continued providing consistent, good quality, person-centred care during the pandemic. Challenges were overcome innovatively using novel approaches, often achieving good outcomes despite limited resources. By defining and redefining quality using a PC lens, FBHs strengthened patient care services.

A Global Collaboration to Develop and Pilot Test a Mobile Application to Improve Cancer Pain Management in Nepal.

Introduction: Quality palliative care, which prioritizes comfort and symptom control, can reduce global suffering from non-communicable diseases, such as cancer. To address this need, the Nepalese Association of Palliative Care (NAPCare) created pain management guidelines (PMG) to support healthcare providers in assessing and treating serious pain. The NAPCare PMG are grounded in World Health Organization best practices but adapted for the cultural and resource context of Nepal. Wider adoption of the NAPCare PMG has been limited due to distribution of the guidelines as paper booklets. Methods: Building on a long-standing partnership between clinicians and researchers in the US and Nepal, the NAPCare PMG mobile application ("app") was collaboratively designed. Healthcare providers in Nepal were recruited to pilot test the app using patient case studies. Then, participants completed a Qualtrics survey to evaluate the app which included the System Usability Scale (SUS) and selected items from the Mobile App Rating Scale (MARS). Descriptive and summary statistics were calculated and compared across institutions and roles. Regression analyses to explore relationships (α = 0.05) between selected demographic variables and SUS and MARS scores were also conducted. Results: Ninety eight healthcare providers (n = 98) pilot tested the NAPCare PMG app. Overall, across institutions and roles, the app received an SUS score of 76.0 (a score > 68 is considered above average) and a MARS score of 4.10 (on a scale of 1 = poor, 5 = excellent). 89.8% (n = 88) "agreed" or "strongly agreed" that the app will help them better manage cancer pain. Age, years of experience, and training in palliative care were significant in predicting SUS scores (p-values, 0.0124, 0.0371, and 0.0189, respectively); institution was significant in predicting MARS scores (p = 0.0030). Conclusion: The NAPCare PMG mobile app was well-received, and participants rated it highly on both the SUS and MARS. Regression analyses suggest end-user variables important to consider in designing and evaluating mobile apps in lower resourced settings. Our app design and pilot testing process illustrate the benefits of cross global collaborations to build research capacity and generate knowledge within the local context.

A survey of cancer care institutions in Nepal to inform design of a pain management mobile application.

BACKGROUND: One way to improve the delivery of oncology palliative care in low and middle-income countries (LMICs) is to leverage mobile technology to support healthcare providers in implementing pain management guidelines (PMG). However, PMG are often developed in higher-resourced settings and may not be appropriate for the resource and cultural context of LMICs. OBJECTIVES: This research represents a collaboration between the University of Virginia and the Nepalese Association of Palliative Care (NAPCare) to design a mobile health application ('app') to scale-up implementation of existing locally developed PMG. METHODS: We conducted a cross-sectional survey of clinicians within Nepal to inform design of the app. Questions focused on knowledge, beliefs, and confidence in managing cancer pain; barriers to cancer pain management; awareness and use of the NAPCare PMG; barriers to smart phone use and desired features of a mobile app. FINDINGS: Surveys were completed by 97 palliative care and/or oncology healthcare providers from four diverse cancer care institutions in Nepal. 49.5% (n = 48) had training in palliative care/cancer pain management and the majority (63.9%, n = 62) reported high confidence levels (scores of 8 or higher/10) in managing cancer pain. Highest ranked barriers to cancer pain management included those at the country/cultural level, such as nursing and medical school curricula lacking adequate content about palliative care and pain management, and patients who live in rural areas experiencing difficulty accessing healthcare services (overall mean = 6.36/10). Most nurses and physicians use an Android Smart Phone (82%, n = 74), had heard of the NAPCare PMG (96%, n = 88), and reported frequent use of apps to provide clinical care (mean = 6.38/10, n = 92). Key barriers to smart phone use differed by discipline, with nurses reporting greater concerns related to cost of data access (70%, n = 45) and being prohibited from using a mobile phone at work (61%; n = 39). CONCLUSIONS: Smart phone apps can help implement PMG and support healthcare providers in managing cancer pain in Nepal and similar settings. However, such tools must be designed to be culturally and contextually congruent and address perceived barriers to pain management and app use.

'COVID-19 and palliative medicine: faith-based hospitals in India'.

OBJECTIVES: Faith-based organisations (FBOs) in India provide health services particularly to marginalised communities. We studied their preparedness and delivery of palliative care during COVID-19 as part of a mixed-method study. We present the results of an online questionnaire. METHODS: All FBOs providing palliative care in India were invited to complete an online questionnaire. Descriptive analysis was undertaken. RESULTS: Response rate was 46/64 (72%); 44 provided palliative care; 30/44 (68%) were in rural or semiurban areas with 10-2700 beds. Fifty-two per cent (23/44) had dedicated palliative care teams and 30/44 (68%) provided it as part of general services; 17/44 (39%) provided both. 29/44 (66%) provided palliative care for cancer patients; 17/44 (34%) reported that this was more than half their workload.The pandemic led to reduced clinical work: hospital 36/44 (82%) and community 40/44 (91%); with reduction in hospital income for 41/44 (93%). 18/44 (44%) were designated government COVID-19 centres; 11/40 (32%) had admitted between 1 and 2230 COVID-19 patients.COVID-19 brought challenges: 14/44 (32%) lacked personal protective equipment; 21/44 (48%) had reduced hospital supplies and 19/44 (43%) lacked key medications including morphine. 29/44 (66%) reported reduction in palliative care work; 7/44 (16%) had stopped altogether. Twenty-three per cent (10/44) reported redeployment of palliative care teams to other work. For those providing, palliative care 32/37 (86%) was principally for non-COVID patients; 13/37 (35%) cared for COVID-19 patients. Service adaptations included: teleconsultation, triaged home visits, medication delivery at home and food supply. CONCLUSIONS: FBOs in India providing palliative care had continued to do so despite multiple challenges. Services were adapted to enable ongoing patient care. Further research is exploring the effects of COVID-19 in greater depth.

The Need for Palliative Care in Adults in Nepal: Projections Based on Modeling Mortality Data.

AIMS: With noncommunicable diseases rising in prevalence, Nepal has a significant need for palliative care, but little research has been conducted to evaluate this in depth. This study aimed to generate a quantified estimate of the projected need for palliative care in Nepal. SUBJECTS AND METHODS: The World Health Organization mortality rates were multiplied by the percentage pain prevalence for each disease, to produce an estimate, by disease, of the number of adults requiring palliative care at the end of life. These projections were then broken down for the rural and urban populations. Experts were consulted on the findings to explore how their insight from experience compared to the figures generated. RESULTS: Estimates found that there were a total of 58,000 adults needing palliative care in Nepal in 2012. Cardiovascular disease represented the greatest need (21,249) followed by cancer and chronic obstructive pulmonary disease. The majority of those requiring palliative care were found to be in rural areas. However, the majority of provision currently is for cancer in urban areas. Professionals consulted felt that the results were likely to be representative, although many responded that this was a minimum estimate and with more raw data and more diseases included, the figures could be far higher. CONCLUSIONS: The need for palliative care is great and is mostly represented by cardiovascular and respiratory disease in rural areas. Provision must be adapted and developed to meet this need, but more primary data is needed to inform such decisions.

Integrated management of non-communicable diseases in low-income settings: palliative care, primary care and community health synergies.

Palliative care is recognised as a fundamental component of Universal Health Coverage (UHC), which individual countries, led by the United Nations and the WHO, are committed to achieving worldwide by 2030-Sustainable Development Goal (SDG) 3.8. As the incidence of non-communicable diseases (NCD) in low-income and middle-income countries (LMICs) increases, their prevention and control are the central aspects of UHC in these areas. While the main focus is on reducing premature mortality from NCDs (SDG 3.4), palliative care is becoming increasingly important in LMICs, in which 80% of the need is found. This paper discusses the challenges of providing comprehensive NCD management in LMICs, the role of palliative care in addressing the huge and growing burden of serious health-related suffering, and also its scope for leveraging various aspects of primary care NCD management. Drawing on experiences in India and Nepal, and particularly a project on the India-Nepal border in which palliative care, community health and primary care-led NCD management are being integrated, we explore the synergies arising and describe a model where palliative care is integral to the whole spectrum of NCD management, from promotion and prevention, through treatment, rehabilitation and palliation. We believe this model could provide a framework for integrated NCD management more generally in rural India and Nepal and also other LMICs as they work to make NCD management as part of UHC a reality.

Rural Palliative Care in North India: Rapid Evaluation of a Program Using a Realist Mixed Method Approach.

CONTEXT: Palliative care has not developed widely in rural North India. Since 2010, the Emmanuel Hospitals Association (EHA) has been developing a model of palliative care appropriate for this setting, based on teams undertaking home visits with the backup of outpatient and inpatient services. A project to further develop the model operated from 2012 to 2015 supported by funding from the UK. AIMS: This study aims to evaluate the EHA palliative care project. SETTINGS AND DESIGN: Rapid evaluation method using a mixed method realist approach at the five project hospital sites. METHODS: An overview of the project was obtained by analyzing project documents and key informant interviews. Questionnaire data from each hospital were collected, followed by interviews with staff, patients, and relatives and observations of home visits and other activities at each site. ANALYSIS: Descriptive analysis of quantitative and thematic analysis of qualitative data was undertaken. Each site was measured against the Indian Minimum Standards Tool for Palliative Care (IMSTPC). RESULTS: Each team followed the EHA model, with local modifications. Services were nurse led with medical support. Eighty percent of patients had cancer. Staff demonstrated good palliative care skills and patients and families appreciated the care. Most essential IMSTPC markers were achieved but morphine licenses were available to only two teams. Remarkable synergy was emerging between palliative care and community health. Hospitals planned to fund palliative care through income from surgical services. CONCLUSIONS: Excellent palliative care appropriate for rural north India is delivered through the EHA model. It could be extended to other similar sites.

Respiratory problems in low-resource settings.

PURPOSE OF REVIEW: Chronic breathlessness is common in patients with advanced illness who require palliative care. Achieving good symptom control can be challenging. More people with advanced illness live in low and middle income than in high-income countries, but they are much less likely to receive palliative care. Most of the emerging evidence for the palliative management of chronic breathlessness is from high-income countries. This review explores the context of chronic breathlessness in low-income settings, how evidence for control of chronic breathlessness might relate to these settings and where further work should be focused. RECENT FINDINGS: Systems for control of noncommunicable diseases (NCDs) in these low-income contexts are poorly developed and health services are often overwhelmed with high levels both of NCD and communicable disease. Multidisciplinary and holistic approaches to disease management are often lacking in these settings. Developing an integrated primary care approach to NCD management is increasingly recognized as a key strategy and this should include palliative care. Most evidence-based approaches to the control of chronic breathlessness could be adapted for use in these contexts SUMMARY: Hand held fans, breathing techniques, graded exercise and use of low-dose morphine can all be used in low-income settings particularly in the context of holistic care. Research is needed into the most effective ways of implementing such interventions and palliative care needs to be promoted as a fundamental aspect of NCD management.

Hospital care following emergency admission: a critical incident case study of the experiences of patients with advanced lung cancer and Chronic Obstructive Pulmonary Disease.

AIMS AND OBJECTIVES: To explore the experiences of patients with advanced Chronic Obstructive Pulmonary Disease (COPD) and lung cancer, their carers and healthcare professionals following emergency admission to acute care hospital. BACKGROUND: Emergency admissions of people with lung cancer and COPD have increased and there is global concern about the number of patients who die in hospital. The experience of patients with advanced lung cancer and COPD admitted to hospital as an emergency when nearing the end of life has not previously been investigated. DESIGN: Qualitative critical incident case study. METHODS: Semistructured interviews were conducted with 39 patients (15 with COPD and 24 with lung cancer), 20 informal carers and 50 healthcare professionals, exploring patients' experiences of emergency hospital admission. Interviews took place after admission and following discharge. Participants nominated relatives and healthcare professionals for interview. Data were analysed thematically. RESULTS: Patients were satisfied with their 'emergency' care but not the care they received once their initial symptoms had been stabilised. The poorer quality care they experienced was characterised by a lack of attention to their fundamental needs, lack of involvement of the family, poor communication about care plans and a lack of continuity between primary and secondary care. A conceptual model of 'spectacular' and 'subtacular' trajectories of care was used to relate the findings to the wider context of health care provision. CONCLUSION: The complex nature of illness for patients with advanced respiratory disease makes emergency hospital admissions likely. Whilst patients (with COPD and lung cancer) were satisfied with care in the acute 'spectacular' phase of their admission, more attention needs to be given to the continuing care needs of patients in the 'subtacular' phase. RELEVANCE TO CLINICAL PRACTICE: This is the first study to explore the patient experience of acute care following an emergency admission and identifies where there is potential for care to be improved.

Qualitative critical incident study of patients' experiences leading to emergency hospital admission with advanced respiratory illness.

OBJECTIVES: The high volume of emergency admissions to hospital is a challenge for health systems internationally. Patients with lung cancer and chronic obstructive pulmonary disease (COPD) are frequently admitted to hospital as emergency cases. While the frequency of emergency admission has been investigated, few studies report patient experiences, particularly in relation to the decision-making process prior to emergency admission. We sought to explore patient and carer experiences and those of their healthcare professionals in the period leading up to emergency admission to hospital. SETTING: 3 UK hospitals located in different urban and rural settings. DESIGN: Qualitative critical incident study. PARTICIPANTS: 24 patients with advanced lung cancer and 15 with advanced COPD admitted to hospital as emergencies, 20 of their carers and 50 of the health professionals involved in the patients' care. RESULTS: The analysis of patient, carer and professionals' interviews revealed a detailed picture of the complex processes involved leading to emergency admission to hospital. 3 phases were apparent in this period: self-management of deteriorating symptoms, negotiated decision-making and letting go. These were dynamic processes, characterised by an often rapidly changing clinical condition, uncertainty and anxiety. Patients considered their options drawing on experience, current and earlier advice. Patients tried to avoid admission, reluctantly accepting it, albeit often with a sense of relief, as anxiety increased with worsening symptoms. CONCLUSIONS: Patients with advanced respiratory illness, and their carers, try to avoid emergency admission, and use logical and complex decision-making before reluctantly accepting it. Clinicians and policy-makers need to understand this complex process when considering how to reduce emergency hospital admissions rather than focusing on identifying and labelling admissions as 'inappropriate'.

A staff support programme for rural hospitals in Nepal.

PROBLEM: District hospitals in Nepal struggle to provide essential services such as caesarean sections. APPROACH: Retention of health workers is critical to the delivery of long-term, quality health-care services. To promote retention and enhance performance in rural public hospitals, the Government of Nepal and the Nick Simons Institute progressively implemented a rural staff support programme in remote hospitals. After competitive selection for a compulsory-service scholarship and training, family practice doctors who could do basic surgery, orthopaedics and obstetrics were hired under a binding three-year contract in each participating hospital. Comfortable living quarters and an Internet connection were provided for the resident doctors; in-service training for all staff and capacity development for each hospital's management committee were provided. LOCAL SETTING: Nepal's mountainous landscape, poverty and inequitable rural/urban distribution of health workers pose barriers to adequate health care. RELEVANT CHANGES: Between 2011 and 2015 family practice doctors were maintained in all seven programme hospitals. All hospitals became providers of comprehensive emergency obstetric care and served more patients. Compared with hospitals not within the programme, deliveries increased significantly (203% versus 71% increase, respectively; P = 0.002). The programme recently expanded to 14 hospitals. LESSONS LEARNT: A package of human resource supports can improve the retention of doctors and the use of remote hospitals. Factors contributing to the success of this programme were compulsory-service scholarship, central personnel management, performance-based incentives and the provision of comfortable living quarters.

The role and impact of facilitators in primary care: findings from the implementation of the Gold Standards Framework for palliative care.

BACKGROUND: Facilitation is the process of providing support to individuals or groups to achieve beneficial change. It is intrinsic to the Gold Standards Framework (GSF) for palliative care, a programme introduced widely in UK general practices. OBJECTIVES: To explore how GSF facilitators fulfil their role and the impact of the facilitators' backgrounds and approach on practices' uptake of the programme. SETTING: Primary care organizations and general practices in England and Northern Ireland. METHODS: Self-completed questionnaire and semi-structured interviews with facilitators. Practice audit questionnaire. Descriptive statistics. Thematic analysis. Linear and random effects models. RESULTS: A total of 102 (59.6%) facilitators completed a questionnaire; interviews were performed with nine facilitators. A large variability was found in the facilitators' professional backgrounds, role setup and activities. The impact of several facilitation characteristics on practice change was modelled for 63 (36.8%) facilitators and 266 practices (20.4%). No evidence was found of an association between practice change and facilitators' specialist knowledge of palliative care, mean facilitation time per practice, mean number of visits, facilitator budget and incentives offered to practices. Facilitators with a GP background were associated with higher levels of GSF change than those with a clinical nurse specialist background (P = 0.0078 with Bonferroni correction, significance threshold for corrected P = 0.008). The interviews indicated that the differential implementation of the framework might have been strongly affected by internal and external practice-related factors that were not readily amenable to facilitation. CONCLUSION: This study goes some way towards untangling aspects of facilitation associated with successful implementation of the GSF. Further prospective research and evaluation is needed to identify ways of improving its sustainability, effect on patient outcomes and cost-effectiveness.

Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England.

OBJECTIVE: To explore the experiences and perceptions of general practitioners and community nurses in discussing preferences for place of death with terminally ill patients. DESIGN: Qualitative study using semistructured interviews and thematic analysis. PARTICIPANTS: 17 general practitioners and 19 nurses (16 district nurses, three clinical nurse specialists). SETTING: 15 general practices participating in the Gold Standards Framework for palliative care from three areas in central England with differing socio-geography. Practices were selected on the basis of size and level of adoption of the standards framework. RESULTS: All interviewees bar one had experience of discussing preferred place of death with terminally ill patients. They reported that preferences for place of death frequently changed over time and were often ill defined or poorly formed in patients' minds. Preferences were often described as being co-created in discussion with the patient or, conversely, inferred by the health professional without direct questioning or receiving a definitive answer from the patient. This inherent uncertainty challenged the practicability, usefulness, and value of recording a definitive preference. The extent to which the assessment of enabling such preferences can be used as a proxy for the effectiveness of palliative care delivery is also limited by this uncertainty. Generally, interviewees did not find discussing preferred place of death an easy area of practice, unless the patient broached the subject or led the discussions. CONCLUSIONS: Further research is needed to enable development of appropriate training and support for primary care professionals. Better understanding of the importance of place of death to patients and their carers is also needed.

Interprofessional relationships and communication in primary palliative care: impact of the Gold Standards Framework.

BACKGROUND: High quality end-of-life care in the community is achieved with effective multidisciplinary teamwork, interprofessional communication between GPs and district nurses, and early referral of patients to district nurses. These aspects of palliative care are highlighted in the Gold Standards Framework, a programme recently established in UK primary care. AIM: To investigate the extent to which the framework influences interprofessional relationships and communication, and to compare GPs' and nurses' experiences. DESIGN OF STUDY: Qualitative interview case study. SETTING: Fifteen participating practices from three primary care trusts in England. METHOD: Thirty-eight semi-structured interviews were undertaken with GPs, district nurses, Macmillan nurses, and framework facilitators. RESULTS: Adoption of the framework often resulted in earlier referral of palliative care patients to district nurses. Multidisciplinary team meetings enabled communication for sharing knowledge, discussing management problems, and keeping colleagues informed; however, arranging and maintaining such meetings was often problematic. Nurses particularly valued formal meetings while GPs generally preferred informal ad hoc dialogue. GPs largely maintained control of the mode of multidisciplinary working. The best functioning teams used a mixture of formal and informal meetings with a relatively non-hierarchical working style. CONCLUSION: Implementing the framework enabled processes of communication associated with high quality palliative care in general practice, but there was marked variation in how this worked in individual teams. In general, hierarchical doctor-nurse relationships persisted.