Creating a sustainable, participatory palliative care programme in an urban slum in Dhaka, Bangladesh.

ED02.04 Palliative Care in South-East Asia

Outpatient Clinics Are a New Frontier for Palliative Care

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

Palliative care is a recent development in health worldwide. In Brazil, a growing number of people with cancer require palliative care, emphasizing the need for investment in this aspect of health to increase the quality of life of patients during the dying process. As a developing country, Brazil lacks knowledge regarding the themes, material and financial resources, and policies of palliative care. The aim of this study was to provide insights into the Brazilian palliative care system from the perspectives of nurses and physicians. This was a descriptive and qualitative study, conducted at the palliative care unit of the Instituto Nacional de Câncer in Brazil. Twelve professionals, among them 8 nurses and 4 physicians, were interviewed in November 2013. The data were analyzed using the thematic analysis method. Ethical aspects were respected. The perspectives of the participants were characterized by 3 themes regarding the initial phase of development of palliative cancer care in Brazil: (1) controversies about when palliative cancer care should be initiated, (2) the World Health Organization recommendations and current practices, and (3) the need to invest in palliative cancer care education in Brazil. The development of palliative care is in the initial stages, and there is a possibility for growth due to recent advances. Knowledge about these challenges to palliative care could contribute to the development of strategies, such as the establishment of service organizations and networks, as well as educational and political investments for the advancement of palliative care.

Current Opinion in Supportive and Palliative Care was launched in 2007. It is one of a successful series of review journals whose unique format is designed to provide a systematic and critical assessment of the literature as presented in the many primary journals. The fields of supportive and palliative care are divided into 12 sections that are reviewed once a year. Each section is assigned a Section Editor, a leading authority in the area, who identifies the most important topics at that time. Here we are pleased to introduce the Journal's Section Editors for this issue. SECTION EDITORS Aminah JatoiAminah JatoiDr Aminah Jatoi is Professor of Oncology at the Mayo Clinic in Rochester, Minnesota, USA. A practicing medical oncologist, she has been interested in symptom control research in cancer patients for over 20 years. She holds a special interest in cancer-associated weight loss, having completed a three-year fellowship in clinical nutrition. She is the author of more than 300 publications. Dr. Jatoi has received research funding from multiple sources, including the United States’ National Cancer Institute. Barry J.A. LairdBarry J.A. LairdBarry J.A. Laird graduated in medicine from the University of Glasgow, UK, in 1997 and completed higher specialist training in palliative medicine in 2009. During his training in palliative medicine he was awarded a National Cancer Research Institute Fellowship and joined the academic palliative medicine department at the University of Edinburgh, UK, with Professor Marie Fallon. He completed his MD in cancer induced bone pain and neuropathic cancer pain in 2009 and was then awarded a fellowship from the European Palliative Care Research Centre (PRC) working with Professor Stein Kaasa. His interest in cachexia was nurtured by the late Professor Kenneth Fearon. He currently holds positions as a Senior Lecturer in Palliative Medicine at the University of Edinburgh and a consultant in palliative medicine in St Columba's Hospice, UK. His research interests are focussed around symptoms in life-limiting illness and the role of palliative care in optimising the care of malignant (lung and pancreatic cancer) and non-malignant disease. He leads a research programme examining the systemic inflammatory response in cachexia, symptom genesis and prognosis in cancer. He has published over 70 papers and is the CI and PI of clinical trials in symptomatology and treatment. Gustavo De SimoneGustavo De SimoneGustavo De Simone was born in Argentina in 1955 and graduated as a physician in 1979, completing his specialty in medical oncology. He was appointed Medical Director of the Palliative Care Program at Mainetti Comprehensive Cancer Centre in La Plata, Argentina, in 1991. Since then he has contributed to the development of specialist palliative care services in Buenos Aires and other cities in Argentina. He has led development of palliative care education mainly at postgraduate level within the University of La Plata, Argentina, from 1992 to 1997 and Universidad del Salvador, Argentina, from 1998 to present, and has been involved in the development of the research and development programs. He is Medical Director of Pallium Latinoamerica Study Centre (NGO), which has had academic links with Oxford International Centre for Palliative Care since 1993. In June 2005, Dr De Simone was made Coordinator of Postgraduate Training in Palliative Care (Residence Program) within the Ministry of Health, Buenos Aires Government. He is currently Chief of Education and Research Department at the Bonorino Udaondo Public Hospital in Buenos Aires, Argentina. In 1998 he became Honorary Professor of Palliative Medicine at the Universidad del Salvador, Buenos Aires, and Director of the Career of Medical Oncology. This is the first Chair in Palliative Medicine in Argentina and provides a focal point for educational developments in South America. Based on his commitments to education, he received the 2003 International Association for Hospice and Palliative Care (IAHPC) Annual Vittorio Ventafridda Award. In 2009 he was made Director of the working group on End of Life Decisions at the Medical Ethics Committee of the National Academy of Medicine, and from 2008 to 2011 he was Argentina's country leader for the EU project ‘OPCARE9’. Since 2011 he has been the Director of MSc in Palliative Care at the Universidad del Salvador and has been re-elected President of the Argentinean Association for Palliative Care from 2012 to 2014. Bridget JohnstonBridget JohnstonProfessor Bridget Johnston holds the post of Florence Nightingale Foundation Chair in Clinical Nursing h in the School of Medicine, Dentistry and Nursing, College of Medical, Veterinary and Life Sciences, University of Glasgow, UK. This a joint post between the University of Glasgow and NHS Greater Glasgow and Clyde in Scotland, UK. Bridget is a registered nurse and has a clinical, educational and research background in palliative care. She graduated with her PhD from the University of Glasgow in 2002. Bridget was a Professor of Palliative and Supportive Care and co-lead of the Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care at University of Nottingham, UK, from 2013–2016. Bridget's research has centred on self-care and advanced cancer, telehealth and palliative care symptom management in palliative care and laterally developing and testing interventions related to dignity and end of life care. Bridget supports a number of PhD students from across the world doing palliative care studies. Bridget was appointed as a Patron of Macmillan Cancer Support Alumni in 2015. Bridget is chair of the Scottish palliative care research forum. Bridget is Section editor BMC Nursing and Section Editor (end of life care) for Current Opinion in Supportive and Palliative Care. Bridget tweets as @BridgetJohnst and co-hosts a palliative/end of life twitter group @Weeolc. Christopher DalleyChristopher DalleyDr Dalley is a Consultant Haematologist at Southampton General, UK. He has specialty interest in the Myelodysplastic syndromes, acute myeloid leukaemia, bone marrow transplantation as well as the diagnosis of haematological cancers. Having graduated from St Thomas's Hospital Medical School, University of London, UK, he underwent postgraduate training in haematology at St Bartholomew's Hospital, UK. Whilst there, he developed a research interest in the cytogenetics of acute myeloid leukaemia, and the clinical management of AML in older adult patients. After completing his specialist training in haematology, he worked at Vancouver General Hospital, Canada, as a British Columbia Cancer Agency Leukaemia and Bone Marrow Transplant Fellow. Having completed his fellowship, he returned to the United Kingdom and has been a substantive consultant haematologist for fourteen years. He developed ambulatory care programmes for patients with haematological cancer, developed and led a specialised integrated haematological malignancy diagnostic service at Sheffield Teaching Hospitals NHS Foundation Trust, UK, where he worked for seven years as a Consultant Haematologist. He has co-written national clinical guidelines for the management of the myelodysplastic syndromes and the National Institute for Clinical Excellence (NICE) Improving Outcomes Guidance for Haematological Malignancy. Dr Dalley is currently a member of the National External Quality Assurance Scheme (NEQAS) Leukaemia Immunophenotyping Executive Committee, NEQAS Molecular Scientific Advisory Group and the UK MDS Executive Committee. He is also a Joint Accreditation Committee ISCT-Europe (JACIE) Clinical Inspector for BMT programmes. His current clinical practice is focused on the management of aggressive myeloid malignancies. His department is recognised as a Center of Excellence by The MDS Foundation.

Background and context: According to the World Health Organization (WHO) global atlas which maps palliative care needs worldwide, just over 50% of the palliative care needs reside in Asia. Development of palliative care services in Asia is patchy, with a few high income countries, such as Singapore and Japan, with palliative care services integrated into the health system. In the vast majority of countries, particularly low-income and middle-income countries (LMICs), such services are lacking or only available in a few centers. Aim: To develop palliative care services in countries with no services. Strategy/Tactics: The Asia Pacific Hospice Palliative Care Network (APHN) is a nongovernmental organization which supports the development of palliative care in the Asia Pacific region. Since 2012 , it has developed a comprehensive program to build capacity for palliative care in several countries in the region, including Myanmar, Sri Lanka and Bangladesh. Program/Policy process: Coconceptualized and funded by the Lien Foundation, the APHN sends interdisciplinary teams of volunteer faculty to these countries to run a training of trainers program over a period of three years. Major tertiary institutions were chosen as partners, with the understanding that palliative care services would be set up once a team had been trained. An interdisciplinary team of doctors, nurses, social workers and pharmacists from each institution went through the training program together. Individuals with potential to become champions for palliative care in these countries were given further training through a clinical fellowship program at established institutions in the region. During the training participants would be expected to start palliative care services in their institutions, which will become training centers for palliative care in the future. Concomitantly, a program of advocacy for medications essential for palliative care, such as oral morphine, was also undertaken. Outcomes: Six modules of the training course were completed in each of the three countries. A corps of 20 to 30 master trainers completed the training. In each of those countries, one or more palliative care services were started in major tertiary teaching hospitals. Oral morphine availability was greatly enhanced. The master trainers organized training within their hospitals, and also for the public. Other outcomes include the recognition of palliative care as a specialty, the introduction of palliative care into undergraduate medical and nursing curricula, and development of postgraduate courses in palliative care. What was learned: It was important to target institutions which were willing establish palliative care services. An interdisciplinary group of faculty was able to teach and inspire the trainees to take up the discipline. A drug availability program was essential to provide the tools to work with.

Despite high rates of intimate partner violence (IPV) among women, research on its mental health consequences, particularly PTSD in slum settings, remains scarce. This study assessed PTSD prevalence and determinants among slum-dwelling women in Bangladesh who experienced IPV during the COVID-19 pandemic. A cross-sectional study was conducted between July and October 2022 among 291 women from 5 urban slums in Dhaka, who reported IPV using the World Health Organisation questionnaire. Face-to-face interviews collected sociodemographic data, pandemic-related challenges, gender roles, health information and PTSD symptoms using the validated Post-Traumatic Stress Disorder Checklist-5. Logistic regression identified PTSD predictors. Most women were married before the age of 18 years (87.9%), unemployed (69.3%), had no formal schooling (38.6%) and lived in overcrowded households (38.6%). Over half of their husbands were daily wage earners (57.9%) and had a history of substance misuse (65.9%). PTSD prevalence was 21.16% and was higher among women with non-communicable diseases (adjusted odds ratio [AOR]: 3.29; 95% confidence interval [CI]: 1.6-6.7), concern about COVID-19 infection (AOR: 3.87; 95% CI: 1.12-13.22) and increased marital arguments (AOR: 3.00; 95% CI: 1.57-5.74). IPV in slum settings imposes a significant PTSD burden, highlighting the need for community-based mental health services to support marginalised women.

Public Awareness and Perceptions of Palliative and Comfort Care

Growth and Challenges in Hospital Palliative Cancer Care Services: An Analysis of Nationwide Surveys Over a Decade in Japan

The African Palliative Care Association (APCA) Atlas of Palliative Care Development in Africa: a comparative analysis

Access to palliative care is an urgent global need. Countries with the greatest palliative care needs have limited access. In Cameroon, demand for palliative care is growing due to the rising incidence of life-limiting conditions. Identifying available palliative care services and programs could provide an understanding of access gaps and inform future roadmaps for palliative care development in the country. We aim to map available palliative care services, identify gaps and inform recommendations to promote early access to palliative care in Cameroon. We undertook a literature review of articles reporting any aspects of palliative care in Cameroon. We searched Embase, MEDLINE, Scopus, PsycINFO, CINAHL, PubMed and gray literature. Data were analyzed thematically using the World Health Organization model for the assessment of palliative care development. We identified 41 articles reporting 21 organizations with some form of palliative care services such as clinical services, education, advocacy and research. These were led mostly by individual health care providers or private and faith-based organizations. Major palliative care initiatives included training in the form of workshops, and adult and pediatric outpatient, in-patient and community-based palliative care. There were few reports of oral morphine production, community engagement, advocacy and palliative care research. Progress in palliative care development was reported in five regions of Cameroon over the last two decades. Findings suggest the need for an intersectoral approach including government, community, and health care stakeholders to achieve sustainable palliative care. This could potentially ensure equitable access to palliative care in Cameroon.

BackgroundThe first and most recent nationwide audit of palliative care services in Uganda was conducted in 2009. Since then, Uganda has made great strides in palliative care development, including policy, education, and services implementation. This study provides an overview of the availability of palliative care services in the country and the challenges and gaps in Uganda prior to the global COVID-19 pandemic. This lays the foundation for better understanding the challenges and changes needed to support palliative care development and access in the wake of the pandemic.MethodsWe conducted a descriptive quantitative study of secondary data on nationwide morphine distribution, collated a list of accredited facilities, and analyzed key palliative care indicators collected through the mHealth surveillance project present at a subset of accredited facilities. Descriptive statistical analysis involved non-parametric tests using SPSS, mapping geographical distribution of available palliative care services using Geographic Information Systems software, and identification of challenges from the subset of accredited facilities.ResultsThere were 226 accredited palliative care facilities across Uganda’s 135 districts in 2020. Thirty districts lacked any accredited palliative care facility. The estimated population coverage was 88.5%. The majority (68.1%) of accredited facilities were public, and private facilities received slightly more pain-relieving morphine. There was an alternating trend in the volumes of morphine delivered to public and private facilities. More than a third of the patients were diagnosed with non-communicable diseases, highlighting their significance alongside cancer and HIV/AIDS as conditions requiring palliative care. Palliative care accredited facilities offered six types of services: outreach, home visits, psychosocial, legal, bereavement, and spiritual support, but only for an average of 7 months a year due to lack of facilitation and transportation.ConclusionPalliative care in Uganda developed in quality, volume, and geographic coverage since 2009. The shift in palliative care patients’ primary diagnosis from HIV/AIDS to non-communicable diseases marks an important epidemiologic transition. Although accredited facilities are present in most administrative districts, more research is needed to evaluate the actual accessibility of these services. The existing services, both private and public, are limited by the amount of pain-relieving morphine, financial and transport resources. More quality data collected on key palliative care indicators is needed into geographical accessibility of palliative care services, morphine availability trends, and patient diagnoses in order to improve the provision of palliative care in Uganda.

BackgroundDying at home accompanied by loved-ones is regarded favorably and brings good luck in Taiwan. This study aimed to examine the relevant factors affecting whether an individual dies at home or not in a group of terminal patients receiving palliative home care service.MethodsThe patients who were admitted to a palliative home care service at a hospital-affiliated home health care agency were consecutively enrolled between March 1, 2021 and March 31, 2022. During the period of care, the instruments of the palliative care outcomes collaboration was used to assess patients in each home visit twice a week, including symptom assessment scale, palliative care problem severity score, Australia-modified Karnofsky performance status, resource utilization groups-activities of daily living, and palliative care phase.ResultsThere were 56 participants (53.6% female) with a median age of 73.0 years (interquartile range (IQR) 61.3–80.3 y/o), of whom 51 (91.1%) patients were diagnosed with cancer and 49 (96.1%) had metastasis. The number of home visits was 3.5 (IQR 2.0–5.0) and the average number of days under palliative home care service was 31 (IQR 16.3–51.5) before their death. After the end of the study, there was a significant deterioration of sleeping, appetite, and breathing problems in the home-death group, and appetite problems in the non-home death patients. However, physician-reported psychological/spiritual problems improved in the home-death group, and pain improved in the non-home death patients. Physical performance deteriorated in both groups, and more resource utilization of palliative care was needed. The 44 patients who died at home had greater cancer disease severity, fewer admissions, and the proportion of families desiring a home death for the patient was higher.ConclusionsAlthough the differences in palliative outcome indicators were minor between patients who died at home and those who died in the hospital, understanding the determinants and change of indicators after palliative care service at different death places may be helpful for improving the quality of end-of-life care.

Early Integration of Palliative Care in the Care of Women with Advanced Epithelial Ovarian Cancer: The Time Is Now

Spain: The WHO Demonstration Project of Palliative Care Implementation in Catalonia: Results at 10 Years (1991–2001)