International Association For Hospice And Palliative Care Research Articles

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

ContextThe 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. ObjectivesTo evaluate the inclusion of EPCMs recommended by both IAHPC and Lancet in national medicinal programmes, their availability, and affordability in Nepal. MethodsA 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. ResultsA 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. ConclusionMany 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.

Narrative review of home care for palliative patients in general practice.

In 2019, the International Association for Hospice and Palliative Care (IAHPC) presented for adoption and signing some very important documents, among which "New definition for Palliative Care", "Letter for National Palliative Care Advocates" (which was designated to be sent to government lead on Universal Health coverage, and UN negotiations) and "Suggested language changes to zero draft 'Political Declaration of the High-level Meeting on Universal Health Coverage'"-"Universal Health Coverage: Moving Together to Build a Healthier World". They are devoted to the constantly growing need of palliative care in addition to the diagnostics and treatment, and are essential part of the care both for the patients with chronic incurable life-threatening diseases (especially with serious health-related suffering) and their families. As the home is the natural place of illness, general practitioners (GPs) should be prepared and involved in the palliative care spectrum of activities. The authors present some aspects of the home-based care while focusing on some problems and challenges, and making comparison with some specific issues for palliative home-care. The overview of the new policies and documents for palliative care reveals the ultimate importance of "universal access to high-quality palliative care, integrated into all levels of health care systems in a continuum of care with disease prevention, early diagnosis, and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible" and the key role of GPs in it.

Palliative Care Advocacy: Why Does It Matter?

Evidence-based advocacy within the United Nations system for integration of palliative care into primary health care is essential to inspire and nurture the political will necessary to support the development and funding of national palliative care policy. National policy is, in turn, essential to underwrite clinical delivery that leaves no patient behind. Although International Association for Hospice and Palliative Care (IAHPC) has engaged in advocacy since its inception, the board decision to prioritize advocacy as part of the organization's strategic plan has taken it to a more formal level. This piece summarizes the content of the basic advocacy course released for IAHPC members, defines palliative care and advocacy, distinguishes advocacy from lobbying, discusses how an international organization such as the IAHPC advocates for palliative care at the global level, and clarifies the vital feedback loop between advocacy and clinical practice.

Editorial introductions

Editorial introductions

The International Association for Hospice and Palliative Care: Advancing Hospice and Palliative Care Worldwide

The International Association for Hospice and Palliative Care (IAHPC) is a membership-based organization dedicated to the development and improvement of hospice and palliative care worldwide. The mission of IAHPC is to improve the quality of life of adults and children with life-threatening conditions and their families. The vision of IAHPC is universal access to high-quality palliative care, integrated into all levels of health care systems in a continuum of care with disease prevention, early diagnosis, and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible. IAHPC focuses on the advancement of four areas of palliative care: education, access to medicines, health policies, and service implementation. IAHPC works on three levels: at the grass roots, developing resources, and educational strategies that enable health workers to provide cost-effective palliative care; at the national level, working with government representatives to improve national policies to ensure adequate care and access to medicines; and at the international level, advocating with the UN organizations to ensure that access to palliative care and to essential medicines for palliative care and pain treatment is stipulated and incorporated as an obligation of member states.

International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide.

Background: Reports about regulations and laws on Euthanasia and Physician Assisted Suicide (PAS) are becoming increasingly common in the media. Many groups have expressed opposition to euthanasia and PAS while those in favor argue that severely chronically ill and debilitated patients have a right to control the timing and manner of their death. Others argue that both PAS and euthanasia are ethically legitimate in rare and exceptional cases. Given that these discussions as well as the new and proposed laws and regulations may have a powerful impact on patients, caregivers, and health care providers, the International Association for Hospice and Palliative Care (IAHPC) has prepared this statement.Purpose: To describe the position of the IAHPC regarding Euthanasia and PAS.Method: The IAHPC formed a working group (WG) of seven board members and two staff officers who volunteered to participate in this process. An online search was performed using the terms “position statement”, “euthanasia” “assisted suicide” “PAS” to identify existing position statements from health professional organizations. Only statements from national or pan-national associations were included. Statements from seven general medical and nursing associations and statements from seven palliative care organizations were identified. A working document including a summary of the different position statements was prepared and based on these, an initial draft was prepared. Online discussions among the members of the WG took place for a period of three months. The differences were reconciled by email discussions. The resulting draft was shared with the full board. Additional comments and suggestions were incorporated. This document represents the final version approved by the IAHPC Board of Directors.Result: IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea.Conclusion: In countries and states where euthanasia and/or PAS are legal, IAHPC agrees that palliative care units should not be responsible for overseeing or administering these practices. The law or policies should include provisions so that any health professional who objects must be allowed to deny participating.

Editorial introductions

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 Jatoi Aminah Jatoi, MD is a practicing oncologist at the Mayo Clinic in Rochester, Minnesota, USA. She carries a strong interest in a variety of cancer-related palliative care issues, including the management of weight loss in patients with advanced cancer. Florian StrasserFlorian StrasserFlorian Strasser, MD ABHPM Associate Professor (PD), Head Oncological Palliative Medicine, Clinic for Oncology/Haematology, Dept. Internal Medicine and Palliative Center, Cantonal Hospital St.Gallen, Switzerland, is a medical doctor with board certification in internal medicine, medical oncology and palliative medicine and dedicates his work to clinical and research activities of integrated oncology and palliative care and cancer cachexia/nutrition/rehabilitation, as well as capacity building in multi-professional teams. His interests lie in the development of clinical models, clinical practice tools, and quality indicators to integrate oncology and palliative care. This work is also affiliated with international organizations with functions as chair or other responsibilities in the European Society of Medical Oncology (ESMO), Multinational Association of Supportive Care and Cancer (MASCC), European Association of Palliative Care (EAPC), American Society of Clinical Oncology (ASCO), and The Society on Sarcopenia, Cachexia and Wasting Disorders (SCWD). 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 Post-graduated 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. 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 got 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 is 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.

Consensus-Based Palliative Care Competencies for Undergraduate Nurses and Physicians: A Demonstrative Process with Colombian Universities.

Background: A World Health Assembly (WHA) resolution adopted in 2014 strongly encourages member states to integrate palliative care (PC) in undergraduate training for health professionals.Objective: The study objective was to describe a consensus-based process workshop to develop PC competences for medical and nursing schools in Colombia and to present a summary of the findings.Methods: The workshop included 36 participants representing 16 medical and 6 nursing schools from 18 universities in Colombia. Participants were distributed in four thematic groups. Using the International Association for Hospice and Palliative Care (IAHPC) List of Essential Practices (LEP) as guidance, they were asked to discuss and define PC competencies at the undergraduate level. Participants provided feedback and approved each recommendation, and then were asked to complete an evaluation.Results: The resulting competences were separated into six categories: (1) Definition and Principles of PC, (2) Identification and Control of Symptoms, (3) End-of-Life Care, (4) Ethical and Legal Issues, (5) Psychosocial and Spiritual Issues, and (6) Teamwork. A comparative analysis revealed that treatment of several symptoms in the IAHPC LEP (pain, dyspnea, constipation, nausea, vomit, diarrhea, delirium, and insomnia) were included in the competencies. All of the IAHPC LEP related to psychological/emotional/spiritual care was included. The evaluation rate of return was 80%. The assessment was very positive: total score of 4.7/5.0; SD = 0.426), with 89% considering the workshop to be helpful.Conclusion: The workshop provided an opportunity for individuals from different disciplines to discuss competencies and achieve consensus. The resulting competencies will be helpful in the development of PC curricula for physicians and nurses throughout schools in Colombia and other countries.

Patients’ access to opioids medication in Albania

Background Palliative care and pain relief are considered critical public health issues by World Health Organization (WHO). Opioids are essential medicines for the treatment of pain and have been included in the 2007 Essential Medicines in Palliative Care by International Association for Hospice and Palliative Care (IAHPC). Limited patient access to opioids represents a critical problem particularly in low and middle incomes countries. This study aims to evaluate the …

Palliative care development in the Asia-Pacific region: an international survey from the Asia Pacific Hospice Palliative Care Network (APHN)

BackgroundAlthough palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated.ObjectivesThis survey aimed to clarify the current status of...

A Russian Tragedy

Editor's Note: This letter was shared with the journal by Liliana De Lima, Executive Director of the International Association for Hospice and Palliative Care (IAHPC). The letter originally appeared in the IAHPC electronic newsletter. It is reprinted herein with the permission of Dr. Usenko and Ms. De Lima.

THE IAHPC MANUAL OF PALLIATIVE CARE, 3RD EDITION

The International Association for Hospice and Palliative Care (IAHPC) is a not-for-profit, international, interdisciplinary society dedicated to the provision of palliative care throughout the worl...

Palliative Care and Essential Drug Availability: Thailand National Survey 2012

Palliative care in Thailand was not well established in the past, but it is better supported by many organizations at present. Despite the change in the situation, the availability of essential drugs for palliative care has not been well studied. Our aim was to update the medical community on the current situation of essential drug availability for palliative care in Thai hospitals. The International Association for Hospice and Palliative Care (IAHPC) list of 34 essential drugs for palliative care was used in this survey. Five hundred and fifty-five hospitals replied to the questionnaire (response rate 57%). Eleven of the 24 nonopioid drugs were available above 90% in all hospitals. However, nonopioid drugs generally were less available in community hospitals (CH) and general hospitals (GH) than in large hospitals (LH). Tramadol was the most available weak opioid. Injectable morphine was the most available form of strong opioid in Thailand (96.9%). For the overall picture of oral morphine, immediate-release morphine was a less available form than the controlled-release form (32.2% versus 51.0%). Controlled-release oral morphine had a nearly two-fold better availability than immediate-release oral morphine in CH, GH, and LH, that is, cancer centers (CC), medical school hospitals (MH), regional hospitals (RH), and other government hospitals. In contrast, in private hospitals (PH), there was no difference between the availability of the controlled-release form and the immediate-release form. Transdermal fentanyl and methadone were also less available in Thailand (14.6% versus 16.5%, respectively). LH and PH have better overall nonopioid and opioid medication availability than CH and GH.

Editorial introductions

Editorial introductions

The Lisbon Challenge: Acknowledging Palliative Care as a Human Right

Access to palliative care has been advocated as a human right by international associations, based on the right to the highest attainable standard of physical and mental health. It has been argued that failure to provide palliative care for patients facing severe pain could constitute cruel, inhuman, or degrading treatment. Yet the governments of many countries throughout the world have still not acknowledged a human right to access palliative care for all those who need it. The European Association for Palliative Care (EAPC), the International Association for Hospice and Palliative Care (IAHPC), and Human Rights Watch (HRW) discussed this at the EAPC congress in 2011 and formulated the Lisbon Challenge: Governments must: (1) put in place health policies that address the needs of patients with life-limiting or terminal illnesses; (2) ensure access to essential medicines, including controlled medications, to all who need them; (3) ensure that health care workers receive adequate training on palliative care and pain management at undergraduate levels; and (4) facilitate and promote the implementation of palliative care services as part of available health services.

IAHPC list of essential practices in palliative care

Background The World Health Organization advocates that palliative care should be integrated in healthcare policies and programs. Yet the vast majority of the world’s population does not have access to palliative care. Studies also suggest that most people with advanced illnesses prefer to be cared for at home or near their home but most people die in institutions or, if at home, without the appropriate care. These, plus several limitations, call for the identification of priorities in the delivery of primary palliative care, so that the healthcare providers are able to meet the most pressing needs of patients with advanced life-limiting conditions, and those of their families. Under this framework, the International Association for Hospice and Palliative Care (IAHPC) decided, several years ago, to work on several projects aimed at identifying ‘essential’ components for optimal palliative care provision. The IAHPC recently completed a project to identify the list of essential practices in palliative care. This follows the IAHPC List of Essential Medicines in Palliative Care and the Opioid Essential Prescription Package developed in 2007 and 2011, respectively. The objective of this project was to identify, through a consensus process, the essential practices in palliative care which could be provided by physicians, nurses, and nurse aides working at the primary care level and could be applicable in all socioeconomic settings. The list of essential practices in palliative care for health workers working in primary care includes those practices aimed at meeting the most prevalent physical, social, psychological, and spiritual needs of palliative care patients and their families. To work on this project, the IAHPC convened a working group (WG) which included board members and external advisors from the field. The members of the WG for this project were Michael I. Bennett (UK), Eduardo Bruera (USA), Liliana De Lima (USA), Derek Doyle (UK), Julia Downing (Uganda), Clara Granda-Cameron (USA), Peter Hudson (Australia), Scott Murray (UK), Florian Strasser (Switzerland), and Roberto Wenk (Argentina). Additional advice, recommendations, and comments were provided by Gian Domenico Borasio (Switzerland), David Currow (Australia), Frank Ferris (USA), Faith Mwangi-Powell (Uganda), and M. R. Rajagopal (India). This paper describes the summary of the process to develop such a list. A three-phase study was designed and implemented over two and a half years. The phases included the development of a baseline list, a Delphi process with participants from more than 60 countries, and the participation of representatives from 45 palliative care organizations. A document which comprehensively outlines the methodology and the results is available in the IAHPC website under the ‘Palliative Care Essentials’ icon (www.hospi cecare.com) As the holder of the copyright, the IAHPC allows free dissemination for educational purposes providing appropriate acknowledgment to the organization is given.

Progress in palliative care in India

India is experiencing an epidemiological transition with non-communicable and chronic diseases becoming the leading causes of death. There are at least 1.5–2 million cancer cases; two-thirds of them are in an incurable stage of disease. The adult HIV prevalence is approximately 2.5 million. The development of palliative care has been patchy. Vast majority of India does not have access to palliative care but in a state like Kerala, effective coverage and involvement led to designation of centers such as Institute of Palliative Medicine (IPM), Calicut and Trivandrum Institute of Palliative Sciences (TIPS), Pallium India as the Collaborating Centers of WHO for Community Participation in Palliative Care and for Training and Policy on Access to Pain Relief, respectively. A lack of health policy, lack of training and awareness, and opioid availability are barriers to palliative care. India does not have a national policy on palliative care. The National Cancer and AIDS Control Programme mentions palliative care but with ineffective implementation. Kerala is the first state to introduce a state health policy. Andhra Pradesh includes palliative care for cancer in its state health insurance scheme. The major barriers to opioids availability include stringent regulatory issues, attitude, and knowledge. Efforts led to 14 states simplifying the regulations. Lack of training and awareness is a challenge. The Medical Council of India recently approved palliative medicine as a specialty. The Indian Journal of Palliative Care has become an indexed journal. Many International organizations such as the International Network in Cancer Treatment and Research (INCTR) and the International Association for Hospice and Palliative Care (IAHPC) are playing roles in bringing changes. Recognition of non-communicable diseases as a priority and palliative care as a specialty is expected to bring major change in palliative care scenario in India.

Editorial introductions

Editorial introductions

International Association for Hospice and Palliative Care (IAHPC) List of Essential Practices in Palliative Care

ABSTRACTThe objective of this study was to identify, through a consensus process, the essential practices in primary palliative care. A three-phase study was designed. Phase 1 methods included development of a working group; a literature review; development of a baseline list of practices; and identification of levels of intervention. In Phase 2, physicians, nurses, and nurse aides (n = 425) from 63 countries were asked in three Delphi rounds to rate the baseline practices as essential or nonessential and select the appropriate levels of intervention for each. In Phase 3, representatives of 45 palliative care organizations were asked to select and rank the 10 most important practices resulting from Phase 2. Scores (1–10) were assigned to each, based on the selected level of importance. Results of Phase 1 were a baseline list of 140 practices. Three levels of intervention were identified: Identification/Evaluation; Diagnosis; and Treatment/Solution measures. In Phase 2, the response rates (RR) for the Delphi rounds were 96.5%, 73.6%, and 71.8%, respectively. A consensus point (≥80% agreement) was applied, resulting in 62 practices. In Phase 3, RR was 100%. Forty-nine practices were selected and ranked. “Evaluation, Diagnosis and Treatment of Pain” scored the highest (352 points). The working group (WG) arranged the resulting practices in four categories: Physical care needs, Psychological/Emotional/Spiritual care needs, Care Planning and Coordination, and Communication. The IAHPC List of Essential Practices in Palliative care may help define appropriate primary palliative care and improve the quality of care delivered globally. Further studies are needed to evaluate their uptake and impact.

Strategic Pain Management: The Identification and Development of the IAHPC Opioid Essential Prescription Package

The aim of this study was to determine by consensus the components of an opioid essential prescription package (OEPP) to be used when initiating a prescription for the control of moderate to severe chronic pain. Palliative care physicians (n=60) were sampled from the International Association for Hospice and Palliative Care (IAHPC) membership list to represent a range of countries of varying economic levels and diverse geographical regions. Using a Delphi study method, physicians were asked to rank preferences of drug and dosing schedule for first-line opioid, antiemetic, and laxative for the treatment of adults with chronic pain due to cancer and other life-threatening conditions. Overall response rates after two Delphi survey rounds were 95% (n=57) and 82% (n=49), respectively. A consensus (set at ≥75% agreement) was reached to include morphine as first-line opioid at a dose of 5 mg orally every 4 hours. Consensus was reached to include metoclopramide as a first-line antiemetic, but there was no consensus on "regular" or "as needed" administration. No consensus was reached regarding a first-line laxative, but a combination of senna and docusate secured 59% agreement. There was consensus (93% agreement) that laxatives should always be given regularly when opioid treatment is started. Further work is needed to establish a recommended dose of metoclopramide and a type and dose of laxative. The resulting OEPP is international in scope and is designed to ensure that opioids are better tolerated by reducing adverse effects of opioids, which could lead to more sustained improvements in pain management.