Each month, we publish a selection of items that may be of interest to our global readership. Contributions are welcomed; we reserve the right to edit content.
Please also consider promoting your education and training events in the IAHPC Global Directory of Education in Palliative Care. It’s quick and easy — just submit your content online.
World Hospice and Palliative Care Day, which takes place this year on Saturday, October 13, is a unified day of action to celebrate and support hospice and palliative care around the world.
The 2018 theme is: Palliative Care – Because I Matter. This speaks to the individual experience of people directly affected by serious illness, including the often-overlooked financial impact of palliative care needs on individuals and households. The theme also contains elements of human rights and justice; if I matter, then why am I not getting the care I need?
The events highlights the importance of listening to people directly affected when planning health care policies and individual care, and engaging and involving them in service planning, advocacy, communications, and governance in hospice and palliative care worldwide.
World Hospice and Palliative Care Day events take place around the world and can take any form — from public debates and film screenings, to sporting events or meetings with government. To join this global community of supporters, add your event to the Global Map of Impact.
Support World Hospice and Palliative Care Day on social media by adding the official #BecauseIMatter ‘Twibbon’ to your Facebook or Twitter profile picture. Or share your story by recording a short video telling the world what matters to you when facing serious illness, or why palliative care matters to you.
If your palliative care program is based in the United States, you are invited to add it to the Palliative Care Provider Directory on GetPalliativeCare.org. The directory is a project of the Center to Advance Palliative Care (CAPC), which describes it as the only comprehensive online directory of palliative care programs nationwide.
‘Make it easier for patients, families, and providers to locate your program. Completing the survey takes less than five minutes and is free,’ it states. ‘Your participation will help us expand, fortify, and support this growing cohort of community-based palliative care programs across the country.’
Mapping Community Palliative Care is a project of the CAPC, in collaboration with the National Coalition for Hospice and Palliative Care.
Heavy reliance on caregiving by family and friends often occurs at end of life and, when calculating total health care costs, it should be included alongside formal services. That is the foundation of the Ambulatory & Home Care Record (AHCR), developed in Canada in 2006, that evaluates costs incurred by the health system and care recipients and their unpaid caregivers.
It remains the only tool that is both ‘comprehensive in coverage and validated,’ which is why it was used within a study evaluating a new palliative care service in the U.K, as reported in the August issue of the journal Pilot & Feasibility Studies.
The questionnaire, adapted for use in the U.K., produced complete, usable, and relevant data for an economic evaluation of formal and informal caring costs, concludes the study, led by Laura M. Holdsworth, Primary Care and Population Health, Stanford University School of Medicine. Researchers plan to use it, with minor modifications, as a framework in order to compare hospice models as part of a larger observational study.
A report titled ‘Ensuring and Restoring Balance on Access to Controlled Substances for Medical and Scientific Purposes: Joint Statement from Palliative Care Organizations,’ published online in September in the Journal of Pain & Palliative Care Pharmacology, ‘presents examples of unbalanced systems and a joint statement from global and regional palliative care organizations to promote development of balanced systems for optimal public health outcomes.’
IAHPC Advocacy Officer Dr. Katherine Pettus is lead author, with coauthors that include Executive Director Liliana De Lima, Chair of the Board Lukas Radbruch, and Member of the Board Julia Downing.
The report is in response to the principle of balance that ‘represents the dual obligation of governments to establish a system of control that ensures the adequate availability of controlled substances for medical and scientific purposes while simultaneously preventing their nonmedical use, diversion, and trafficking, two primary goals of the international control system.
‘Although nonmedical use of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor to interfere in their legitimate medical use for patient care. As representatives of palliative care organizations, we urge heads of state to act and to take measures to ensure and restore balanced systems in their countries and call on public health leaders and regulators to work together.’
The International Palliative Care Network Poster Exhibition call for posters has been extended! Share your HPM knowledge and experience with your HPM Global colleagues. Submit your poster by October 15, 2018.
Three new, practical guides on implementing palliative care have been released by the World Health Organization (WHO). All are available for free here. They are:
IAHPC Board Member Eric L. Krakauer edited and cowrote the three WHO palliative care implementation guides while serving as Medical Officer for Palliative Care at WHO headquarters in Switzerland. The two-year production process entailed convening three writing groups composed mainly of palliative care leaders with extensive experience working in low- and middle-income countries, editing each draft, and seeking and assimilating worldwide comments to prepare the final version.
The primary health care guide is the second in a series of WHO guides on palliative care that follows a general one titled Planning and implementing palliative care services: a guide for program managers, published in 2016. The current document may be used by itself for integrating palliative care into primary care or in combination with the earlier guide by those working to integrate palliative care into multiple levels of a health care system.
This document is not a clinical manual, and does not provide clinical guidelines. Rather, it contains detailed information about what palliative care is and should be, the rationale for it being a medical and moral imperative, an Essential Package of Palliative Care for Primary Health Care (EP PHC) and a method for implementing palliative care within primary care in a way that strengthens health care systems. It represents the collective knowledge, experience and recommendations of a group of experienced palliative care clinicians, all of whom either are also primary care clinicians or work in LMICs, or both.
The pediatrics guide describes the medical and moral necessity of making palliative care and pain relief accessible to all children in need, and their families. It offers an expanded conception of PPC based on the needs of children in LMICs as well as in high-income countries (HICs). It also proposes an Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) and provides practical guidance on integrating PPC and pain relief into health care systems such that the quality of life of children and their families is improved, health care systems are strengthened and cost-effective models of service provision are implemented, all of which contribute to the goal of universal health coverage (UHC).
This document is not a clinical manual, and it does not provide clinical guidelines. Rather, its contents are relevant to anyone involved with planning, implementing or managing PPC, including officials of United Nations (UN) organizations working with children, Ministry of Health (MoH) officials, public health leaders, hospital managers, nongovernmental organizations (NGOs), general and specialist pediatricians, surgeons, anesthesiologists, primary care providers and palliative care providers. It has been developed by a working group of experts in PPC and symptom relief from around the world with extensive experience in working in LMICs.
The United Nations Office for the Coordination of Humanitarian Affairs (UNOCHA) reports that, in 2015, nearly 125 million people needed humanitarian assistance worldwide. Yet responses to humanitarian emergencies and crises rarely provide palliative care, the discipline devoted to preventing and relieving suffering rather than to specific diseases, organs or technical skills. This guide, the fourth in a series of World Health Organization (WHO) guidance documents on palliative care, describes the medical and moral necessity of integrating palliative care and pain relief into responses to humanitarian emergencies and crises of all types. It offers an expanded conception of palliative care based on the needs of people affected by humanitarian emergencies and crises and proposes an Essential Package of Palliative Care for Humanitarian Emergencies and Crises (EP Hum).
The Canadian Virtual Hospice website contains information on palliative care, end-of-life care, loss, and grief. There are three main sections: Topics, Support, and For Professionals.
While the site originated as a resource for Canadians, it has expanded far beyond geographic boundaries by including a wealth of information useful to patients, caregivers, and end-of-life professionals in any country.
While one topic is specific to Canada (“Financial Assistance”), the others are filled with general information, including: What is Palliative Care?, Symptoms & Health Concerns, Decisions, Emotional Health, Providing Care, Spiritual Health, Communication, and Final Days.
Each topic has several articles; within ‘Symptoms & Health Concerns,’ for instance, you will find:
While ‘Ask a Professional’ is a service reserved for Canadians, commonly asked questions and their answers are grouped in ‘Asked and Answered,’ which is accessible to all. ‘The Gallery’ offers over 1,500 video clips by health experts, patients, and families sharing personal stories, and a series of caregiving demonstration videos of common caregiving tasks, such as administering medications (by patch, by mouth, through the nose, under the tongue, and by suppository), making a bed with someone in it, moving someone safely from bed to wheelchair, etc.
Professionals share ideas and expertise on ‘The Exchange,’ a gathering of writings and posters on myriad topics. While ‘Tools for Practice’ leans heavily on Canadian-based information, it also contains an enormous vault of easily applicable information of use to others (e.g., under Communication, you will find hundreds of resources, including Being Present : A Nurse's Resource for End-of-Life Communication, LGBT End-of-Life Conversations, and When a parent dies by suicide...What kids want to know).
Before you leave the site, you may want to check out ‘Books, Links, and More,’ which has compiled a library of English and French books and online resources on a variety of palliative care topics, from ‘Communication’ to ‘Grief and bereavement,’ ‘International’ to ‘Volunteers.’
The Coalition for Compassionate Care of California has compiled a list of resources in languages other than English available here. These are most useful for those living in the U.S.
The resources include:
See the IAHPC Calendar of Events.