The Palliative Care Working Group was formed in April 2019 in recognition of the widespread neglect of pain management and palliative care in low-and middle-income countries. The goal of this working group is to expand awareness of the need for palliative care integration within existing global health interventions through collaboration, education, research, and advocacy. Activities include developing: (1) a resource base of organizations, journals, policies, curricula, conferences, and reports relevant to palliative care; (2) policy advocacy consistent with the WHO and 2017 Lancet Commission recommendations, and (3) educational programs and presentations through conferences and webinars. We rely heavily on academic and non-academic partnerships to achieve these aims. Our partners include international experts, academic institutions, and national and international palliative care organizations. Membership is open to all who are interested in advancing the presence of palliative care in global health.
If you would like to be added to our mailing list or are interested in contributing to our working group, please contact: Nauzley Abedini, MD, MSc at email@example.com
American Journal of Hospice & Palliative Medicine
Thousand Oaks, California: Sage Publications | http://ajh.sagepub.com
BMJ Palliative and Supportive Care
London, England: BMJ Publishing Group | http://spcare.bmj.com
New York: Routledge | https://www.tandfonline.com/toc/udst20/current
European Journal of Palliative Care
Newmarket, England | www.ejpc.eu.com
Illness, Crisis, and Loss
Amityville, NY: Baywood Publishing Co. | www.baywood.com/journals/PreviewJournals.asp?Id=1054-1373
Indian Journal of Palliative Care
New Delhi, India | www.jpalliativecare.com
Journal of Hospice and Palliative Nursing
Hospice & Palliative Care Nurses Association | http://journals.lww.com/jhpn/pages/default.aspx
Journal of Pharmaceutical Care in Pain and Symptom Control
Informa Healthcare | http://informahealthcare.com/toc/wzzp/1/1
Journal of Pain and Symptom Management
New York: Elsevier | www.elsevier.com/wps/find/journaldescription.cws_home/505775/description…
Journal of Palliative Medicine
New Rochelle, NY: Mary Ann Leibert | https://www.liebertpub.com/loi/jpm
Journal of Palliative Care
Montreal, Canada: Center for Bioethics – IRCM | www.criugm.qc.ca/journalofpalliativecare
OMEGA: The Journal of Death & Dying
Amityville, NY: Baywood Publishing Co. | www.baywood.com/journals/PreviewJournals.asp?Id=0030-2228
Palliative and Supportive Care
New York: Cambridge University Press | http://journals.cambridge.org/action/displayJournal?jid=PAX
London, England: Sage Publications | www.sagepub.co.uk/journalsProdDesc.nav?prodId=Journal201823
Progress in Palliative Care
Maney Publishing – Leeds, UK | http://maneypublishing.com/index.php/journals/ppc
Supportive Care in Cancer
Springer Publishing, New York | http://link.springer.com/journal/520
* Denotes annual conference
African Palliative Care Association*
APCA’s mission is to promote and support affordable and culturally appropriate palliative care throughout Africa. It is based in Kampala, Uganda.
All Ireland Institute of Hospice and Palliative Care (AIIHPC)
American Academy of Hospice and Palliative Medicine*
American Hospice Foundation
The American Hospice Foundation supports programs that serve the needs of terminally ill and grieving individuals of all ages.
Asia Pacific Hospice Palliative Care Network
The Asia Pacific Hospice Palliative Care Network was established to empower and support individuals and organizations committed to alleviating suffering from lifet-hreatening illness in the Asia Pacific region.
Canadian Hospice Palliative Care Association
The Canadian Hospice Palliative Care Association is the national association that provides leadership in hospice palliative care in Canada
Cicely Saunders International
Focuses on carrying out quality research to improve the care and treatment of all patients with progressive illness and to make high-quality palliative care available to everyone who needs it.
ehospice is the first globally managed news and information website and app on hospice, palliative and end of life care, bringing you the latest news, intelligence, commentary and analysis from the sector. At the touch of a button, you can access the expertise and experience of the global palliative care community.
European Association for Palliative Care
The aim of the EAPC is to promote palliative care in Europe and to act as a focus for all of those who work, or have an interest, in the field of palliative care at the scientific, clinical and social levels.
Global Partners in Care
Enables US partners working in hospice and palliative care to engage with sister organizations in low-resource settings
Hospice Association of America
A membership organization within the National Association for home care that advocates for hospice care.
Hospice Foundation of America
Promotes education on death, dying, and bereavement through publications and teleconferences.
Indian Association of Palliative Care*
National organization which is actively engaged in enhancing palliative care through its activities of awareness, advocacy, training, policy, and program development.
International Association for Hospice and Palliative Care
Its mission is to collaborate and work to improve the quality of life of patients with advanced life-threatening conditions and their families, by advancing hospice and palliative care programs, education, research, and favorable policies around the world.
International Children’s Palliative Care Network
A worldwide network of individuals and agencies working with children and young people with life-limiting conditions.
International Observatory on End of Life Care
Undertakes high-quality research, clinical studies, evaluation, education, advocacy and consultancy to improve palliative and end of life care for patients and family carers.
Latin American Association for Palliative Care
Its mission is to promote the development of palliative care in Latin America and the Caribbean, through its communication and integration of all stakeholders in improving the quality of life of patients with progressive incurable diseases and their families.
National Coalition for Hospice and Palliative Care
10 leading US national hospice and palliative care organizations
National Hospice and Palliative Care Organization
NHPCO is the largest non-profit membership organization representing hospice and palliative care programs and professionals in the United States.
Palliative Care Association of Uganda
Supports and promotes the development of palliative care and palliative care professionals in Uganda.
Palliative Care Australia
National organization representing the interests and aspirations of all who share the ideal of quality care at the end of life.
St. Christopher’s Hospice
The first modern hospice; St Christopher’s exists to promote and provide skilled and compassionate palliative care of the highest quality.
Worldwide Palliative Care Alliance (WPCA)
A global action network focusing exclusively on hospice and palliative care development worldwide. Its members are national and regional hospice and palliative care organizations and affiliate organizations supporting hospice and palliative care.
A note from CUGH Palliative Care Working Group Chair, Dr. Nauzley Abedini:
It is evident to many of us that palliative care is of particular relevance in all of our settings as we face a pandemic. In palliative care, we are well-equipped to tackle many challenges that may arise, including (but not limited to):
- Symptom management as many patients face respiratory illness (and likely critical illness and terminal delirium);
- The challenges in communication when patients and families are isolated or critically ill (including how to communicate well when wearing PPE, the role of telehealth, and role of surrogate decision making);
- The severe existential and psychosocial distress that may emerge from social disconnection (particularly around end of life);
- The wellness of our workforce as they face unprecedented circumstances; etc.
Palliative care may also be facing particular challenges as we think about resource reallocation, workforce shortages, and maintaining supply chains of essential medicines and supplies.
As such, I hope that you use this page as a venue to share and process information and resources. Included are a few helpful links (pertinent both to our US-based and international colleagues), which is by no means comprehensive.
Please feel free to share resources or tools that you have come across or have developed that may support us in our collective growth in global palliative care as we face an uncertain future. To do so, please send them to firstname.lastname@example.org.
International Association of Hospice and Palliative Care (IAHPC) Palliative Care and Covid-19 Resource Page: Includes publications related to palliative care and Covid-19, webinars, as well as guidelines and documents from academia, civil society organizations, member states, and United Nations agencies. http://globalpalliativecare.org/covid-19/
Center to Advance Palliative Care (CAPC) COVID-19 Toolkit (US-focused, but has communication tips, symptom management protocols, and palliative care team tools that could be helpful for all): https://www.capc.org/toolkits/covid-19-response-resources/
A Field Manual for Palliative Care in Humanitarian Crises: https://oxfordmedicine.com/view/10.1093/med/9780190066529.001.0001/med-9780190066529
COVID-19 Communication Tools from VitalTalk (Includes specific communication tips around allocating screening and potential implications of rationing and resource allocation): https://docs.google.com/document/d/1uSh0FeYdkGgHsZqem552iC0KmXIgaGKohl7SoeY2UXQ/preview
Worldwide Hospice and Palliative Care Alliance (Repository of different countries/states/organizational guidance): http://www.thewhpca.org/covid-19
***This includes a link to a webinar at 2 pm UK time on Friday, March 20th: https://ehospice.com/international_posts/webinar-on-coronavirus-and-people-with-serious-conditions-and-underlying-health-issues/
American Academy of Hospice and Palliative Care COVID-19 Resource Page: http://aahpm.org/education/covid-19-resources
World Health Organization COVID-19 Page:
For Planners, Implementers, and Managers
Planning and Implementing PC Services (WHO)
Integrating PC into Humanitarian Emergencies (WHO, 2018)
Integrating PC into Pediatrics (WHO, 2018)
Integrating PC into Primary Care (WHO, 2018)
National Palliative Care Protocols/Guidelines
Clinical Practice Guidelines
PC Clinical Practice Guidelines (NCHPC, 2018)
Hospice and Palliative Medicine Core Competencies Version 2.3 September, 2009
Ontario Palliative Care competency framework
Consensus-Based Palliative Care Competencies for Undergraduate Nurses and Physicians: A Demonstrative Process with Colombian Universities
Tania Pastrana, MD,1Roberto Wenk, MD,2and Liliana De Lima, MHA, JOURNAL OF PALLIATIVE MEDICINE Volume 19, Number 1, 2016
Shiley Institute for Palliative Care
Smith College School for Social Work
Yale School of Medicine: Palliative and End-of-Life Care Education
University of Maryland: Online Master of Science and Graduate Certificates in Palliative Care
Lancet Commission Report (October, 2017)
White Paper by CUGH’s Palliative Care Working Group: An Interdisciplinary Working Group to Advocate Universal Palliative Care and Pain Relief Access
White Paper for Global Palliative Care Advocacy: Recommendations from a PAL-LIFE Expert Advisory Group of the Pontifical Academy for Life, Vatican City https://www.liebertpub.com/doi/pdf/10.1089/jpm.2018.0248
World Health Assembly Document 67.19