Background

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 nauzley.abedini@ucsf.edu

Resources

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

Death Studies

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

Palliative Medicine

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*

www.africanpalliativecare.org

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)

https://aiihpc.org/

American Academy of Hospice and Palliative Medicine*

aahpm.org

American Hospice Foundation

www.americanhospice.org
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

Singapore
www.aphn.org
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

www.chpca.net
The Canadian Hospice Palliative Care Association is the national association that provides leadership in hospice palliative care in Canada

Cicely Saunders International

www.cicelysaundersfoundation.org
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

www.ehospice.com
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

www.eapcnet.org
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

https://globalpartnersincare.org/
Enables US partners working in hospice and palliative care to engage with sister organizations in low-resource settings

Hospice Association of America

https://www.nahc.org/
A membership organization within the National Association for home care that advocates for hospice care.

Hospice Foundation of America

www.hospicefoundation.org
Promotes education on death, dying, and bereavement through publications and teleconferences.

Indian Association of Palliative Care*

Palliativecare.in
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

www.hospicecare.com
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

www.icpcn.org.uk
A worldwide network of individuals and agencies working with children and young people with life-limiting conditions.

International Observatory on End of Life Care

https://www.lancaster.ac.uk/health-and-medicine/research/ioelc/
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

www.cuidadospaliativos.org
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

https://www.nationalcoalitionhpc.org/
10 leading US national hospice and palliative care organizations

National Hospice and Palliative Care Organization

www.nhpco.org
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

www.Pcauganda.org
Supports and promotes the development of palliative care and palliative care professionals in Uganda.

Palliative Care Australia

www.palliativecare.org.au
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

www.stchristophers.org.uk
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)

www.thewpca.org
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 info@cugh.org.

RESOURCES:

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:
https://www.who.int/emergencies/diseases/novel-coronavirus-2019

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

Malawi
Rwanda

Clinical Practice Guidelines

PC Clinical Practice Guidelines (NCHPC, 2018)

Competencies

Hospice and Palliative Medicine Core Competencies Version 2.3 September, 2009
http://aahpm.org/uploads/education/competencies/Competencies%20v.%202.3.pdf

Ontario Palliative Care competency framework
https://www.ontariopalliativecarenetwork.ca/sites/opcn/files/OPCNCompete…

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
https://hospicecare.com/uploads/2015/11/jpm20150202.pdf

Online Curricula

Shiley Institute for Palliative Care
https://csupalliativecare.org/programs/

Smith College School for Social Work
https://ssw.smith.edu/palliative

Yale School of Medicine: Palliative and End-of-Life Care Education
https://medicine.yale.edu/palliative/curriculum/

University of Maryland: Online Master of Science and Graduate Certificates in Palliative Care
https://graduate.umaryland.edu/palliative/

Reports

Lancet Commission Report (October, 2017)
https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(18)30082-2/fulltext

White Paper by CUGH’s Palliative Care Working Group: An Interdisciplinary Working Group to Advocate Universal Palliative Care and Pain Relief Access
https://doi.org/10.1089/jpm.2020.0085

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
https://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf?ua=1