Palliative Care Working Group

CHARTER:

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

DEFINITION OF PALLIATIVE CARE:

https://hospicecare.com/what-we-do/projects/consensus-based-definition-o...
Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.

Palliative care: Includes, prevention, early identification, comprehensive assessment and management of physical issues, including pain and other distressing symptoms, psychological distress, spiritual distress and social needs. Whenever possible, these interventions must be evidence based.

• Provides support to help patients live as fully as possible until death by facilitating effective communication, helping them and their families determine goals of care.
• Is applicable throughout the course of an illness, according to the patient’s needs.
• Is provided in conjunction with disease modifying therapies whenever needed.
• May positively influence the course of illness.
• Intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process.
• Provides support to the family and the caregivers during the patient’s illness, and in their own bereavement.
• Is delivered recognizing and respecting the cultural values and beliefs of the patient and the family.
• Is applicable throughout all health care settings (place of residence and institutions) and in all levels (primary to tertiary).
• Can be provided by professionals with basic palliative care training.
• Requires specialist palliative care with a multi-professional team for referral of complex cases.

ORGANIZATIONS (*denotes annual conference)

African Palliative Care Association*

Kampala, Uganda
www.africanpalliativecare.org
APCA’s mission is to promote and support affordable and culturally appropriate palliative care throughout Africa.

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.

Foundation for Hospices in Sub-Saharan Africa

www.fhssa.org
FHSSA, an affiliate of NHPCO, helps to generate resources and technical support for hospice organizations in sub-Saharan Africa, primarily through developing partnerships between USA and African hospice and palliative care programs.

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

Help the Hospices

www.helpthehospices.org.uk
Help the Hospices wants the very best care for everyone facing the end of life. It supports its members and other organizations as they strive to grow and improve end of life care throughout the UK and across the world.

Hospice Association of America

www.nahc.org/haa
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

www.lancaster.ac.uk/shm/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.

Open Society Foundations International Palliative Care Initiative

www.soros.org/initiatives/health/focus/ipci
The goal of OSFs’ International Palliative Care Initiative is to improve end of life care for patients and their families, with a special focus on vulnerable populations including the elderly, children, and patients with cancer or HIV/AIDS.

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.

JOURNALS

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/site/about

Death Studies

New York: Routledge
www.tandf.co.uk/journals/titles/07481187.asp

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
www.liebertpub.com/publication.aspx?pub_id=41

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

FILES

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

On-Line 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 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

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

World Health Assembly Document 67.19
http://apps.who.int/medicinedocs/documents/s21454en/s21454en.pdf

Potpourri

COVID-19 Palliative Care Resources
World Hospice and Palliative Care Day
World Hospice and Palliative Care Day is organized by a committee of the Worldwide Hospice Palliative Care Alliance, a network of hospice and palliative care national and regional organizations that support the development of hospice and palliative care worldwide.

Chair(s):