November 2011 - Internet Resources Digest


Resources on Palliative Care

Internet Resources Digest
November 2011

American International Health Alliance
LRC project

The Internet Resources Digest (previously – Health Resources Digest) is distributed free of charge as a service of the American International Health Alliance (AIHA). If this document is to be re-distributed or posted on another Web site, we request that it be posted in full/without alteration, and credit is given to the AIHA as the source of the document.

Resources on Palliative Care

A.    International Organizations and Projects

International Association for Hospice and Palliative Care

IAHPC 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.“. The web-site contains information about its programs, conferences, full-text publications (including Hospice and Palliative Care Manual), training opportunities, educational resources, treatment guidelines and position statements, assessment and research tools, links to other internet resources on palliative care.

International Observatory on End of Life Care

The aim of the International Observatory on End of Life Care is to undertake high quality research, clinical studies, evaluation, education, advocacy and consultancy to improve palliative and end of life care for patients and family carers. The Observatory works closely with the local health and social care community in the North West, as well as nationally and internationally. Its research focuses upon the following areas:

  • Clinical studies, particularly on the management of pain and other symptoms
  • Understanding the needs of family and carers and planning interventions to support them
  • Addressing the needs of older people including those with dementia and improving the provision of end of life care in residential and nursing homes
  • Public education and awareness of end of life issues
  • Research across the lifespan in chronic illness and end of life care, from childhood to old age.


African Palliative Care Association

The African Palliative Care Association was established in 2004, and it seeks to promote and support affordable and culturally appropriate quality care across Africa. To achieve this goal, they form collaborative partnerships with new and established national palliative care associations and provide a technical assistance program that includes advocacy and policy influencing, education and training, standards of care, and monitoring, evaluation and research.

APCA publications:

Africa Health published a Special report prepared by the Africa Palliative Care Association on palliative care in Africa in its July 2011 issue. (7MB)

A Review of Home based Care Models and Services for People Living with HIV/AIDS within and outside Africa. 129 pp.

Downing, Julia; Powell, Richard; Mwangi-Powell, Faith. Home-Based Palliative Care in Sub-Saharan Africa. Home Healthcare Nurse: May 2010 - Volume 28 - Issue 5 - p 298–307. Access to full-text through HINARI.

National Cancer Control Programmes, World Health Organization (WHO) - Palliative care

This web-site offers WHO publications, documents, and abstracts related to cancer pain, terminal illness, and palliative care, and links to other related resources on the Internet.

Cochrane pain, palliative care and supportive care group

The Cochrane systematic reviews are based on the best available information about healthcare interventions. They explore the evidence for and against the effectiveness and appropriateness of treatments (medications, education, etc) in specific circumstances. This web-site lists titles of systematic reviews carried out by members of the Cochrane Pain, Palliative Care and Supportive Care Group, and includes links to abstracts. New and updated reviews are indicated. Access to full-text reviews is available through HINARI.

B.    Collections of Resources

City of Hope Pain and Palliative Care Resource Center (COHPPRC)

The purpose of the COHPPRC is to serve as a clearinghouse to disseminate information and resources that will enable other individuals and institutions to improve the quality of pain management. The COHPPRC is a source for collecting a variety of materials including pain assessment tools, patient education materials, quality assurance materials, research instruments and other resources. Over 400 materials are available to download on that web-site free of charge. A special section of the site includes a comprehensive list of links to various professional and patient organizations focused on pain management or end-of-life care.

Growth House

This is a subject gateway to palliative care and end of life resources on the Internet, aimed at those with a life threatening illness. It gives you free access to over 4,000 pages of high-quality education materials about end-of-life care, palliative medicine, and hospice care, including the full text of several books. Those materials are both for the general public and for health care professionals. The site includes topic pages covering a range of subjects, professional forums and mailing lists,videos  and information for professionals, that explains major issues in hospice and home care, palliative care, pain management, grief, death with dignity, and quality improvement. They also provide disease-specific guides for heart failure, end-stage renal disease, and cancer  resources.

Palliative Care Matters

Palliative Care Matters is a web-site intended for health-care professionals working in palliative care or related fields. News and information on developments in this field, abstracts of relevant journal articles, titles of books and theses and a moderated discussion forum are available. An important feature of the site allows you, as a registered user, to automatically identify new items that have been added since your last visit.

C.    Journals

BMC Palliative Care

BMC Palliative Care is an open access journal publishing original peer-reviewed research articles in the clinical, scientific, ethical and policy issues, local and international, regarding all aspects of hospice and palliative care for the dying and for those with profound suffering related to chronic illness
URL: collected resources : palliative medicine

Collected resources on palliative medicine from the online British Medical Journal. BMJ collections list the most recent BMJ articles (usually with links to the full-text) in a subject area or specialty, and also links to relevant books and journals from the BMJ Publishing Group.

The Internet Journal of Pain, Symptom Control and Palliative Care

Open access peer-reviewed journal published twice a year. Publishes original research, case reports and review articles

Journal of Hospice and Palliative Nursing

Journal of Hospice & Palliative Nursing (JHPN) is the official journal of the Hospice & Palliative Nurses Association and is the professional, peer-reviewed journal for nurses in hospice and palliative care settings. Focusing on the clinical, educational and research aspects of care, JHPN offers current and reliable information on end of life nursing. Feature articles in areas such as symptom management, ethics, and futility of care address holistic care across the continuum. Book and article reviews, clinical updates and case studies create a journal that meets the didactic and practical needs of the nurse caring for patients with serious illnesses in advanced stages. Continuing education, membership and certification association updates and favorite poems/stories are also included. Access to full-text through HINARI.

Journal of Pain and Symptom Management

Official Journal of the American Academy of Hospice and Palliative Medicine, the National Hospice and Palliative Care Organization, and the U.S. Cancer Pain Relief Committee. The Journal of Pain and Symptom Management covers all aspects of pain management and palliative care. It is aimed at both clinicians and researchers working in pain management, palliative care and hospice care, including oncologists, anesthesiologists, neurologists, pharmacologists, nurses, therapists, psychologists and psychiatrists.  Access to full-text through HINARI.

Palliative Care: Research and Treatment

Palliative Care: Research and Treatment is an international, open access, peer reviewed journal which considers manuscripts on the clinical, scientific, and policy issues surrounding palliative care

Palliative and Supportive Care

Palliative & Supportive Care is an international journal of palliative medicine that focuses on the psychiatric, psychosocial, spiritual, existential, ethical, and philosophical aspects of palliative care. Its aim is to serve as an educational resource for practitioners from a wide array of disciplines engaged in the delivery of care to those with life threatening illnesses along the entire continuum of care from diagnosis to the end of life. The journal's scope is broad and relates to all aspects of palliative medicine that do not directly or exclusively deal with the administration of palliative care or hospice services, or with the primary management of pain and physical symptoms in palliative care. Access to full-text through HINARI.

D.    Education/Training resources

The Center for Palliative Care Education

The Center for Palliative Care Education is an educational resource center and training program. The Center for Palliative Care Education is a project of the University of Washington's Northwest AIDS Education and Training Center. Each module consists of interactive lectures in the form of Power Point presentations, slide notes, skills building and experiential exercises, learning objectives, sample agendas, evaluation forms, suggested handouts, and a resource list. This resource list is divided into topics that correspond with the training modules being developed by the project. It can be used by clinicians to increase knowledge and skills, and by health educators to aid in the development of trainings and to give as handouts to trainees.

Current Learning in Palliative Care

The Current Learning in Palliative Care Index (CLIP Index) is a set of free 15 minute online tutorials aimed at providing health care professionals, carers and teams with the knowledge and skills needed in their daily work. The tutorials comprise a series of work sheets set at introductory, intermediate and advanced levels, and cover: an introduction to palliative care, helping the patient with pain, helping patients with symptoms other than pain, moving the ill patient, psychological needs, helping the patient with reduced hydration and nutrition, procedures in palliative care, helping people with communication difficulties, the last hours and days, and bereavement. The tutorials and worksheets can be used by individuals or by small groups to help with developing shared dialogue and learning. The content has been designed, and is regularly updated by, doctors, nurses and other professionals involved in clinical palliative care practice.

End of Life/Palliative Education Resource Center (EPERC)

This site is intended to support individuals involved in the design, implementation, and/or evaluation of End-of-Life/Palliative education for physicians, nurses and other health care professionals. Major content areas in EOL/Palliative education include: pain, non-pain symptoms, communications skills, ethics, terminal care, and clinical interventions used near the end-of-life. Fast Facts are peer reviewed, one-page outlines of key information on important end-of-life clinical topics for end-of-life educators and clinicians. There  is also  a collection of pre-selected articles, books, teaching materials and web resources.  The site has been designed for use by medical school course/clerkship directors, residency and continuing education program directors, medical faculty, community preceptors, or other professionals who are (or will be) involved in providing EOL instruction to health care professionals in training.

The EPEC Project: Education on Palliative and End-of-Life Care

The EPEC Project, through the Feinberg School of Medicine, Northwestern University, teaches fundamental palliative care skills in communication, ethical decision-making, psychosocial considerations, and symptom management. The EPEC Curriculum is presented in sixteen modular topics, that cover a range of issues in palliative and end-of-life care. EPEC distance learning modules may be used as a supplement to other EPEC materials or as a refresher on the core skills of palliative care. The complete EPEC Curriculum is available as Online Learning for CME credit (each module for $30).

The Palliative Care Toolkit - Improving care from the roots up in resource-limited health settings

'Palliative care toolkit: Improving care from the roots up in resource-limited settings' provides a holistic and 'can do' approach to delivering care to those with life-limiting diseases. A training manual has been produced to support education and training using the Toolkit.  Palliative Care Toolkit  is now also available in: Bengali, French, Mandarin, Portuguese, Russian, Spanish, Swahili. The Toolkit and Training Manual are free to download.  If you work in hospice and palliative care in a resource-poor setting or are planning to travel to a resource-poor setting to deliver training, you can request hard copies of the Toolkit and the Training Manual.

E.    Guidelines

The National Consensus Project for Quality Palliative Care (NCP)

“The purpose of the National Consensus Project for Quality Palliative Care is to promote the implementation of Clinical Practice Guidelines that ensure care of consistent and high quality, and that guide the development and structure of new and existing palliative care services.” The guidelines, developed through consensus of five major United States palliative care organizations, describe core precepts and structures of clinical palliative care programs.

Palliative Care Guidelines (NHS Scotland)

The third edition of the Palliative Care Guidelines has been launched in print format and is available in an A4 and pocket edition. The A4 pages are available on this site along with other guidelines, patient information and online resources for professionals and patients. The Palliative Care Guidelines reflect a consensus of opinion about good practice in the management of adult patients with a life limiting illness. They have been developed by a multidisciplinary group of professionals working in the community, hospital and specialist palliative care services and approved by local Formulary and Clinical Policy Committees. There is a separate section covering paediatric palliative care on this website. Every effort has been made to ensure the accuracy of the Guidelines contents and that evidence informed information has been included in line with the AGREE Criteria.


National Comprehensive Cancer Network

The National Comprehensive Cancer Network is an alliance of 21 of the world’s leading cancer centers, working together to develop treatment guidelines for most cancers. Over the past 15 years, NCCN has developed an integrated suite of tools to improve the quality of cancer care.  The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) document evidence-based, consensus-driven management to ensure that all patients receive preventive, diagnostic, treatment, and supportive services that are most likely to lead to optimal outcomes.The NCCN Guidelines are a comprehensive set of guidelines detailing the sequential management decisions and interventions for the malignant cancers that affect 97 percent of all patients with cancer. In addition, separate guidelines relate to major prevention and screening topics and another set of pathways focuses on the major supportive care areas.

International Guideline Library

The International Guideline Library contains more than 8000  guidelines, evidence reports and related documents, developed or endorsed by Guidelines-International-Network member organizations. The search the International Guideline Library is now publicly available. However, only members will be able to: access the detailed information, save their searches, combine their searches, add retrieved information to their clipboard, export the references toward EndNote or RefMan and more. Search for „palliative care“ guidelines returned 87 items.

Internet Resources Digest Forthcoming Topics [Provisional]

EBM Journal Clubs
Point-of-Care Resources
Monitoring and Evaluation Resources
Critically Appraised Topics

If you have a suggestion for a Digest topic, or would like to contribute information about Internet resources, then please contact ibra[at]

Compiled by Irina Ibraghimova, PhD

Library and Information Management Specialist
HealthConnect  International

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